Walking to Wheelchair, Part 3: Redefining Normal

In honor of January 20th being International Day of Acceptance, I thought I’d talk about how I transitioned from walking full time to being completely wheelchair bound. This is the final segment of my personal story of how my mobility has been affected by the progression of Limb Girdle Muscular Dystrophy type 2A. Read part one and part two of my story first.  

So who do you call for help with something like this?

My first thought was how much I wished my dad was still around to ask for guidance. And I worried that my mom, who I go to  for everything in life, would be more focused on consoling my emotions than figuring out how to start the process. In the end, I called my aunt.  Being my father’s younger sister, she had grown up watching him go through the same progression, but she didn’t carry the guilt of feeling responsible, like parents innately do.

The first step in getting a power wheelchair, for me, was getting an official diagnosis. After my older brother had a muscle biopsy done as a toddler, my mom refused to put me through the same horrendous experience. So for the first twenty-two years of my life, my diagnosis was an assumed one. My dad had it, my older brother had it, and I showed the same sort of weakness, so I had it too. Insurance companies aren’t going to pay for an expensive piece of durable equipment from just an assumption though.

Starting with a referral from my PCP, I got my official diagnosis from the Neurology Clinic at the PennState Health Hershey Medical Center, which is where I go for my annual MDA clinical visit. After the diagnosis, my neurologist was able to write a prescription for a power chair for me, which was faxed to the provider I was using to set up and service my new wheelchair.

In order to make Medicare happy, a part of the approval process is being evaluated by a physical therapist. This helps determine what kind of wheelchair and components are necessary, based on my overall strength and mobility.

Because I was still walking to some extent, I was asked to show (or explain) how I walked, got up from a chair, got up from the floor, transferred from a lying position in bed to my chair, how I maneuvered around the bathroom to use the shower and toilet, etc. At the time, I underestimated how important this part of the process was and the value of being brutally honest with my strength levels. And unfortunately, because I had the “oh it’s no that bad, I can still do this and this and blah blah blah” attitude, I ended up with the most basic modeled wheelchair. By the time I was able to get another prescription, I knew to emphasis where my mobility lacked, and now use a power wheelchair with tilt/recline.

In the three months it took for my chair to be ordered and delivered, the remaining issue to tackle was how to transport it; which was resolved by trading in my small SUV for a larger one that could handle a heavy duty metal lift to carry the wheelchair. It would be another five years before I started the process of modifying a van I could drive myself,

And  then one day, a wheelchair was being delivered to my house. I ran into corners, toes, and every single wall in my house as I began the unique task of relearning depth perception from a wheelchair. I could tell you that I’ve become a better driver since then, but my walls would tell you otherwise.

It was not an easy experience at times. I had to come to terms with the harsh truth that people reacted differently to the chair, in good, bad, and unexpected ways. There have been blows to my self-esteem that I’ve had to face along the way. Frustrating situations and lack of accessibility that have challenged me. I still deal with a lot of that, today.

But on the other hand, finally deciding to use a wheelchair has saved my body’s precious strength. Daily life wasn’t an exhausting task anymore. My last semester of college, I finally got to spend time on campus like a regular student. I could go shopping by myself, for the first time, without relying on someone else to save me if I fell. Most importantly, the fear to live my life was gone. 

And you know what? My life stayed pretty damn normal.

I kept going. I kept living. The beautiful, messy, wonderful chaos of my life continued, wheelchair and all.

I earned my Bachelor’s degree. I started a blog that has given me the chance to travel to NYC and make amazing friends near and far. I got married, and then divorced, and then blessed to fall in love again. I worked at a job I hated, and found one I love. I became a mom, and am excited to welcome more children into my life as a foster parent.

It’s been almost a decade since I first transitioned into a wheelchair, and a lot has changed. My mobility and physical strength will continue to change, as life continues, but then again, so does everything else.

But if this experience has taught me anything, it’s that change happens because it needs to.