Today marks one year.
I can feel it in the long hot days.
I can feel the floor hard against my body last July 11th – unable to move my leg, unable to stand, trying to breathe through pain as excruciating as childbirth.
And I can feel the last time I ran.
It is there every day, the memory of my feet pounding in graceful rhythm, my heart beating, arms pumping. That last run is there when I don’t want to show up for PT, when I want to curl up in bed instead of strap on my leg brace while I make breakfast and then leave the house in a wheelchair. And every other run is with me, to the beach and back, around the neighborhood, in states across the country, not for prizes or times, but just because it is how I moved with joy.
Running is how I prayed.
When I was first pregnant living in a tiny Florida town perched outside a military airfield, hoping with all the rest of the wives that our husbands’ training aircraft didn’t fall out of the sky… Then other expectant mamas would commiserate how they couldn’t wait to have a glass of wine, be able to see their feet again, and slip into their jeans. I kept it to myself that what I missed most of all was a brisk run through the palm bushes and pine trees. My nine pound son didn’t take long to swell my frame to something I couldn’t recognize much less propel into a jog.
I hadn’t been prepared for how disabling and disfiguring bringing new life into the world would be, and I wonder when I said goodbye to the body of my girlhood. It didn’t happen all at once, but instead incrementally as I left the hospital still seemingly seven months pregnant, as my breasts spilled, my stomach sagged, and my schedule came to revolve around someone so fragile that it was my responsibility to simply keep him alive. Then there were deployments, stillbirths, emergency c-sections, diapers, miscarriages, and every-day-life as a mom to four.
After each birth I would wait the prescribed amount of time and then my feet would begin to beat the pavement again in a pattern of tentative running and restorative walking. I would run and walk in patterns that eventually led to being able to easily glide miles, and then I would feel I was home again within myself.
Choosing not to resent the skin sliding farther down my abdomen with every child born, I instead praised my body for another miraculous creation and thanked it for continuing to run.
With my legs still spinning I didn’t realize I had said goodbye to a part of me. Dreams and I were still acquainted, but I felt they were for another time – later when I was less needed. That was ok with me, because it was enough to feel the air push in and out of my chest and see the cadence of my knees raised and soles placed, hold my children close, and enjoy my front row seat to the magic of their growing years.
I feel all of that in this summer air, muggy and sun-drenched like the breathe I pumped in and out on my last run.
A little over a year ago.
Now I am disabled and the list of what I’m unable to do has grown to include such mundane tasks as walking. Running is a far distant memory whose hope lingers on the horizon as a painful but motivating reminder of what I have lost and what I still long for.
The calendar says July 11th, and I know now that is all I am given. Today.
I can plan, hope, and train, but I do not know if tomorrow will come or what it may bring. So it is up to me to rise each morning, love well those in my life, and lay hold of a bit of my dreams right here and now.
I know from what I have journeyed through in these forty years of mine that grieving is essential, but it is also up to me to search for joy – Every. Single. Day.
I have learned that the word disabled connotates what I can’t do, and it’s a necessary distinction when functioning in a body that isn’t able to do what the majority of bodies can do. A body that has been altered to a shadow of what it had been.
But as I shared in another post, when something so essential as walking is taken away you have to find what you can do. You have to adapt and focus on what can be done. (The post you are reading now is part two of how I feel about adaptivity versus disability, click link above to read part one)
It is this adapting that has shown me that truly there is no limit, and there is always joy in every part of our journey just waiting for us to uncover and celebrate.
Driving by the spot where I went for my last run always hits me in the gut, but my arms can now pull my body up strong. Pull-up after pull-up when I used to not even be able to do one.
Looking at past pictures of myself standing tall without a wheelchair, crutches, or a leg brace can sink my heart, but I no longer feel the need to offer mental apologies for my motherhood deflated figure or even my wheels. I am here, and that is a treasure so valuable and transient that I have no time to waste on anything less than acceptance and seeking joy.
Now that the term disabled applies to my experience, the only way to survive has been to find each and everything that I can do, that I want to do.
I can’t make it all happen right now. I am a mother and wife which also translates into chauffeur, teacher, nurturer, cleaner, cook, schedule administrator, diaper changer, tea-party guest, listener, grocery shopper and so much more that I wouldn’t miss for the world.
Something has changed though. Each morning I wake up and ask myself… What do I want to do today? How can I make that happen? What can I do?
If disabled focuses on what can’t be done, then adaptive focuses on what can be done.
There are days that grief settles in, when I just want to feel my legs running, be able to set the physical pain aside, not have to answer another prying question, stop evaluating excursions for their accessibility or clothing for their ability to fit with my leg brace. There are days that I sink a bit, but I know that my heart will rise again…
Because this past year has opened my eyes to human bravery and adaptivity. There are others living without any limbs; others facing each day knowing that a disease will rob their bodies as it slowly progresses and steals away movement, speech, thought. There are others battling cancer and fighting to recover from strokes. There are young and old embracing each and every day no matter what it holds, adapting and finding ways to adventure on.
So although this year has been harder than I could possibly describe, and I sit here knowing the future may look very similar…
In spite of that, I don’t have time for too much heartache over what I have lost. I hope and work for healing, but when the doctors tell you they don’t know where the ceiling of recovery will be, that it may be very low, but the sky is the limit on maximizing the rest of your potential…
Well then, you get to work maximizing the rest of your body and soul as if your life depended on it, because your joy does for sure.
I know you friend. I know there is something you can’t do. There are physical limitations, emotional wounds, financial constraints, family dynamics.
I know you friend, and there is so much you can do. There are dreams you have, opportunities you can find, gifts you should share, plans you must make, joy to be found every day in so many ways.
Whatever our circumstances may be, adapting feels crazy. I promise you it will look unlike anything you imagined, but it will be so worth it. And just maybe it will be one step in the direction of reclaiming what has been lost in some way.
We are treasure seekers, looking for God’s goodness and joy amidst even the hardest of circumstances not so we can get an A for lessons learned, but because our Father is here with us in the trenches even when things don’t make sense.
Together we can adapt and adventure on… Tell me friend what are you overcoming, what dreams do you need to dig up, what can you do right now that brings joy?
. . .
Below are some photos and videos of my adaptive adventures with my family this year. What you can’t see are the countless hours spent at physical therapy and navigating the medical world and insurance, the pain, tears, sleepless nights, mortifyingly awkward social moments, and more that has been so hard for the past 365 days and will continue to be a challenge. But below is what I want to celebrate from this year, because not only has God kept my family and I together and moving, but we have met so many amazing people and organizations who give of themselves so that when faced with disability people can learn new ways of embracing life instead of giving up. And if you want to read more about my journey this year you can click here.
. . .
Mono-skiing while my kids skied and snowboarded through the United States Adaptive Recreation Center on Big Bear mountain. IG @usadapt >Ice skating on wheels at the Liberty Station fundraiser for Rady’s Children’s Hospital >Kayaking in the rain with REI and my hubby >Horseback riding through Ivey Ranch. In the past I competed through 4-H and at the collegiate level, and I can’t wait to introduce Joy to riding >Hiking some of the awesome accessible trails around San Diego with my family >Completing the Renegade Memorial Day 5k Race with my family, on crutches with my leg in a sling >Celebrating after my first time successfully off-roading on crutches with my leg in a sling >Camping with my family by the beach in a great accessible site with wheels, crutches, and a leg brace >Surfing at an adaptive clinic put on by Challenged Athletes Foundation and Ironman Foundation, and getting inspired by the Team Wattie Ink ladies to start participating in triathlons to fill that hole that not being able to run has left in my heart >Swimming masters swim several times a week to train for triathlon relays and eventually full triathlons as Challenged Athletes Foundation sets me up with adaptive gear to use. IG @cafoundation >Competing in my first triathlon relay at the San Diego Triathlon Series thanks to a grant from Team Catapult. I swam a kilometer, my friend biked 20k since Jesse was out of town for military training, and my son David ran 10k. It was an awesome experience and I can’t wait for the next one! IG @team_catapult >These are super quick video clips of me finishing the 5k on crutches, doing a little off-road assent on crutches and mono-skiing on Big Bear mountain >
“It’s so good to see you up.”
I brace for it, but still it stings every time.
After months of using my full leg KAFO brace at home I have begun to wear it into some public settings. I enter at a snail’s pace, all eyes on me. I maneuver by swinging from the hip with my left leg wrapped and locked straight in thick strips of titanium and carbon fiber that extend painfully all the way into my shoe and around my foot, giving the illusion of a slow but usable leg.
When I had to begin using a wheelchair I would sit in the car steeling myself for the awkward stares and conversations, praying I wouldn’t meet an obstacle I didn’t know how to navigate. I would only convince myself to exit the car and roll in after an internal reminder that if it felt too uncomfortable I could wheel out as quickly as I went in.
That is not the case when I wear my leg brace. I inch my way in knowing that a retreat will be just as slow. Knowing that I will be treated like someone with two functioning legs. I will be expected to turn on a dime to get out of people’s way in the grocery store. No matter how much someone walking with me slows down, I will still awkwardly be moving even slower. Unlike in the chair when there is an overabundance of assistance offered, very few people will ask me if I need help navigating obstacles such as doors or stairs. No one will ask me if I need a seat.
They are all just so very happy that I am upright. “It’s good to see you up.”
And they are confused that I am not more delighted about this. They are confused when I sit back down.
“You’re walking now – looking good!” they say. “How long has it been?” they say.
As each new stage of this journey presents itself I have found responses that help ease the discomfort, because social settings rarely lend themselves to in-depth conversations. In response to these frequent one-liners it would be difficult to explain…
…that when I first got the KAFO brace I could only be upright in it for a few minutes and it has taken months of hard work to be stable enough to navigate a short trip into a public place, and I still have not been designated a “community ambulator” by my physical therapist.
…that when I am in the brace I am in more pain than when I am in the chair and that the longer I wear it during the day the more muscle spasms keep me from sleeping at night.
…that I have fallen flat on my face and on my back in this brace and instead of glorying about being 5’9” again I am mostly just concentrating and praying that I don’t end up with my head on the pavement in front of everyone.
…that after almost a year of neuromuscular rehabilitation at an excellent outpatient program, this may be close to as good as it gets, and if there is more progress that will also present hurdles that are as emotionally and physically difficult as standing before them in this brace.
…that I have not been miraculously healed but thanks to good insurance and helpful doctors and physical therapists I have been equipped with equipment and therapy that has helped me to adapt and have access to several different mobility aids that I use interchangeably depending on the situation in order to minimize pain, promote recovery, stay safe, and retain my personhood and role as a mother, wife, friend, woman.
…that although there are always hard things about using the chair, and the initial transition to being in it was more difficult than I can explain – this country is very accessible and I can cover a lot of ground in it which I cannot say the same for with the brace at this point.
…that when I enter a situation in my brace and without my wheelchair I am just desperately hoping that no wrenches get thrown in the plan, because I can’t go back and forth to the parking several times like I can in my chair, I can’t chase a toddler or pick her up in my arms like I can in my chair, and just because I am upright does not mean that I can navigate areas that are not designed to be accessible. That is what I am praying, but inevitably with four kids there is always a wrench in the plans.
…that with every step I am desperately hoping my hip will cooperate when I ask it to swing and that my foot will flex the small amount it can to circumvent the constant texture of the ground that is enough to upend me. And that as I stand I am hoping that my leg doesn’t spasm; that I can just function as “normally” as possible so I don’t feel embarrassed while also wishing that others would understand that nothing about what I am navigating is normal or easy.
…that although it is difficult to have the chair be the first thing everyone sees, and know that it remains the center of attention with anyone who doesn’t know me well enough to be “used” to it – it’s also incredibly difficult that often the leg brace isn’t even noticed if I’m behind a stroller or grocery cart. This means my disability and possible need for assistance is totally unknown. It’s hard to experience a store employee broadcasting over the loudspeaker that a customer in a wheelchair needs help, but it’s equally difficult to have to explain why I need assistance finding something in a store and then watch the employee walk towards it at a speed I can’t possible keep up with.
…that honestly it’s harder emotionally for me to be slow than short. I know it may feel more uncomfortable for others to look down at me and see wheels attached, but I hate the feeling of trying to carefully ease my leg down a flight of stairs or inch up an uneven path knowing that there is a crowd forming behind me while others have to wait because my one-legged self is in their two-legged domain instead of on the accessible path where at least I am speedy in my chair.
…that I feel like less of a mom when I am in the brace relying on crutches because then my hands have also been taken from me and there is little I can do to help with my two-year-old daughter. In the chair I am able to get to her quickly and scoop her up onto my lap which is a place she loves to be. On crutches there is no part of my body that is able to function in the way it was used to, and I have to watch helplessly if she needs something instead of attending to her myself. This isn’t even possible if I don’t have someone with me to help so her and I go most places in the chair together.
…that an Instagrammer I came across, @wheels2walking, said it well when he wrote that although it is hard to be treated as fragile when in the chair, it is even harder to be treated as less disabled when on crutches because often one can do a fraction on crutches of what is possible in the chair.
…that my functionality in the brace not only varies day to day but hour to hour and even moment to moment. If someone sees me up and on my way from a parking spot towards a public gathering place I may look like I am moving somewhat easily, but that will not be the case after I have been standing or moving for some time and am just hoping I can make it back to the car successfully.
…that when I hear others say it’s good to see me up, I know they mean well and are wanting to celebrate with me, but it feels a bit like my worth is being judged on my ability to be up which I can only do a fraction of the time and not in any way that is similar to what they experience. It feels a bit like if someone were to see someone who is struggling with depression who just managed to make it out of the house for the first time in weeks with a brave smile on their face and they said to them, “it’s good to see you happy.”
I long to be able to share all of this.
And I long to say that it would be wonderful to just hear,
“It’s so good to see YOU.”
But I know they mean well. I know everyone is rooting for recovery as much as I am and there is just no way to know the reality of someone’s story without living the nuances yourself.
So instead I give a wry grin and mumble something about, “Well, I’m shuffling,” hoping we can move on to other topics.
Then they tell me I look great, looks like walking to them. A scream wells up inside that I stifle down because it’s not polite to explain that I may be “ambulating” as the physical therapists say, but a typical gait consists of so much more than being on your feet. Yes I’m getting from point A to point B slowly as long as those points are pretty close together, but my knee is not bending with each step like theirs’ do, my leg is not lifting and then supporting weight, my foot is not going through the complex choreography that is a step.
And when I sit down next to them with my brace on, as their bodies find a comfortable position to rest in, weight shifting, legs crossing and uncrossing… My leg is locked into 90 degree angles, a quarter of my body in a cage with the discomfort spreading quickly into my right hip, lower back, and up through my spine. Unless of course I take my brace off, but in these surface encounters I just don’t have the courage to vulnerably set “my leg” next to me with the shoe still attached since it’s easier that way, or struggle to quickly don it if I need to leave my seat.
I wish I could tell them I long to hear that they are just happy to see ME, and if they feel prompted to say more than that when they first see me up in the brace, I would love to hear,
“That must be hard.”
Because it is.
Because I know they are also doing something hard. We all are.
We can’t possibly understand the nuances of each other’s stories, but we can acknowledge that they are difficult, and that it is a miracle that we are all here with each other, walking, shuffling, and hoping through each day.
The reality of these encounters is that I summon the courage to strap the titanium on, lock my leg out, and listen to them say it’s good to see me up while I just try not to fall over.
I mumble and grin and wonder if that means they will be disappointed to see me sit down when the next part of my day requires more speed, agility, or endurance than the brace can offer.
I mumble and grin and say, “It’s so good to see YOU too.”
Because it is.
The miracle is that we are here together, sitting or standing, hearts breaking or hearts full, breathing and greeting each other.
It’s hard and we are here.
If we grow old enough before we leave this world it is inevitable that none of us will stand easy and steady on our two legs. We will all experience the uncertainty that comes with being human. We all learn of frailty and bravery in our own way as we journey through whatever this story throws at us.
I say, “It’s good to see you,” because I know that the smiling face before me is holding their own pain just as I can’t easily explain to them how the titanium hurts, how tonight my nerves will feel like fire, and spasms will shake my leg.
I can’t put into words how I just hope they are happy to see ME whether standing or sitting.
How I hope these words I am writing won’t offend, but will draw us a bit closer so we can lean on each other.
(p.s. pllleeease don’t feel bad if you have ever said the aforementioned phrase to me 😉 Love ya friends! )
It’s been over nine months.
Since I jumped out of bed and easily went about my day. Since I laced up my Sauconys and ran my favorite three mile loop to the beach and back.
Nine months, and it’s becoming less of a shock to live in this body.
I have worked to process, grieve, and hope, but most of all time has worn me in. Spend months in a wheelchair and leg brace and it’s no longer a struggle to roll into any social setting. But there are still those moments when after seeing countless runners race by all of a sudden one catches my heart off-guard and I break into a million pieces when I realize that’s just a memory for me at this point. There are still those moments when I stop and think about the fact that everyone else effortlessly walked in the coffee shop but I had to roll alongside my husband and children. And there are those moments when I wonder what my two year old daughter feels as she sees me lose my balance in my leg grace, barely catching myself with a crutch as she sweetly calls, “I gotchyou mommy.”
In February, right after the universal season of new beginnings and goal setting, my temporary disabled parking permit expired. I went to the DMV and drove home with a blue permit dangling in my window speaking of permanency on some level.
It hangs there reminding me of a word that now pertains to me – disabled.
There are many of these words and even more opinions on what they mean, how they should be used, and what they signify.
Disabled, handicapped, differently abled, physically impaired, special needs, the list goes on…
I’m learning through experience about these words, all that they imply, how they feel, and how others accept or disagree with them. There are those who don’t identify with being called disabled and prefer a term that feels more positive such as differently abled. There are others who feel shying away from the word disabled and replacing it with something as nebulous as special needs negates the challenges they face. There are words that one might say lightheartedly about themselves or a friend in a similar state that would nonetheless be an insult coming from anyone else.
An in-depth and complex conversation surrounds these words that now describe me, but honestly I haven’t given it much thought; I’m too tired from constant physical therapy and learning how to navigate this world without a two-step gait.
Nine months is the same span of gestation that has brought each of my children into this world, but all it has birthed this time is a new normal. A few months into this unexpected journey I was engaged in small talk with an acquaintance. They mentioned how something had crippled something else. I don’t remember what, maybe it was finances and a small business, maybe it was confidence and academic performance. All I remember was that word. The word I had been trying not to hear. Crippled. Then several more times that same week others used that word to describe something that was broken, deformed, useless, even detrimental. It was just part of their vernacular – a car crippled by a wreck, the crippling effects of a disease… One time the speaker stopped almost mid-word, thought about switching to a different adjective, and then let the empty silence hang heavy between us for a moment before they moved on.
For the next several weeks I woke up every morning with that archaic word running through my head, saying that I am crippled. Maybe one day I would not be, maybe I always would be. Either way, right then it felt like an ugly word to hear.
Most days I had replaced that word with the term disabled by the end of the day, but most mornings it had returned while waking up and struggling to rise from my bed which was the part of the day that still felt most shocking to me.
What was more unsettling than the word crippled in regards to my body, was the thought of its close cousin, the word cripple, because that word held an identity. There is no way to make the word disabled be the person themselves. Someone can say I am disabled, handicapped, or differently abled, but all of those words are adjectives with no way to become a noun. I can have a disability but the English language ordains that I cannot be a disability. I can be considered disabled but that is still something stated about my physical state; the word cripple feels all encompassing. When that adjective others used in conversation tried to take up residence it threatened to persuade me that this leg that can’t do anything useful defines who I am as a person.
Maybe it is because somewhere inside of me I know that even though it’s most often used by others about me, and it is on the places that I park, the hotel rooms I stay in, and the routes that I follow on the sidewalk – disabled is not a word that can encompass my experience. Maybe that is why that word crippled was able to assail me after those casual conversations because there was a hole that needed to be filled.
I am learning that for anyone, regardless of their ability, experience, race, gender, age…
When we do not have a word that accurately describes our experience, then we are vulnerable to words that do not do us justice.
In order to replace a negative seed that has been willfully or benignly sown, we need a word powerful enough to fill the hole that exists.
I know others use much larger, more powerful, positive words to describe themselves and their experience. I am working hard and fighting to recover, but I don’t feel like a warrior. Someone calls me a hero on social media; this is a foreign concept to me and not one that I can internalize as my own.
But one afternoon I was hurriedly filling out an application for a surf competition for my son. Name, address, team, etc. At the bottom there was a box to check or leave blank. It said…
and had the iconic picture of a wheelchair user that labels parking spots and guides accessible pathways.
This was the word I so desperately needed on this journey. This was the beginning of a better idea.
Am I adaptive?
Am I living an experience more with adaptability than with disability?
I couldn’t know then how much the answer would be yes, I simply knew that no hurtful word ran though my head any longer in the mornings when I dragged myself out of bed still unable to stand steady on two feet. I had been resilient throughout this unexpected journey, but now my first thought each day was about how to find one more way to live life to its fullest, one more way to move myself into a new adventure.
Yes the word disabled may pertain to me. There may be a hundred different ways to say that, but my favorite is that…
I am adaptive.
Really, when you think about it, we all are. What are you adapting to in order to overcome?
What is the word that never should have stuck in your soul whether you overheard it, had it spoken over you or have no idea where it came from?
What word is the actual truth that can fill the gap so that negative word has no place to stand in your soul?
I don’t know what the specific word is that you need right now, but I know one word that is true of each of us. Beloved. Our creator loves us and in the absence of figuring anything else out that word has often been just what I need.
Walking and running again is still my hope, but in the meantime I will be adapting and enjoying everything this amazing life has to offer. I have already had some of the most amazing adaptive adventures with my people and some really good people this journey has introduced me to.
I want to tell you more in part two about these special times and also the awesome people that have made them possible, because adapting takes a village. And I can’t wait to show you all the photos! The photos in this post are from a Stoke for Life surf day that I took part in and I will share lots more resources in the next post…
One moment I was a mother of four, juggling everything while my husband was deployed. I was tired but capable. The next moment I was on the floor unable to move my legs.
I had attempted a super-human leap across the room to catch my two-year-old daughter from falling. There was a burst of incredible pain, and I ended up lying in the middle of my living room, trying to drag myself to her, unable to reach a phone in the empty house. That was the beginning of several months of hospital visits, appointments with every kind of specialist, and so many tests. While my right leg recovered, my left leg was paralyzed. I lost the ability to walk and had to learn to navigate life and motherhood from a wheelchair.
The doctors came to the conclusion that a specific complication from my initial injury had been overlooked and caused nerve and muscle damage. However, all the scary conditions were also discussed and screened for. It’s startling how facing the possibility of diseases that could steal everything from you or take your life puts the loss of a functioning limb into perspective. And now that I am learning a new normal, I think about the mothers, daughters, and grandmothers that I have seen during my weeks in hospitals and doctors’ offices—brave women who are battling far worse things than I am. Not one of them deserves what they are facing more than I do, and the colorful head scarfs, bedazzled wheelchairs, and sweet smiles are a testament to the grace they are embodying…
I don’t think I lost the use of my leg because God wanted to teach me something, but there is one thing I have heard very clearly throughout this challenging season. Today I’m sharing those words over at (in)courage
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It has been over five months since I took a normal step.
That’s almost half of a year, and I no longer sit in the car trying to work up the courage to go into a store or a social setting.
Sometimes bodies don’t work like you have been accustomed to. Sometimes walking isn’t an option. This has ceased to feel like an enormous shock to me. Disability is a possibility at any moment in time for any of us, and it comes in varied forms with many nuances and timeframes.
I wish I would have written one of these posts at each month marker, but I can recap here…
One month was uncertainty, fear, and shame as I was tested for terribly scary things and tried to come to terms with how to remain mobile while relinquishing the life I was used to.
Two months was hope and exhaustion as I began a painful regimen at neuro rehab, met what my life looks like in the near future, and established a new rhythm of “normal.”
Three months was unexpected joy, and a daily grind as I found my footing with adaptive mobility, was surprised by my hubby with the best fortieth birthday ever, and tried to cope with every conversation being reduced to others asking me how one body part is doing.
Four months was confidence and resilience as I chose to embrace life as it is while continuing to work hard towards recovery, conquered most things on my own including Costco, and decided that I don’t have to live up or down to anyone else’s expectations.
Five months is a new chapter, acceptance, and mixed emotions as I welcomed my husband home from a nine month deployment, coped with introducing my changed body to him, found everything fun under the sun to do together, and let it sink in that life will look similar to the past five months for a decent amount of time or more.
Now it is the holidays, and then it will be six months since I was able-bodied with two working legs. That is half of a year. The doctors say in another year I will have a better idea what I will have for the rest of my life. It feels like a lot can change in a year, and I know I should be encouraged that there have been small signs of progress. They tell me I am on a trajectory that will land somewhere between the wheelchair I’m in or going for a run as easily as in my past. To me it seems that trajectory is barely creeping along.
So it’s often easier to be around people I don’t know, because with them I don’t have to answer the questions and reiterate the obvious – that I still cannot walk. Because people that don’t know me have to treat me like I’m normal, and that makes it a lot easier to live life. Because if you’re unsure if you will get to walk and run again, it doesn’t make a lot of sense to sit around waiting.
Life is beautiful no matter how you have to access it. When you realize it would be easy to just give up and that would mean slowly losing the rest of your body as you know it and your joy… Then you find every opportunity to move in any way you can as ridiculous as it may look or feel, and you take every opportunity to laugh, smile, hear stories and make stories.
I didn’t learn these things from losing my leg. God didn’t take my leg to teach me these things or straighten me out. This all just happened, because shit happens in this world…
I grow; it’s what I was made for. It’s what we all are meant to do.
We grow and when things happen we keep growing, and there are things we knew before and things we now know in the midst and on the other side.
Because it’s sad to stumble upon a glittering outdoor skating rink with your husband and not be able to strap on your skates and twirl, but the next best option is to let the skate-guard push you around the rink in your wheelchair while hubby tries to keep up and you all laugh and laugh. When the next best option is the only option, it doesn’t make it ok, but you scoop it up because you’ve become intimately acquainted with how very fragile life’s entire premise is.
It has been the hardest five months, it has been a good five months, and I’m laughing at the days to come.
So where am I right now? That was the recap and what my heart is choosing to focus on, but I know that to everyone who has never gone through something similar, my day to day is a big question mark. Since it’s hard for me to spend most conversations giving updates on my leg, I want to use this blog and social media as a way to share with others so here are some more details based on the questions I am asked daily…
No I do not have a disease. Yes I do have answers. Most of them are in this post. A complication from my initial injury went undiagnosed and untreated leaving me with paralysis in my left leg. What is still uncertain is how much I will recover in that leg. The doctors tell me this will be a long road.
Every tiny bit of progress is hard to process because it means facing the fact that I’m at a place where just getting a muscle to twitch is cause for celebration, that being able to swing my hip forward a bit with a full leg brace locked straight, two crutches, and my physical therapist in the hospital hallway is the peak of my mobility currently. So when others ask me if there has been progress, forgive me if I don’t want to process all those mixed emotions in Trader Joe’s or the church lobby.
Yes there has been some progress, but real life is not Hollywood. It’s not one dramatic moment at the parallel bars like you see in the movies when someone stands up and struggles to walk. Real life is a snail’s pace where one day you stand at the parallel bars for a few seconds before you sit back down in your wheelchair, and another day your left leg is in a brace and you step over blocks with your right leg between those same bars. While everyone else in my family goes for a run, a bike, or a surf in the morning; while they move their body into strong and graceful yoga poses – I strap a leg brace on and just try to keep my balance with shaking hips while I step on and off of a block with my good leg. Yes this is progress because when I began at neuro rehab I would be strapped into a standing cage for fifteen to thirty minutes just to work on being upright. But it’s not progress that’s easy for me to talk about, because it’s a far cry from running easy to the beach and back, steps sure and wind in my hair. It’s hard to talk about because I don’t know if my future looks more like shaking hips and struggling to stand in a brace or running that three mile loop again.
I know everyone means well when they ask the questions; when they want to talk about prognosis and progress. I know they mean well when they tell me to keep working hard and thinking positive. But it’s hard to explain that the hard work looks like lots of time on the phone with our health insurance company and making doctor and PT appointments. It’s hard to explain how frustrating hearing the encouragement to “work hard” is because the bulk of my therapy consists of having my left leg attached to a stationary “bicycle” that turns my leg while twelve electrodes placed from hip to foot send sequential electrical shocks into my leg causing the muscle contractions that I cannot and stimulating my nerves. It’s frustrating because I can’t do this work and instead just have to endure the pain of having it done to me. It is helping though. My leg looks better as atrophy is halted and reversed. My reflexes are coming back, I have less pain and muscle spasms, and we already talked about the “progress.”
Speaking of muscle spasms. That is one of the things you don’t know about, doubtless don’t think about, and that I don’t want to share or talk about. Our bodies are finely tuned machines, and when part of them isn’t working that doesn’t mean that it just doesn’t work. When muscles can’t do what they are made to do, spasticity is part of the equation. Most mornings I wake with my foot curled in a spasm. Depending on the amount of the functional electrical stimulation therapy, other activities like therapeutic riding, using my brace, physical therapy, etc seems to determine how much my hip and leg spasm.
And as strange as it may sound to everyone that can easily and gracefully ambulate (that’s what all the medical people call walking) I feel the most disabled when I am without my assistive devices, not when I am in the wheelchair or leg brace. In the wheelchair I can move smoothly and thanks to the ADA I can access pretty much everything without a lot of surprises. I don’t fall, shake, or have to battle shame over how my body looks. When I am in my home, taking a shower, getting in and out of bed etc I am hit squarely in the face with how my body moves and doesn’t move now. It is not pretty or stable, and it’s something that only those closest to me see. Those in the medical and disabled community call it transferring… For someone paralyzed from the waist down, moving from their chair to their bed is a difficult and vulnerable process that is practiced until it becomes part of their routine and new skillset. For me transferring looks like getting out of my chair, taking my brace off and dragging my leg into the shower, lurching back to my closet to get dressed, and leaning sideways shakily while I brush my teeth balanced on one leg. I think calling it a transfer leaves my dignity more intact, and that is why when someone sees an Instagram story where I’m upright in my leg brace, and they exclaim “Glad to see you’re walking now!” The answer is, no I’m not, and also it’s all a little more complicated than that.
I will try to continue to update you, but for all the reasons I shared above I will probably not be giving a run down on every bit of “progress.” I have things I am thinking about; ways my heart is growing that I would rather spend my time and emotional energy sharing with you. And when everyone encourages me to think positive I want to explain to them that a big part of that is embracing life in the wheelchair and brace for the time being, without a functioning leg, while I spend multiple days a week at the hospital for PT. Because although I hope for my future to look different than my present and have confidence that recovery is possible, the least positive thing I could do is to put my life on hold, hate my body because it works differently than it used to, and subject myself to the frustration of waking up each morning expecting to see a huge change overnight instead of cultivating contentment while quietly acknowledging slow momentum in the right direction, and being grateful for life whatever it may hold or however it may look.
If/when I can get out of this wheelchair, off of crutches, and throw the leg brace away you will be the first to know, because if I can ever start running again I probably won’t stop. You may just see me and my Sauconys criss-crossing the globe, and it will be very very obvious that things have improved.
Until then adaptive Sharon will be making the best of things. I can’t promise that it will be pretty, it definitely will not be easy or graceful, but it will be interesting.
. . .
p.s. Thank you all for your prayers and love. I hope that what I have shared lets you know that I value you and am thankful that you care about my story!
And for those of you who know someone who is going through something hard physically, emotionally, or relationally… May this post be a reminder that we can’t really know all the details of another’s story, and often much of it is difficult for them to share, but just by acknowledging that there are nuances and giving them space to share or not share in the way that they need to we can show them love and compassion.
And also may this be a reminder that social media can be a tool for good, but that it is quite flat and unable to paint the full picture… Today someone recognized me at the Y and introduced herself to tell me that she had been praying for me. Wow, amazing and so uplifting! But also social media can’t possibly show the whole story. Below are a picture of the FES (functional electrical stimulation) equipment, and the standing cage, but they can’t convey how uncomfortable the hour long electric shock sessions are that happen multiple times a week, or how this peace sign flashed at the start of the first time I was standing strapped in this contraption was followed by what felt like hours but was only about fifteen minutes of a spasming hip and just basic misery.
I don’t like to talk much about the difficult parts, because I want to stay focused on life being as normal and joyful as possible, but I think it helps to try and share what I can here so our connections in real life can be as meaningful as possible.
Sending love friends and thank you for reading! Also feel free to share this post with anyone that is wondering what the heck is going with me 😉
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