Getting personal with SCI

George is 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. 

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. 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.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. George's feet on the footrest. He is wearing blue and white Converse shoes. 

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. 

27 thoughts on “Getting personal with SCI

  1. Thank you for sharing this with us George, I have learnt a lot from this blog post and understand more what your daily life is like. I have to say, I love the picture of you by the red post box! X

    Liked by 1 person

  2. Well now my curiosity has been satisfied. I had wondered about your spinal injury, didn’t know it could happen from MS.
    We also have organised house in a similar fashion as we always have to think I may have to use a chair more often.

    Liked by 1 person

    1. The SCI is from both MS lesions on the spinal cord and from bruising of the spinal cord in a fall. It was difficult to sort out the two, but the result is the same.
      There were all these MS symptoms and positive tests, but the paralysis had all the trappings of an injury. MRI’s were new, only 2 in our entire state. We were eventually able to confirm all this. Thanks for your inquiry! Does this explain things?

      Like

  3. Thanks so much for sharing this and enlightening me George. It’s wonderful that your home is Universal Design. As we do things around the house, we’ve been keeping some of the things in mind that you mentioned. You’ve given me a few other things to be mindful of now. Thank you. Hope you and Sandy are doing well. Blessings to you!

    Liked by 1 person

  4. Hey George, Thank you for sharing your personal story on SCI. The way you answered Cameron is brilliant! This was so easily digestible and gives the reader a small sense of what it’s like to live with SCI. When you talked about the tingling sensation it brought to mind times when I have this but of course it’s not a constant thing. The brain is so fascinating yet we seldom stop to think about how it functions and sustains us.

    Liked by 1 person

  5. Interesting read! Your response to the question, ‘how long have you been in a wheelchair?’ made me chuckle. It also made me wonder what your thoughts would be if someone asked in a different way and which way would be best… maybe, ‘when did you begin using a wheelchair?’, for example?

    Liked by 1 person

  6. The term “in a wheelchair” is not as damaging as words like confined and bound. What the public hears is what they think, which is why some of us object. If they were thinking along the term you suggest, everyone would be better off. Thanks!

    Like

  7. Your sense of humour always brings a smile to my face, George. I think you’ve done brilliantly in outlining what SCI is and what you experience with it. It’s interesting to note the merging use of injury and damage, that makes sense in simplifying things. A 65lbs wheelchair? That is insane! It puts my struggles with the cold into perspective when I think how you must experience the cold. I’ll keep my question brief so you can go about your day – I have chronic pain and nerve damage yet it’s a fraction of what you have to deal with, so I genuinely do take my metaphorical hat off to you. Have you found any/many ways to help you with managing or distraction from the pain and frustrations with constant tingling?
    Caz xx

    Liked by 1 person

    1. Thank you for the compliments. I wouldn’t say my tingling is necessarily more than yours, Caz. Sometimes it drives me to distraction, which is a short drive anyway. I try to do deep breathing and music imaging. New Age music (like Steven Halpern or David Arkenstone, even Enya) softly as I imaging my feet in the hot sand of a beach. “Of course they are hot, G, they are supposed to be hot on this nice sand.” Or a by fire truck cruising up and the firefighters spraying cool water on them. Or often, just a quiet cabin in the woods, or reading a book beside a nice, crisp stream.
      I like an English product called Elemis Instant Refreshing Gel. It is $55/tube in the US but occasionally is buy 2 get 1 free. I don’t know anyone else who had tried it, though.
      Have I answered your question? Thanks!

      Liked by 1 person

  8. Distraction is a mere hop & a skip for me too 😂 I do like a bit of Enya, and it’s interesting how you do the imagining of situations where those kinds of sensations would be normal or expected, I’ve never thought of doing anything like that. Great tip on the Elemis, that’s quite a popular brand here. And pricey, which is probably why I only own one product of there’s, a free sample I got at a store the other year 😉I checked the price to see if there was a UK site that would ship free to the US to save you some money but it would work out about the same (or more for sites that charge for int’l shipping) as you currently pay.

    Thank you for answering my question. I’m a nosy bugger! I hope the week ahead treats you kindly, George.
    Caz x

    Liked by 1 person

  9. You are quite the fashion statement, George!! Just loving those sunglasses and attitude you have! Believe me I am so grateful I have the use of my legs and that is one very good reason why I keep going to the gym. You truly are an inspiration!!

    Liked by 1 person

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