Wednesday, April 11, 2012

The Question of a Cure

A few weeks ago my sister was in town, and needed me to meet her at a church close to where I live to do her a quick favor. I met her after the service and we were all taken to a small office. Once all the official business was over the priest started chatting with my nieces and nephews, asking them about school and how old they were and all the things you usually talk about with children that you have just met. We were about to leave so I stood up and the priest looked first at my face then at my legs and then back up at my face again.

I knew something was coming. I was expecting maybe a “God Bless You,” because that’s what I normally get when someone looks at me like that, especially in or near a church. Instead he said, 
     “So, what do you have going on there?” I was shocked. Really? What do you got going one there? From an adult? In front of my nieces and nephews? I was there for my sister, and didn’t want to make a scene in front of the kids. So I bit my tongue and told him very politely that I had Cerebral Palsy.

     “Oh,” he said. As if he is somehow relieved. “Well, you know about those stem cells right? I mean can’t you do that? They take them right from your body! “

Every fiber in my body wanted to shout, “Oh my goodness I didn’t know, let’s get in the car and find a doctor right away! My suffering is over” But again, I am trying to be diplomatic, so I said,
     “The research is still being worked out on that, but I might give it a try when the time comes.” 

The priest smiled at me and touched my shoulder. He wished me the best and reminded me that when the time comes to use my own cells not the embryonic cells. Mom was holding open the open the door to the office at this point so I just smiled and nodded and we all wish each other a good day. Once through the door my sister leaned over and said,

     “For a second I thought he was going to perform an exorcism.” We all laughed and got in the car to head to my Mom’s for lunch.

This post, despite its beginning is not going to be about church, or religion. I am not going to go into the stem cell debate. The conversation did get me thinking though, because it was only a few years ago that I had stated publicly and adamantly that I would not take a cure for CP even if it was offered to me by John Travolta in a gold plated syringe. After all CP has not been a burden to me, without it I may not have the great friends I have, I might not have met Tom and I certainly would have never written this blog. I have always felt that I was meant to have CP. That it was not and accident of fate, but something I was given purposely.  And yet, I had just told this man, whom I had never met that it would be something I might consider.

Maybe I was humbling him; maybe I was just being polite. But as I left the church I was shaken a little by the idea that maybe it was the truth maybe I would take a cure. After 30 years of CP I can tell you that some days I am just tired. Tired of being in pain, tired of explaining myself to people who ask questions they really have no right to ask, tired of being stared at, tired of falling, tired of not being able to really play with my nieces and nephews, tired of trying to keep up, just tired. Some days I do want a cure. Maybe that makes me weak, but I don’t think so.

If wanting a cure makes me weak then not wanting a cure would makes me strong. I am not strong. I am just me living my life. My life with CP, not in spite of it. My life that allows me to help other people with CP see that anything they want is possible, to find the humor in even the most painful or embarrassing situations, to always look for a creative solution instead of giving up, to educate people, to put an end to the pity, and to write and share my story with anyone who wants to hear it.

So yes, some days I do want a cure, but if it never comes I will be okay. We will all be okay because I believe that we all are exactly who we were meant to be and a cure won’t change that.

The only thing I am ashamed about is not telling that priest to mind his own business; politely, of course.


  1. I have come to the conclusion over the past year that I would definitely take a cure. Of course, a thousand other people would have to take it, and live. The lack of CP would not be worth my life. The way I see the though, I've gained all I could from my disability. I can advocate for people empathically, I have learned that all sorts of people can be helpful and harmful. I know what it's like to be the only "different" person in a room and because of that I'm good at making people feel comfortable. Twenty-three years of falling,and weird looks and guy issues are enough for me. I am grateful for it, but I don't need it anymore.

  2. Yes, Cathleen. I think I feel the same way... more often than not. . You never know though, your CP might have one more (positive) trick up it's sleeve. :) I Love You, and without CP I would have never known that. Crazy!

  3. I feel indignant when people start talking about "cures" because I feel they're basically saying there's something wrong and horrible about you! Fix it, you freak! and they have no right to say that. I push against them assuming the right to pass judgement.

    Kind of like how before the wedding (I don't know if you got this too) I would occasionally think "hmmm, jeans a little tighter than I'd like, better cut back on the biscuits," but as soon as someone suggested that I'd be wanting to lose weight for the wedding I got all "screw you, I'm having the biggest chocolatiest dessert I can lay hands on RIGHT NOW."

    (But as you've demonstrated, we smile and say the words that will extract us from the situation with the minimum of agitation, because poking tigers is stupid.)

    I think any of us who experience symptoms such as pain and fatigue would, on occasion, be willing to kick a puppy in the face to have a day off from those symptoms. But that's not the same thing as a cure, really.

    Cos there aren't any cures that involve taking a couple of tablets, or having a teeny-little local-anaesthetic operation, and then within a week or two, being an entirely fit and healthy adult, guaranteed.

    There are drugs that relieve *some* of the symptoms we experience, and swap them out for a whole new set of side-effects instead. I remember I had a fabulous painkiller once, my head was clear as a bell, and that would have been awesome if I could have kept food inside my body or moved more than two metres from the toilet.

    Or there are long-term treatments which impact your life even more than your condition usually would for years on end for only a tiny "improvement" - I'm thinking of all those kids with the painful "corrective" leg braces, still can't walk but oh look, this bone is one degree straighter, hallelujah.

    My personal fear is a treatment that makes me, ooh, about 20% more functional. That would land me neatly into the bracket where I could not manage "normal" adult life by a long chalk, but would no longer be entitled to access any forms of disability support. If that happened to me, I'd cope somehow, but I'm not going to be kicking a puppy/going into debt/taking stupid risks/etc to try and make it happen.

    1. Mary, you make some excellent points. Something I thought about later that day, but didn't chose to write about was the fact that because I've lived thirty years with CP any "cure" they gave me would be more of an improvement than anything.

      I have already lost my benefits due to being married so I wouldn't have to worry much about that.

      You're right about the word cure though. It is a nasty little thing.

    2. Oh, I don't mean financial benefits. I mean things like the blue badge parking privileges, the wheelchair, the entitlement to use Shopmobility schemes... at 20% better that would all disappear into the long grass, but I still wouldn't be able to walk to the nearest bus stop, or stand up for a continuous period of time while waiting for the bus, or walk all the way around a shop paying attention to what was on the shelves.

  4. Very well-written and well-said. I have RA and have had it since birth. I don't have any memory, truly of running and playing, although I am told i did and the disease didn't start truly affecting me until I was a little over 2 years old.

    I feel the same way: I am who I am meant to be. Some days I would love to be able to move perfectly and do the things I see other people doing, like grocery shopping without assistance, or being able to stand up on the bus to let someone sit down, etc. At the same time, I am fine with who I am. I don't know any other life. I am "me" because of the RA and I am living my life inspite of the RA and pain.

    Again, this is an excellent article.

  5. I think there is a big difference in doing something that could increase your quality of life, be it a dietary change, exercise, working on mental health issues or physical challenges and saying you want to change who you are. I wouldn't give back anything that has shaped me, good or bad, but I am trying to be able to be healthier, stronger and more self actualized.
    If I could take a pill and have better hearing, I'm not sure I would, because what I do now works for me. If I could change my sleep disorders, I would, without hesitation. It's all about what works better for you. And there's no shame in that. You're not saying there is something wrong with you, just that doing something would work better for you.
    I hate hearing about cures for disabilities. I know a bunch of people that I have absolutely no desire to cure... but if there is something I can do to make them happier, I certainly would. And there is nothing wrong with that!

  6. this is an excellent topic to share your thoughts on, both with those with disabilities to "cure" and normies who can't blame their weirdness on a disease. Perhaps I'll write about this, too. You definitely got me thinking! And while I agree with many of your points (especially Mary's), I do have a somewhat different view, having a "fatal" disease. Thanks for this post!

    1. Robin, I would love to read your perspective on this topic.

  7. Ok I have got to put my two cents in. On the days I call my Eeyore Days(where I think nobody cares about me.)I would take a cure in a heartbeat. But in my realistic days (which are most, Thank God) I wouldn't take a cure if you paid me. Just because like a lot of people have already written here, I think I am just the way my heavenly father made me. Being preacher, my disability (CP) has kinda been some what of a weird benefit for my ministry! In that it has helped many people to realize that maybe life isn't so bad. I have had people tell me that they have thought about just ending it all and after seeing me and what I have accomplished they have a renewed since of will. This has very little to do with me and everything to do with the power of my Lord. I have a blog on blogger that can be found here I am going to write my perspective on this. Thanks for stoking the coals!

  8. I just started reading your blog, Disability & I Do caught my eye. I'm a woman with CP, getting married next June, rolling down the aisle!

    I am proudly disabled. Like you, I wouldn't be who I am without my CP. I own my wheels. There are plenty of things I'd like to change in this world, CP is not one of them.

    Self acceptance doesn't make me a strong person. I just a person who enjoys life. And I'm happy to meet you!


  9. I'm so sorry that I'm so late finding this post. I have to say honestly a "cure" never crossed my mind until, in my late twenties, someone mentioned it in reference to my husband's cousin who also has CP. Strange, it hadn't occurred to me even once.
    I guess I have a healthy level of acceptance because I still can't imagine it. That being said I'd also kick a puppy for a day off now and then especially since the kids.