By Whitney Bailey, as told to Rachel Reiff Ellis
I was born with spastic quadriplegic cerebral palsy. All four of my limbs -- both arms and both legs -- are hard for me to control. The way I describe cerebral palsy is that it happens on a spectrum. Some cases are mild, some are moderate, and some are severe. For me, the spasticity part is very severe. It affects my whole body: my ability to walk, my breathing, even the way I talk. I use a wheelchair to get around.
I have a unique perspective on life with spasticity because my condition changed drastically -- for the better -- when I became an adult. As a child, my spasticity was so severe that I needed a caregiver to do everything for me. I talked very quietly and couldn’t enunciate at all. My body was drawn up into itself -- my arms were to my chest and my legs were contracted. I was about 90 pounds soaking wet. I couldn't physically move myself.
Then when I was 18 and a senior in high school, I got a baclofen pump, which is a surgically implanted device that delivers a muscle relaxant straight to your spinal canal. It totally turned my world upside down, in a good way. Baclofen is a common medication used for spasticity, but up until that point I had been taking it in pill form three times a day. It barely touched my symptoms as a pill, but delivered through the pump, the change was dramatic.
Finding a Balance
This new treatment relieved my spasticity enough that -- with a lot of hard work and perseverance -- I was able to walk across the stage at my high school graduation. Since then, I’ve gone on to earn a bachelor’s and master’s degree, and I live alone without a caregiver.
It’s clear that I can be independent because my spasticity has been relieved with this medication. Without it, things would be so bad that I wouldn’t be able to function on my own. But ironically, I also need some spasticity to get around. It’s a catch-22. The rigidity it provides helps me do certain things.
For example, when I raise my baclofen dose to get some pain relief, I notice I fall much more often. I don’t know how to move with loose muscles. It took me a while to realize that there is a sweet spot of medication dosage that manages the pain some but still gives me the stability I need to get around without falling. I'd rather deal with mild pain and be able to get around on my own than be pain-free and fall constantly. Since deciding not to go up on my meds, I haven’t fallen in over a year.
How I Manage
Cold weather is my top spasticity stressor. When it gets cold outside, I become a homebody and avoid the chill as much as possible. Lying flat can set it off, as well as constipation. It’s a frustrating cycle because spasticity can cause constipation, which then causes more spasticity. So I try to do what I can to get out of that loop.
Being as active as possible helps tremendously. Any time I can be out of my wheelchair, any opportunity I have to pull up and stand or stretch, I take it. Sitting down in my chair in a sedentary position makes things worse instead of better.
In addition to my pump, I also take another type of muscle relaxer, and CBD oil also helps a lot. I’ve seen a physical therapist in the past and learned exercises and stretches I can do to help my muscles stay as limber as possible, too.
Spasticity on My Terms
Dealing with spasticity has had an emotional impact, too. Because my type of cerebral palsy affects my whole body, it affects the way I talk and breathe. I have to make certain facial expressions to get my words out. In the past I’ve dealt with insecurity about the way that makes me look when I speak. But I am fortunate that I’ve been able to channel my insecurities into a larger mission for me and for other people who deal with spasticity in their own lives.
I work in the disability sector as the director of operations for an online disability community platform. In some of my previous work with people with spinal cord injuries, I noticed there were all these podcasts and resources for people with paralysis. And it occurred to me that I didn’t often see these kinds of tools for people with cerebral palsy. When I googled it, it came up as a childhood disability. But children with cerebral palsy grow up to be adults, and we need support, too, so I decided to create a resource specifically for adults with cerebral palsy.
A Community Who Gets It
I formed an online YouTube and podcast platform featuring stories from those in the cerebral palsy community. I named it Spastic Chatter as a way to reclaim the word “spastic.” I’m calling myself out before anyone else can do it. I want to make it into something positive.
I host weekly uncensored chats with individuals about what it’s really like to have this type of disability. I learn something new every day through these conversations. People challenge my perspective. Not everyone is going to have the same perspective as you do. So it's cool to see the diversity of people’s experiences while still relating deeply to the shared experience of our condition. We’re all affected differently, but we have a language that makes sense between us.
I’ve come a long way from being that 90-pound, quiet girl who needed assistance to get around. I’m a motivational speaker with a passion for disability advocacy. I’m 145 pounds of pure muscle, and I’m able to tell my story with confidence.
This might sound cheesy, but if you’re dealing with spasticity, it does get better. You just have to find the right way to manage it for you. It takes some work to get the right regimen down, whether that be exercise or medicine or other therapies. And some days are going to be worse than others. But keep going until you find your sweet spot.
Photo Credit: tommaso79 / Getty Images