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. 

The Amish bakery

Front of a bakery. The entire front is made of doors and windows with individual panes. The trim is painted bright red. There is cutout of an Amish lady with white hair, black bonnet, blue dress, and black apron. She is holding a basket with a napkin and cookies. Below is a sign that reads, "Fresh Amish Pies and Cookies.

Do you ever simply need to get away from the daily routine? A simple outing? We visited a small town an hour from our home. It was not a thrilling, or even particularly successful visit. Then we found a small Amish bakery and deli. I’ll tell you about lunch, but first…

We left home, crossed Sugarloaf Mountain, the highest spot on the Florida peninsula at 312 feet above sea level, circumvented Lake Apopka, and arrived in Mt. Dora. A small town, noted for its quaint shops and eateries, it is usually bustling. It is also extremely hilly. We have gone before but never were able to get an accessible parking space. We arrived in town, passed a picturesque church, and spotted an old shelter house. Perhaps there would be parking there. Yes! In the back was a space. We ate our mid-morning snack as we watched a rousing game of pickle ball. Shopping time. We trudged up and down hills over a few blocks. There were some interesting antiques and some fun things for the garden. An old cooler resembling a Volkswagen Bus from the 1960's. It is blue with a white stripe and front. On the front is a peace sign. The lid is open, and the inside is painted black.We didn’t buy anything. Manual wheelchairs are not fond of steep hills and rough curb cuts, but we made it. What we didn’t find was a lunch place that struck our fancy. It was only noon, and we decided to explore in the car. If we didn’t find lunch other than a chain, we’d go home and have a protein shake. 

Aha! A small building with red windows and doors. “Amish Bakery and Deli.” There were bright red tables and chairs on the small porch and in the front lawn. I opted for the pastrami, and Sandy chose the chicken salad, both on freshly baked ciabatta bread. Lean pastrami piled on ciabatta bread. It is cut in half, and top center is a small cup of macaroni salad.Ten dollars each seemed a bit high until we learned this included the sandwich, a side of macaroni salad, a bag of healthy potato chips, a warm chocolate chip cookie, and our choice of beverage. Yum. Each lunch comes is a red box that makes its own carrying handle. We ate half of our sandwiches, our macaroni salads, spit a bag of chips, and ate the rest for dinner. 

Life on wheels. It has its challenges but can be very rewarding if we keep searching and enjoy the simple things. 

Thank you for stopping by and sharing a common day with Sandy and me. I enjoy your comments and questions. In the works are some pictures and descriptions of the repeat of an ill-fated vacation that was very successful this time, but I got overwhelmed with things at home and haven’t finished it yet. 

Picture descriptions: Main photo is the front of a bakery. The entire front is made of doors and windows with individual panes. The trim is painted bright red. There is cutout of an Amish lady with white hair, black bonnet, blue dress, and black apron. She is holding a basket with a napkin and cookies. Below is a sign that reads, “Fresh Amish Pies and Cookies.” Second picture is an old cooler resembling a Volkswagen Bus from the 1960’s. It is blue with a white stripe and front. On the front is a peace sign. The lid is open, and the inside is painted black. Third picture is of  lean pastrami on ciabatta bread. It is cut in half. Top center is a small cup of macaroni salad. 

Sun, rain, and bargains

George is in his wheelchair. Blond hair is a bit messed. He is holding a large shopping bag, 2 large black plastic bags, and a large green bag. He is wearing glasses, a blue shirt with white stripes, white shorts, and flip flops.Everyone loves a bargain, and everyone needs things. Thus arose the outlet mall. In Orlando there is a boulevard call International Drive. It runs from Universal Studios on the north to Sea World on the south.  But there is a spur going east from the north terminus, and that, my friends, is where you’ll find the largest outlet mall in the Southeast.

Sandy and I each needed some shoes. More correctly, she needed shoes and I needed flip flops (plus, of course, an article or two of clothing). The 6 o’clock alarm is silenced at 5:45 and we don’t get an early start. It’s 10:30 when we arrive. Big mistake. We got the last wheelchair accessible space, and it was in a lot at the far end from the shoes.

By 11:30 we had “bought 6 and got 3 free,” but not shoes, and we were at the food court. Breakfast had been skimpy, and there were seats. We opted for Panera. Sandy had salad. I had half a sandwich, a small salad, and a gallon of the ginger, hibiscus, whatever iced tea. Shoes? Well, there’s this shirt in a window and a clattery cart going by. “Go in there,” I called to Sandy over the noise.  Somehow  I managed to emerge with just the shirt. On to shoes.

“Does the buy on, get 60% off the second apply if we buy 4?” A bit later we emerged with the large green bag filled with plastic shoes and flip flops. Then it was on to real shoes for Sandy. One style she liked fit well, the other didn’t. Calling the trip a success, we began the trek back toward the car in the 94 degree (34 Celsius) summer sun.Light green background with large, red print reads, Outlet mall. Got 2 things I needed and 5 things I didn't. Think of the money I saved.

Behold, Nautica. “Can I look in there? We can cool down.” So cooled down and 6 more articles of clothing in the bag, we plunged into the rising heat. Why are outlet malls so hot or so cold? Halfway to the car we encountered Starbucks and a grande, iced green tea.

As we are clearing the heaviest of the metro traffic, there is lightning up ahead. By Lake County, we met the rain. Wow! A good thing happened, though. The rain removed the bugs the $13 car wash had fail to cut.

Before I put any of it away, several things are going to leave my closet. We spent the better part of today in there. At least it was air conditioned and dry.

Thank you for stopping by and joining us in the sun and rain. I love to read your comments.

Pictures: Main picture: George is in his wheelchair looking into a shopping bag. He is holding that bag, 2 large black, plastic bags, and a large green bag. His blond hair is messed. He is wearing glasses, a blue shirt with white stripes, white shorts, and flip flops. Smaller photo: Light green background with large, red print reading, “Outlet mall. Got 2 things I needed and 5 things I didn’t. Think of the money I saved.

 

Top ten things not to say to a wheelchair user – ever. And then some tips.

After I commented on my friend’s blog in regard to vision, she suggested I apply the topic to wheelchair users. I’ve had a lot of things said or done to me because of my ever-present wheelchair, and some of them should never be said. Maybe you are curious, so here are the top ten things never to say to a person who uses a wheelchair.

#10 Don’t talk to me standing up if you can sit down unless you are trying to intimidate me. It won’t work, but it will make me angry. Sure, if you are serving in a restaurant where the patron would normally be seated, that’s different.

#9 “Do you have a license for that thing?” Enough with the comments about a driver’s license or about speeding.  We have all heard it many times. Maybe even already today. Instead say what you would say to a person who is walking by, “Have a nice afternoon.”

#8 “You drive!?!” Yes, I drive, quite well in fact. For the most part it’s no one’s business if I drive, and most people assume I do. If, for example, your new neighbor is a wheelie you might inquire about driving, asking if he/she will explain or show you how they drive. Most of us love to demonstrate.

#7 “Can you walk?” Unless you are the TSA or the gate agent in an airport, it’s none of your business if I can walk. If I could walk I would. Granted there are some wheelies who can walk short distances. But whose business is it anyway?

#6 “My grandmother had one of those.” Oh, did she? Do I look as old as your grandmother? The implication is that I’m old and feeble like your grandmother. For the record, before writing this I did a seated aerobics session.

#5 “What’s wrong with you?” Oh, most of us do hate that one. Quite frankly, nothing. There is a reason we use a wheelchair, but that reason is often in the distant past. It might take only seconds to damage the spinal cord, and then it’s over. After the initial damage, nothing is wrong. I have a family and a good quality of life. I just do it sitting down. When you think about it, that’s not so different.

#4 “How long have you been in a wheelchair?” Let’s see, I’d say about 30 minutes. Did you mean, ” How long have you been a wheelchair user?” I might tell you and I might not, depending on the circumstances. Are we becoming friends? Then it’s a natural question. Otherwise, if it isn’t intruding, perhaps, “You seem experienced.”

#3 “Here, I’ll help.” Most times I don’t need or want help. I function fairly well. I am grateful when someone asks, “Do you need assistance with that?” “Would you like me to help you?” So many times well meaning souls intervene and create a bigger problem. Politeness and courtesy are excellent guides.

#2 “I’ll push you.” NO. Please don’t do this. If I’m struggling up a hill, having someone ask might be nice, but then I can show them how do do it safely. I have to share this with you. When I was a newbie I was in the restroom on a college campus in Richmond, IN. I had conducted that for which I’d come and was washing my hands. A man emerged, said “Here, this will help,” as he grabbed the handles of my chair, picked the back up, and spun me around before departing as quickly as he’d emerged. I was now stuck and had to go back where I’d been, take the wheels off, and put things back the way they needed to be. From my next chair to this day, they have all have had handles that stay down and can be pushed up if needed.

#1 Here we go with the most insensitive and degrading words in the life of a wheelchair user. “Bound” and “confined.” Just writing those words raises my blood pressure. “After his accident he is confined to a wheelchair.” Why am I confined to a wheelchair? Did I make my lovely wife mad, and she is making me sit in the corner? Convicts are confined in prison. My wheelchair is my liberator. It is how I move, how I cook dinner, how I travel. Then there is the word bound. “He is wheelchair bound.” What? How? With duct tape? With rope? Butcher’s twine? Maybe a garden hose? It is the wrong word and has a demeaning connotation. Instead please use phrases like “uses a wheelchair” or “is a wheelchair user.”

img_2896So here I am in the park. (Balancing my trunk with my elbow on the picnic table and my hand on the seat.) Not bound, not confined, not even in my wheelchair. It’s a miracle! Actually it is. My custom fit, titanium wheelchair is a miracle of progress, a prosthetic body that serves me well.

Tips: I’ve been ripping up well intentioned people to make a point and maybe let off a bit of steam. Let’s focus on the positive and how we can work this together.

Thus far we’ve put responsibility on you, not me. I have responsibility, as well. Let’s talk about the responsibility the wheelchair user has, and it is significant. People do not know what to expect. Perhaps they have overestimated someone’s ability and been embarrassed. First, we need to direct our own show. We need to push ourselves, if we can, into the restaurant and up to the greeter. When asked how many, proclaim the number with a smile and with confidence. People who use wheelchairs have differing abilities. Show yours off in a positive light. Then there is posture. No one looks good with bad posture. Do your best. The same goes for clothing and hair. A clean, stylish appearance says more than anything. There are any number of websites and blogs that show how women and men can look nice on wheels. And please don’t take yourself too seriously. In a restaurant a young couple very kindly moved their chairs and their baby’s high chair, so my chair would fit through. I thanked them profusely and said, “I’m pretty wide.”

Thank you so much for stopping by. I have a good life with a loving, supportive family. Wheelchair users have some frustrating limitations but make the most of what we can do. Please comment or ask questions. Again, thanks.

Picture shows George sitting at a picnic table in the park. His body is turned sideways with feet on the ground. Elbow is resting on the table, and opposite hand is on the bench for balance. Posture is good. His wheelchair is not in view.