To write about it...or not to write about it?
I've struggled with this for awhile. But I just saw an article on "The Mighty" about the same thing, so, I think I should write about it...
When I saw the movie "Forrest Gump," my mouth dropped...I was stunned. He was fitted for braces, and I thought, "There's something I know a lot about!" I had never before seen that in a movie though. His foot got stuck in that drain, and his mom had to keep him balanced while she dug it out.
"Well, what are y'all strain' at? Haven't you ever seen a little boy with braces on his legs before?"
But the most familiar scenario to me, was the bus. He walked the isle, and kept going as students leaned over the empty space, making faces...looking for that one kind heart. Of course, he finds it in Jenny...
"You can sit here if you want."
I have mentioned before that when online, I stay away from talk about my disability because that's the place where no one has to see it, or know anything about it. In Forrest Gump, his condition is never given a name (to my knowledge); but when he miraculously manages to outrun that truck with those bullies in it, and his braces come off, piece by piece, we no longer care! We know, from that moment on the he is going to be ALRIGHT!!
Okay...I have Cerebral Palsy. I've had it since birth, which I believe is the case with most folks who have it. So, in short, I am no stranger to people asking me "What's wrong with your knee?" This is because one side of me is weaker than the other. I actually have "quite a good gait" according to doctors who've looked at me. The short version is, I walk with a limp, that often simply makes me appear as though one of my knees hurts. It's really not so bad...it just makes some folks wonder if I've hurt myself. As a kid, I wore braces. They were NOT like the ones in "Forrest Gump.". But on the other hand, they were not too far off: leather shoes with a bar screwed in to each side. The tops were just under the knee, metal, but with leather and Velcro on the outside. The shoes themselves with their groovy, gold laces actually looked pretty nice with a pair of pants, or my favorite jeans. But I couldn't hide the screws on each side of the shoes...so I would still get stares, and people always asking me what they were...what they were for...
So, the most common question people ask is, "What is it?" What is Cerebral Palsy, or CP? Well, I'll explain it the simplest way I can think of: it is muscle weakness, caused by damage to the brain, due to a lack of oxygen, usually at birth. Cerebral Palsy varies greatly, from mild to severe...and I'm sure that since I was born, there is MUCH new terminology that I don't even know about, and CP is now categorized (I think) differently than it was when I was a child. My CP is mild. I've even had doctors tell me that they never would've known I had it, if I'd not told them. Of course, then, they get a look at my flat feet and test my reflexes, and they know. But how to really explain it to someone who just isn't familiar with it? Wow. Obviously, I can only relate my personal experiences...and as I said, it varies greatly.
My mom used to tell me that I learned to walk when I should've talked, and talk when I should've walked. Translation: Most children are crawling around at about nine months, and they typically start walking around a year to fifteen months old...somewhere in that time period. In their first year, they might learn to roll over, pull themselves up, things like that. Most children start talking at about a year and a half (saying words) here and there, rather than just babbling...and then their vocabulary gradually progresses each year. So, it's like this: I've done everything backwards. I've DONE it! That's the important thing...I've done it. But I've done it my own way, and at my own pace.
Mom wrote in my baby book that at two years old, I had the vocabulary of a four year old. Apparently, I did not have a first word...this is because I just started saying sentences. And singing! I would sing EVERYTHING...and I still do today. It's almost like there's a part of my mind that just does not shut off. I TALK all the time...even more when there's no one around than when there are people around. For this reason, it was AMAZING when I began talking to G-d when I was around seven or eight...because there IS someone there...and HE listens to me like no other! (So there!!). But, at two and a half, I still could not stand on my own, and walk. With a baby walker, I could go all over! (Look out!!). But could not stand on my own and walk, let alone run, like most kids are able to at that age.
I was fitted with my first pair of glasses when I was about a year old. How a doctor even figures a kid's prescription at that age, I have no idea! It's not like you can just tell the doctor whether it's clear or blurry. I didn't learn to talk THAT early! :)). As a kid I went to schools that were for kids with disabilities and I LOVED them, because it did not matter how different someone was...everybody there was different! So we were all able to be different together. Anyway, one of the tell-tale signs of CP, is usually, a delay in what's called developmental milestones. It was known that I had CP at birth...but what can make this difficult to handle, is not knowing how a kid's development will end up being affected until they begin to grow and change.
With me...I had (and have) weak muscles, especially in the legs, weak ankles and really poor balance. I've always had visual, and spatial difficulties, which have affected my depth perception. Anyway, with these kinds of muscle weaknesses, the worry is, that rather than the muscles developing normally, they will atrophy and begin to shrink up. This is the reason for the braces and casts (which I also wore, from the time I was only a toddler.) I'm thankful now, because this helped my legs and back to stay straight. In my case, there is no spinal abnormality or curving...though I've observed many with CP who do deal with these difficulties. In school, my P.E. always had to be adapted because...well, let's just say, I was never the type who could run the mile. I did (and still do) become winded very easily. I've never needed an inhaler or anything...but exercise and strenuous physical activity makes me easily loose my breath and need a break. Some days, I get bursts of energy & can do lot's of thngs. Other days...this is not happening. As a kid, I did run, amazingly...but could not do it like the other kids did it. I don't run now, because I simply become winded too easily. But, this is not because the CP has gotten worse. Fortunately, my condition does not progress and it is not genetic (something else I've been asked a lot.). It's because my muscles don't get the exercise they need in the first place. (Now, it's out). Anyway, I'm the kind of person who would really benefit from permanent physical therapy. This is because, I would then learn how to build strength & endurance...but without hurting myself. The problem is, unless you're injured in some way, you can't just get physical therapy, and once the injury is better, your therapy stops.
With CP, even a little bit of physical strain can be painful. Example: I bought myself a trampoline with a balance bar to get some extra exercise. I then made the mistake of jumping on it (not strenuously) but jumping on it, without any stretching first. (You live and you learn). Because of the physical therapy & the stretching & strengthening classes I've had, I should've known better than this. To say the truth, I was so excited to get that trampoline, that I just started jumping on it!
So, soon after, I walked out my front door one day and as soon as my feet hit the cement, I felt this shooting pain down both my legs. Not a pulled muscle, but definitely strained. It took about two weeks for my muscles to "rest," adapt, and then get stronger. This may sound like a long time, but when your muscles are weaker than they should be due to a neurological condition, things happen. Coupled with horrible balance, I was afraid to walk for awhile without leaning on anything. With a lot of pain pills, ice, heat, and then slowly getting up, grabbing onto furniture, I was able to again walk like I had before, but in the course of getting back to normal, I began to feel as though I had a very serious injury. I didn't, I was okay. But my body took a while to bounce back, if you will.
Sheer irony: I can walk very well, and very quickly... but the slightest little thing can throw me off balance and I can fall. My body does not absorb shock well, so even the slightest "bump" can take me to the ground. This is, to say the least, frustrating!! By the grace of G-d, I have never broken a bone, but good grief, I have gotten SO MANY scrapes, bumps, bruises, bloody knees, bloody elbows, a black eye a couple times. I've had to sit with ice on some part of me more times than I can count. I've broken glasses, bumped my head (no concussions), and ended up wrecking things I was carrying...all because of, a raise in the sidewalk, or tree roots, a track, for a sliding glass door, a change in surface on the ground, slippery pavement, holes in the ground...you name it. It's actually not quite as horrible as it sounds; usually, all I need is a hand, or someone to lean on. At the age of six, my family went on a trip to the beach, and walking around in all that thick, slippery, sticky sand made my little ankles so sore, it was hard for me to walk period, after a while. A relative had to carry me around towards the end of the trip. I'm pleased to say, that this odd thing has not happened to me again since that trip...but my little legs got quite a work out! For the record, I LOVE going to the beach, it's awesome!
At fifteen, I had surgery on my weaker side, in order to help me get that heel all the way on the floor, and hopefully improve my gait. It worked. I went to a family reunion and a relative who'd not seen me since I was very small came up to me and said;
"We got you all straightened out, didn't we?"
When I was in my late twenties I had surgery to correct a wandering eye. My eye doctor even asked me if I was aware that this was (part of) the reason I was falling (because my eyes didn't know where to go), she said. I told her yes. Though the surgery was not purely cosmetic...I was assured, that I was beautiful girl, and would look better still when this problem was corrected. She was right. :)). I did not want to have the surgery, but now Zi am very pleased that I did. Another fear conquered!
When you sometimes can't walk without getting winded...and then you begin dating someone who's a runner...it really puts things into perspective quickly! I never realized how insecure I was!
He could run like the wind. One time, I was on a bus that he was supposed to be on with me...He thought he had a few more minutes, but the bus took off early. I pushed the button, so the bus would pull over at the closest stop, planning to just start walking back...thinking we would meet in between. I stood up to get off, and...there he was! He ran, and made it to the next bus stop at the same time the BUS made it there!! Now that's FAST! To me, that was beyond fast. Looking back, I know the sad thing was that all I could do was get embarrassed when he got on the bus. This was because everyone was staring at him wondering if he was alright. Poor guy! He was alright, but winded and worn out beyond belief (at least to me). He was sweating and could barely stand up. In truth, this scared me. (Someone who falls at the drop of a hat and gets winded just taking out the trash...oh yes!!) But in truth, I just acted like what he did was not necessary. I wondered why he was calling attention to himself.
I didn't get it. One time, he ran a race and broke his toe in the process. He FINISHED the race with that broken toe, collapsed and then had to go to the hospital. He called me that night after he was home and told me what had happened. I had not been watching him that day, and I won't lie...I'm glad I was not. I would not've handled that well. But he needed me. He needed me that day. He knew that it was not that I did not come deliberately...but then while he was on the phone with me, he had to listen to me going on and on about why I wished he wouldn't run! Poor guy! Even when he needed my support, still out of breath, he said;
"If it makes you feel any better, I was thinking of you the whole time."
Another time, when I did go to watch him race, at the end, I was down on the field to see what I could do, if anything. He was exhausted and almost fell to the ground, while his mother grabbed him by one arm and put it around her shoulders. I walked with both of them...suddenly realizing that if this man I loved, who was over six feet tall put his weight on me...I would also fall, unable to balance myself, or hold (even half of him) up. He was very careful of me. As exhausted as he was, he would not put any weight on me, not wanting to hurt me! His mother, meanwhile...gave me this look, like, "Move out of the way, you're only making this harder.". He sat down, and cooled off...thanking me for coming. I felt like crying. I felt so low...like I could not do anything for him when he needed me the most. It was awful.
What I was going through (I realize now) was twofold...Not only did I not think he SHOULD push the limits like he did (he had some other scary things happen I won't go into), but I knew deep down, that I never COULD. I never could do that...not even close. I come from a world of "Don't fall!". "Don't trip!". "Be careful, it's steep. "Slow down before you hurt yourself!"... Things like that. Not only could I never test the limits like that myself...I apparently could not help my best friend do it either! This was so awful. It was awful, and it made me angry. I was angry with myself for being weak, angry with G-d for allowing me to be so.
My love (at the time) never thought any less of me. I had other abilities and that was fine. There were things I was good at that he was not...just like with anyone. But unfortunately, this logic was not enough for me. Was I actually resentful of him because he was so good at doing something I was not? Unfortunately yes. When I was at that race, for example...he was just glad I was THERE. He didn't care one little bit that I could not carry any of his weight (if you will). But I sure did!! I felt like I was not enough, somehow. Not his fault...not at all. I was jealous...because my body would not even let me TRY those things. It's not that I have any insatiable desire to run a race with a broken toe (no thank you)!! But my body could get worn out, just WALKING, the way his did when he ran like the wind. An example would be a time I went on a day trip with a group from church. We knew we had to take our train home, but wanted to get some dinner first. This was a walk...quite a walk...and we had to hurry! I was not going to stay behind and wait, I wanted some dinner! So, I went with the small group, having no idea how far it actually was. I forced myself to stay ahead, and kept going, but MAN, was I getting tired! Tired, winded, needing water. We got to the restaurant, and I stood leaning against the door, wanting to hide my now reddish-purple face. My friend said to me: "Tina, you didn't have to walk all that way. You could've stayed there & waited for us, and I could've brought you something". This was true. I could've just walked straight to where the train would pick us up and waited. My dinner would've been brought to me. But we all have moments when we need to say to ourselves "Yes, but look what I did!". This would be just like my friend when he ran like the wind. (I just had an epiphany). So, here, I was...worn out, like I'd just run a marathon...grateful that there was a long line, because I needed to sit down & catch my breath. Fortunately, I did. We walked the distance back and then continued on to where our train was. So the journey back was longer still...and I was still a bit winded from the walk getting there. But, I made it to the train...was helped on, and stumbled down the isle to my seat. For, me it was the kind of tired that dries out the mouth, the eyes...everything. But...I DID IT!!!
I leaned forward and rested my arms & my head, on the seat in front of me...still breathing like I was running, but no longer concerned, because I was in my seat, on the train, with my dinner, and we were headed home. Mission accomplished! Accept for one thing...my 'condition" at the time, concerned the lady who took the seat next to mine. She asked me if I was alright several times, became alarmed when she saw my purple face, and offered to rub my neck & shoulders. (This was nice of her, but I'd never met this person before in my life). All I wanted was for her to not worry about me, and not point out what did not look so good, cause all I needed was some rest. Kinda like my guy on the phone that night...though I didn't know it at the time.
All he wanted (I'm sure) was for me to be proud of him. Unfortunately, when you're jealous of someone (for whatever reason) you don't give them what they want (or need). So, while some of this actually has nothing to do with CP (as we call it),a disability affects the way we see the world...and it can be painful sometimes when another's skill or ability seems to "dim" the light of our efforts just to do a personal best...because maybe we're no good at competition. In English, I'm sure this is called a spoiled sport (because not everybody is good at the same things). But anyway. Imagine you start exercising after not having done it for awhile. You strain yourself, and the next day, you really feel it. It's not serious, but you're sore & tired. This is about what it's like for me on a normal day, having mild CP. Sore & tired...some days better than others...and the "spoon theory" applies to my energy. Translation: when I say "I'm low on spoons today" I mean it! But I surprise myself!...all the time...and I'm sure I will surprise you too! G-d gives us grace to go through things, and while I might only do 2 things while someone else does 10...maybe the 2 is all I need. Incidentally, did I mention, no more braces and no more casts? (Not since I had that surgery at 15...and that brace came off earlier than expected!
