Fighting Apathy: Life Worth Living

Do you ever wish you could rewind time? Unsay something; undo something? As the popular saying goes, it’s not so much the things I’ve done, but the things I haven’t done, that I regret.

Like most kids probably, when I turned 18, I was going to conquer the world.I got married, had a baby, and everyone said I couldn’t conquer the world now. I was going to prove them wrong.

But I woke up a couple years ago and realized I hadn’t proved anybody wrong. I had tried, but it seemed like every time I thought I was making the right decision, I was making the wrong one.

I got too tied up in a paycheck, and forgot about the journey. Forgot about the music and the fun. Forgot to do the things that make life worth living.

I had been able to make my own decisions for almost 9 years, and what did I have to show for it? Just stuff. A couple cars, some furniture, a good credit score. But who did I help? Where was my impact? Where was the music?

So, I decided to start making an impact. To make up for lost time. I would practice music again, volunteer at church and shelters, spend more time with friends and family. But as much as I tried, between work and other responsibilities, by the time I got a chance to do anything, I was too fatigued and in too much pain. Day in and day out, I went to work, came home, and went to bed.

When I quit my job, I had every intention of changing my path. I would play music again, volunteer for things I could do, make a difference.

But recently I realized, I wasn’t really doing any of that.

I wasn’t playing the keyboard, because I was too afraid of getting off the couch. Really. I was afraid that if I got off the couch, the pain would start. Music is my passion, but I was letting the fear of pain make me too apathetic to go after it.

My church has always needed help in the childcare department. I didn’t want to help, because I was afraid of pain. Afraid of committing and then being in pain getting ready early in the morning, and being in pain doing activities with the kids. Afraid I’d get put in the nursery, or with toddlers that I would have to carry and chase. Afraid it would end up like work, where I would have to be calling in all the time. I didn’t do much of anything because of the pain. No, it was sillier than that. I didn’t do anything because of the fear of pain.

I wasn’t really helping anyone or doing anything because I was afraid of the pain that it might cause. I was letting apathy get the best of me. What kind of a life is that?

I started to get angry. Angry that I was just sitting around all the time so I wouldn’t be in pain. Angry that I was letting fear keep me on the couch. The thing is, that’s a ridiculous plan, because I was in pain anyway.

So why shouldn’t I walk across the room and sit in the chair in front of the keyboard? Maybe it’ll hurt more. Well, it probably won’t. And then at least I’ll be doing something. And if it does, chances are it will be short lived. And then at least I’ll have done something.

And then I had this epiphany about helping out at church: I could ask to only be scheduled with school-aged children, so I wouldn’t have to carry or chase anyone. Sitting in my wheelchair talking to kids and teaching them would not be any different physically than sitting in my wheelchair listening to a sermon. And I could ask to only be scheduled at second service, so I wouldn’t have to be up and around too early. Wow. I’m a genius.

So, I’ve been playing music and teaching kids at church, and life has been a lot less boring.

In my efforts to reach out and live life, something really cool happened this weekend.

A few months ago, my brother-in-law, Ian, was diagnosed with cancer. Interestingly, it’s the same form of cancer that my uncle has. On Thursday, we stopped at their house to drop off a couple things, and we noticed they really needed yard work done. I felt kind of bad for not thinking about it before. Of course they need yard work done! He’s going through chemo, and my sister has a job and a 10 month old baby to take care of!

Right that minute I texted one of my community group leaders from church. She got a hold of the rest of my small group, and the next day we were all at my sister’s with shovels, rakes and gardening gloves. I was touched that they were willing to take a Friday night and spend hours doing yard work to help my family. As far as I was concerned, I figured I’d be spending the evening sitting on my sister’s couch while they did all the work. But when we got there, I decided to grab a shovel and see how far I got.

I was pleasantly surprised that I was able to help, and even make a dent in the work. And instead of hurting, it actually felt good to use those muscles I forgot I had. Eventually my back gave in, and I had to stop. I was fully expecting to be in a lot of pain the next day, but I wasn’t. In fact, I woke up with less pain than I have in a long time. Good Karma? Or maybe there’s something to using those muscles…

My nephew Kolby is a little light-skinned version of my son :)

My nephew Kolby is a little light-skinned version of my son 🙂

I’m so glad I decided to put the apathy away. To take the risk of being in a little more pain once in a while in order to live life; to make a difference. I can’t wait for the next opportunity.

Update: Playing my keyboard has been great. The chair we had used to hurt my back after a few minutes. By chance, we got another chair at a yard sale (the one we had had wheels; bad for a walking baby), and that chair doesn’t hurt my back. So I can play until the kids wake up without having any pain.

Childcare is going well. Usually I have someone in there to help me help the kids with their crafts. It’s a little difficult when I don’t, getting around to all the kids to help them. But there was only one day that I really had a hard time and ended up in extra pain. The rest have gone well.

My community group was able to pull all the weeds and scattered saplings out of my sister’s front yard. We will be back on Friday to do the back yard. We learned that they do have a sprinkler system installed, so they’ll be able to water it easily. Also, one of the guys in my community group works for a landscaping company. He was able to get a great deal on setting grass seed for her yard in the fall, and a year of lawn care, where all she would have to do is mow, and set it up so that there is no cost to my sister. Now that’s what church, and family, should be like.

Live with purpose.

Please don't stop the music

❤ Please don’t stop the music ❤

Fili-busted.

Generally speaking, I do not follow politics. Besides a few issues that are important to our family, I just don’t keep up on them. I’m busy keeping up with Dora the Explorer, how I’m going to handle a baby from a wheelchair, and the drama of second grade. If I need to know something, I call my politically savvy cousin, Shekinah. I don’t know who my state governor or Senators are (Shekinah is probably having a heart attack now), and I usually don’t know what we’re voting on until I get the ballot in the mail. I vote, and I have a good understanding of our political system due to paying attention in class, but that’s as far as it goes.

But something came to my attention the other day. As most of us have heard, Wendy Davis of Texas, recently turned to filibustering as a way of stopping a law from passing.  Now, to be honest, when I first heard about Ms. Davis, I did not know what filibustering was. So I researched it and read about it. Even then, I wasn’t sure I had it right. From what I understood, filibustering is when you take the floor and just talk. For hours on end, without stopping, as a way to stall the political process, to stop a law from passing that you do not agree with. That couldn’t be right. Permitted, recognized stalling? In the government? That’s something akin to a 6 year old distracting his parents so his friend can sneak a frog in the back door. So I called Shekinah, and I had understood correctly. Filibustering is a grown up term for stalling.

*For the record, Shekinah believes that filibusters can be a useful tool when used correctly and when necessary, and I agree with her.

The issue at hand was abortion. For the record I do not agree with abortion, and therefore do not agree with Wendy Davis, but if we look past our disagreement, there is another issue at hand.

Ms. Davis’ filibuster was objected when another senator helped her with a back brace.

Filibustering has strict rules. The rules vary for each of the 13 states that allow filibusters, but they are similar. In the state of Texas, the rules are that the senator has to stay on topic, and is not allowed to eat, drink, use the restroom, or sit or lean on a desk or chair.

“During a filibuster, a senator is limited to topics relevant to the bill being discussed and cannot eat, drink or use the restroom during the speech. The rules also prohibit sitting or leaning on a desk or chair under any circumstances when the senator has the floor and is speaking on the bill or resolution.”

Read more at the Hays Free Press http://haysfreepress.com/2013/06/26/what-are-the-rules-of-a-filibuster/#ixzz2XWbecpJ6

There are multiple things that I find wrong with these rules. And it’s not just a matter of my personal opinion; I believe they are unconstitutional. Specifically the phrase “under any circumstances”.  To start with, they don’t comply with the ADA, Americans with Disabilities Act, which states:

“The Americans with Disabilities Act of 1990 (ADA) prohibits discrimination and ensures equal opportunity for persons with disabilities in employment, State and local government services, public accommodations, commercial facilities, and transportation. It also mandates the establishment of TDD/telephone relay services.”

http://www.ada.gov/2010_regs.htm

From reading these rules of filibustering, you cannot do it from a wheelchair. If you are not able to stand for hours on end, your attempt will be unsuccessful. As of now, I don’t know of any disabled senators, but that doesn’t mean there will never be one. And we can’t wait until there is one to change this rule. If a disabled senator wanted to exercise their right to filibuster, they would have to wait for the rules to be changed. That would most likely make it too late for the Senator to filibuster the issue at hand.

I believe those are reasonable guidelines for a perfectly able bodied person. But let’s set disability aside. What about a senator with a back problem? Or a knee problem? I’m sure there are a few senators with those. It is unfair and unconstitutional that they would not have the same opportunity. Add on someone with diabetes or hypoglycemia, who can’t go many hours without eating, and I bet we’ve covered 30 percent of the senate. Not to mention the possibility of someone who has bladder or bowel problems, that isn’t able to wait to use the restroom.

I’m not saying that those rules should be done away with completely. I can see why they are a necessary element of the filibuster. What I am saying is that they should be reasonably flexible. Just as any employer would be required to make reasonable accommodations in order for me to work, the senate should be required to make reasonable accommodations to allow a senator with a medical problem to filibuster. “Under any circumstances” should not be a part of those rules.

These rules should be changed to support equality. No person’s lack of physical ability should keep them from taking part in the political process. From being allowed to fight for their beliefs. In a country where we boast about our freedom and equality, “under any circumstances” should not be a phrase found in our government policies referring to physical ability.

These are the thirteen states that currently allow filibusters:

  • Alabama
  • Alaska
  • Arkansas
  • Connecticut
  • Florida
  • Hawaii
  • Idaho
  • Maine
  • Nebraska
  • South Carolina
  • Texas
  • Utah
  • Vermont

If you were a senator in one of these states, would you be physically able to filibuster under those rules?

As Shekinah would say: Quick! Call your senators!

Filibustering is a common practice at our house, too.

Filibustering is a common practice at our house, too.

“You know what you do?…You don’t feel bad about it.”

I met someone yesterday that I think may have changed my life with something she said, and she probably doesn’t even know it.

Yesterday my community group (like a bible study group) hosted a barbeque in the park. I almost didn’t go, but since we were doing it to reach out to the community and as an act of kindness, I decided to go. After we arrived, a family arrived that I hadn’t met before. They had seven(!) kids, and one of them was using a wheelchair.

I told her that I liked her chair, and that it looked a lot like mine. I wasn’t using my chair, even though I really needed to, because I haven’t figured out the art of baby chasing from a wheelchair (another post for another time).

The way she sat and her shorter stature made me wonder if she had Spina Bifida, so I asked her mom when she was off playing with the other kids. She does have Spina Bifida, which as I’ve mentioned, one of my best friends, Kate, has, so we got to talking.

One of her friends adopted a child that has CP, so she was asking some questions about it, because her friend is looking for information. It came up that one of the biggest challenges I face is cooking.

I can’t stand in the kitchen long enough to make a meal. I’ve tried bringing my wheelchair in to do it, but the counters and stove are right at eye-level from my chair. Also, it’s hard to get around in the tight quarters in a wheelchair. I’ve tried using a barstool, but that doesn’t work, because you have to move all around the kitchen to cook. What doesn’t help is that I don’t particularly like cooking, so it’s already not enjoyable.

I tend to force myself to try to cook to save money. Eating out is expensive, and my husband, who is a cook, doesn’t wasn’t to come home from work and cook some more. The money thing has never really bothered him, so he doesn’t mind eating out. But our family doesn’t have a lot of extra money, so I feel that I need to save wherever I can.

Also, he is from Mexico, where they don’t eat cereal or a sandwich as a meal, so while my daughter and I are fine with eating just that, he is not. And since in Mexico the women tend to spend a lot of their time cooking awesome food, I somehow feel like I’m not as good of a wife for not doing it.

I know this is ridiculous, especially since he has in no way ever made me feel that way, but like I’ve said, sometimes I’m pretty hard on myself.

Recently, I had an opportunity to save money and have some easy, home-made frozen meals on hand, but it meant I would have to cook 2 meals, and make enough food for about 40 people each meal.

I was reluctant to participate. I can barely cook dinner for my own family; why would I want to try doing it for 40 people? Twice? One of the girls offered to help me, but me cooking usually ends in tears, so I declined her help. Plus, I didn’t see much point in me sitting and directing her on what to do.

I liked the idea of saving money and having meals ready to heat. Being a health nut, I’d rather have home-cooked meals available than fast food anyway. My husband offered to help, so I decided to give it a shot. He did the shopping and came home, but within 10 minutes of cooking I was in tears. When I thought of how much I still needed to do, that brought on more tears. He was sweet and brought me some medicine and my wheelchair, and a coke and chocolate (that always calms me down). Somehow we finished it all, but I was in a lot of pain, and I will NOT be doing that again. Well, never say never; perhaps the trick is to not do it all in one day. It was a busy week, so it just worked out that way.

We were supposed to meet to deliver the meals and play some games that night. After cooking, I took a shower (another painful task) and got into my sweats. I really wasn’t feeling well, and I didn’t want to go. I changed my mind at the last minute, so we all went. I still was in a lot of pain, so we left early. While we were leaving, someone said “Thanks for toughing it out, I know it’s frustrating.”

That comment kind of got to me. ‘Frustrating’ is not the right word. I felt that ‘frustrating’ would imply that I simply did not want to do it because it is complicated. ‘Frustrating’ sounds like I simply chose not to be lazy. In cases like this, I wish pain was visible. I wish they could see it and know. Because I chose to dry my tears and have a smile on my face when we arrived.

I am in pain all the time. Sometimes severe, sometimes not, but all the time. But I generally keep it to myself. I don’t go around with a frown on my face, or complain about it all the time. That’s just my choice. The truth is that I have a lot to smile and be happy about, and I think those things are more important. But sometimes I think my smile makes my pain seem less real to those around me. Some tend to think I’m making excuses or being lazy, or that when my family helps me with something, they are babying me.

I have always done as much as I can for myself. I have always pushed myself to be as independent as I can be. But I do have limits, and I know what they are. I can’t do as much physically as other people. So what is frustrating is when other people question those limits. When they assume I am simply not trying.

Don’t get me wrong, I don’t mind when people ask if I can do something. I would much rather they ask than assume that I cannot. What bothers me is when I tell them I can’t, but they want me to do it anyway. When they imply that if I would just put in some effort, I could do it. Kate had a similar incident on the same weekend, and I doubt we are alone in this.

Okay, enough with my rant and tangent. The person didn’t mean it that way, cooking is just a sensitive subject for me.

So, back to the park. I was telling my new friend about how cooking is a difficulty for me, and she was totally understanding why; a reaction that I usually don’t get. You know what she said? She said “You know what you do? You eat out, and don’t feel bad about it.”

Wow. So simple, so silly, but in my world, so profound. I’ve never had anyone really understand before. Nobody ever just give me permission to spend the extra money on something that’s considered a luxury because, well, that’s what I need to do.

So from now on, I’m going to do what I need to do. I’m going to eat out when I the pain is too much to stand, and I’m not going to feel bad about it. I’m going to listen to my body, and not force it to stand. I’m going to use my chair when I need to, baby and all. The more I force myself now, the less I’ll be able to use my legs later. So I’m going to take care of myself, and not let other people be my guide. I’m going to do my best, and let God do the rest.

So thank you new friend, for giving me permission. Something that I didn’t know I needed, but it has kind of set me free.

Sometimes when daddy's at work, we have cereal for dinner. But we like it that way.

Sometimes when daddy’s at work, we have cereal for dinner. But we like it that way.

dis(abled)

Sometimes my disability frustrates me. Sometimes I am not as optimistic as I claim to be. Sometimes I wish it would disappear.

I don’t always feel this way. I don’t usually wish I didn’t have CP or count myself unlucky because of it. A lot of time I don’t give it much thought at all. And when I do I am able to see the benefits of it instead of the downfalls. But every once in a while, I just wish it would go away.

The past week has been a hard one. Hard to stand up, hard to sit down, hard to sleep. Hard to carry the baby, change his diaper, give him a bath. Hard to get the dishes done, or the laundry, sweep the floor. Just the thought of getting off the couch is overwhelming sometimes. Not because I’d rather sit and watch TV, but because I know it’s going to hurt more if I get up. And while most everyone would think “Okay, so just sit down and relax.” I can’t. I don’t know how. Sitting on the couch watching TV is a waste of time to me. I’d rather be living my life than just watching someone else live theirs.

I want to have an impact on the world, but sometimes I wonder how I am going to do that stuck on the couch. I don’t want to sit and relax, I want to hike mountains, run marathons, build a house with Habitat For Humanity. I’m tired of offering to help with something, and then ‘warning’ them of my physical limitations. I just want to do what I want to do, and not have to think about whether I have the ability to do it.

And for the times I really do want to just sit down because it hurts too much, usually I can’t. There’s a diaper to change or a baby to chase or dinner to make.

Sometimes it makes me bratty. Sunday, I was a brat all day and I knew it. But I couldn’t change it. I took my wheelchair into church, because we were supposed to help greet and hand out bulletins. We were late getting there (because of my pain), so they already had it covered. I was frustrated that we were late (again) and missed out on helping because of my disability.

In the service, the baby started fussing. I realized that we forgot to check him into the computer for childcare when we arrived, so my husband couldn’t just go drop him off at the nursery. The baby needed to be checked in first, but Sal didn’t know how to do it. I instantly got irritated with him for not knowing how to do it. This meant I had to do it. The reason I didn’t want to have to do it? Pain. I can’t hold a baby and wheel my chair. So I had to get up and carry him. Trying to stand up, I stumbled on the footrests of my chair, and almost fell. We were sitting near the front, so I felt like everyone saw. I needed the childcare card on the key ring, so I asked Sal for the keys. When he asked “What for?” I snapped “Just give them to me.” Because I wanted to do things quickly and not have a conversation about keys while people were trying to hear the sermon. In hindsight, it wasn’t very WWJD of me.

So I took the baby and rushed out to the foyer. At the check-in computer, it would only give me the option to check out, not check in. I thought maybe if there’s someone in the nursery that knows me well, I can leave him anyway. Buuut then I realized I left the diaper bag, with his bottle, in the sanctuary, all the way at the front. I was not about to walk all that way past all those people and back with a crying baby. I looked at the keys in my hand and decided I’d just take him to the van and nurse him. The back seat has tinted windows and screens to block the sun, so nobody can see in. I hoped that Sal would notice I left the diaper bag and come to my rescue, but he didn’t. Oh well, I needed a time out anyway.

When we were finally done, we went back inside, but everyone was coming out because the sermon was over. Sal came pushing my chair. I sat in it, and we tried to make our way through the crowd to find my daughter. He asked me a question, and when I answered, he didn’t hear me (a common occurrence when I’m in my chair). Someone else heard me and they said “What?”, so I told them that I was talking to Sal, but they didn’t hear me clearly and said “What?” again. Frustrated that nobody can hear me because I’m so far down and there are a lot of people around, I turn around to answer Sal. He had a Soda in his hand and his hand was over my sweater, so when I jerked around, his hand slipped and the soda splashed. He made a loud smacking sound with his mouth, indicating he was irritated. That hurt my feelings (again, in hindsight, he was irritated that the soda spilled, not necessarily with me). I felt like “Well, I don’t wanna be in this stupid chair where nobody can hear me, but I have to be.” So I got out of the chair and walked.

On Tuesday we stopped at the store to pick up a few things. I wanted to take my wheelchair into the store, but the baby was asleep, so we needed the stroller, which meant I would need to push the cart. For the first time, I decided to use one of the motorized scooters the store offers. That way I could sit down, and there’s a basket on the front for the items we need. I’d never used one before, because I’m always afraid I’m going to run someone over or knock down a shelf, but now I had no choice.

I was able to handle it ok without running in to anything, but all through the store I kept getting head shakes and eye rolls. I already knew why; in fact I kind of anticipated it. People see me, young and thin, and think I have no business being on that thing. That I’m just messing around, depriving some poor old lady who actually needs it. Same reason I get dirty looks in the handicap parking space. The fact is if I were 77 instead of 27, or if I were 50 pounds heavier, people would think I had the ‘right’ to use the motor cart. But I don’t ‘look’ like I need it. And kids these days just don’t respect anything.

As one gentleman stood there staring with his hands on his hips, I thought “Say something. I dare you.” Again, admittedly not the attitude I should have had. Sometimes I just get fed up. Well trust me sir, I’d rather be walking around just like you.

We went to the store again yesterday to pick up some supplies for a Relay fundraiser I’m working on. I used my wheelchair. And again when we went to the pharmacy. And you know something? I wasn’t in a whole lot of pain last night. I was able to sit on a stool and make dinner without having a breakdown about not being able to make dinner (something that’s happened every night this week. And at least once a week every week.) So it looks like the simple solution is to start using my chair when I go to the store or do other things that require a lot of walking, even if I don’t feel like I need to. I don’t like it, but it’s the smart thing to do. It will help me function better when I have to be on my feet.

So there you have it. I don’t always see my disability as a blessing in disguise. Sometimes I wish someone else had gotten it instead of me. Someone that doesn’t mind sitting on the couch all day. But I have to remember that nobody has it perfect, and we all have problems we have to contend with. This is mine, and it’s not as bad as it could be. Something good will come out of it. I can still have an effect on the world, even if I have to do it from my couch.

Sometimes it's difficult, but this face makes it totally worth it.

Sometimes it’s difficult, but this face makes it totally worth it.

Cerebral Palsy Awareness: Treatment

My final post on CP Awareness, for now. Enjoy! 🙂

When most people think of treatment, they think of doctors and hospitals and needles and miserable, ongoing physical therapy sessions. That’s not how I remember it.

My earliest memory as far as treatment, I was four or five years old. We were at Shriner’s Hospital, where we spent a lot of time when I was growing up. But it wasn’t what you’d think. Not what you see in the movies. I wasn’t miserable, not at all. It was fun! The nurses were nice and talked to you at your level. There was a rec room and lots of other kids to talk to and play with. And none of those kids thought you were ‘weird’.
This particular time, we were out in the yard of the hospital, and there were clowns and games, and the WSU football team was there. I only remember pieces of it. But I remember it was fun. I remember someone from the local newspaper was there and they took my picture.
Shriners2

I’ve had surgery three different times, totaling 10 incisions. Surgery is performed on children with CP that have severe muscle contracture. They cut the shortest fibers of the muscle, to lengthen it. For me, and many other patients, this meant my heels touching the ground instead of walking on my toes, being able to (almost) straighten my legs, and being able to stand up straight, instead of being bent at the hip. To reduce pain and sensitivity, sometimes causing numbness, they might also cut the nerve.

The first time I had surgery I was two years old. It was to lengthen the Achilles tendons on both legs. I don’t remember it, but I’ve seen pictures of the bulky, plaster casts that went all the way up my legs, as well as the big blue foam bumpers that went around them to keep the casts from knocking together and breaking.

My casts and foam bumpers at two year old. My grandma is holding me :)

My casts and foam bumpers at two year old. My grandma is holding me 🙂

I remember the trips to Shriner’s, about two hours away, to assess treatment. Sometimes it was just me and my mom, sometimes my little brothers came too. I loved the little road trips. I’d ride in the front seat with my pillow and blanket and 20 of my favorite stuffed animals; mom would stock the car with donuts and snacks. When we got there, the doctors would pull my legs up and down and watch me walk and test my reflexes. It was all to evaluate the locations and extent of my impairment, in order to plan treatment options. When they were done, we’d go out to the swing set or to the rec room and play games. Then it was back home.

The second time I had surgery I was five. It was during kindergarten, and I remember returning to school in a wheelchair. Again, it was on both Achilles tendons, and the casts went all the way up my legs. I remember all the kids being fascinated with the wheelchair, and that they could write on the casts. On one occasion, my teacher, Mrs. Herald, who was probably in her 50’s, wanted all the kids to lay on the floor and read. She told me I could sit at my desk, but I wanted to lay on the floor with all the other kids. Instead of brushing me off and telling me I couldn’t, she picked me up out of my wheelchair herself and laid me on my stomach on the floor. The whole class laughed at the sight of her carrying me, but I was glad at the opportunity to do the same thing the other kids were doing.

The last surgery I had, I was ten. They did it during the summer, to minimize the amount of school I would miss for recovery time. This surgery was more extensive; they were lengthening my left Achilles, hamstrings on both legs, and my left hip flexor. In the hospital, I had a roommate that was about my age. Her name was Savannah, and she was having surgery for club foot. I had never heard of that before, and she tried to explain it to me, but I didn’t really understand. It was fun to have another girl my age there to talk to and play games with. Someone who could really relate.

After we went home, having to recover during the summer was hard for me. I loved to swim and ride my scooter and play baseball with my brothers during the summer – none of which I could do with the casts and splints and stiches. I remember getting my feelings hurt when my family decided to go to the local indoor pool to swim, even though I’d have to sit there and read. Didn’t they know how much I loved swimming?? Nights were long; I had to sleep in the splints, which meant keeping them straight all night long. The left leg would hurt under my knee from the stretch of my hamstrings. I used to push the splint down carefully, just enough to bend my knee a little (Shhh! Don’t tell my mom!). But mom stocked me up with books and puzzles and things I could do until I was recovered, and even bought me a little Vtech lap top so I could play games. During my recovery we took a trip to Seattle to visit my grandparents, and we all stayed at a resort. There were lots of things I could do in my wheelchair, like play games in the rec room or mini golf. There was a beautiful pool, and I was really disappointed that I couldn’t swim in it. So my mom waited until it was getting dark and the pool was empty. She got in and told me to sit down at the edge. Then I laid on her hands, and she floated me around on my back in the water. I’ll always remember how cool I thought my mom was for doing that. I’ll also remember the half cantaloupe filled with ice cream she gave me for breakfast the next day (that she didn’t give my brothers).

I started school that year still in casts, splints, and a wheelchair. It was a little difficult, but accommodations were made, and my teacher was really nice. At home, my best friends and I decided to put on a neighborhood talent show. We liked to do dance routines (and the Macarena  ) and put on shows. I didn’t have to have the splints on anymore, and I was able to walk in the cast and practice routines. We picked Saturday the 23rd, the day after I got my cast removed, as a celebration for cast removal. To my surprise, it was a lot harder to walk and jump with the cast off than with the cast on. My ankle was really weak. The support of the cast made it easy, but without the support, I almost fell every time I took a step. But we had spread fliers around the neighborhood and knocked on doors, and there were a lot of adults coming to watch and a lot of kids coming to participate, so we couldn’t change the date now. It was difficult, and probably pretty obvious that I was having trouble, but we did it. And with the $5.00 we got from charging admission, we rented a movie loaded up on candy.

Therapy was another major form of treatment for my CP. I hear people talk about how they hated the painful therapy sessions, but that’s not how I felt about it at all. During school I had therapy once a week. The physical therapist would come and get me out of class (yesss!) for a half hour. The physical therapist I had during elementary school, Bridgette, really impacted my life. She turned the stretching and balance exercises into games, and more importantly, she never let me say “I can’t”. She would prove that I could, if I didn’t give up. Today, when I hear myself saying I can’t, I hear her voice reminding me not to say ‘can’t’. That I can, but I have to keep trying; find another way. She ended up starting her own children’s therapy business. Through that I got to do a lot of things that ‘other’ kids got to do, like dance and Tae Kwan Do. She ended up moving to Seattle, and we lost contact, but if I could see her today, I would thank her.

I also did horseback riding, known as Hippotherapy, and swimming therapy. Hippotherapy benefits because of the effect the horse’s movement has on the person. Swimming therapy’s main benefit is that the buoyancy of the water makes the person almost weightless, so it is easier to move and exercise without putting harsh strain on the bones, joints, and muscles.

Another form of my treatment was leg braces, or AFO’s. I think I was about four years old the first time I got them. I hated them. One of my best friends has Spina Bifida, and she loves her braces. And I know of others that love their braces, but I have always hated them. I remember them feeling uncomfortable and restrictive, and that they always pinched my legs when I sat in the plastic chairs at school. Not to mention how ugly I thought they were. I felt like I looked like I had robot legs. Especially with the giant shoes I had to wear to fit over them. I always tried to get out of wearing them, and sometimes my mom caved and I didn’t have to. The last time I remember having them as a kid I was nine or ten. My poor mom; I probably complained so much that she just didn’t push it anymore.

For children, there are many treatment options, including the ones I talked about above. There is also speech therapy, for children whose CP affects their ability to speak, eat, or swallow. Muscle relaxers are prescribed to patients who have severely contracted muscles. Occupational therapy, similar to physical therapy, is mostly for those that have trouble using their arms and hands. There are also newer treatments, like Botox injections to ease contracture on a longer term, and new discoveries with cord blood and stem cell treatments that are actually making some symptoms disappear! Unfortunately for me, these new discoveries have so far only worked on young children.

I moved to California when I was 13, and there wasn’t any treatment after that. I tried to seek out treatment as an adult when I turned 18, but nobody seemed to know what to do with me. A big issue I have encountered, and a lot of why I write this blog, is that there is not enough information or treatment options for adults with CP. Once you’re 18, Shriners (a children’s hospital) doesn’t help you, and doctors don’t know what to do with you. Research online only finds information on ‘your child with CP’. My problem is this: Children with CP turn into adults with CP. It doesn’t go way on your 18th birthday, but your options for treatment seem to. Why isn’t there more information, knowledge, and options for us?

Soon after my 18th birthday, I went to an orthopedic. He measured the tightness in my legs and said “Yeah, you have contracted muscles.” When I asked him if there was anything we could do about my obviously in-turned knee, a brace or something, he said he didn’t know what I was talking about. Other orthopedics wouldn’t even see me; they said something had to be broken or sprained for them to see me.
With no insurance, I gave up. When my pain and weakness got pretty severe while I was working at the bank, where I had insurance, it was time to try again. My regular doctor helped with some medications and a referral for physical therapy. The therapists were nice and they worked hard to help, but even they didn’t seem to know much about CP. It was my idea to get a wheelchair when nothing seemed to really be working, and the wheelchair helps, but I still wonder if there’s a way I wouldn’t have to use one. If maybe had treatment continued, I’d have had another surgery. If maybe I could make up for it now.

My doctor also referred me to a therapy and CP specialist about 4 hours away (at a children’s therapy center) who agreed to see me, even though they don’t treat adults. She told me I needed AFO’s, so she fitted me for them and had them made. Honestly, I hate them as much as I always did. I thought as an adult I wouldn’t, but I do. They’re still restrictive and uncomfortable, and my feet hurt around the middle of the day. When I wear them, even for long periods, I don’t feel much of a difference. Admittedly, I don’t wear them as often as I should.

Now, on disability, I don’t have any medical insurance. I’m not eligible for Medicare until I’ve been on disability for 24 months. So I pay out of pocket for doctor visits and monthly prescriptions. I hear Medicare doesn’t cover much anyway.

One of my goals, friends, is to change the issue of finding treatment options for adults. My friend with Spina Bifida has encountered the same problem. CP and SB seem to be considered childhood diseases, but they are life long. We want more than just “Here’s a wheelchair and some pills; good luck.”

I would like to see more research being done and more solutions being implemented. Is it silly of us to expect more? To my readers with CP and other disabilities, have you had the same problem, or what treatment solutions have worked for you?

Shriners1

Cerebral Palsy Awareness: Complications and Associated Conditions

“Cerebral Palsy doesn’t get worse.” That’s what I was told when I was a kid asking questions. Technically, that it true, but as I have discovered, in some ways, things do get worse.

As I discussed in my first CP Awareness post, Cerebral Palsy, by definition, is brain damage. The complications and associated conditions are the tangible evidence of the brain damage. A person with Cerebral Palsy might have all or only some of these. I, thankfully, have only a few. But I am finding that the older I get, the more ‘complicated’ it gets. According to mayoclinic.com, these are some complications of Cerebral Palsy:

• “Contracture. Contracture is the shortening of muscle tissue due to severe tightening of the muscle (spasticity). Contracture can inhibit bone growth, cause bones to bend, and result in joint deformities, dislocation or partial dislocation.”

This is a complication I have. Despite surgeries to lengthen my muscles, the spasticity in my legs is very noticeable. My hip flexer actually pops out, and my left knee is permanently twisted inward. When I stand, my knee is not in the center, but to the right of my leg. It wasn’t always that way. That is from the tendons being too tight while I grew. Growing pulled at my tendons like resistance bands, forcing my bones to accommodate.

• “Depression. Social isolation and the challenges of coping with disabilities can contribute to depression.”

I don’t think I’ve ever been ‘clinically depressed’, but there have been times that I’ve been worn out, physically and emotionally; as well as feeling isolated. Looking back, I’ve noticed that during those times there was a drop in school or work attendance and performance.

• “Premature aging. People with cerebral palsy often experience medical conditions in middle age that are more commonly associated with older age. Such premature aging can result from significant stress on the body and poorly developed heart, lungs or other organs that may not function at a typical capacity.”

I haven’t reached middle age yet, but my CP is mild, and I don’t have a reason to think any of my organs are ‘poorly developed’. I do have a little concern about the fact that I take medicine on a regular basis, and how it might affect my body in the long run.

• “Post-impairment syndrome. This condition is characterized by pain, fatigue and weakness resulting from stresses on the body, movements to compensate for disabilities and the significant exertion of energy needed for everyday functions.”

I couldn’t have described my everyday physical state any better. As I mentioned, it wasn’t always this way, but it has gotten better since I ‘dropped out of the rat race’. I thank God for that, and I’m also praying that I don’t lose more mobility as time goes by. But I know that if I am not working, it is because God has something better for me. There are countless mothers that wish they could stay home with their kids, and I get to do it. I do not take that for granted. I also know that that is not my only purpose, and I want to help as many people as I can.

• “Osteoarthritis. Pressure on joints or abnormal alignment of joints from muscle spasticity may result in the early development of painful degenerative bone disease (osteoarthritis).

I think I might have this in my hip joints. That is the joint that connects your femur to your pelvic bone. I just read that it’s usually treated by hip replacement, which kinda freaks me out.

Associated conditions are a little different from complications in that they are usually directly from the brain damage (issues from the beginning), where complications come down the road (side effects from the body wearing out, so to speak). Here are some of the associated conditions of CP:

Impaired vision and/or hearing

Malnutrition and/or failure to thrive– Difficulty eating and swallowing because of low muscle control can cause malnutrition, growth, and development problems.

Yeah… let’s just say I’ve never had a problem with malnutrition…

Although, my mom told me that when the doctors hooked me up to those wires to help them see how my muscles worked, they told her that I burn two or three times the amount of calories as others doing regular tasks, like walking across the room. This is because it takes twice the effort.

Mental Impairment

  Incontinence – This would be due to lack of muscle control

Speech and/or drooling problems – Also due to lack of muscle control

• Epilepsy

Dyslexia and/or ADD

So my problems from CP are mobility related, and I don’t have any associated conditions. I hope that I don’t lose any more mobility. I’m still trying to find the balance between living life to the fullest now, and ‘saving my mobility’ for later. One of my doctors told me that I should stay seated and use my chair as much as I can now, so that I can put off the loss of mobility. I find that very hard to do. Especially with two kids, but also because I don’t really like using my wheelchair. Don’t get me wrong – I’m grateful for it when I really need it, but I find myself pushing my limits to stay out of it. Everyone tells me I’m too independent, and maybe that’s true…

But while I search for the balance and believe for the best, I hope I teach my kids not to put limitations on themselves or others. That it’s not your circumstance that matters, it’s your attitude. To not be afraid of the ‘what-ifs’.

You can be Supergirl, even with a broken arm.

You can be Supergirl, even with a broken arm.

Catwalk in a Wheelchair

I’m interrupting my CP Awareness series to bring you some breaking news: Yesterday I got to model in my wheelchair.

As some of you know, my uncle was diagnosed with cancer last January. To show our support and help fight cancer, our family has participated in Relay For Life the past couple years. Macy’s does a Mother’s Day brunch and fashion show to support Relay For Life. They use volunteer Relayers to model some of their new clothing. My daughter loves to be in the spot light, so she was super excited to volunteer. They said they wanted mother/daughter teams, and she really wanted me to do it with her, but I wasn’t so excited. Let’s just say she doesn’t get her love of the spotlight from me. I wasn’t so sure, but I didn’t want to disappoint her. A million things ran through my head, the first one being a clear vision of me tripping and falling in front of a restaurant full of people. So I thought, what if I modeled in a wheelchair? I wouldn’t be as nervous, there would be no falling, and I wouldn’t have to worry about how long of a ‘runway’ it was or whether there would be chairs behind the curtains or in the dressing room. I asked my aunt about it and got into contact with the people in charge of the event. Everyone liked the idea, so reluctantly, I went for it. We had a fitting at Macy’s last Friday, and the brunch and fashion show was yesterday at a local restaurant.

There were a few teams of models, including my aunt, cousin, and beautiful 7 month old niece, and the cutest, nicest, spunkiest little elderly lady I’ve ever met. I was pretty nervous up until the first couple teams went, and then I started to calm down. The weird thing is, in situations like this, it’s not the strangers that make me nervous, it’s the people I know. Am I alone in that?  I was pretty sure my mom was gonna start cheering and clapping (Love you mom!), but she didn’t. Somebody did do an “awww”. I hope they were doing it for my 8 year old… but I think they were doing it for my wheelchair.
The ‘runway’ wasn’t too long, but there were no chairs backstage. The fitting room was the bathroom, so there were no chairs there either. I wouldn’t have been able to stand that long, and I can’t get dressed standing up, so I’m really glad I did it in my wheelchair.
It was fun though, and Romi is already making plans for next year’s cat walk 🙂

Here are some highlights:

Romi and me before the show. Rock n Roll!

Romi and me before the show. Rock n Roll!

Macy's outfit #1. Just keep smiling!

Macy’s outfit #1. Just keep smiling!

 

Macy's outfit #2

Macy’s outfit #2

Outfit #3. The lady called it a jogging outfit. I thought it was kind of ironic...

Outfit #3. The lady called it a jogging outfit. I thought it was kind of ironic…

She liked this dress and jacket so much she used the gift cards they gave her to buy it after the show :)

She liked this dress and jacket so much she used the gift cards they gave her to buy it after the show 🙂

I could never be a real model; I like my chocolate too much. But was a lot of fun, for a good cause; and everyone, especially the Macy’s ladies, was really nice. The clothes I modeled were pretty, but honestly… I still shop in the juniors department lol. Maybe if I still worked at the bank…

Cerebral Palsy Awareness: Symptoms and Diagnosis

Even though my cerebral palsy was most likely developed in the womb, I wasn’t diagnosed until I was two years old. The floppy and hypertonic muscles and movements of babies with cerebral palsy are so similar to that of any other newborn that unless it is a severe case, it isn’t noticed until months down the road, when developmental milestones are missed, or something seems ‘not quite right’. Even then, doctors want to rule out other possibilities before making a diagnosis.

After interviewing my parents, this is what I learned about how they found out I had CP:

I wasn’t crawling until  about 10 months, but when I ‘crawled’ I just pulled myself with my arms and upper body, and my legs dragged behind.

IMG953060

Since some babies learn to crawl this way, my mom didn’t think much of it. My dad wondered if there was a problem, because the muscles in my legs always seemed tight and contracted, and my feet and toes were always pointed down.

In this pic of me, about a year and a half old, notice how my feet are pointed down. I am unable to rotate my ankle to point my toes voluntarily.

In this pic of me, about a year and a half old, notice how my feet are pointed down. I am unable to rotate my ankle to point my toes voluntarily.

My mom noticed had more trouble with my left side.

As I try to crawl, notice how I am not supporting my left side and well as my right, so I look 'lopsided'.

As I try to crawl, notice how I am not supporting my left side and well as my right, so I look ‘lopsided’.

When I learned to stand I always stood on my toes. When I learned to walk a long time after, I walked on my toes. Since my mom walked on her toes when she was young, she didn’t think much of that either. But when it seemed to be getting worse with time instead of better, they became concerned.

It should be noted that I have a mild case of CP. A lot of babies’ symptoms are much more obvious. Still, unless the baby has a severe case, it probably won’t be noticed until the baby starts trying (or should be trying) to get around on its own.

One of the tell-tale symptoms is a failure to reach developmental milestones, like pushing up, crawling, and walking. Other symptoms can be:

  • Continuing primitive (newborn) reflexes after 6 months of age [americanpregnancy.org]
  • Muscles that are abnormally stiff or floppy
  • Lack of coordination
  • Tremors or involuntary movements
  • Writhing movements
  • Preference and better use of one side of the body
  • Drooling (beyond appropriate age)
  • Trouble with sucking, eating, and swallowing
  • Speech difficulties

[mayoclinic.com]

The symptoms depend on the type of CP, which depends on the part of the brain that was damaged. The severity of the symptoms depends on the extent of brain damage. Most of these symptoms would be difficult to see in a baby, which is why CP is normally not detected until between 1 and 3 years of age.

In my case, a diagnosis was a long, winding road, but here’s the short version:

My mom remembers taking my grandma to her foot doctor when I was a little over a year old. The doctor played with me a little and then continued with the appointment. When my mom put me on the floor to crawl around, the doctor noticed I didn’t crawl quite right. With permission, she picked me up and tugged on my legs a little. She mentioned to my mom that she might want to take me to a doctor. The first doctor thought it was an orthopedic problem and tried correcting it with casts. My family saw that it wasn’t helping, and they contacted Shriners Hospital. The Shriners doctors started by coming to my home to measure my legs and flexibility. Following that, they did cat scans, reflex testing and other tests. They hooked me up to electronic impulse wires; wires that read electronic impulses from my brain and muscles, and analyzed them with a computer. My mom remembers that they hooked me up to these wires and had me walk down a long, black mat. On the computer all you could see was my skeleton walking. Finally, at two and a half years old, they had a diagnosis.

That, of course, was 25 years ago. Today, maybe a diagnosis would come sooner. I could be wrong, but I think doctors now are more aware of CP than they were then. And they might not use all the same methods. My mom doesn’t remember exactly all the tests and scans they did. I don’t know how closely growth milestones were monitored back then, or whether a pediatrician today would recognize the subtle signs of my CP during a routine checkup. I don’t know if they still use the electronic impulse wires, but I would love to see that! I do know that they use MRI’s and CT scans, as well as flexibility and reflex testing to help in making a diagnosis.

Along with my diagnosis of CP, my mom was told that I would never be able to run or jump or ride a bike. But she and my family didn’t just take the doctors’ words regarding my future and my abilities. They let me decide. And they helped me achieve my full potential. So when you or family member or friend receives a diagnosis, and the doctor tells you what to expect, respectfully thank them, and then do everything you can to overcome the odds. Let God decide what you are capable of.

Jump rope was one of my favorite things to do as a kid... despite the doctors saying I would never have the capability.

Jump rope was one of my favorite things to do as a kid… despite the doctors saying I would never have the capability.

Cerebral Palsy Awareness: Causes of CP

During the month of March, I told you I would be writing about information on CP in honor of Cerebral Palsy Awareness Day/Month. Due to some family issues, I was unable to keep up on my posts. I will continue my posts on awareness now 🙂

Cerebral Palsy Awareness: What Causes CP?

Most of my childhood, I thought it was oxygen deprivation during childbirth that caused my CP. In fact, when people ask now, I still tell them that. Partly out of habit; partly because it’s easier than “I don’t know”, or running the list of factors that it could have been. Somewhere along the line I was told that it might not have been that. In 10th grade I did a Biology report where I found out that if a mother’s blood type is Rh negative, and the fetus has Rh positive blood, the mother’s body can trigger an auto-immune response, actually attacking the fetus as a foreign substance in the body, which can cause brain damage leading to cerebral palsy. This is called Rh Factor Incompatibility. Interestingly, my mother has Rh negative blood, and I have Rh positive. I still can’t be sure that is what caused it, because it could have been oxygen deprivation, or it could have been a few other things on the long list of causes.

While you read, please remember that I have no medical training, and this is solely for informational purposes.

Congenital CP

‘Congenital’ refers to cases of cerebral palsy caused before or during birth. This makes up for 85 to 90 percent of cases. [cdc.gov]

Bad habits

It is still unclear exactly what percentage of CP is caused from the mother smoking, drinking, or consuming illegal drugs due to questions not being asked on paperwork or dishonesty on the mother’s part. Personally, I think these are the most preventable causes of CP. I have a good attitude about my disability, and I believe I can use it to make a difference, but I would not wish it on anybody. If you are or you know a pregnant mother who uses cigarettes, alcohol, or drugs, please, find all the information you can on the problems it can cause for the baby and scare them out of it. CP is only one of the many affects it could have on the baby. That is a choice you are making for your son or daughter.

Environmental Contaminants

“There have been a number of specific incidents where the number of children affected in certain geographical areas increased temporarily due to environmental pollution. An epidemic of CP occurred in Minamata Bay, Japan, between 1953 and 1971. This was eventually found to be related to methyl mercury in fish which had been consumed by pregnant women. The discharge of methyl mercury had come from a vinyl chloride acetaldehyde plant.” (Miller & Bachrach) [Cerebralpalsyorigins.com]

Scary, right?

I happen to live near one of the few spots on the map where the government decided to put a nuclear plant. The nuclear plant provides many jobs and a pretty stable economy in the area to this day. They did their bomb testing for a while, about 60 years ago. Since then, it has been a ‘clean-up project’. What does that mean? It means they have thousands of gallons of toxic chemicals and radioactive waste that they’re still figuring out what to do with. They are, or were at one point, held in underground containers. I also happen to live near a very large river. Over the years they have discovered that the chemicals have seeped into the ground and the river water. This river helps supply the tap water for the entire area. It is also a source of recreation. On any given summer day, you can go down to the river and find people swimming, fishing, and boating. I spent every summer of my childhood swimming in that river. According to reports, the amount of contamination is minimal. Of course, side effects can still exist.

One of the possible side effects of fetal radiation exposure? Brain damage.

The area I live in is pretty small. It’s growing fast, but it’s no Chicago. My mom has lived here her whole life. I was born and raised here until I was 13. Then I moved to California with my dad. We lived in a pretty big city that was close to more big cities. From there we moved to the Minneapolis/St. Paul area. Then I moved to Phoenix to spend time with my grandma. When I was 20, I moved back here. Since I moved back, I have noticed there are more people with CP in this small town than I ever noticed in any of the big cities I’ve lived in. Have you seen Erin Brockovich? This could be the sequel. I would be really interested in someone doing a study to compare the ratio of CP incidents here to that of the rest of the country.

Now that I’ve scared all of my friends and family living in the area, we’ll talk about the other prenatal causes of CP.

Malnutrition – Take good care of your health while you are pregnant. Eat right. Get lots of foods rich in Omega-3 and fatty acids. Olive oil and avocado. Don’t diet. Take your prenatal vitamins.

Multiples – Having multiples increases the chance that one of the babies will have CP. It’s a tight fit in there! But don’t let that scare you. It doesn’t mean they can’t all come out just fine.

Rh incompatibility – This is not as big of a problem as it used to be. Now, if it is determined that there is a risk, shots can be given to prevent problems.

Infection during pregnancy – Chickenpox, Rubella, Meningitis, and other diseases contracted during pregnancy can harm a baby and cause CP.

Maternal health problems/Genetics – Cerebral Palsy is not genetically inherited. But genetic factors, as well as any health issues, like thyroid problems or seizures, can play a role in causing other problems that can contribute to CP.

Incorrect use of forceps/Vacuum/Handling of newborn – Newborns’ heads are very sensitive. They are still soft and forming. You’ve seen the lawsuit commercials? This is what they are referring to.

Asphyxia/Hypoxia – (Oxygen deprivation) Usually due to prolonged labor or a wrapped or pinched umbilical cord.

Preterm/Low birth weight – Babies with a low birth weight are about twice as likely to develop CP.

Jaundice – Severe or untreated jaundice can cause CP.

Acquired CP

Acquired CP refers to CP resulting from brain damage that occurs more than 28 days after birth [cerebralpalsyorigins.com].

Infection – The same diseases that can cause CP in the womb can cause CP as an infant or young child.

Injury – Brain damage from injuries or child abuse.

Hypoxia – This could be from stroke, bleeding in the brain, or other causes of oxygen deprivation.

There are endless reasons that a child can have CP, and an exact cause is rarely pinpointed. Usually there is only speculation. While they are pretty sure that I was born with CP, it could have been Rh incompatibility, oxygen deprivation due to a prolonged labor, environmental toxins, a genetic problem, or another reason altogether that caused it. It is not entirely preventable, but by taking care of yourself and your baby during and after pregnancy, you can reduce the risk of cerebral palsy. For the children that end up with it anyway, I am living proof that it is only a hurdle, not a sentence.

Life is what you make it. I have a CP, but it does not have me.

Life is what you make it. I have a CP, but it does not have me.

Cerebral Palsy Awareness: What is CP?

I found out from the Cerebral Palsy Support Group Facebook page that March 25th is Cerebral Palsy Awareness Day. By association, that makes March CP awareness month (don’t worry, I Googled it. It’s true). In honor of that I will write about CP ‘trivia’ this month. I believe awareness means knowledge. As with just about anything, there are many misconceptions about CP. If we want to spread awareness, we have to spread knowledge.

So I’ll start with What Is CP?

Cerebral Palsy is brain damage. It affects muscle tone and control and motor skills; in varying degrees. It is known as a ‘blanket’ or ‘umbrella’ term, because there are many different types and severities. I have spastic ataxic CP. That means I have too much muscle tone (spastic) in some areas, and not enough muscle tone (ataxic) in others [livestrong.com]. Translated into actual English, this means that my muscles are too tight in some places, and too floppy (uncontrollable) in others. For example, my hamstrings are so tight that I can’t straighten my legs, but I have such little tone in my toes and ankle that I can’t wiggle my toes or rotate my ankle. I have read that you can have diplegia, affecting just the legs, hemiplegia, affecting one side of your body, or quadriplegia, affecting all four limbs. To me it seems that it affects both my legs (left worse than right), but only my left arm, so I’m not sure where that leaves me :/

The severity of cerebral palsy can range from barely noticeable to being in a wheel chair with a headrest. I once worked with a girl that after asking me if I had CP, told me that she could tell because she did too. Had she not told me, I would not have known. However, I have seen many people that are in a wheelchair with a head rest, unable to talk or feed themselves. Seeing those people always helps me remember that though I have a lot of challenges, there is so much, like my independence, to be grateful for.

Specifically, CP is neurological damage and how it affects motor skills, but there are a lot of associated conditions that can go with it. I read on cerebralpaslyorigins.com that 65% of people with CP have intellectual impairment. I am very blessed that I am not intellectually impaired, and seeing that number made me realize just how blessed I am. Other common problems are epilepsy, hearing impairment, or vision impairment. For lack of muscle control, it can also cause drooling and incontinence (cerebralpalsyorigins.com).

Cerebral palsy does not worsen over time. That is, the damaged area of the brain does not worsen. As I have discovered in the past few years, the effects of it do worsen. For example, when I was a kid, the only trouble I really had with it was that my back would hurt if I sat on the floor or in the bath tub, and once in a while my ankle would hurt. I could walk or run as long as I wanted to without much trouble. I could do everything everyone else could do. Sometimes in a different way, but I could do it. Now, after years of walking the ‘wrong way’ and over compensating for the parts of my body that didn’t work well, my back constantly hurts, I can’t walk or stand very long, and I fatigue very easily. Basically, my body is aging at a much faster rate than that of my peers. That being said, I won’t suddenly begin to experience intellectual impairment, drooling, or any of the other associated symptoms because of it. It will always just be the impairment of my arm and legs, and bad balance.

Before the pain and fatigue started, I was unaware that it would happen. I always thought I would just limp, have muscles that were too tight, be unable to move my ankle and toes, and have bad balance. When they said the CP would never get worse, I thought that, well, it would never get worse. But years and years of body parts moving in a way that was not intended for them to move has taken its toll, and I’m only 27. Now, in a wheelchair, unable to get a good night’s sleep, and unable to cook a decent meal for my family, I’m honestly not sure what lies ahead. How long until I can’t walk, or even stand, at all? Will I be able to interact with my kids the way I want to while they’re young? How are the medicines I’m taking on a daily basis going to affect my body down the road? Will there ever be a way out of this daily pain? Will hot tubs ever come in prescription form and be completely covered by insurance? (Okay, so that was to lighten the mood, but still, never say never!)

I haven’t been able to find a lot of information on how CP affects a person into adulthood. Everything I can find is about ‘Your child with CP’. I am really hoping that this will change soon. Especially because a child with CP is a future adult with CP. It doesn’t disappear on your 18th birthday, but that seems to be when you’re unable to find help anymore. But I am not called to worry, so I take it day by day. I am granted the grace to get through it. Hopefully to thrive with it, because I do not believe in surviving, I believe in living. Who knows, maybe I will be the guinea pig pioneer that helps millions navigate their way through rockin’ in life with CP.

How long will I be able to do this?

How long will I be able to do this?