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.

How It Feels When Kindness Has A Price Tag

As a person with a severe physical disability, I need a lot of help just to survive. My entire life is one of interdependence. There are shoes to be tied, showers to be given, clothes to be put on and taken off. By necessity, I must embrace togetherness even in intimate moments, a task that requires tremendous peace with my body and tremendous awareness that as human beings, we need each other. It can be beautiful, when another person learns the slow, crooked rhythm of my body and falls in sync with the pieces of the world as I see it. The way I like my hair brushed, the way my hands settle into a fist when I’m thinking deeply. The way I laugh with my whole being. The way excitement cannot hide itself because it courses through my muscles like an electric current. Done right, this interdependent caregiving relationship is a demonstration of everything for which a community should strive. But when the responsibility is neglected, I am reminded how frustrating it can be to rely on someone else just to go to the bathroom.

I am fortunate to have access to paid caregivers through state-sponsored services. Yet the reality of my life is such that my needs extend far beyond the 8-10 hours the powers that be call “medically necessary”. The happenings of a life cannot be neatly contained in a bureaucratically- bestowed time window.  After those hours are up, the beat goes on. I cannot possibly pay for every iota of help I require. Think of every cup of juice you pour, every errand you run, every time you plug in your phone, and envision how much it would cost if someone asked you to pay every time you had a basic human need. With the lifetime cost of cerebral palsy already estimated to be about 1 million dollars[i], things add up quickly. This is not to make you pity me; I simply want to quantify how expensive just getting by can be. When the expectation is constant money, by the time you pay someone to bathe you, dress you, and toilet you, there’s no pocket change left to set up your new TV, and you better hope someone cares enough to do you a favor. This is not to argue either that paid caregiving has no place. Compensation for care is very important. I merely want to demonstrate that sometimes, we disabled people need someone to “do us a solid.”

Herein lies the problem with the term “special needs.” It is just a way to neatly package the needs of the disabled as someone else’s problem— “special,” and therefore, outside the realm of what human beings ought to do for each other as neighbors in a world where everyone will need help at some point. Non-disabled people do “good deeds” for each other regularly because that’s what friends (and good people) are for. Sometimes, good deeds take the form of rides, dinners made, or a couple of hours watching the kids. Yet I have observed that payment or “credit” for helping disabled people has become so engrained in our culture that we are frequently excluded from the receipt of unpaid kindness. In other words, good deeds for us often have price tags. Too many people feel that they deserve money, volunteer hours, or media attention just for being with us. I want to be a friend, not a service project.

The sort of help I need may not be typical. It may be something your six –year- old can do on his own. It may be a task that when you consider what it would be like to need help with such a thing, you squirm. But no, my needs are not special. They are so profoundly human that most people take care of these needs without even thinking.

I want to reiterate that I am not implying that all caregiving should be free. I am suggesting, as a human being, that people without disabilities need to help us out sometimes for the sake of goodness, just as they do for each other. That is true even when the task with which I need assistance is not quite the same as baking brownies for the neighbor’s dinner party. Worrying that someone will perceive you as “taking advantage” every time you ask for help is heartbreaking. So is worrying that people will decide it’s too much work to be your friend. The heartbreak is infinitely multiplied when you know that if you had the physical ability, you’d help another person lie down on a bed or take a bite of food without thinking for a minute about money. Paid caregiving is important, but we cannot let it cloud our ability to see the value of basic kindness.

In his work The Dismal Science: How Thinking Like An Economist Undermines Community, Marglin writes, “In the twentieth century, what neighbors once did for the incapacitated has become the job of practical nurses, and is no longer an activity that binds the community together—except where poverty puts professional nursing out of economic range.”[ii] While I reject the characterization of disabled people as “incapacitated,” and I count nurses among the most noble and necessary professionals, I often long for that bygone sense of neighborly commitment as a matter of doing good. And I hope the world will remember that we disabled folks, too, need others to look upon each of us and say, “he ain’t heavy; he’s my brother.”

I think of Martin Luther King Jr.’s vision for the “beloved community,” in which he challenges us to build a society founded on agape love. Dr. King described agape love as “understanding, redeeming goodwill for all,” an “overflowing love which is purely spontaneous, unmotivated, groundless and creative.” Agape love, he added, “does not begin by discriminating between worthy and unworthy people…it begins by loving others for their sakes.”[iii] I believe that the beloved community can exist, and I catch glimpses of it in the hearts of the most special people I know. But until its value is recognized by all, I must battle with the little ableist voice in my head that tells me, “because of your disability, being kind to you is always a paying job.” A goal of mine is to let others say, “You are my friend, I’ve got your back, and you don’t owe me anything.” But more than that, my goal is to trust that its true.

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[i] Centers for Disease Control (2003). Data and statistics. Retrieved from http://www.cdc.gov/ncbddd/cp/data.html

[ii] Marglin, S. A. (2008). The dismal science: How thinking like an economist undermines community, p. 23.  Boston, MA: Harvard University Press.

[iii] The King Center (2016). The King philosophy. Retrieved from http://www.thekingcenter.org/king-philosophy