Sunday, June 18, 2017

Cerebral Palsy Isn't Progressive...But It Kind Of Is.

Growing up with cerebral palsy (CP), I have always wanted to be as informed as possible about my own disability. Of course, from a young age, I learned the standard elevator speech (hehe, see what I did there?) about how my brain had bled before birth and abra kadabra…here I am. I’ve adapted this explanation many times for various audiences, from little kids in the store who ask if I’m sick to tactless doctors who ask “what happened” to me (For those wondering, so many things have happened. Most recently, I ate a blueberry waffle.) I’ve pretty much read every webpage about CP, and I’m forever enthusiastically reminding people that my overactive startle reflex is  a “CP thing,” not a nervous habit. Yet, as I’m entering young adulthood, I’m learning that no matter how many pages I read, there are so many, there are many things about living with CP that I can only discover by living, and so many moments in which I think to myself— “What am I doing?” This was not in the manual! See: Stuck in a Surehands lift on the ceiling, in my underwear, ran over retainer, got leg stuck in bedrail and other adventures. No book, no doctor, no pamphlet can truly prepare you for all that you will encounter when you become an adult with CP.

CP is generally presented as an early childhood disorder, and suddenly, here you are, an adult with a “childhood disorder”, who missed the memo that you were supposed to disappear at age 21. Most recreational opportunities you previously enjoyed for people with disabilities are no longer available, because you my friend, are Old. Many a time, not even the orthopedic will see you anymore, because you and your worn out hamstrings must go where Old people go, only to learn that no such place exists (See: disappear after age 21). Despite not so subtle messages from service systems to evaporate, and the clear decree from the rehab catalogs that I am no longer cute enough to be in a walker ad, here I sit, Old. It seems like a scary place, beyond 21, and sometimes, it is. But life goes on, and I hope that the things I learn along the way can guide others.

In particular, I want to address the myth that CP is not at all progressive. Every webpage, every doctor announces cheerily: “It isn’t progressive!” Well doc, I’m here to tell you, it kind of is. It is correct that CP is not a true degenerative condition, and I am not at all arguing that my experience is the same as that of a person with a rapidly degenerative, life-threatening disability. However, CP changes with age, and I wish someone had told me that when the adventure began. Age 3 with CP is not the same as 8 with CP, or 13, or 20. Years and years of compounded spasticity pulling on your bones catches up with you, and it’s important to acknowledge that. I always went to physical therapy. I go for Botox to control spasms. I rock leg braces with a butterfly pattern that I love. You might say, I did all The Things, and yet, a degree of “functional change” has happened anyway. Just like for any non-disabled person, exercise is important for me, and if I don’t move, my muscles will weaken. But I wish I had known as a kid that CP is changeable, despite the stretching, the physical therapy, and the pretty patterned braces. I’m not suggesting that these things are pointless. They have, in fact, been very helpful in my life. But even so, CP muscles sure know how to get funky, and I wish I had known how much I would have to relearn my own body over time.

My knees stopped bending past 90 degrees at age 12, for reasons unknown, and trying to bend them further is like hitting a brick wall. I can no longer ride an adapted bike and it’s difficult to sit anywhere besides a wheelchair for fear of bending my knees too much. Old pictures of me with my legs folded under me are amusing and confusing these days. I don’t mention the things I can no longer do in order to make adulthood with CP sound miserable. I have plenty of hobbies that don’t involve knee bending, and if anything, the loss of some movement, the aches and pains I didn’t expect, and the ever-slower pace of my walk have illustrated that those living in disabled bodies are remarkably adaptable. We find new ways to do things because we must. I just wish I had known that the changes would come, because for a time, I blamed myself for them.

As my steps slowed, as I fell more easily, as those mischievous knees stopped bending, I struggled with guilt. Some days I still do. A little voice in my head would wonder, Did I not do enough? Is it my fault that I cannot do all that I once did? Have I failed? Gradually, I’ve learned to quell that voice and recognize that yes, CP is progressive, and some of the changes are beyond my control. To all the folks with CP out there who walk a little slower than they once did, use a wheelchair more often than before, or need a few more hours of personal assistance than they had as a kid, you are not alone. In my book, the phrase “CP is not progressive” will always be paired with an asterisk, knowing that 20+ years of spasticity certainly has the power to make one a little achier than before.

And with that knowledge, I have also given myself permission to grieve the fact that I can no longer move as I once did. My days flying around on my walker are gone. Getting carried up steps to go into others’ houses is now reserved for very rare occasions. In many ways, I am looking typical aging of the muscles and bones in the face, except at 24 and not 64. Given that I have never walked independently and I am quite used to needing help, I do not feel afraid of physical decline the way many others do. Perhaps that explains my kinship with elderly people, who face loss of mobility and the vulnerability of allowing others to care for their bodies. I often feel an impulse to tell them that they will be all right, that a place beyond walking is still a good place. That needing help is hard, but also so astoundingly human. Yet, I cannot deny those moments of grief for the fact that this body has changed, that the unending current of spastic electricity pulsing through my body has taken away some movement I once had. I used to deny myself of those moments, because they ran so contrary to the truth that I accept my body in all its wobbly, crooked glory. But I’ve learned that the truth is complicated, and that acceptance of my being does not require me to overlook the reality loss and struggle. That I can be proud of my bulbous, swollen knees that have floated away from their sockets and simultaneously think, “Bend, damn it! Remember when this didn’t hurt?”

CP is progressive and to say otherwise doesn’t tell the whole tale. I wish I had known from the start. But I’ve always known for certain how incredible the disabled body is, far from broken in its stubborn persistence. It endures and adjusts as joints ache, toes curl, and muscles contract over time. As the way CP affects me evolves, I adapt. I find new ways to do things because I must. I ask the universe to give me grace for the changes. And I rejoice, knowing that wherever I want to go, this crotchety bag of bones will get me there.

                                                   Image: me as a little girl feeding a deer at a zoo in a blue manual chair.

                                            Image: Me, circa age 5 or 6, standing beside my sister in a metal walker with red handles.

                                           Image: Me last year standing in a blue walker with black arm platforms and black handles.

 Image: Me, August 2016, seated in my most recent purple power wheelchair.


  1. Thank you for posting this, I can really relate! I too write a blog called life as a cerebral Palsy student if you would like to have a look :)

  2. If you haven't heard of it the documentary "Enter The Faun" addresses this issue of symptom progression and startle reflex in CP. (video expires June 25 but movie website is here ) One of the girls with CP featured in "Enter The Faun" makes her own films here

  3. Brilliant articulation - more people need to understand that 'non-progressive' does not mean 'non-changing'. Thanks for sharing - I've reposted on my Facebook page

  4. Thank you for your beautiful writing and bravery to admit these feelings. I struggle with these exact emotions, and it is a comfort to read your blog.

  5. There may not be much scientific explanation and warning to what’s happening to you now as you age, although I’m sure younger people who have CP will be able to benefit from your experience and how you’ve coped with it. I know you are a strong person with good fighting spirit in you.
    Thank you for such an honest post!

  6. My husband has mild CP. I didn't know about this right off, and really, until I knew, I couldn't tell. He does walk differently than other people. His legs don't really straighten and his arms stay very slightly bent at the elbows. I met him when he was about 26 and he was very active and athletic. I guess we were both in our prime at that point in our lives. Anyway,now he is 54. He sometimes wakes me up with his right leg jerking in his sleep repeatedly. He is getting more aches and pains as he is less active in sports because he works most of the time and is tired when he isn't working. Doesn't really matter. I love him just the way he is. And you mention your startle response, I had to smile as one thing I find humorous about my husband is his startle response during scary or suspenseful movies. He can not hide his startle if his life depended on it! My husband started in a wheelchair,but I hope he doesn't have to end in one later for his sake. He does like his sports and loves to be active, even if he is a bit stiffer, falls a lot, and sometimes slower than me. He is my soul mate! I really like your blog, and love how honestly you share yourself with others here. That is how we learn about others, how our ability to empathize with a larger group of people develops. Advocating and sharing your experiences with others is a great thing. Keep it up!