My sister, Brittany, put together a gorgeous book — Mercies in Disguise — of all the CaringBridge entries and comments made during my illness and recovery back in 2013-2014. Thank you Brittany for this thoughtful gift; which, I'm sure, quite an arduous task! What a labor of love and kindness— not only putting the book together but also the beautifully written journal entries, the comments posted, the prayers lifted, and the acts of love towards me and my family that it recorded. One comment noted that, during one 5-hour period, over 1,000 people had visited the site. Wow.
There were literally thousands of people across the country praying for us, praying for me! It is no wonder that I recovered to where I can enjoy my life and enjoy my family! Truly, I'm surprised did not grow new hands and feet!
As I read and reflect on the stories (of which there were many) in this book, I am struck with a myriad of emotions -- But mostly I am grateful. Grateful for my life, my faith, my husband, my children, my family, and friends. I could never in a million years thank everyone for their part in my story. All I can do is face every day, every struggle, every failure, every success, and every miracle with gratitude, perseverance, and HOPE. Whether your contributions were physical, spiritual, or financial in nature, I thank you. And I’ll continue to thank you all the days of my life.
Mercies in Disguise covers that first year of experiences from my family’s point of view. And it is beautiful. But I am also writing my own book, from my perspective. So Mercies in Disguise won’t be the last book you’ll see with my name on it. My dear friend Judy Boles has been helping me transcribe my story, my experiences, and my thoughts. It’s slow-going, but it is coming. My book is on its way!
I have always dreamed of having my own private counseling practice. That was what I had always planned to do once the kids were in school. I dreamed of a quiet office in a little old house, full of character and love. I'd have a nice big desk and a place on the wall for those hard-earned diplomas and awards. It would be peaceful and relaxing, complete with a big chair and yes, the therapist’s couch. (Little known industry secret: we don't hate it too much when we have a “no-show” appointment because that presents a perfect opportunity for a nap!)
But back to my dream. In my dream, I'd love to work. I'd love my clients, and I'd love my office-mattress. I would go home at night exhausted but fulfilled in the knowledge that I had helped someone that day.
I'm here to tell you that dreams come true. Prayers are answered. Things might not look exactly the way we pictured, and the roads to get there might be longer, curvier, and more arduous than we’d like; but dreams can and do come true.
There was a time there, a few years back when I thought the dream was over, that I might just as well let it die. Even if I was able to physically get to an office and hand someone my business card, who in their right mind would dream of hiring me as their counselor? Some folks would immediately dismiss me for the assumption that my disabilities would prevent me from doing my job, or doing it well. Others would take one look at me and run out the door because of the assumption that I'd judge their struggles as too petty or small next to what I've been through. Ironically, I was projecting my own doubts.
But, no, I'm a fighter. And fighters like to win. And winners hate to lose. And this is my dream, so butt out, doubters and demons!
These days I am seeing more and more how my traumatic experience, my pain, my suffering, my difficult journey back to life, even my daily struggles with ornery robotic hands - they all have purpose.
I've discovered that the struggles I've endured give me a window into the experiences of loss, pain, frustration, fear, shock, denial, guilt, shame, anger, blame - the myriad of emotions that I “get” in ways I'd rather not.
But these new understandings help me empathize and sympathize, because there is one feeling no one should have to endure. And that is loneliness.
Now, as a counselor, I can struggle with clients. I can more easily sit with them in their pain, uncertainty, and disappointments. This is empathy. This is a way of being present that you can't learn in any textbook. I had studied, trained, practiced, and, to some extent, succeeded as a therapist before. (Getting a license in Counseling is no joke). But sepsis, amputations, pain, loss - these have been my teachers.
What happened to me in 2013-2014 was (and still is) horrendous. But God makes good of all things. Indeed.
Being a counselor, in my own office, is joy. It fulfills me like nothing else. Recently, I was catching up with an old friend on the phone, telling her about my business. (We hadn't talked in a long time so she obviously didn't know I'd gone back to work.) Like me, she had recently rejoined the workforce after a hiatus to care for her young ones. Our experiences of going back to work are hilarious in their similarity - we were completing each other’s sentences in no time at all.
Through the course of our conversation, we developed a terrific analogy (I love analogies), and nothing better describes my experience of living out my career dream:
I love being a mom. I've been incredibly blessed - I've gotten to (mostly) stay home with my babies for fourteen years! I cherish that time with my little ones, and I'll always treasure the years I've spent at home.
But going back to work? It's been nothing short of exhilarating! And it feels like I am leading two separate lives. I'm still the mom that the kids have always known, and I am extremely lucky that, on most days, I am here to welcome them home off the school bus, help with homework, and drive carpool. Not much has changed in their world. Little do they know that I have a secret identity - I'm actually a superhero! Sshhh!
Sometimes I announce that it's time for mommy to go to work! I'll leave the house as their sameoold mom, but then I stop at the nearest phone booth, change out of my mom jeans and into clothes that match, and then “Off she goes to save the world!” - one client at a time.
I'll head to my sanctuary (aka my office) and meet with several clients, using all my superpowers... My head and my heart!
All too soon, the latest dames and damsels in distress are taken to safety, and it is time to return to my other identity. So I change back to wife/mom mode, messing up my hair and makeup for effect, tiptoe through the back door, and finish out my day without anyone being the wiser.
Ok, so admittedly, this fantasy is a bit much. (And a bit hokie). But the exhilaration is real. I truly do feel like I have secret powers - skills and knowledge that no one knows (or remembers) I have. Not even me. And I've worked hard to get to superhero status. So I deserve the costume and cape, right?
So, for my newest baby’s (my business) six-month checkup, so to speak: the results are in!
Kristan Seaford, LPC, PLLC is a healthy new business! Her growth is slow and steady, just my speed! I'm still speaking to groups large and small, so keep sending opportunities my way. But, for now, my focus is on counseling.
My clients have had issues ranging from chronic pain to general anxiety and panic disorder. I'm working with several couples on strengthening and enriching their marriages. And I seem to be developing a specialty with high school and college students who need help managing stress and anxiety in this world of pressures that my generation never had to face.
I accept most insurance plans and am contracted as a preferred provider with Cigna and United Healthcare/Optum. My schedule is happily filling up, and I have even managed to successfully submit claims electronically and receive payments from both companies. (For those who have not worked with insurance from the provider side: this is quite a feat!) I also work with Open Path for uninsured and underinsured clients, and I happily accept private pay clients as well.
Last week marked the four-year anniversary of my hospital homecoming. Everyday, with every step I take, I'm reminded of all that was taken away from me and of all the things I can't do anymore. But this. This is something that's been given to me.
My job reminds me of how blessed I am. I can still listen. Be present with a person. Grieve with a person. Calm anxieties, increase self esteem, help people make changes in their lives. In short, I can help a client reach his/her full potential. Now that I can do. After my illness, God not only left me with the ability to be a counselor, he left me better equipped to be the counselor I had dreamed of being.
God makes good of all things. Indeed.
Every day I get the honor of knowing someone deeply; and, as I earn their trust, clients often share things with me that have never before crossed their lips. I get to see the world from new and different perspectives. I learn at least as much from my clients as they learn from me. I step outside of myself and whatever struggles I might be dealing with that day. I change the channel from the endlessly looped list of my own worries and stressors, to my client's channel, whatever it may be that day. Oftentimes I'll sit down, and the next time I look up, it will have been over SIX hours! Time flies when you love what you do. On top of that, I almost always wish I could stay at the office longer. But when the clock strikes dinnertime, working moms of five turn into pumpkins. (Wait, wrong fantasy world…)
When a client session comes to an end, I often marvel (get it, Marvel?) when someone pulls out their checkbook to take care of their copay. All this, and I get paid to do it! I feel so good when I can hand Brook a little pile of checks at the end of the week. I'm starting to do my part! Oh that feels good. Dreams really do come true.
And God makes good of all things. Indeed.
Anybody out there wondering how I am doing? (Aside from my husband's string of comedic updates on social media?)
I have not blogged in months. Months! My excuse? I've been busy.
Now, it is normally a big pet peeve of mine when people say they've been "busy." (I've often been the person standing in line at Starbucks behind the lady saying, “Oh, I’ve just been so busy.” As if busy was code for “important.” She goes on complaining - in this case humble bragging - she has just been promoted at work, she'll be managing hundreds of employees, little Johnny has started practicing for his traveling soccer team; and she has to balance all of this with Katie’s ice skating career, which is really taking off! The conversation goes on to sound like a Christmas letter of the worst kind. All because the speaker is just so "busy!")
But in this case I truly tell you that I've been busy out of sheer delight because all the things that are making me busy are positive things! No surgeries, no devastating doctor's appointments, no prosthetics that are broken beyond repair. With a little fear that I am tempting fate by saying this, I want to report that I finally feel like I have hit a marvelous plateau and sense of “normalcy.”
In my case, I say I am busy with a huge sense of gratitude. I am still sort of amazed that I am driving carpool and making dinner for my family. I've always been given a “pass” when it comes to contributing to the church potluck or bringing an appetizer to a dinner party. Well, I am excited to report that last weekend I brought a (very simple, but time-consuming for me) pasta salad to the covered dish lunch at church. All the other ladies simply slipped their dish into the church kitchen before service and called it a day.
But don't think I didn't loudly and proudly plop mine in there so that everyone would notice. I did everything I could to draw attention my way, announcing: “Here's MY pasta salad! Where shall I put it?” When no heads turned, I cleared my throat and repeated loudly: “Here's MY pasta salad! Where shall I put it?”
I definitely mentioned to some folks in the lunch line that my pasta salad was “further down the banquet table, so you should save room on your plate.” You could even hear me humbly bragging and fishing for compliments: “My pasta salad was edible, huh?” I even received the best compliment of all - I was asked if we could use what was left over for the funeral reception that would take place the following day. “Of course,” I said. “It was just something I threw together. I've been so busy.”
In short, I am overjoyed when I tell you that our household is crazy and chaotic and busy - just like any other family of seven!
Conquering everyday feats is becoming more and more common for me. In fact, I often forget to notice them. Or feel grateful for them. Or, most importantly, give myself props for them. From time to time (OK, most days), I get overwhelmed by my full plate and tend to focus on how long things take, how slow I am, how messy the house is, and all the things I still can't do.
But I am doing things now that I never would have thought possible! I truly am living a more normal life than I ever imagined - so if you see me around some day soon, say, “Kristan, did you ever think you'd be able to… Grocery shop, volunteer at school, hold down the fort while Brook went out of town, hold down a job, fly to New York at the drop of a hat?” Remind me how lucky I am.
And that, all things considered, my update is that I am doing pretty great.
My husband and I had plans. Brook would continue working as an insurance executive. I’d stay home with the kids until the twins went to kindergarten, at which point I'd go back to work 25 hours or so a week as a Licensed Professional Counselor. I'd then be able to contribute to our monthly budget, AND we'd be able to save for college. Ha.
Ha. Ha. Ha. That's God giggling.
Then Jeannie Bean came along. Not planned. (Though embraced.)
New plan: I'd stay at home with the kids for four or five more years, then I'd go back to work. Secretly, I was thrilled. I love babies, and I loved staying home with my babies. I knew that not everyone gets to stay home with their babies, but Brook and I had vowed to make it work for as long as we could.
Then God called Brook to be a Lutheran Pastor. Not planned. So we made a new plan: Brook would continue working full-time as an insurance executive while going to a distance education program at Luther Seminary until it was time to do his one-year internship, at which point he'd quit his day job and dive fully into seminary. One year later, he'd be a full-time, full-fledged pastor. Somewhere in there, I'd go back to work full-time as a Licensed Professional Counselor.
Ok, life just got a bit harder. But Brook would be fulfilled and happy as a pastor. We'd be fulfilling God's plan. It was a new plan, but we still had a plan. We could do this. Ha.
Ha. Ha. Ha. That was God giggling again.
Then catastrophe hit. Suddenly, I got so sick that I almost died. By a miracle, I lived. But my hands and feet did not. Both hands were amputated below the elbow. One leg was amputated below the knee. I got to keep the other leg, but that foot was ”compromised,” meaning that I lost my toes and part of my heel. That heel would never fully heal, so it caused all kinds of problems and and all kinds of pain.
Could I take care of myself? Could I take care of the kids? Could Brook continue to follow his dream (and, more importantly, God's call) of becoming a pastor? Could I work? How could we pay for our medical bills and prosthetics? Moreover, how could we support our family? How could we (financially and physically) get dinner on the table? How can we take care of the kids?
Our family, friends, church, community, even strangers chipped in and not only got dinner on the table but they also raised a ton of money to pay for my medical bills and some pretty amazing prosthetics. With God's help, I recovered. I worked hard, and I figured out how to (mostly) take care of myself and the kids. Brook worked extremely hard, all the while taking care of me and the kids. He graduated from seminary! He got called to an amazing, local church. So, he does get to be a pastor after all! And we don't even have to move, so our family and community can continue to put their arms around us and help us take care of the kids and get dinner on the table!
Brook’s salary will cover most of our expenses. But, because I had been a stay-at-home mom when I got sick, I did not qualify for social security/disability pay. This could/should be a whole different blog post, op-ed, and fight against the federal government. But who has time or energy for that? We're choosing to face forward and remain positive.
But what's our plan? Umm…
Can I physically and logistically handle taking care of the kids and holding down a job? Definitely not full-time, but possibly part-time. Can I make enough money to fill the gap between what Brook earns and the family needs? Will anyone hire me? Do I have something to give this world?
Damn right, I do.
I have an amazing education. I'm intelligent. I have a passion for helping people, and I'm good at it. I have a purpose. I've been through hell, and I'm living to tell about it. I have a message to spread. I'm a great speaker. And I'm a great counselor. I can do this.
Ever since I got sick, (once I could get out of the house and walk to a podium,) I've been speaking to groups of all sizes. I've been shouting my hope and joy at all types of events, everything from corporate to Christian. I've built a bit of a business in motivational and inspirational speaking. Now that I've done so much of the hard work in the process of healing, I'm ready to help people on an individual level as well. I've helped new amputees through the tough parts of healing on a volunteer basis. But I've missed counseling as a career.
I've kept up my industry knowledge, my skills, and my licensure as a counselor such that I'm completely qualified and capable to work as a counselor.
But, like many moms out there, I've been out of the work force for a number of years.
I've been extremely lucky that Brook has always earned enough and has been willing to join me in a lean lifestyle so that I've been able to stay home with our kids up until now. The promise and the expectation has always been for me to contribute to our bottom line once the kids were in elementary school.
Whether or not I have a disability, it is time for me to go back to work. I no longer have this “choice” in the matter; we now need two incomes to make ends meet. Unless I work, we cannot pay our mortgage, our medical bills, or our grocery bills (even at my favorite store in the world, Aldi).
I've adored those (many) hours and days of snuggling my (many) babies. But I've also missed the sense of efficacy and accomplishment, satisfaction, and adult conversations that working brings. Most of all though, I've missed using my natural leanings, intellect, and professional skills to help people.
All through my years as a stay-at-home mom, I've retained my licensure just so I'd be ready when the time was right to go back to work. And I am ready. Except I'm missing just a couple of substantial tools — I'm missing hands. They come in “handy” when filling out the necessary paperwork, taking case notes, and presenting myself as capable.
Still … I can do this.
Let's talk about the specifics: I want to keep speaking and spreading my story of miracles and hope. But I also want to fulfill a dream I've had for twenty years -- to open a private practice for therapy and counseling. Maybe not with a full case load. That was never the dream anyway. I want just enough clients to fill my heart and bring home a living. But not so many that I'm too stressed to simultaneously take care of myself and my family.
This won't be easy. It would be a big feat for anyone to master, let alone a quadruple amputee!
Still, if I can beat sepsis, learn to walk again, climb to the top of a rock wall, travel across the country, downhill ski, paddle board, and ride a bike along Lake Tahoe, I CAN do this. And I'll picture all of these things as I plunge back into the workforce.
I can DO this!
So, yes! I'm headed back to work. I'll continue to speak to larger groups, but now I'll also be working with individuals on facing their own challenges and difficulties. I'll be subletting a friend/colleague's office, and it's located exactly where I'd want it to be – downtown Matthews.
As of August 1st, "Kristan Seaford, LPC" is open for business! Which is simultaneously exciting, exhilarating, and terrifying,
Please pray for me to attract enough clients, to help people and contribute to society, to adequately care for myself and my family, and to join my husband in financially supporting my family. Here I go.
To express an interest in individual, couples, or family counseling, click here.
Hmmm...As I sit here a week after returning from my trip to the No Barriers Summit (it has taken me this long to recover from jet lag and the chaos that is called the last week of school in a house with five kids), I have so much to recount and so many conclusions I've drawn. But I have no idea where to start...
So, the beginning seems like a good place, right?
The flights out to CA were as uneventful as things get for a family with a disabled mom and five kids on their first airplane rides. Meaning that our day of travel was hilarious, to an outsider. We must have looked like a gaggle of geese, each with our own rolling suitcase.
At the Charlotte airport, the kids delightedly turned circles, in awe of all the unfamiliar people, sites and sounds. (Except for 14-year-old Ben who was already a travel expert and practically bored after his one-way flight to Ohio a few summers back.) Even our firecracker of a four-year-old, Jeannie, glued herself to my side for most of the time.
Yes, there was excitement (and questions flying) in the air among the Seafords. As we walked down the aisle of the cabin in the plane, Brook and I just kept making eye contact with our fellow passengers, smiling and apologizing, smiling and apologizing. We imagined that the other passengers must be gritting their teeth and wishing they'd taken an earlier or a later flight. To them, the bus system must have been looking better and better. Or at least quieter!
But truthfully, everyone was incredibly gracious and understanding of our chaotic crowd, even when there were more than seven spats over who was sitting next to Jeannie. (I was not innocent in this department - I just wanted to see her reaction when we actually left the ground, OK?) Even the flight attendants offered us mercy - in the way of continually feeding my husband Brook free biscotti and bloody mary's.
Jeannie was wide-eyed and mesmerized at take-off, yet I was dismayed at how quickly she was “done with that show;” she wanted to shut her window shade and play on my iPad. I kept trying to divert her attention to all she could see out the window, but she kept returning to the topics of her next snack, lollipop, or dollar-store prize. Unbelievable.
We had a few blips with connecting flights not leaving enough time for meals; but luckily I had stocked my back pack with granola bars and gummy bears, so we made it to Lake Tahoe without a child fainting from pangs of hunger and thirst.
Yay! We made it Tahoe! And we began to meet some folks who didn't look like the majority of the population. Walking sticks for visual impairments, ASL interpreters for hearing loss, prosthetics, and wheelchairs all became commonplace. But my kids were much more impressed by all the service dogs, who they all knew by name within minutes. Our favorite dog of the weekend, Potter, was a yellow lab who could carry groceries, open doors, and (best of all) take his owner's socks and shoes on and off!
Almost as soon as we got to the resort, I met Sophia, my new seven-year-old hero with several prosthetics that fit on to her shorter arm. She chooses a different one each day, depending on her level of activity. Sophia even has a "sports arm" that she wears to play baseball, basketball, soccer, or to "cirque" practice. Yes, you read that correctly - this little girl who was born without a hand participates in "Cirque De Soleil," specifically aerial dancing and acrobatics. I love her! She has no barriers to sports and no problem making quick friends with my girls. Her mom and I had an instant connection as well. I was going to LOVE this weekend!
And I did. Oh how I did. I think my eyes were opened wider to my surroundings than Jeannie's were when our airplane left the ground! And, a week later, I am still flying.
As I had hoped, I was able to participate in several adaptive adventure sports. I tried an adaptive bike (recumbent-style with hand brakes customized for my prosthetics) on a 15-mile trail that sidled along the Truckee River. I climbed on a rock wall, an activity I'd tried before. But this time I summited the wall, and I gloriously rang the bell at the top!
I kayaked and canoed; and then I surprised even myself by standing on a paddleboard and paddling on Lake Donner. (Praise be to God that I didn't spill into that ice-cold water like my older kids did!)
After three years of obstacle after obstacle, words can't describe what it was like to cycle, paddle, and climb without barriers again. Exhilaration! Laughter! Fear! Gratitude! Reward! Joy! Yes, I experienced all of those! I was amazed that after all this time my muscles remembered what it felt like to have two hands and two feet again! Not only was I able to do the sports I used to do, but I also found myself trying things that I never had before. I was taking more risks, not less; and I felt more confidence in my abilities than ever before. On several different occasions I actually forgot that I was disabled.
I've had the opportunity now to see a few pictures and videos of myself from last weekend. Interestingly, I was almost surprised to see the adaptations, equipment, and people that were assisting and allowing me to cycle, paddle, climb, and move. Because, in the moment, all I'd felt was able! Those adaptations were merely part of me.
Even though I noticed all the help I required, I didn't consider myself "less than," "dis-abled" or "unwhole." Instead, I felt stronger! I knew that, with my team, I could do anything. And I am eager to discover what adventure awaits!
My experience at the No Barriers Summit left me forever changed. But, even more than the adventure sports, it was the personal connections I made that proved to be the most defining of moments. My family and I, we met the coolest, most inspiring people! Paralympic athletes, singers and songwriters, artists and innovators.
We met people like Sarah Herron, the first contestant with a disability to compete on The Bachelor, who now spearheads a nonprofit that builds self-confidence in young girls with disabilities.
Then there was Liz Murray, the author of Homeless to Harvard, her memoir about spending her high school years living on the street but breaking barriers to achieve great things despite the economic, educational, and cultural differences she faced.
And, of course, I need to mention the founder of No Barriers, Eric Weihenmayer. (I got to have breakfast with this amazing man!) Several years ago, this born adventurer wrote a book about his experience as being the first blind man to summit Mount Everest.
His latest book, No Barriers, chronicles his days as the first to solo kayak through the Grand Canyon. He is a quick-witted gentleman who makes everyone in the room feel like their own "barriers" are mere mirage - when Eric is in the room, obstacles disappear.
The Seaford Seven also heard performers like Mandy Harvey. You may know her as the winner of last week's America's Got Talent! She's a deaf singer who takes her shoes off to feel the vibrations and "hears" the tones that help her sing on pitch and in time. The band X Ambassadors played as well; Ben had (of course) heard their music before; and, for about an “instant,” being with his family was cool enough to post on social media. We had arrived!!!
We met people who recognize "No Barriers" standing in the way of their dreams. Because, like the motto claims, "what's within you is stronger than what's standing in your way." Not everyone at the conference was "disabled." Some people and corporations attended for the sheer inspiration the weekend provided. Most were there to financially, physically, or emotionally support some person or group who is disabled. But all attendees were there to live a life without barriers.
Cabinets to Go was the corporate sponsor who donated the funds to bring my whole family to the Summit. A national company, they sponsored one person (or one family, as in our case), to travel to the conference. We had breakfast with the attendees representing Cabinets-to-go, and they thanked us for coming jusr as greatly and just as often as we thanked them. Their generosity and compassion was truly humbling.
An entirely unexpected result of our trip was what No Barriers did for our family unit. Yes, it helped my children learn to accept and interact with all sorts of people from all walks of life. Yes, it celebrated my kids' adventurous spirits and their courage in untried and unproven activities like archery, kayaking, and paddleboarding - even trying new foods! And yes, it increased my kids' self-confidence as they talked to new people of all ages, ethnicities, and abilities.
But the No Barriers Summit weekend also changed the culture in my family to that of a team! We worked together to find gate C6 in Phoenix, to keep each other's attitudes in check when we hungrily awaited the extremely late shuttle bus to the hotel, and to plan our days so that everyone got to do an activity they enjoyed. Before I knew it, I was commenting to Brook that the kids were all playing well, together!, in the pool. They didn't fight over who sat together on the flight home. And don't tell anyone this; but Caroline's head exhaustedly fell onto Ben's shoulder on the car ride home from the airport. (Don't worry: they are back to fighting like cats and dogs.)
Even before our weekend in California, I knew that my family could survive all kinds of trauma. But, for three years now, (ever since I got sepsis), we've been operating with an underlying tension in our family, always looking over our shoulders for the next trauma to hit. There was grief and healing that had yet to occur.
The No Barriers Summit taught us that, together, we can not only survive after a trauma, but thrive. Collectively, we've learned to let go, relax, take risks, trust, help others, and have fun together. We're looking forward to the next adventure that life will offer.
The point is (and perhaps this is the point) that our family unit is stronger than anything that may come in our way. With organizations like No Barriers, and with inspiring heroes like Sophia, Marlee Matlin, Mandy Harvey, and Eric Weihenmayer to inspire me and show me the way, I am stronger than my amputations. With innovators like Ottobock Prosthetics, Adventure Sports, Cycledifferent and more, we come away stronger than whatever’s in our way! And with nonprofits and foundations like No Barriers, people with disabilities like mine are encouraged and underwritten to have amazing experiences like this one as well as my ski trip with Adaptive Sports Association in Durango, Colorado, as well as my First Cycle, First Swim, First Dance, and First Climb experiences through OPAF (Orthotic and Prosthetic Activities Foundation). See my blog posts, "Independence" and "I Am A Skier".
What a weekend, what a trip.
** If you would like to donate or to co-sponsor a participant for the 2018 No Barriers Summit (in New York City!), click here.
Several months ago, I discovered an organization called No Barriers, whose tagline has now become my mantra and part of my email signature –
"What's within you is stronger than what’s in your way."
No Barriers is based on the idea that, for people with all sorts of abilities, participating in and conquering adventure sports increases self-efficacy and self-esteem. By offering over 50 adaptive adventure sports for people with disabilities, they empower people to break through their barriers, find their inner purpose, and contribute their very best to this world.
No Barriers' biggest event each year is called The Summit. They invite people with disabilities to come to a place of beauty and adventure. The locale changes each year, but this year it's in Lake Tahoe, California.
On their website, The Summit is described and promoted as follows:
"At the 4-day No Barriers Summit, you’ll be embraced by a community that knows what’s within you is stronger than what’s in your way. There will be speakers who ignite your passion, innovations that push your perceptions, and activities that shatter barriers...with a supportive community to help you along the way.
As many know, I have been trying to build a business of public and motivational speaking. So, I decided to 'shoot for the moon' and apply to be one of their speakers.
With high hopes, I sent an email to a mutual friend to introduce myself, as well as send a link to my website and speaking samples. Unfortunately, the event planner wrote back with the news that they had already lined up the speakers for this year's Summit.
However, this event planner was incredibly helpful with constructive ideas for improving my skills, target audiences, industry contacts, and promotional materials. She also said that I should definitely attend the event, even bring my whole family! She just knew we would love it and be forever changed by it.
"Ha! Ha!" I thought. "Like we could ever afford for me to go, let alone bring my whole family." In what I thought was a pretty snarky and sarcastic tone, I replied to her email with the question,
"Do you have scholarships for stay-at-home moms from suburbia, North Carolina?"
"Yes;" she wrote, "actually, we do!" And she included a link to the application.
"What?!?!... Seriously?!?! I was really sort of kidding!" I thought.
But, of course, I applied. Maintaining my "shoot for the moon" idea, I applied for a full, all-expenses paid, (even all the adventure sports!), trip for my entire family of seven.
It was a pretty extensive application process - reference letters from friends, colleagues, and doctors; essays, photographs, pay stubs (the scholarships are need-based in addition to the other qualifying factors), and a link to my web site and blog. Honestly, I was a bit overwhelmed by it all, and I knew that getting the full scholarship was a long shot.
Regardless of my low chances, I applied. And the waiting game was on.
But then I had a lengthy phone conversation with the director of development; and she explained that there are actually some extremely generous donors who love to sponsor whole families! I couldn't imagine this level of generosity; but I sure was moved by it.
The sweet, kind, development director told me a story of the first time she attended the event. She herself is blind. And she had grown accustomed to vacations with her own family where she would sit on the beach and wave goodbye to her family as they would leave for a nice long walk (or any of the big vacation activities, for that matter). She had grown acccustomed to waiting around while everyone else got to participate. She explained how, on the No Barriers trip; for the first time, she was the one participating while her kids sat back with eyes wide open at seeing her soar over all the barriers that had previously stood in her way.
After talking to her, I couldn't help but feel encouraged. And empowered. And hopeful.
"If we get to go," I thought, "it will be the epic family adventure. Four of my kids have never even been on an airplane before, let alone gotten to see or do things like skiing, mountain biking, white water rafting, or kayaking. In Lake Tahoe of all places!!!"
And so I waited. And dreamed. And waited. And waited some more.
But, eventually, I was starting to look for the thin envelope in the mail - the one with the letter that would thank me for applying, tell me there were a record number of qualified applicants this year, and encourage me to apply again next year.
But then, it happened. I got the phone call. That call I'd been waiting for!
We won!!! We get to go!!!
I'm a bit embarrassed by my reaction. I must have sounded like a schoolgirl... But here's what I said:
"I mean, like, for real, for real?"
She must have laughed out loud.
But, it's FOR REAL!
** Post Script: We leave tomorrow. It's a good thing that excitement and anticipation produce adrenaline and energy. Because I'll be up all night packing for myself and five kids! Check back here for details of my trip. Or just follow my husband on Facebook or Instagram...
Today I met an angel. At Aldi. It's true!
These things happen everyday, but sometimes, sometimes, they slap us so hard that we actually recognize them.
Today, I met an angel.
Let's back up a minute...
I have a lot of strengths. I am good at a lot of things. Driving is not one of them.
I take that back. I am a decent driver. I am just not a good parker. And this is nothing new. I was just as horrible when I had hands! Most of the time, it has more to do with my being distracted by children giggling, fighting, whining, or screaming. But my husband would say I'm just a little spacey.
You can tell this just by glancing at my van. There are so many scratches and dents that even my husband can't discern whether I've bumped or scraped the garage door again. (Bonus of an having an older vehicle!)
Suffice it to say that I "bump" things a lot.
However, today's "bump" was an unusual one. There may not be a new dent in my van, but I am forever changed.
It had been a typical Monday morning of running around with the kids. My older girls missed their bus, so I had to hurriedly drive them to school. I dropped Jeannie off at preschool (on time, for once); and I got Ben to his doctor's appointment (almost on time) to get the cast off his arm, just in time to receive the phone call that Maizie was sick and needed to be picked up. Tired yet?
With Maizie in tow, I raced in and out of Aldi, just in time to make it back to preschool for the one o'clock pickup. (Yup, it's still only one o'clock.)
While inching out of my parking space, I had turned around to look out the rearview window. All coasts were clear.
But then, BUMP!
I felt it louder than I heard it. Nothing more than a little tap really. Still, it was enough to scare me! I made sure Maizie was ok (she was), then jumped out of my van to see this LITTLE car, so little in fact, that its size explained its invisibility from my rearview mirror. (I have to admit my great relief that I couldn't have avoided her). It reminded me of an old-school Datsun, and its condition made my car look like I had just driven it off the show room floor.
Driving this LITTLE car was a LITTLE lady who jumped out and walked around to check her car for dents as I shouted my apologies and asked if everyone was OK.
I, too, scanned her car for an extra ding or dent, but it was impossible to tell because her LITTLE car was nothing but dents and dings. (It's probably not worth mentioning, but I never did check my own van - maybe I should get on that...)
That's when she saw me, I mean really saw me, disabilities and prosthetics and all.
She raised her hand and told me to "Stay put!" while she pulled into a parking spot. Anxiously wondering what would happen next, I followed her command and waited.
She got out of her car and walked towards me with purpose. And that's when I really saw her.
The LITTLE lady wore a toboggan on this warm-ish Spring day and had bits of gray hair peeking out around her face. She had leathery, well-worn skin and dressed in an eclectic mix of well-worn clothes. The one thing that stood out to me was that her shirt had big lettering on the front. It was written three times, one on top of the other,
I have to admit, I was afraid. This LITTLE lady had a gleam in her eye. She was forming the words she wanted to say to me. I thought for a moment that she might yell at me to "watch where you're going!" Then yell that I had no business driving with fake hands and feet, that I was a danger to society and to the child I drove around...
But, instead, her face softened, she smiled, and she proclaimed,
"Go. Go with grace."
"What? Really?" Was all I could come up with.
"Yes." She replied. "I humbly tell you to go with grace. I am humbly honored to say to you 'Go with grace.' Just go."
"Well...thank you," I mustered.
I almost turned around, jumped in my car, and sped off before she could change her mind. But, almost in a trance, I was drawn to her.
"I can see that you have been through enough in your life without having to worry about my old car. Everything is forgiven."
She went on...
"I want you to know that God had no part in this."
Pointing to my leg, she continued, "He doesn't do this kind of thing out of punishment or anger. He only wants good things for you. He only wants you to have every gift imaginable."
This LITTLE lady had big things to say. She kept repeating for me to go, yet something wouldn't allow me to leave. She kept telling me she wanted me to have grace and mercy.
She wanted to assure me that she was "not doing this out of pity, for that is a whole different thing all together." Instead, she wanted to "extend mercy. They are two entirely different things," she says. "No one wants to feel pity. Child, I am humbly honored to meet you, to know you."
"You are amazing! Look at all you do, and you exude such joy! People see you, and their attitude immediately changes from complaining to just gratitude!"
"And I have a message for you. I am here to tell you to write your story. I know you have one."
This LITTLE lady was not the first to tell me that I need to write a book. And, don't get me wrong, I would LOVE to write a book. I've thought about it, and I've even started to write a book. Several times, in fact. But it is overwhelming, to say the least. I have trouble with basic life skills - grooming, showering, and dressing! How can I possibly make time to write a book? Plus, need I remind you that I don't have fingers?
The doubts abound! Even if I could physically write a book, with dictation apps and such, who would publish it? Agents are not banging on my door, to say the least. Hiring a book shepherd or choosing to self-publish cost thousands and thousands of dollars. Dollars that aren't covered by a pastor's salary! In fact, I need to get a job and be bringing money in to the budget, not taking money out, for heaven's sakes!
As if she could read my thoughts, the LITTLE lady takes me by the shoulders, looks me straight in the eyes, and says,
"God loves you. He only wants the best for you. But He wants you to share your story."
"I will," I promise.
"What is your name, dear child?"
I tell her, and she goes on,
"Kristan, I've had a hard life. Nothing to this level, but I know your story is powerful because you, Kristan, are powerful."
At that point I ask for her name, and she replies,
"My name is Love."
I smile, for this had to be a joke.
"Yes," I say, "but what is your name? "
"Love is my name," she tries to convince.
I shrug and offer that I've always thought the words "God" and "love" could be used interchangeably.
She points to the word on her shirt, nods, and repeats, "My name is Love."
I tell "Love" that I had dreamed of writing a book and traveling around to share it, but that now I would definitely do it. I want to ask for more details (like how do I fund it!), but I also know that I am on a time crunch for preschool pickup. (Anyone who has ever had a child in preschool or daycare knows that you can not be late for pickup!)
"Love" then repeated, "Write your book. Spread this story. You have to tell people. Promise me you'll write that book. It will be big. It will be like Big Mike, that movie with Sandra Bullock!"
I smile and shrug again with nervous laughter, "Sure."
Again - "You need to speak, Kristan, go all over the country doing speeches, tell your story."
(Mind you, she couldn't even have known my story. For all she knew, I had lost my limbs trying to bomb a daycare!)
She sees Maizie and comments, "And you have a child! Through all of this, you are raising a beautiful child! I can take one look at her and know how happy she is!"
If only she knew that I actually had not one, but five children! But she never asked, and she never wondered aloud (like most people do), "what happened?"
This is when I just had to leave - it was past one o'clock already. The director of our preschool is an angel herself, and I knew she wouldn't mind my being a few minutes late; but still, I could not take advantage of her kindness.
I wanted to talk to LOVE more. I felt torn; but, in the end, I had to go pick up my baby girl.
So I hugged her, thanked her one last time for her kindness, and said goodbye.
Maizie, my eight-year-old, somewhat anxious child, was mesmerized. As we got back into the car, I was predicting that Maizie would soon burst into tears and tell me she was terrified.
But, no. Maizie was calm and collected.
"Gosh Mom, that lady was nice! Don't you think? She didn't even call the cops on you, and then she was just so....nice!"
When I got to Jeannie's school, I hugged her extra tight. And I plopped onto the chair in the office of Miss Tara, the preschool director. I must have looked pale as a ghost; and, by this point, tears were streaming down my face.
"What's wrong?" Miss Tara worried.
But then I told her that I had (literally) run in to "Love."
"You met an angel, Kristan!" she exclaimed. "Today, you met an angel!"
If anyone would know an angel when she saw one, it would be Miss Tara.
So, yes. I met an angel.
I know this story is unbelievable. It sounds crazy. Had you been there, you might have thought that "LOVE" was delusional, or that "LOVE" was my delusion.
But I have never witnessed something so real.
Still, I know that many will shake their heads and dismiss my story. Some will laugh out of nervousness and discomfort with the topic.
My own husband, a soon-to-be-pastor, was not particularly moved by my telling of it either. (His attention to the story ended with his relief that I wasn't getting punished for bumping Love's car!)
Even my Bible Study Class's reaction was mixed. Some shook their heads and turned immediately back to our course material, as if they were two unrelated topics. However, a few did believe that it was a "God moment" and that I should follow the command to write my book.
One woman was excited and smiled with pride, "Kristan, I think you have the beginning of your book."
Yes. Yes, I do.
And yet, I could have gone on with my day and my life, dismissing "Love" as just another crazy person I'd met at Aldi (believe it or not, there have been many).
But I didn't.
Today, I heard "Love"'s message, loud and clear. But I am fairly certain that there have been other occasions where I've ignored or dismissed people and things that were speaking to me. Have you?
What is the dream you've been putting off for someday? What is your "book"?
Tell me. I'd love to hear from you.
In the meantime, I'll be writing my book.
This morning I visited the dollar store to gather all the candy, small toys (my husband Brook so generously calls these items,"landfill"), school/craft supplies (more landfill) toiletries, and other treats that I love to buy to stuff the stockings for five kids, one husband, and (this year) one cat. What fun!
The items flew easily off the shelves and into my cart with superhero speed! Time passed all too quickly, and a glance at my watch told me that it had been over an hour since I'd arrived. I knew I had to hurry if I was going to accomplish all my planned tasks on this last school day before winter break! My cart and my heart were FULL as I imagined the looks of surprise, joy, and glee on the faces of my family next week.
Time to head to the checkout! Unfortunately, my euphoria came to a halt as I attempted to transfer my purchases from the cart to the rolling checkout counter. Physically, logistically, and financially, my purchases had suddenly become more difficult to handle. There was a fairly long line of customers behind me, and I was all too aware of how long the process took when using robotic, prosthetic hands.
Consider my task at "hand":
1) Open hand.
2) Place hand over the bag of candy or trinkets.
3) Close hand lightly around it, careful not to smoosh the M&M's or cheaply made toy.
4) Pick up hand, hoping that the stocking stuffer was attached.
5) Hold hand over the scanner and open it. Exhale with relief that I hadn't inadvertently dropped said item back into the cart or onto the floor.
6) Celebrate that I'd successfully transferred an item.
7) Repeat above process with the other >100 stocking stuffers.
I smiled lightly at the sweet lady who was the next customer in line, tacitly apologizing for how long this process was taking and how much of her Christmas shopping time I was eating. But, instead of being annoyed with me, she kindly and graciously offered to help! And I knew she was doing this from a genuine place of goodwill to men (or women, as the case may be).
Thankfully, I often receive such offers when I am grocery shopping, etc. But I am not naive. I know that some of the people who help me at the time of checkout are merely expediting the checkout process for themselves.
Every single time I shop, I am aware of how other shoppers notice my struggling with the checkout process, not only of putting my items on the countertop but also of retrieving my debit card from my purse, sliding it through the card reader (or more recently pushing it into the chip reader - yet another new thing I've learned), and finally entering my debit code or signing my name. Sometimes my prosthetic fingers are recognized by the touch screens; but more often they are not. In these cases, I am forced to use my elbow or the stylus pen provided, another lengthy process all its own.
I usually try to reassure people that it is harder for them to watch me struggle than it is for me to struggle. Many kind people must suppress an enormous urge to reach out with their own hand and do this whole process for me - to take away my struggles, if only for that one moment. My heart goes out to them; it truly does. The whole debacle just makes it awkward for everyone involved...
But I digress...Back to my story.
The sweet lady behind me, let's call her "Beatrice," was actively and authentically helping me. But the rest of the people in line were not quite so patient - they were using their hands and feet to tap their watches or their toes. At this point, I felt the need to explain that I was filling stockings for five kids, not just spoiling one or two. I thought this might somehow make it less annoying that I was also "deciding against" items here and there, trying to remember that we are on a "pastor budget" these days, and attempting to keep things "fair and even" between each child and their bounty.
But you'll never believe what happened next:
Beatrice gracefully swept the things that I had set aside back into the pile of items to be purchased. She looked into my eyes and told me I was a blessing to her. She quietly told me not to worry about the items I'd set aside because she'd be paying for my whole order!!! And she softly said, "You just go home and take care of those babies. I'll take care of this."
I tried to argue, but she'd have nothing of that. With tears in my eyes, I thanked her and hugged her. I told her what an incredible blessing she was to me and my family this Christmas!
What an incredibly generous gift Beatrice gave my family. I can only imagine the expressions of surprise and delight that will appear on my kids' faces this Christmas morning! Oh, what a blessing!
When I returned home, the first thing my husband did was ask me who I'd been kissing! "What?" I asked. I thought maybe he was referring to the way I was glowing with joy. But, as it turned out, when Beatrice and I hugged, she had left a little reminder of her gift that morning. A simple kiss.
Who has kissed you this Christmas season? How will you kiss, or bless, someone else's life? I challenge you to take away someone's worries, be it through a warm smile given to the cashier in Walmart, a financial gift, or just taking something from their plate of burdens. Be that blessing in someone else's life, just like Beatrice was in mine.
I hope you have a merry Christmas, and blessed New Year.
WARNING: Brash generalization coming…amputees are hilarious people.
If you don't believe me, check out these t-shirts.
Or better yet, check out this web site of amputee humor, complete with some great Halloween costume ideas.
There are plenty of comedians and comediennes who use their disabilities as their main source of material. And amputees are no exception.
But the normal Joe amputee is just as funny. My theory is that many of us use humor as a coping mechanism. If we make the joke, we can ensure that people don't laugh at us, but rather with us.
It’s either that or it’s just that our lives are so stinkin’ weird; they are funny! We all have random arms and legs strewn across our homes, for goodness sakes! Weird. Funny!
I picked up on this "amputee humor" pretty quickly after becoming an amputee. In fact, one of the first pieces of advice I got from another bilateral upper body amputee (missing both hands) was to "drink white wine instead of red." (It's easier to clean up when it spills) I knew there was a good reason to drink white...
I quickly came to agree with amputees that you gotta laugh - if we can't laugh at ourselves, we're not going to make it very far.
One of my recent Friday afternoon's FaceBook posts is a great illustration:
"Funny story. I literally had just made it to the (Harris) Teeter checkout line, and my hand (literally) died as it was wrapped around the handle of the grocery cart. The cashier AND two baggers had to hold the cart still so that I could yank my hand off of the cart! The best part of the story is that I just continued to check out because I really needed the bottle of wine that was in the cart."
It was no exaggeration when, on my forty-first birthday, I mentioned that, in the previous year, I had gotten stuck to three grocery carts and five minivan doors when my "hands" malfunctioned.
Sometimes my humor is a little dark. If you don't know me, it might catch you off guard. You might not know how to react.
Example: If you accidentally use some figurative or colloquial language like, “Oh, can I carry something for you, Kristan? Do you need a hand?” I might respond with, “Actually, I need two. Do you have any extras laying around?”
That’s a little mean of me, I know. It’s dark. And some people’s eyes grow big; and try to swallow their tongue. Let me have my fun. Laugh.
You just HAVE to laugh when you are at the neighborhood pool, and suddenly you realize that you have no way to pick your wedgie out, because you don't have hands!
You have to laugh when you find yourself late for a dentist appointment because you can't find your hand! It's a bit hard to drive one-handed - it's not like with a bike, when you wave your arm, and yell, "Look, Ma! No Hands!)
It is just impossible to keep a straight face when you are roaming around your house, asking everyone if they have "seen your hand!" But the funniest moment of all is when you have to explain to the dentist that you couldn't arrive promptly because you couldn't drive, because you only had one hand, because you couldn't find your other one, until finally you came across it in your sock drawer. Really.
And then there is the day that you are teaching a step aerobics class at the YMCA, and your prosthetic hand FLIES off your arm! When your arm gets sweaty, the prosthetic tends to slip off. You know this, but one day, you get carried away and forcefully move your arms up and down. (the more muscles you use, the more calories you burn, right?) That's when your arm slips off and SAILS across the room, almost hitting your favorite class member! You can't make this stuff up!!!
On another occasion I was team-teaching with one of my favorite instructors, and we had a bit of a snafu ourselves! We had just finished working our abdominal muscles, so I was laying down on a mat. At the end of our set, she stood up and went to give me a hand, to help me stand up. Well, I knew that my arms were a bit sweaty; but I just instinctively gave her my hand. As she grasped my hand and gave it a tug, she got more than she had bargained for. She stood there, holding my entire (prosthetic) arm in hers, and she gasped, "What do I do?" All I could say, and all I could do, was "Laugh!"
A good belly laugh. There is nothing prosthetic or fake about that.
*If you are an amputee and are reading this blog post, please post your favorite amputee story in the “comment” section. I wanna hear it!
**If you are a “normal” person (whatever that is), keep laughing with us! It’s OK! You’re allowed. Laugh at our dark humor. Chuckle at our jokes. Help us cope. We need all the help we can get.
Jeannie turned FOUR YEARS OLD this week! And this girl was celebrated! Isn't there a Bernstein Bears' book entitled Too Much Birthday? Well...we were close. So many people love this girl; it is hard not to overdo. While she did not have the requisite bouncy house party with her friends, she had no less than four parties. The family sang to her and cut four different cakes (two of which were made by her big sister, Caroline wanted me to mention).
My personal favorite was an impromptu party for two that happened several days before the others. After a whole morning at the prosthetic clinic, I decided Jeannie deserved a cookie for her patience and good behavior. So we walked next door to Sunflour Bakery, which just happens to be the best one in town; and I told her to pick anything she wanted from the pastry display (it had been a long appointment). She chose a chocolate sprinkled cupcake; and, then I put it together that her birthday was only five days away!
So I decided that, instead of taking her cookies "to go" and letting her add to the crumbs in the car, we would sit down and celebrate! After a lot of help and even more mess, we had our little party; and I sang to her sparkly eyes and great big smile.
I even went to the trouble of taking off my prosthetic so I could attempt to take her picture! Which snapped just a millisecond before I dropped my camera in the middle of my cupcake. It was a good belly laugh for us both...I guess you had to be there.
It was not lost on me that these special moments of her birthday couldn't have happened in years' past. On Jeannie's third birthday, I wouldn't have dared to take Jeannie out somewhere by myself; I wouldn't have been able to trust that she would stay with me. And a year ago, I did not have the finer motor skills to handle my own food, let alone Jeannie's cupcake.
This is hard to put in print, and it would be even harder to say out loud: But on her second birthday, Jeannie did not accept me as her mommy. She was still a bit wary of me, and she would never have gotten in the car with me, unless her dad or a sibling were with us. She would have pushed me away and yelled if I tried to sing Happy Birthday; I was hardly permitted to attend her party.
Jeannie's first birthday, of course, was just like any other day -- she was the center of my attention; I just baked her a cake, too. Though her first birthday was a true gift, I didn't recognize it for the blessing that it was. Like so many things back then, I took for granted the ease with which I baked a cake, probably with her on my hip and my phone stuck to my ear. I just expected that she'd look in my eyes and reciprocate the adoration I felt for her. Like I said, it was just like any other day...
But now my girl is FOUR, and I am grateful to my core for all the blessings of the day.
It feels like yesterday that I told Brook about this impossibility-- a baby growing inside me. The baby (Jeannie) has, on many occasions, been the glue that holds our family together. I've often commented that all the kids hate each other, but they all love Jeannie! And I've often referred to what Ben said when we finally got her home: we were all standing around the crib, and the kids were staring at Jeannie with amazement (none of them were allowed to touch her because they were all getting over, you guessed it, the flu). In the gentlest nine-year-old voice that Ben could muster, he thanked me for "finally giving him a sister he loved!" Which is quite possibly (and simultaneously), the sweetest and the meanest thing he's ever said.
And now Jeannie has gone and turned four!
She is proving to be the most challenging, intelligent, independent, resilient, resourceful, stubborn, sneaky, and sassy Seaford yet. (I don't know where she gets it.)
The big kids still dote on her; and they still fight over who gets to sit next to her in the car. I wonder each day, when is this unanimous adoration going to fade? When will the kids stop wanting to do anything and everything for her?
As it stands, Lauren is still flattered if I ask her to be the one to get Jeannie dressed for the day or if I think she can be trusted to brush Jeannie's hair. Even Ben doesn't complain when he is asked to take charge of Jeannie.
The coveted "chore" each night is to be the one to brush Jeannie's teeth and put her to bed. But, what will happen when it's no longer a treat to read to Jeannie and kiss her goodnight?
Well, I'm starting to think it never will...
Jean-bean has become our family mascot - when she's ok, we're ok. Those tantrums? They reflect our family's inner rage at all that has happened in this sweet young child's life. (Let's be real: they reflect her three-year-old independent, mischievous self. But, it sounded good at the time.)
But truly, when the family seems to be falling apart-- when the house is in shambles, the kids are all fighting and yelling and screaming, Ben has escaped to his disaster of a room, I am still dressed in my gym clothes, from two days ago; when the girls' hair is tangled and mangled, we're all running in different direction, and Brook has lost his patience...when the lot of us is falling apart, seemingly to the point of no return...
There, is beautiful Jeannie, with the microphone she stole from that disastrous karaoke set that Santa brought a few years back. She's dancing and singing her little heart out. And we all know the words to her song,
"Let it go... Let it go."
Happy Birthday, Jean-Bean!
Many of us moms have keepsake books for our babies' first year of life - we keep track of a baby's many "firsts." Things like his first tooth or her first haircut. Soon enough, it's that precious first step and the first birthday party.
Yet, there's another type of "first" that is usually not so joyful.
Those of us who have suffered tragic losses have kept track of things like the "first Christmas since...," the "first birthday, Mother's Day or Father's Day since...," or the "first vacation without her." Then there is the first night in a lonely bed and the first time coming home to an empty house. Finally, we honor the first anniversary of his/her death.
The "firsts" surrounding our babies' births are usually sweet. The "firsts" surrounding a loss of life are mostly sad, or bitter.
My unexpected turn in life creates a more complicated type of "first" that is both bitter and sweet. Though I am still mourning the loss of my hands and feet, I am also rejoicing at the blessings of my "new" life, a life that was saved. And, while I hate that I can't do things the way I once did, the "firsts" that I experience are accomplishments and thus celebrations.
For example, going to the beach can be difficult for me because I can no longer enjoy an early morning run when my breaths and my footfalls match the back-and-forth cadence of the waves crashing on sand. The same sand that squished between my toes while the sun warmed my skin.
At the same time, I can now experience the beach with a newfound joy. I am incredibly grateful to smell the salty air and feel the majestic breeze as it blows through my hair. On my "first family vacation since...," I did not get to build sand castles. I sat and watched more. But I did build new family memories. And I also took my "first" walk on the beach. I took my husband's hand in mine, and I walked along the shore.
Once a year, The Amputee Coalition, a national organization that supports and advocates for amputees, holds an educational, experiential, and social meeting for amputees and those that care for us (prosthetists, physical therapists, and loved ones). It's called The Amputee Coalition Conference.
I've been told about these annual conferences again and again over the past two years. I've heard that they are "experiences of a lifetime" and that "you have to go at least once!"
The Amputee Coalition Conferences are held in go-to destination cities like Phoenix, Vegas, and Chicago, to name a few. While surfing the net, I discovered that the 2016 conference was scheduled to be held in Greensboro, North Carolina at the Sheraton!
Greensboro would not only be a convenient locale; it would be affordable! This was it! My time had come!
I registered early, partly to get the early-bird discount, but also to ensure that I wouldn't lose my nerve. It was fairly intimidating to jump into a new social arena; I'd always been a bit reserved, and that was when I had two feet!
I tried but failed to find a roommate so I could split the social, physical, and financial costs; but, in the end, I invited my eldest daughter Caroline to join me for the endeavor. (See Road Trip.)
Accompanied by my nine-year-old sidekick who doubled as my personal assistant, I made the quick and blessedly uneventful hour and a half drive to Greensboro and arrived on schedule.
As we pulled in to the hotel parking lot, my daughter pointed and proclaimed, "Mom, there's an amputee! And there's another one! He has a prosthetic leg, just like you!" Stealing her thunder and degrading her observant comment, I told her, "Caroline, you're going to see a lot of 'them.' It's an amputee conference!"
It was in that moment that, with tears in my eyes and a lump in my throat, I was convicted. And the evidence was obvious - I am one of 'them.' I am an amputee, and I belong here at this conference.
Oftentimes, this whole ordeal seems unreal to me. I'll wake up in the morning, fully expecting to look under the covers to see my hands and feet. But other times (like in this particular moment), it hits me. It slaps me in the face, actually. And I know, without a doubt, that I am an amputee.
The fact sunk in more and more over the course of the weekend. And it began to settle in my stomach rather than just lay there in a pit.
For the "first" time, I felt like I belonged to the group of people who call themselves "amputees." I shared more with them than what we were missing.
I attended some incredibly interesting and relevant educational sessions - sessions about the body image struggles of an amputee, the grief process for an amputee, and the newly available technology that is improving our lives by the day.
Just as I had hoped, I made some great contacts at the conference, networking with folks who could help me professionally and personally. I went to a "welcome reception" for amputees from North Carolina, so I met some "locals" who are doing amazing things. In seeing all the great things that other amputees are doing, I became excited, inspired and hopeful about a future where I can help people of all different abilities through my speaking and writing.
In addition to business contacts, I also met some wonderful new girlfriends who "get" my everyday struggles and frustrations - some of which are universal and human, but many of which are complicated by this thing labeled "disability." These women can relate to the love/hate relationship I have with my prosthetics (and my prosthetists), the jealousy I feel towards people who are "able," and the corresponding guilt I have for feeling jealous at all.
My new friends share in the circle of grief that I am constantly traveling - one step forward and two steps back, in one direction or the other. And they understand how the ordinary things in life (getting or keeping a job, being a parent, driving a car) become extraordinary when you're disabled - extraordinary in difficulty but also in the feelings of pride in your accomplishment. Though I may not see these ladies until next year or even later, I know they'll be forever friends.
Perhaps the best part of the conference was that I got to try so many new things, as well as some old things that I tried in a whole new way. I would never have tried such things on my own; but, with this crowd, I felt as if anything was possible. I was surrounded, encouraged, supported, and challenged.
We swam laps in the hotel pool, trained by an Olympic medalist who later became a Paralympic medalist when he lost his leg.
We learned to line dance, mamba, shag, and even hula hoop!
We even took turns rock-climbing; the line of us wanting to give it a shot wrapped around the Sheraton Greensboro during a summer heatwave.
We weren't climbing walls to prove anything, either. We were simply having FUN, feeling normal. We laughed - with each other, at each other, and at ourselves. We swam, we walked, we danced. We ran, we climbed, we SOARED!
For the first time, I was proud to be called an "amputee."
It was my first Amputee Coalition Conference. Of many.
My inner geek's racing heart and sweating brow threatened to hold me back. I kept thinking we would get "caught" for leaving school early. But we had to get on the road if we wanted to avoid traffic.
So, with a whispered chant of "I'm the mom, I'm allowed to do this," I marched right up that hill to the school office; and I signed that early dismissal form.
My daughter Caroline and I waved goodbye for the summer and broke out into a run for the car (ok, mine was more of a limping jog).
Seat belts buckled...Check.
And radio blaring... Wait!!! No!!! Not on NPR!!!...
Radio blaring on 95.1 (the popular teen station- ugh), and we were FREE! AT LAST!
We were rebels! We were officially road-tripping! Just us! In my Duke-blue Honda Odyssey! The excitement of it all...the intrigue...the adventure...we were all on our own (meaning I only had one kid with me) We were on our way! All the way to...
Greensboro, North Carolina for The Amputee Coalition Conference!
Hey now, it was cool to us. Well, it was to me anyway. I was losing faith that my nine-year-old thought it was anywhere near cool.
After trying and failing to find a roommate to split costs, I had decided to invite my eldest daughter Caroline to join me for the voyage. The deal was that she would help me with my prosthetics and with showering in a hotel bathroom; in return, she would get to stay in a hotel room (why do kids love hotels so much?) and watch cable television, as well as order room service once or twice.
No child had ever accompanied me on a trip like this before, and there was much chatter, bragging, and jealous fighting heard among the troops. Suddenly, a weekend in Greensboro had become the trip of a lifetime, and Caroline was the lucky daughter that won the lottery.
You can guess what came next: All of my kids suddenly became Supreme Court Justices. This trip wasn't "fair!" Tough.
The daydreams that danced in my head sounded something like this: What would my first Amputee Coalition Conference be like? What would I do there, and who would I meet? What new things would I learn? And what new products would I find?
Meanwhile, my daughter's thoughts and dreams probably sounded more like this: I wonder if I'll get my own bed? Is a "Sheraton" a nice hotel? I wonder what channels they get...Disney, I hope! Maybe even Nickelodeon? Will my mom let me stay up late and watch whatever I want? Hmmm...What's room service really like? Does a man in a tuxedo deliver it with a silver dome cover and then unveil it like on "Jesse" (Mom hates that show with a "heated passion," whatever that means.) Will room service deliver cheese burgers? Dessert? I wonder what they have for breakfast? Will my mom let me spend all this money?
As the miles traveled under our car and we got closer to our destination, our hopes only got higher. We sang and danced along with the radio. We enjoyed long, comfortable silences. And she suffered through a few of those longer, awkward, "birds and bees" talks that have to be reserved for when a tween is strapped down and doesn't have to make eye contact - she became my captive audience, and a gulping, gagging POTT (prisoner of "the talk"), not to be confused with a political POW (prisoner of war).
We finally arrived at the conference, and our "Mommy-Daughter" our dreams were fulfilled. Caroline got a double bed, all to herself! To her, the Sheraton was a five-star hotel. They had cable, so she got to watch the newest episodes of all the Disney hits. Its room service measured up as well - cheeseburgers and fries, ice cream sundaes, pancakes, eggs, and bacon were all on the menu (and they were quite reasonable, thank goodness!
One of my favorite parts of the weekend was when I overheard her child-like voice on the phone, apprehensively placing our room service order: (and I quote) "l would like, please, a plain cheeseburger with pickles, ketchup, and a Sprite. My mom would like, please, a plain cheese pizza and Kendall Jackson."
Caroline's favorite part was something she'd never even heard of - an "Expo." She'd never dreamed of so much "free" stuff! Pens, ear buds, pens with a stylus attached, key chains, candy, more pens, t-shirts, food, a selfie stick, and even more pens! The reps for each company were generous, too; we were even able to get enough "free stuff" to share with all the other Seaford kids. So, while mom was talking with sales representatives about new kinds of hands and feet, Caroline was filling up her bag (and her mouth and her pockets) with "free stuff!"
I should also mention here that Caroline truly loved being an only child for four days. She got to sit "shotgun," and she got to make all of life's biggest decisions - where we stopped for lunch, what we watched on television, even what time we went to sleep each night.
I was trying to be the "cool" mom, relaxing all the rules and treating her as an equal. I knew I had taken things a bit too far when Caroline started to instill order herself.
At one point, she told me it was time to turn the lights off and get some sleep as we "had an early event the next day." She kept us prompt for each breakout session, too. Then, on our last night, when I returned from the closing reception; I found her eagerly waiting at the door with her eyes on her watch, mumbling a passive-aggressive comment, something to the effect of "I hope you had fun down there tonight, little lady..." I stifled a giggle when I realized that she had treated the time I said I'd be back to the room as my curfew!
Don't worry. The appropriate order was instilled by our last morning together. Caroline whined about being hungry and complained when I told her she'd have to help me put on my leg, brush her teeth, and pack up her suitcase before we went to grab breakfast. She loudly complained: "Why did we have to brush our teeth when we were just going to mess them up with bagels and cream cheese? Why do we have do go home? Why can't daddy hold down the fort for one more day? He's not really going to run away and leave Ben in charge."
Phew! Order was restored! And Seaford legend has it that I let Caroline watch one more Disney sitcom (which turned into the requisite three) before we hit the road.
My fortieth year was fabulous, fantastic, and fun. It was filled with new experiences, new friends, great challenges, and greater love.
I tackled many new things as well as old things in new ways.
I swam hundreds of laps in the pool, rode the elliptical for many miles, and held many minutes of planks.
I learned to ride a bike, climb a rock wall, and dance a mamba.
I began a new career, started a business, and partnered with my sister to develop my web site.
I opened accounts with Squarespace, Twitter, and Instagram.
I wrote a blog, spoke to over 25 groups, and presented my ideas to audiences of children, teenagers, and adults alike.
I cut vegetables, cooked dinners, and washed dishes.
I hiked on trails, walked on sand, rode on chair lifts, and skied down beautiful slopes.
I traveled by plane, car, minivan, and Uber.
I ate dinners out, tried new wines at a vineyard, and even tried to like drinking beer! (Only for you, Brook!)
I saw Wicked at Ovens, Mary Poppins at Christ Lutheran, and Alice in Wonderland at Sun Valley Middle.
I pumped my own gas, swiped my own Red Card, and bagged my own groceries at Aldi.
I unbuckled a car seat, carried a 35-lb child, and happily buckled the seat again.
I donned a prosthetic leg, stayed overnight, and showered, all independently.
I ate over a hundred Poppy Seeds bagels, drank 52 bottles of Chardonnay, and had 700,000 cups of coffee (600,000 of which were prepared by a griping husband).
I made several versions of a chores chart, nagged five children about said chores chart, and paid too many dollars in unearned allowances.
I played Tooth Fairy, Easter Bunny, and Santa Claus, defended their existence to a set of twins, and broke it to a big sister that there were no such things.
I had three surgeries, one hospital stay, and three newly-fitted prosthetic legs.
My "hands" broke exactly 181 times, and I got stuck to three grocery carts and five car doors.
I'm attempting to raise five children with manners, respect, values, and faith. I've tried to model strength, gratitude, and kindness. But most of all, I'm trying to love them as much as they deserve to be loved.
A huge thank you to those who have helped me survive and thrive to see the day that makes forty-one years of age.
An even bigger thanks to the One (God) and the one (Brook) who help me do all the things I love and love all the things I do.
And Brook, baby, you make me want to live to see forty-one more years.
"It's just like riding a bike!" According to the old saying, riding a bike is supposed to come back easily, even when it's been years since your last ride.
However, these little maxims aren't necessarily true: babies generally don't sleep well; and cats don't always land on their feet. So I was cautiously optimistic that cycling could become my new sport of choice, even as an amputee...
Last weekend I had the opportunity to give it a whirl! I attended a "First Cycling Clinic" in Greenville, South Carolina that was hosted by OPAF (Orthotic and Prosthetic Activities Foundation).
In a recent blog post, I mentioned this fantastic organization that provides amputees with opportunities to try athletic activities for the "first" time. It was with OPAF that I had my first experience in the water; now, they put me (and about 30 other amputees) on wheels!
There was a time when I thought that I would never ride a bike again – I assumed that it would be too difficult (and scary) to balance on wheels. And how could I grip a hand brake without hands? Obviously, fall could mean a serious injury.
But, with the adaptations provided by The Roger C. Peace Rehabilitation Hospital, I wasn't required to balance, and falls were far less likely. So biking wasn't nearly as scary as the other activities I've tried since losing my hands and feet – not as frightening as walking, running, teaching step aerobics and weight training, or coming down a staircase. And not life-threatening like swimming or skiing!
The folks with OPAF had several different kinds of bikes that I could try – tricycles, hand cycles, and recumbent bikes. You should have seen some of their contraptions, all invented to allow people to experience the exhilarating freedom of riding a bike.
After talking and brainstorming about my unique challenges, we decided that I should try a recumbent bicycle. This arrangement allowed me to pedal without forcing my right knee to bend more than 90 degrees.
Wearing all my prosthetics, I held the handlebars that were twisted 180 degrees so that I could push down on the hand brakes, instead of having to squeeze them.
I sat in the hammock-like seat, strapped my feet in the pedals, and off I went! Before I knew it, I was riding my bike around the block. It was so comfortable and even relaxing. Honestly, it felt more like lounging in a LazyBoy than exercising.
Cycling was easy! Easy as pie! Maybe that will be my next athletic endeavor!
To be continued...
In the blog post that I wrote last week, I described the sheer fear I felt in those first few moments of swimming again.
Without hands or feet, and without any prosthetics to help me, I didn't know if or how I'd keep my head above water, even in the shallow end. But I faced another, possibly greater fear before I even went near the water.
I'm embarrassed to mention this particular fear. But if I am going to be honest on this blog, I have to say it. And there's no flowery way to put it. No talking around it.
I was simply afraid of unveiling my broken body. I didn't want to undress and remove my prosthetics because I was deathly afraid of allowing anyone to see just how pitiful and helpless I look.
My prosthetics normally hide the "stubs" on the ends of my limbs; and, without them, I am naked and vulnerable.
Before tackling this fear, I could only imagine what I would look like, sitting at the edge of the pool: a little, helpless, "handicapped" girl, that someone had possibly left behind.
Being a (relatively) new amputee, I am often shocked myself when I see my own body.
So it is understandable that strangers give me that second glance...
But I do notice it.
I see the stares.
They are not mean-spirited stares. Yet, they are still unsettling. And I certainly don't want to attract more of them. Facing the world without something covering my wounds invites even more stares!
Kids, in particular, stare at me. Or maybe they are just less practiced at hiding their reactions - Most times, children are truly just curious...Who is that? What is that? Could it hurt me? Could it happen to me? Could it happen to my mom? As they look more closely, they often become fearful. They hide behind their moms. Anyone who knows how much I love kids (and not just my own), would tell you just how devastating this is to me.
Yet, most of my hesitation about swimming is on an embarrassingly superficial and vain level. Seeing my body and its challenges reminds me that achieving my "idea" of physical beauty is now even less of a possibility. I have a physical deformity, after all. I am not even whole! And I have many, many inexplicable scars. (I've never asked the doctors how some of them appeared because I truly don't want to know.)
I could never look beautiful. Or sexy. Or strong.
It certainly gives a new layer to dreading bathing suit season.
To think that I used to worry about how I looked in a bikini, or if I should even wear one...
Before buying a new (always black) bathing suit, I'd look in the mirror with angst. I'd examine the circumference of my thighs. I'd pinch the flab on my tummy. And I'd lament my "runner's chest," flattened with each mile.
I was at the gym nearly every day, trying to mold my body into some unnaturally tight and thin figure, without one ounce of fat or flubber. I did pushups and lifted many weights to build my chest, biceps, and shoulders. And the sit-ups. Oh, the sit-ups.
It all seems so ridiculous now.
It does make me realize this: Everybody has something. Everybody has some physical characteristic that causes them shame. Some thing that weighs them down. Too fat. Too thin. Too short. Too long.
I guess my thing now is "too robotic," "too fake." (Although one could argue that more of my body is real than those Sports Illustrated Swimsuit models'...)
Unfortunately, we all hold ourselves to the ridiculous ideals that we see in the media. We spend so much time and energy trying to change ourselves. It is so "self-" centered; imagine if we spent this same time and energy on others - women could save the world! Still, I think we all do it, to some degree.
I used to keep my "arms" on while I was working out at the Y. I would use them to disguise my own arms, even though they'd make me uncomfortably hot. Now I just take them off. I know that some people will stare, regardless of what I do. They can just as well stare at my prosthetics as at my stumps. So I may as well be comfortable while they stare.
For me to wear a bathing suit now is a bold and courageous move. It says, "Yes, I am different. I am an amputee. So, stare all you want. I'll be over here enjoying my life."
Once I slip in to the pool, I realize how strong and amazing my body really is. I can still float. I can still swim, lap after lap. I can still enjoy life.
And that is beautiful.
Being beautiful is so much more important than looking beautiful.
So, what is the one fear that holds you back from doing something you love? That keeps you from enjoying your life? How can you "slip in to the pool" in your life?
For when you do, I think you'll find strong, amazing, beautiful things.
The verdict is in, and I will likely never run again.
Yes, this ruling feels like a life sentence - I am a runner at heart, and I mourn the loss of that identity. Running has been my life-blood, my therapy, and my stress relief for my whole adult life. After a few hours (ok, months) of pity partying; I am getting up, brushing myself off, and hitting the gym again.
Emotionally, physically, and spiritually, I crave an activity that gets my heart rate up, makes me sweat, releases endorphins, clears my head, builds muscle, and glorifies God.
According to the authorities (doctors), I am "allowed" to ride the stationary bike or the elliptical. Those machines are fine, and I'm grateful that I'm physically able to use them. As long as I have an iPad and a good TEDtalk to occupy me, I can tolerate them as ways to sweat. I've even taken a few cycle classes. But frankly, I just need to MOVE more than those machines allow me to do.
Another obvious option is swimming...
I grew up swimming at the neighborhood pool, even joining the swim team by the time I was six years old. As a teenager, I was a lifeguard, swim instructor, and swim team coach. And as an abled adult runner, I occasionally swam laps for cross training. I even competed in a triathlon or two.
About a year ago, I participated in an event called "First Swim," offered by OPAF, an organization that travels around the country providing swimming (and other active) experiences for amputees.
This particular event that I attended was led by a two-time World Champion TriAthlete, Mabio Costa, a below the knee amputee, and assisted by the NCAA Champion Queens University Royals; and I was excited to try it.
As I headed to Queens University, I was envisioning a sweet college girl holding me like a baby in waist-deep water, helping me float on my back. Sounds easy enough, right?
Well, my "first swim" was nothing like that at all.
Instead, the leader had me remove all of my prosthetics and sit at the edge of the deep end. Then, he simply told me to "hop in!" As if it were that easy...
Mr. Costa predicted that I would sink; and he said that when I got to the bottom, I should push off and swim to the top as fast as I could. Did I mention that this pool was 12 feet deep?
I gasped, as two college girls treaded water and encouraged me, "Come on! We've got you. On the count of three, just jump in!"
I don't think I've ever been so scared, before or since. I had a whole new respect for the preschoolers that I taught to swim all those years ago. I truly understood the fear they'd expressed when I'd asked them to "just" jump into my arms!
"Ok," I thought. "I can do this." Mr. Costa seemed to know what he was talking about. I doubted that he'd go through all of this, just to watch me drown. Plus, I'd been resuscitated more than once already. I didn't see much risk wrapped up in one more time...
"Ok," I whispered to myself. "One, two, three..."
Only I didn't go.
The coach whispered back, "You can do this."
"One, two, three," I tried again.
And, with a burst, this time I hit the water!
It happened JUST like he said it would. I sank to the bottom. I pushed off, and I swam as fast as I could to the surface. I lifted my head, and I heard a boisterous cheer.
"You did it!"
There was my husband, and there were my kids. In the bleachers clapping, big smiles on their faces.
Yes, I did. I did do it.
"I'm swimming," I thought. Or maybe I shouted; it's hard to say.
Either way, the answer was clear: I can swim again!
I floated like a cork! Still, I was unbalanced and uneven. Treading water felt very strange, and I teeter-tottered back and forth like one of those old-school toys. I think they were called weeble-wobbles?
But I was doing it! I put my head back and easily floated on my back. Then I flipped over and tried some freestyle.
It was odd. Oddly easy to stay afloat. But oddly impossible to go anywhere.
Swimming, for me, works like a treadmill! I stroke and kick as fast as my little sticks can go, but I don't go anywhere!
Without hands, I don't have "oars." So my arms can crawl forward, but it's a bit like rowing a boat with sticks.
Kicking is even more fruitless. My legs feel like dead weight - it is easier to use a pull buoy so I don't have to kick at all. I'm not sure if that is due to my uneven lower body or to my toe-less foot lacking any resemblance to a webbed one. Are there any swimming experts or physicists out there who want to weigh in? Why is it that amputee swimming is so difficult and slow-going?
Regardless of my speed though, I'm finally swimming again! And I can say with confidence that I am getting a good cardiovascular workout each time. I get breathless, and I tire easily in the pool. My upper body and my entire core work especially hard.
Swimming is also fulfilling some of my emotional and spiritual needs. The breathing is meditative, and it is incredibly quiet under water. I get into a rhythm that is very similar to that of running.
I use that rhythm to repeat prayers like a rosary. I swim in honor of people on my prayer list, and there is plenty of time for reflection. At the same time, I can scream in frustration, and no one hears my curses.
These days I'm hitting the pool several times a week. With each workout, swimming gets easier; and I'm swimming faster, longer, and stronger.
Today I swam a MILE! 72 LENGTHS!
And all without prosthetics! Yup, just me and my little, broken body.
Yes. I am an amputee.
But I am also an athlete.
I am a swimmer.
I have a love/hate relationship with my right foot. For two years now, it has been a constant source of pain and worry.
Back in 2013 when I lost my limbs due to sepsis, there was some question as to whether we should even try to save it. The skin and tissue on all of my limbs were necrotic, but my right foot had a fair amount of healthy tissue. My surgeon was fairly confident that, if he amputated my toes and cut around the dead tissue on my heel, there would be enough foot left to support walking and even running on it.
We have done everything possible, in hopes of closing the wound on my heel.
In the past year alone, I've had two different surgeries. I visited a wound clinic once a week for months, I had several skin grafts made from amniotic cells, and I rested it for months at a time. To no avail.
For the most part, new and healthy skin has replaced the necrotic. But I still have a large ulcer that weeps and bleeds each day, and my foot still hurts with every step I take. For a while I just jogged, did step aerobics, and generally stomped on it anyway. Which only made matters worse.
Back then, the only argument for amputating both feet was that it would have left me balanced and "even." Sometimes I wish they would have done just that...
It is no secret that, if we had amputated both feet, I could use two running blades instead of one; and I'd be running hard and fast by now.
But they didn't.
I could have them amputate my right foot now. But, who wants to have a surgeon saw off their foot? I don't. Especially when I know, firsthand, how painful the surgery and recovery would be.
When I seriously consider amputating my right foot; I realize that, I love my right foot. Don't you love yours?
Recently, my surgeon, my prosthetist, the third opinion, fourth opinion, and the fifth concluded that running, aerobics, and even power-walking are no-no's for me. Anything that creates a consistent pounding on my heel is out of the question.
If you had asked me three, five, or ten years ago, I would have told you that my life, without running, wouldn't be worth living.
I would have joked that "I'd give an arm and a leg for my Sunday morning run."
Who ever would have thought that I would literally put that assertion to the test?
What I didn't know then, I know now. I've learned that my right leg is good for many more things than just running. I love my right leg. For reasons far too many to count, far too heavy to weigh, and far too valuable to put a price on its worth.
So, as it turns out, I would not give an arm and a leg for the ability to run. Not even one foot.
I promised that this blog would record my everyday life as an amputee mom of five young kids. For the most part, I have tackled larger and more general topics. But today I want to walk you through a very simple part of my every day life - fixing my breakfast.
As you will see, simple things turn complicated when you lose both hands to sepsis. At the same time, I appreciate simple things all the more.
I am extremely fortunate. Blessed really. I have two remarkable, technologically-advanced, battery-powered, game-changing, "myoelectric," robotic, prosthetic hands! They even look real!
I will have to tackle a full explanation of their workings another day. Suffice it to say that I can open and close them in a pincer grasp. I am able to grab things, pick them up, and put them down. But I also drop or smush things a great deal of the time.
They are difficult to operate, and the learning curve has been great. It took me a ten-day stint in a rehabilitation hospital as well as 18 months of trial and error practice to learn how to use them as well as I do. Day by day, I continue to improve; but my prosthetic hands will never work as well as the ones God made for me.
Lest I get distracted, let's go back to fixing my breakfast.
On school days, I typically have a beautiful 40-minute period of time between sending the big kids off to school and waking up my toddler for preschool. (She is a late-nighter, not an early riser.) Let's say that I want a simple bowl of cereal; and humor me while I walk you through the steps I take to prepare it.
First, I reach up into the cabinet and carefully grab a cereal bowl. Then, I scavenge in the silverware drawer and manage to pinch out a spoon. After almost two years of practice, many broken bowls, and even more bent spoons, I have learned to do these seemingly simple tasks. Today, I complete them without a hitch!
Next, I go to the pantry and am pleased to find a fresh box of Cinnamon Toast Crunch that the kids have not yet demolished. Better yet - the box is on a shelf where I can reach it and even at the right angle for my hand to open and close around it. Chances are I will squeeze the box and bend it, possibly crush the cereal that's inside of it; so I have to be extremely careful, or I may inadvertently unclench my hand and thus let go of the box. Which I do. Then, in an attempt to hold on a bit tighter, I smoosh the box. Back to a lighter grip. This time the box falls and smacks me in the middle of the forehead. But I do eventually get it onto the counter in one piece.
The next frustration, I mean, step, will be to actually open the box. I use my "fingernails" to get under the side of the box top. Then I gently wiggle and pull several times to open it. After two or three minutes, it does not look pretty; but the outer portion of the box is OPEN! Hooray!
Yes, now I have to open the plastic bag inside the box that actually holds the cereal. Using my prosthetic fingers, and holding one side at the top of the plastic bag, I try five or six times to tear through the glue. When that doesn't work, I change strategies and grab the bag on both sides. I get a good grip on each side and count to three...BOOM! I open the bag, and there is an explosion of Cinnamon Toast Crunch! The cereal lands all over the counter and on the floor. I sigh and get out the broom to sweep up my mess. I try to think back to the last time the floor was cleaned... I decide that, since I can't remember, the cereal doesn't meet (even) my standards of what is edible. Luckily, there is still enough cereal left in the box to pour a small bowl, which I do without incident.
Frustrated yet? Stay with me.
I still need some milk. I open the fridge to see which type of milk carton we ended up with this week - the kind with the twist-top or the pop-top. I've learned to manage both types (with my teeth, of course), but the pop-top is quicker; and I'm getting hungry now.
Ugh. It's the twist-top. With a deep breath and some positive self-talk, I lean over and open my mouth. Remember all those times that mom told you it was rude to drink from the carton, unsanitary to put your mouth on the spout? Forget I ever said that. You do what you have to do.
I proceed with gripping the round twist-top in between my teeth. I hold my head still and recite the "lefty-loosy, righty-tighty" rhyme while I turn the jug to the right. Think about that one for a minute...
I successfully open the milk jug and carefully pour some milk over the cereal without dropping the whole carton or spilling milk. Boo-ya!
I slowly and gracefully (ha!) carry my breakfast to the table and sit down to (finally) eat. I take a deep breath, smile, and (figuratively) give myself a pat on the back. I lift that first bite to my open mouth.
Then, suddenly the back door bursts open.
My breathless, disheveled middle-schooler plops down in the chair next to me and barks, "I missed the bus! Can you drive me to school?"
Oh well, I'll try this breakfast thing again tomorrow.
I recently traveled to Durango, Colorado all by myself for an entire week! The Adaptive Sports Association awarded me with a skiing scholarship that included an all-expense paid trip, and I thoroughly enjoyed every minute of it. Many people couldn't believe that, as a triple amputee, I had the courage to ski. (See previous post about my trip here).
Though skiing took courage, the scarier part of my journey was leaving the comforts of my home and family, as well as the assistance of a nurse or an adult who was quite close to me (mostly Brook, but sometimes a friend or family member).
Since my amputations, I have traveled to Ohio, and even to The Bahamas. I've gone through airport security gates, and I even swam with dolphins!
But I have never stayed at home alone for any length of time, nor had I traveled anywhere without an accompanying family member.
For two years now, I have almost completely depended on my dear husband Brook. His caring smile and twinkling green eyes were the ones that greeted me when I came out of the coma. After 100 days in six different hospitals, his were the strong arms that retrieved me from our car, carried me across our threshold, and wheeled me around our house.
Brook learned to gently bathe me (rather than scrub me like a car), and to slowly detangle and brush my hair - even and especially when it fell out in clumps from the sheer trauma that my body endured. He even blow-dries and styles my hair these days, and he does a surprisingly good job, I must admit!
Brook has prepared most of my meals, and he learned to feed me only the smallest of bites.
Initially averse to blood, guts, and gore; Brook has patiently changed all of my bandages and could now pass for a skilled wound nurse. He has accompanied me at doctor's appointments, and he paced outside the surgical suites during all six of my amputation and revision surgeries.
Brook still puts on my prosthetic leg each morning, helps me dress, and assists with my shower.
Brook is my constant source of emotional support, encouragement, and companionship. Those that were present for our wedding day back in 2001 can vouch for us - we have always had a very strong and rare love.
And it probably comes as no surprise that, since my illness, we appreciate one another like never before.
So, it follows that leaving Brook behind when I went skiing was, at best, difficult and, at its worst, incredibly scary.
There were only three weeks between the day I was awarded the skiing scholarship and the day my plane departed. That small window of time worked in my favor, as more time to consider would have meant more time to reconsider.
The night before my trip, I did start to doubt my decision to go. My thoughts began to spiral down the hole of "what if's."
What if I can't get my (prosthetic) leg on each morning? What if I can't get my ski pants on?
What if I can't get my ski pants off? What if my hands get snow on them and break? What if I can't get in the shower? How would I even turn on the shower? What if I can't get out? What if I had "over-sold" myself in the application? What if I had exaggerated my independence?
Several other things were contributing to my self-doubt as well:
First - Even when I had hands and feet, I was not a risk taker. Nor would I be categorized as adventurous or spontaneous. I have often joked that I could be spontaneous next Tuesday from 2-3, if only someone would give me the options ahead of time.
I went to a college that was only three hours away. A very "safe" move. Then I moved back to Charlotte and lived here for a couple of years before enrolling in a graduate school that was located less than two hours away. Not risky.
Today, I live only fifteen minutes from the house where I grew up. I live right near my family, and I depend on them greatly.
Second - While I am very talkative, I am also quite reserved in new situations (I have always been too scared to live in new places); and I didn't know one person in Colorado.
Third - Because I became friends with him on FaceBook, I have never actually met the amputee who recommended ASA Durango. I scoured their website, and I could not find a prosthetist or physical therapist on staff. Then I asked my expert friends at Hanger Clinic here in Charlotte, as well as at Active Charlotte Alliance; and no one could officially vouch for them.
I was supposed to be leaving my home and my peeps
I was flying across the country
I wasn't sure that I'd be able to safely shower when I got there
I did not know anyone
I did not know anyone who knew anyone there
Especially when it is considered that I am not a risk taker...
But accomplishments are bigger when the challenge is great. And one definition of courage is to be afraid and do it anyway. Sounds like a motivational poster with a picture of a big mountain, huh? So, I jumped onto that plane.
And here is where I landed.
And it was a risk well worth taking. My host mom put my (prosthetic) leg on every morning, and she helped me get on my ski pants and boots as well. But, other than that; I took care of things, as my three-year-old would say, "all by myself."
I picked up my suitcases and put them on the scale at the airport check-in desk. I even grabbed them off the baggage claim turnstile when we got to Colorado. I ran and caught my connecting flight. I dug in my bag and found my boarding pass when it was time. I opened, refilled, and closed my own water bottle (after the security checkpoint) so that I was not challenged by the refreshments served on the flights. And I even buckled my own airplane seat belt!
When we got to my host house,
I got my own little self settled in my room. I unzipped my own suitcases (even the cheap one with the broken zipper). I plugged my own chargers into and into their corresponding devices. I plugged in my own hands. Yes, they are battery-powered and need to be plugged into the wall to charge every night. And I negotiated the eating utensils at my host home as if I'd been using them for years.
In case you were wondering...I was able to shower independently (though my hairstyles were atrocious!)
These details are many, and it may seem arduous and monotonous (and silly!) to list them. But these tasks are bragging points in my life. If you had told me two years ago that I would be able to perform them, I would have told you to "stop with the crazy talk."
So you may think it's impressive that I skied down a mountain, but I am more proud to tell you that I did all the things necessary to get up that mountain.
My 12-year-old son may have said it best: "Mom, I feel like you came home with a newfound self confidence." Or it may have been my prosthetic technician, who told me I was "wearing that ski trip."
6,532 feet. That's the elevation of Durango, Colorado.
But I gained a whole lot more height.
Last month, I was fortunate enough to be selected for the New Dimensions Scholarship, offered by the Adaptive Sports Association in Durango, Colorado. It is offered to "people with a physical disability and/or progressive disease who regularly participate in athletic activities, are able to travel to Durango, and are new to disabled skiing or snowboarding."
The scholarship includes an all-expense-paid trip and four full days of skiing. Lucky me, right?
The first day is set aside for equipment and clothing fitting; and, considering my many physical challenges, I fully expected for this part to take the better part of the day. But my two expert instructors had me dressed and ready to go by 10:30am!
While I was hoping to come down the slopes standing on two skis, there was no guarantee. Other options include ski bikes (a type of bicycle with skis for wheels and two additional skis on your feet that are used for balancing) as well as mono skis and bi skis.
Here is Ginger, my new friend who has Multiple Sclerosis and is skillfully riding a ski bike.
And here are my new friends Reggie and Jake, both of whom have paralysis and some mad skills on bi skis.
While I was able to get up on two standard skis, I wasn't able to go nearly as fast or nearly as far up the mountain as my counterparts.
But ski I did; and I surprised myself by doing it successfully before lunch on the very first day! At this point, you are probably asking, "How, on Earth, was she able to do that?"
Well, as is the case with most of the things I do, I had a lot of help! On that first day, I had one skier in front of me, one behind me, and sometimes even one whose job was to hang out around me and protect me from out-of-control skiers and snowboarders.
My amazing instructors (Susan, Brian, Paula, John, and Adele) had been doing this for many years, and they quickly and easily connected a strap to the tip of each ski. With those tethers, they were able to steer me like a horse! In addition, they dressed me in a child-sized emergency vest so that they could slow my pace or even stop me if I started to fall! Here is a picture of me with my tethers - while I do look a bit unbalanced, I was all smiles!
I had full confidence in my helpers. In fact, I loved and trusted them so much that I am now convinced that all those 80's love songs were written about adaptive ski instructors!
Here I am with my two main instructors, Susan and Paula.
Another "strap" I needed that most skiers don't need is the one we used to hold my left leg (the prosthetic one) while I was riding the chair lift. Since my prosthetic is only attached to my residual leg by suction, the increased force of gravity could easily have won the tug of war with my body - meaning my prosthetic leg and its ski could have fallen off, down into the mountainous woods or even on top of an innocent skier! Not ideal.
So, to prevent that from happening (and to protect the entire mountain!) my instructor had to literally lasso my ski and then hold the strap very tightly - not easy when the winds picked up, but it proved be be a fun game ;).
With each hour of each day, my instructors used the tethers less and less. By Day Two, I got to take off the emergency vest. And I even went short distances without tethers. (They call that "independent skiing," but that's just fancy talk for "skiing without any adaptive equipment" or "skiing like a normal person.")
On Day Two, I mastered the skill of getting on and off the chair lift. Except for that one time when my arm slipped off, I lost my balance, fell, and really freaked out the college-aged lift operator. Which made for a great story that night at the brewery. Who else can use that for an excuse as to why she fell while skiing?
On Days Three and Four, I continued to improve. I was able to ride the bigger, higher, and longer lifts all the way to the top of the mountain. Aside from the prosthetic problems that landed me at the Hanger Prosthetic Clinic in downtown Durango, everything went quite well. My muscles remembered how to ski from TWENTY years ago. What a miracle!
As the days quickly passed, my team of instructors used the tethers less and less. On my fourth and final day, we were able to unhook all of them. And I got to ski, free from all of the adaptations and devices that were helping me to ski more normally.
Check out my big smile in the following video:
Just like Pinnochio, I "got no strings!" Just like Pinnochio was a "Real Boy," I became a real skier! I regained my athletic confidence as well as my self confidence. I re-learned how to appreciate and love my body. I rejoiced in all that my body can do and all that I can do. Instead of wallowing in the fact that my body is mostly man-made, I recognized my spirit, my heart, and my soul that have been there all along, just waiting to be realized.
Both in spite of and because of the people and the things that assist me along the way, I am Kristan.
I am Kristan. I am a wife. I am a mom. I am an athlete. I am an amputee. And, now I am a skier.