Living with Cerebral Palsy

A good sense of humor is essential to living with cerebral palsy to the best of your ability. If you can laugh at yourself, people will learn to laugh with you and not at you.

From as early as I can remember, I have been answering questions about living with cerebral palsy. Of course, the most common question is: Why can’t you walk? (or some variation)

It has never bothered me to get questioned or to give answers. I would rather people ask than treat me like I have a contagious disease or should not be allowed out in public. (also experienced)

I have been poked and pinched by people who wanted to know if I could feel that! My first mental reaction is to poke or pinch them back, and ask them the same question!

Since starting this blog, I welcome questions by readers. But, I am very careful to state that I can only answer as it relates to me. As a brain injury, the effects of CP are different with every individual. I try to be as thorough and honest as possible, even if it is something they may not want to hear, because they may learn from my experiences to help themselves or someone else.

But, I must admit, I got a question today that I do not recall ever being asked in the past:

What do you like and dislike about living with cerebral palsy?

I must say, I was taken aback at first. I am sure this individual just posed a broad question, in order to get as much information as I was willing to impart. But, unless I wanted to write a book, and get into specifics, how can I answer that?

I needed to call my mother about a couple of other things, (I usually talk to her at least once a day) so I told her about the question. What could I possibly like about living with cerebral palsy? Her answer: you are alive.

The question has been in the back of my mind all day. It is such a broad question. So, what would I say, if I gave an equally broad answer?

What do I like about living with cerebral palsy? Absolutely NOTHING!

What do I dislike about living with cerebral palsy? Absolutely EVERYTHING!

BUT . . .!

I am also reminded of that Bible verse that I posted on Sunday: Romans 8:28

New International Version (NIV)
28 And we know that in all things God works for the good of those who love him, who[a] have been called according to his purpose.

Even though I do not “like” living with cerebral palsy, good things have come from it:

I met the father of my absolutely wonderful children.

I have met kind and caring people and been a recipient of those attributes.

I would like to think I appreciate my family more, because of what they have gone through, and sacrificed, as part of being related to an individual with special needs.

I hope my experiences, both good and bad, help or encourage others who also have physical challenges.

I have even more reason to be glad that Jesus is my savior, because I know in heaven I will no longer have the challenges or the discomforts of living with cerebral palsy.

No, I do not like living with cerebral palsy. But, I also believe that GOD NEVER makes MISTAKES. So, if I am to live with cerebral palsy, God has a reason. Therefore, I should live my life, as is, to the very best of my ability.

I am so grateful for my church family, my family, and friends. Living with cerebral palsy, I often have trouble asking for help, even when I need it. I would rather do it myself.

But, I must say I do feel loved, when I think about the hands that helped build my house, fix my car, fix my dishwasher, repair water leaks, send anonymous gifts in the mail, run errands when I cannot, and so much more.

Since I came home as a single parent, and sick, 14 years ago, I have been on the receiving end of soooooooooooo many blessings.

I definitely feel loved and cared for. My only hope is that I can somehow pay it forward, and be there for someone else, when they need it.

My kids and I are truly blessed.

Do you take the time to reflect on the people and events that have blessed your life over the years?

Nine days ago, I finally got serious about eating properly and losing weight. Since I sat down in the wheelchair nine years ago, food has been both my friend and enemy. I have no problem eating. It is my snacking and portion sizes that have gotten me in trouble.

But, when I was emailing an acquaintance I have made, thanks to this site, she was so encouraging. However, she has the opposite problem! She is too skinny and has trouble consuming enough nutrients and calories.

Some overweight people like me may say they wish they had that problem. But, really you don’t. Recently, I have had several occasions to learn, at least in part, what it must be like to have the inability to eat properly. Instead of a time of fellowship with friends or a treat for the taste buds, eating becomes a necessary risk.

Even a drink of water can cause some people with CP to choke. Like many bodily functions, it takes muscles to swallow. Most of us take that for granted, including me. But, if CP has compromised those muscles, it can be very frustrating, or even dangerous to eat. (In the worst cases, doctors may decide to insert a feeding tube.) I can’t imagine NEVER being able to taste food, enjoy Thanksgiving or Christmas dinners, etc.

I think I have trouble getting rid of the weight I have gained, because I overindulged. It makes me even more ashamed to take the ability to eat for granted.

Reflux

Although I am overweight, I do have a serious problem of reflux, presumably associated with my crohns disease and a hiatal hernia, not cerebral palsy. The valve or flap between my esophagus and my stomach is weak and does not seal properly. Stomach acids and food in the process of digestion can back up into my esophagus and it BURNS!

Even if I don’t eat a thing, the stomach acids can escape and do a number on my esophagus. If I eat too much, it just puts more pressure on the valve. I can’t even eat bland, soft foods without pain. I have to take medication every morning and wait at least 30-60 minutes before eating. Left untreated, the reflux can cause esophageal cancer. Since a person cannot live without that particular part, the meds are essential.

Even with the meds, I still have to be careful of what I eat- even though I am overweight. Spicy or greasy foods get past the medicine. Because of the crohns, I cannot ever drink milk, without paying a price. Even if I could, it would still cause serious pain, if not for the medicine. Even water does not calm the pain.

I have learned to live with my acid reflux. But, the meds can cause polyps, but so can the crohns, so I do the dreaded upper and lower gastro-intestinal checkups, so they doc can remove them and check for other problems.

But, I have NEVER experienced the reflux associated with cerebral palsy.

Personally speaking, my muscles often do their own thing. Especially if I get nervous, upset, or excited, my legs have a life of their own. So, it stands to reason that if the muscles that control the ability to swallow are adversely affected, they can also cause food to go the wrong way, which can cause reflux, choking, or even vomiting – to put it bluntly.

So, here I was writing to my new friend, worrying about my weight gain and having to change my eating habits, and she would probably give anything to be able to eat properly. It made me ashamed of my weakness. On the other hand, it also helps my resolve to get healthier. I have no excuse!

See, even many of us living with cerebral palsy tend to take our abilities for granted. We also forget to be thankful for those abilities we do have, no matter how small or big.

I hope I am more thankful in the future. How about you?

Yesterday, when my son got home from school, he brought me the mail. Most days, it is either junk or bills. Sometimes, I will order something like the bed garters; but, I wasn’t expecting anything more than the usual boring stuff meant for file 13.

To my surprise, he handed me a thin white package. Not being my birthday, or any other special ocassion, I double-checked the address to make sure there wasn’t a delivery error. It was for me! Next, I checked the return address to see who had sent me what felt like a book. It was from the UK- Air Mail.

Now this really was unexpected! It took me a couple of minutes to realize that I WAS expecting this package!

A reader on my website had ask me to read and review a book. He sent it before it was actually for sale! For me, an avid reader, this is awesome! I was selected to read this book, before the general public, and it was free!

(If you click on the book, you can pre-order it.

My Rollercoaster Life with Cerebral Palsy by Kathleen Lennon was a very interesting book. It’s Kathleen’s very frank account of the ups and downs she has experienced in her 40+ years. She tells the very good and the very bad aspects of living with cerebral palsy. Yet, she NEVER sounds whiny or like she is expecting pity.

Kathleen also doesn’t hold anything back about her physical and learning disabilities. If you want cerebral palsy sugar-coated, this is not the book for you; but, if you want to truly understand the blessings and the curses of living with severe CP, then take a ride on Kathleen’s rollercoaster.

I found this book both touching and sad at the same time. I feel blessed with my abilities; and, I feel sad that Kathleen has had such profound challenges. Yet, I can also tell what a positive impact her perseverance and overall positive personality have had on family, friends, and caregivers.

So, grab a cup or coffee or tea, a snack or two, and find a comfy chair. You might even want a box of tissues handy. But, I guarantee you will be counting your blessings, before you put this book down. I know Kathleen does.

Kathy, if you read this blog, thank you for sharing your life with me and other readers. May God bless you. Your book has blessed me, and will bless others, since you are graciously donating all royalties to the Chestnut Tree Children’s Hospital in West Sussex.