Living with Cerebral Palsy

If you are living with cerebral palsy, there is a good chance that you have had corrective surgeries, especially as a child. If you were like me, you can remember casts that were more akin to some kind of torture device. You might have even had more than one body cast that left you bedridden for months.

You might have really looked forward to the day the casts came off, like a butterfly emerging from a cocoon, only to discover that you were still as immobile without the cast! To top it off, your legs probably itched like crazy. Like me, you might have been told not to scratch; but, the itch was just too great.

Now you had stiff, unrelenting limbs, sore skin that was reminiscent of a major sunburn, and months of skin was peeling off in globs. For teen girls there was also the added embarrassment of looking like you were related to a gorilla, your legs were so hairy. But, you couldn’t shave, because your skin was so sensitive.

In short, there would be months of therapy and raw determination to even be able to get back the mobility you might have had before the operation.

There is a Point

Now, I have taken you on this little rolling trip down memory lane, not to dredge up less than pleasant memories, to make a point.

I spent the summer before seventh grade having a lateral rotation of my left leg, I believe. Both were done. But, I can’t remember which was which. Anyway, two important things happened in my life that summer. I got out of my casts; but, I wasn’t mobile enough to attend public school yet. So, I had a tutor that came to the house 2-3 times a week.

When most kids enter junior high, it is full of adventure, new experiences and new friends. For me, that happened in 8th grade. I was finally able to attend school and we moved! Ugh!

It was NOT my best year. We lived in a town so small, 8th graders only had one teacher. That year it was Mr. Arnold. He was not having a great year either. His wife had MS, and she was getting worse, he had two growing kids, and he regularly drowned his troubles in the bottle. Although he was a functioning alcoholic, his always had that smell; and, he wasn’t very alert or perceptive. My name that entire year was “Molasses”! I don’t think he ever used my real name.

I never told him how much it bothered me; but, I am sure you can remember being 14 and sympathize. I forgave him, to be sure. I knew his circumstances. Although I didn’t particularly like him, I did feel sorry for his family. So, “Molasses” I was. New school, bad nickname, and only one true friend; but, I grew up without too much scarring from that year.

Okay, Back to the Point . . .

Did you ever feel like you had to apologize for slowing friends or family down? Did you just not say anything for fear you wouldn’t be liked or labeled a whiner? I did. Actually, it was worse after I got married; but, that is a story for another day.

Anyway, I loved learning to drive with hand controls. Behind the wheel, I was just as fast, or faster, than my friends. In fact, I got a reputation (and a ticket or two) for having a lead thumb.

Then, a year and a half ago, friends gifted me with a used electric wheelchair. Now, I could even go for “walks” with people or my dog.

But, let’s face facts. CP generally makes people slower. It is just part of living with CP. It shouldn’t be apologized for; and, good friends and loved ones will understand, if we can’t keep up or need to rest. It really isn’t a big deal. Just like, in the grand scheme of things, being called Molasses my 8th grade year was actually his problem, not mine.

It was these thoughts that ran through my head, more quickly than I can write them, when I saw this joke that someone posted on my FaceBook.

To all of us slower paced people with CP:

If you watched the short video from the last post, then you probably already know what I am going to write about. It has stuck with me all day. Mr. Ring said: “I have cerebral palsy; now, what is your problem?

Don’t you just wish you could say that to the people that stare, yank their kids away, or treat you like you have the intellect of a baby? But, I know that the quote means much more than what you say to a person that doesn’t understand CP.

Recognizing the Problem

We recognize our problem. We live with the symptoms every day. But, there are a lot of people that actually have far greater challenges; but, they are unable to see them. For example:

A drinking problem

Mentally ill

and sooooo much more

I am sure if we put our heads together and took some time, the list would be very long.

The point is really a simple one: People may judge us and our abilities by what they see. Yet, they may have far greater challenges that we cannot see.

Unfortunately, we rarely have the opportunity to point out this fact to the individuals that intersect with our lives. But, maybe thinking about it in a different perspective will help us be more understanding of those people that may not understand what it is like living with cerebral palsy.

Yesterday, I corresponded with a new parent that just found out their baby is living with cerebral palsy. I think this is the toughest time, because you know very little about a disability until it is thrust upon you, and you have to learn.

My heart and best wishes go out to this baby and the parents.

Today, I was reading Only the Manager. It’s so named to remind people that we are only the managers of our lives. God is in control.

I asked if I could repost what I read today on this blog:

Sheilded with His Favor

Mike and I are reading a Psalm a Day right now. One of the things I love about the Psalms is that no matter what your emotion, you will likely find it expressed there. It can really be a helpful guide for praying when you just can’t find the words.

I am praying for some friends who are facing very serious health challenges. It is such a helpless feeling to see someone you care about hurting. I literally woke up one day praying, but my words seemed too pitiful to appropriately cover the situation. I know that God’s work is not dependent on my words, but still, I searched to express my thoughts. Today I went back to Psalm 5:11-12.

I am sure there have been times I’ve read over those verses and just thought they sounded nice. Today, they really speak to me. I love picturing God spreading protection over my friends, shielding them with his favor.

I hope these words bring comfort and strength to people living with CP and their loved ones.

Today, I read an article that made me happy and mad all at the same time. It was about a little boy that was given zero chance of survival. Doctors told his mom that Bobby would be stillborn. Therefore, the best thing for her to do was to have an abortion at 20 weeks.

This is a picture of a baby at 20 weeks gestation. Yes, I said baby. It is not a fetus that isn’t living human being until it is born. I just don’t understand how anyone that has been pregnant, or any doctor that has dealt with pregnant women could possibly think otherwise. It make me so sad.

Bobby’s Future

When you click on the link and read the story about Bobby, you will see that he is a cute little baby boy, and very much alive. Yes. He has some challenges. Doctors believe he will probably have cerebral palsy. Only time will tell. Doctors also were sure that he would be stillborn.

Even if my mother had been given the option to abort me 51 years ago, had they known I would be living with cerebral palsy, I know that she would have told the doctors that it wasn’t an option. I was her baby, and no matter how I came out, she wasn’t going to love me any less than my older brother and sister.

My Soapbox

Yes. I got on my soapbox today. But, I know of one reader of this blog who’s mother was given that awful choice. She is glad to be here; she is so glad her mother loved her enough to give her life.

I will never understand how anyone can dismiss a baby as a “thing” until it is born. How can they feel it move in the womb and see it move on the ultrasound, and think it isn’t really living yet?

Even if Bobby does have CP, his parents are very glad that a doctor did what he could to give him a chance to live, rather than listening to the doctor that gave him up for dead.

I truly believe that God does not give his children more than they can handle. If you are living with cerebral palsy, have a child with cerebral palsy, or have been told your baby will have CP, it means that life will be a little more difficult. But, it doesn’t mean that life won’t be worth living.

You don’t have to know all of the answers today. Instead, take it one day at a time. My own mother always gives me the same advice, when I tend to worry about something:

Does worrying change anything? What if you worry about something that might happen, and it never does?

I am glad to be here. How about you?

Currently, I am writing a batch of articles about Lasik and vision problems, including lazy eye. As I was researching the subject, I realized that many people living with cerebral palsy suffer from this visual problem. It shouldn’t surprise me. After all, the eye is controlled by muscles, and the muscles receive/don’t receive messages from the brain, just like any other part of the body.

Of course, some cases are worse than others. For some people, it is barely noticable. Unless you look at them really close, you may not even notice. For example, I didn’t discover that my eyes don’t track well together until after I was in my 30′s. I was married to a guy in the military, and eye exams were free; so, I had my eyes checked along with my daughter. This particular doctor noticed the problem and gave me exercises to strengthen the lazier eye.

I didn’t realize until years later, when I saw another young eye doctor that this is a very common problem with individuals living with CP.

Correcting Lazy Eye

For some people, it will be hard, if not impossible to correct lazy eye. But, regardless of age, it is a good idea to talk with an opthalmalogist. Usually, the problem is very apparent in the first few months of life. In some cases, one eye totally wanders all over the place, while the other one does all of the work.

Like any other disability, the sooner treatment starts, the better. But, you don’t have to be a kid to seek help. Commonly, a patch is worn over the good eye, so the lazy one has to receive messages from the brain and try to work harder. In other cases, a doctor might recommend surgery to reposition the lazy eye, so that they look more like normal.

As for me, the problem is slight. I don’t really notice I even have a lazy eye, except that I tend to get headaches around my left eye, when I have been using them for two long. I am guessing it is because it is compensating for my right eye being a bit lazy.

Do you have a lazy eye? What treatment have you received, so that your eyes will work better together?