Getting personal with SCI

National Spinal Cord Injury Month

The original outline for what follows was planned as a two-part blog. I kept asking myself, “How much do they really want to read about this?” Like all good conversationalists, I answered myself. “Not that much.” If you have questions or comments, please leave them in Comments. Lots of questions will yield  lots of answers. Few questions, and I have more time to do whatever it is that consumes most of my day when I’m not looking.

My own thoughts on the subject

I am not going to sit here and tell you a bunch of facts and maybe get something wrong. What I shall do is explain from my own experiences, what I’ve learned from others I’ve known, and how I feel about things. This is from my perspective and from that view only.

A primer – it doesn’t work like you might have been told

When my grandson asked my why my legs don’t work right, I explained what we have all been told. When the brain wants something to happen, it sends a signal down a cord and tells a muscle to move. If you damage the cord, the signal doesn’t get through. He was happy with that (for now). Isn’t that the way we usually think of the spinal cord? We all know that signals go upward, as well, to tell the brain that the hand touched something hot, or the feet are in ice water.

What we don’t think about until it breaks, is that the brain not only sends signals to a muscle to contract, it also sends signals to relax. The normal position is tight. So if only that part gets interrupted, the muscles stay tight. Cut the cord entirely, and usually the muscles stay relaxed.  From the people with whom I’ve talked, it seems the people with tight muscles would prefer fully relaxed, and the people with relaxed muscles would prefer tight. I’m no exception.

SCI is classified by where the damage is on the spine. Cervical injuries result in quadriplegia. If the damage is very low in the cervical spine, the person will have arm function, but not fingers. Damage in the thoracic and lumbar areas result in paraplegia. The lower the lesion, the more trunk strength the person retains.

The tingling and pain factors

I experience constant tingling. A therapist who taught me to manage it explained that the brain has a place for everything. Every sensation sent to it goes to a specific place. When we damage the spinal cord, the nerve endings at the site of damage continue to be active but are sending stray electrical signals. The brain does not know where to put this and simply files it under “pain.” Yes, the pain is quite real. This is why you will find that people with spinal cord injury/spinal cord damage frequently meditate or use music imaging to control this static.

Pot-A-to; pot-ah-to

So what is the difference between spinal cord injury and spinal cord damage? None! Typically we think of SCI as from trauma and SCD as from a disease process. In fact, once the damage is done, no matter how, the result is the same. In recent years the two have become one.

Freedom on wheels

After SCI/SCD the wheelchair becomes a prosthetic body. It does what the lower body previously did. Many of us consider the terms “wheelchair bound” and “confined to a wheelchair” to be degrading and insulting. When people ask me how long I’ve been in a wheelchair, I will check the time and tell them the truth, “About 3 hours.”

There are 3 types of wheelchairs. Custom ultralight chairs are fit specifically for the user, even down to the precise distance the wheels are from the frame. These are made from titanium, carbon fiber (I want that someday), and aluminum alloy that is supposedly light.

Power wheelchairs come in a million sizes and prices. The inexpensive, basic chairs work for someone who uses it infrequently, maybe can walk a bit. They are not considered suitable for someone with SCI. Power chairs for a person with SCI are more durable, tend to be larger, and usually have high backs. Some can recline or go up and down over an 8-12 inch range.

Sadly, I must include a breed of wheelchair that I call the Chrome Clunker. My first wheelchair weighed in at 65 pounds. Sandy could not lift it, and I could barely propel it. Modern chrome clunkers are usually heavy gauge aluminum and weigh about 40 pounds. They do not allow the user to be independent.

Let’s get personal

Not only are SCI and SCD the same once the damage is done, they can be blended. With spinal lesions from a rare form of Multiple Sclerosis and some damage from bruising, I fit into both categories. Like many people, I don’t mind explaining “what happened,” but I don’t get into lengthy discussions. These things are not the finest of memories. I am a T10 incomplete paraplegic. The spinal cord is not fully cut. I have some movement and feel but nothing useful. I am not sensitive to hot but am intensely sensitive to cold. Vibration feels like Medieval torture.

I drive with hand controls. There is a lever to the left of the steering column. Push down to go, in to brake. Steering is with my dominant right hand. (All sorts of driving aids are available, and even quadriplegics can drive.) Our home is Universal Design, fully accessible. Universal Design is designing something so that most people can use it without having to adapt it later. There are no steps, wide doors, there is a roll-in shower, lowered light switches, raised outlets, a pantry cabinet with roll-out shelves, and the microwave built into a lower cabinet. Floors are wood or tile, no carpet. I’m blessed to have this, as most people never have the opportunity.

Thank you for stopping by. Life on wheels is fine, just different. Was this helpful to maybe understand a friend or coworker? Questions? As I said before, I’m open to about any question, but be prepared that I might answer it.

Photos: Main photo shows George in his wheelchair beside a red, British mailbox. His blond hair is windblown. He has glasses, a red rain jacket, half-fingered gloves, and jeans.  Second photo has George in a custom, titanium wheelchair. The chair is natural finish titanium, wheels that resemble bicycle wheels, and bright blue tires. He is wearing dark sunglasses, a green and white t-shirt, and dark pants. He is eating lunch outside on a deck.   Third photo shows George’s feet on the footrest. He is wearing blue and white Converse shoes.