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

Ten Things I Want You To Know For CP Awareness Month

So, it’s March, Cerebral Palsy Awareness Month. I trust you are all aware of me, and if you are not, you will be the next time I scratch your door frame. In this most celebratory month, I am enjoying the delicious irony in the fact that palsy month takes place during the only month synonymous with “walking in a stately, deliberate manner.” There are so many ways to celebrate, I’m considering marketing an all- in- one Palsy Party starter pack: a pin the wheel on the wheelchair game, a variety of classic easy-open microwave meals, an emergency response guide for when that one friend thinks it would be fun to play Twister and falls—the possibilities are endless. While I don’t want to suck the joy out of party-planning, here are ten more serious things I want you to know about cerebral palsy (CP)…

1.     I was born this way. Whoa, hold up. Not exactly this way. I assure you I did not have a 450- pound purple power chair while in the womb. That probably would have taken up too much space. However, I developed CP before I was born, and I have always had CP. The exact cause is not known, but I can surmise that my brain bled at some point. While I don’t really care what the exact reason is, it’s pretty amusing to envision little in-utero me turning to my twin one morning and saying, “Last night got pretty wild. My brain hurts just thinking about it. I think I’ve come down with a slight case of CP.”

2.     The messages between my brain and my muscles are… creative. I won’t bore you with a complex medical explanation of what CP actually is, but hopefully this nutshell will help. In a person without CP, the brain and nerves work together to regulate muscle strength and flexibility, also called tone. The right balance of tone creates the message necessary to move smoothly. Think of a text that says “MOVE LEG.” The messages between my brain and muscles are more garbled, as though the two are late night texting after a chaotic happy hour.

S    See sample message below:

Image: An Iphone text message thread between the brain and muscles. Muscles receive a blue I message with a bunch of garbled letters. Muscle replies in a gray bubble "LOL. Wut?" At the top of the screen, the carrier is "AT & CP."

3.     Cerebral palsy DOES define me, just not entirely. Many a cheesy meme will tell you that a winning person with CP will roll her institutional looking manual wheelchair (with no posture supports) to the top of a mountain, put her arms in the air (boasting full range of motion), and “not let CP define her!” Well, guess what?  My disability is part of who I am, so it does define me. It is not my entire definition, but I wouldn’t be me without it. Without my CP, a lot would stay the same, but so much would be missing. Take my skill for digging sprinkles out of a wheelchair seat for example. A hard-earned CP associated talent they don’t teach at the career center!

4.     CP is not progressive, but it is changeable. Pretty much every medical page on the web will tell you that CP is not progressive. In the strict sense, it’s not. It does not follow a defined degenerative course and I am able to build muscle. But nonetheless, the way CP affects me can change. The cumulative effects of too-tight muscles on bones result in me not being able to do many of the things I used to be able to. Gone are the days of walking with someone holding me and knees that bend past ninety degrees. It is easy to feel a little guilty about functional loss and I used to struggle a lot with feeling that maybe I could of would have should have used my walker more, sat up straighter, done more physical therapy…. But I’ve learned that no matter what, some natural changes in function are inevitable when your muscles have been faithfully yanking on your bones with overzealous energy for 24 years. It’s sometimes a bummer to stop doing things that were once easy, but for everything I’ve stopped doing with the passing of time, I’ve done something new I never thought I would. I may no longer use my walker apart from brief exercise sessions, but increased time in a chair has enabled me to independently navigate a campus without fear of falling.

(Ed Sheeran voice): When your legs are more spastic than they were before... and you’re barely bending your knees, remember darling, it’s not your fault, that’s getting older with CP.

5.     Having CP is hard sometimes, but it’s not for the reasons most people think. While my disability has very real physical and medical consequences, and having crotchety joints is not always fun, I don’t feel that there is anything “wrong” with the design of my body. I spend a lot more time wishing the environment was more inclusive of those of us who break the mold than wishing I could walk on my own or play football. If society focused on building more structures that could accommodate wheelchairs, and made it easier for disabled folks to get housing, jobs, and education, being disabled would be markedly less challenging. This is not to say either that I am opposed to all medical interventions, but at this stage of my life I am mainly interested in those that control pain. I’ll pass on learning how to skip.

6.     “Are you disabled in your dreams?” Quite vividly so. This seems to be a popular question, and I think many people expect that my dreamscape is full of images of me playing extreme sports and taking jaunty carefree steps. My dreamscape is something more of a disability-informed “choose your own adventure book.” Common plotlines include losing my Medicaid card, falling out of my chair, and having a home health agency award you more service hours from a new program while “Dream Me” explains that I can’t double dip and use two home care programs. In the one dream in which I did climb a tree, a friend asked me “what the hell I was thinking.” Good thing my friends look after me.

7.     I don’t startle all the time because I’m nervous. It’s a CP thing. If you know anything about my personality, I probably AM nervous, but that’s not why I startle so often. Many people with CP keep their moro/startle reflex, which makes us extra sensitive to sudden noises, motions, and even smells. You can read more here.

8.     You can call me disabled. It’s not a dirty word. While different people will always have various opinions on proper disability terminology, I do not have any issues with the word “disabled.” To me, it is an adjective that is part of my identity, and it belongs after “I Am…” just like “American” or “female.” While I won’t be upset if you call me a “person with a disability,” I will be upset if you say that’s the “right term.” My personhood should already be assumed, and I shouldn’t have to reemphasize that I am a person.

9.     Asking questions about my disability has a time and place. Most of the time, I enjoy answering questions about my disability if I perceive that doing so will make some small impact in the effort against ableism, given that questions are asked politely. However, this does not mean that I am eager or obligated to answer every inquiry when I’m out shopping, hanging out with my friends, or heading to class. Disabled people are not mobile educational tools, and sometimes, I need a day off from “raising awareness,” to be a Joe schmo human being.

10.    Growing up with CP, being around others with disabilities has been valuable and empowering. I have been fortunate to grow up within a rich community of others with disabilities. Seeing and learning from people who share my experiences from an early age has allowed me to be proud of who I am and to swap resources with folks who have “been there.” If I didn’t have CP, I most likely would never have met some of the best people I know.

Happy Cerebral Palsy Awareness Month to all!