The little girl, of a dear friend, has cerebral palsy. Like me, she suffered a traumatic brain injury. But, her disability is far more life changing, even life-threatening at times. She cannot eat regular food, because she cannot chew or swallow properly. She cannot talk, because she doesn't have the muscle control necessary to use her tongue. Yet, she has a light in her eyes that tells me she is aware of her world, knows she is loved, and still finds joy and laughter in life.
Yet, I bet part of her wants to scream, "Please understand me!"
Those of you that know me are aware that I am articulate, even too much so, at times. I have no trouble speaking my mind. Yet, I have had individuals treat me as if I am a child, be condescending, and sometimes downright rude or mean.
I bring this up, because I want the people I know, and care about, to please understand me.
Today was the first Sunday in at least a month that I have been able to go to church. It was a wonderful morning. But, it got me to thinking about how life has changed for me over the years. One year, I got an award for perfect Sunday school attendance. I can remember, as an adult, scraping the snow off my car, so I could go to church.
Those days are gone, and so much more. I am not quite ready for the rest home, yet. But, just in the past few years, my life has changed so much, and not for the better. I am not complaining. But, I do want you to understand.
First of all, having spastic muscles has never been a picnic. In fact, it has always been a pain in the butt! Now, it is just a pain. If I go out in the cold, whether it is snowy or not, my legs become so stiff they will not bend. If you are strong enough to stuff me in a car on those days, you will probably have to break me to do it. Also, if I manage to get out with help, the person assisting me is liable to freeze in the time it takes me to get in/out of the car. So, even a drop in temperature can keep me home.
Then, there is the swelling. At first, it is just enough to freak out my mom and sister. But, if I sit too long, without putting my feet up, my legs start to hurt. Oddly enough, my hips usually start to hurt first. So, I can't sit in the chair all day, like I used to. I spend 90% of my days with my feet up, and sometimes elevated above my heart. It also means that I will not answer the door, unless I know you are coming.
If the cold or swelling doesn't get me, the arthritis does. A couple years ago, I was diagnosed with rapid onset aging. My heart and lungs are fine, but my bones are older than dirt. If the weather is about to change, I hurt. In fact, sometimes I hurt so much I take Tylenol with codeine. Then, I top that off with a prescription dose of Aleve. I don't do this often, as it does wonders for my gut, if I am not careful. But, when I do, it is pretty much "sweet dreams". If I am awake, I have been told I have a tendency to slur my words or talk slower. ???
Having bones older than dirt also means that I am more breakable. So, that is why I don't work anymore, even though I seem like I should still be able to, on a good day. I don't take chances I used to, getting in/out of the car, when it is slick or I am having a difficult day.
I used to go to church Sunday morning and evening. I know those that feel that if you aren't there when the doors are open, your priorities are messed up; and, I am very uncomfortable knowing they feel that way. Yes, even in the summer, I rarely go to church at night. I just don't seem to have the energy to get out, and go through all the transitioning twice in one day. When I have no choice, it is exhausting! The next day, I am pretty much recuperating.
Last, but not least, I have never been a really good driver. Using hand controls reduces reaction time. Couple that with how my brain processes stressful situations, and slowing with age, both my children would prefer I no longer drive. I don't need them to disable the car. I handed over the keys. (I can't drive when medicated for sure.) So, unless it is an absolute emergency, I will not drive. In fact, when Steven goes to college, the car goes with him. I will depend on the senior bus to get me to doctor's appointments and such. (I have already started that.) Of course, they do not run on the weekend. So, church will definitely become a rare treat.
So, if you don't see me out and about, especially at church, please understand me.