Answers to All Your Questions

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…

And

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 😉