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. 

Better times

It is an old photo that I’d found, taken in the 1950’s in London. This reminds me of a quieter time, people feeling safe. It also reminds me of a time in my life when I felt vulnerable, criticized. There is no utopia, neither now nor in the past. It is a reminder to accept our blessings and know that we have a future as individuals and together.

To those of you in the cold and snow, please continue to be vigilant and safe. I understand and care.

Thank you for reading as I ramble through life on wheels. As you can see, it’s not all about wheels, but more about life.

Picture is an old black and white street scene taken on a bridge in London. There are only a few people, walking on a snow packed sidewalk. There is a black car piled high with snow and a double decker bus in the background.

Princess Diana’s gowns

FullSizeRender

With time in London limited, we had a short list of three things we wanted to see. Diana: Her Fashion Story was one of them. The plan had it that if we got a nice day we’d do Kensington Garden and the gown exhibit. 62 degrees with sun, in London, in March is a nice day! We walked (rolled if you please) from our hIMG_0442otel to Kensington Palace and arrived a bit before the exhibit opened. Once inside, the gentleman who sold us our ticket told us there was no queue for the gown exhibit, but lines would be long soon. He said we could see the exhibit and then do the palace tour.

(Please know that what I am describing is from memory and might not be precisely accurate.) The story begins with a young Lady Diana Spencer who suddenly finds herself about to be wed to the Prince of Wales. This was not something she had ever thought about, and she had no knowledge of royal gowns. She knew the fashion of well dressed young ladies, but this? IMG_0415

At first it was hard for both Diana and her designers to determine a style. What looked good, was befitting a young lady, and was something with which she was comfortable? Sketches we made showing her in prospective designs. She was not hard to please but did want to maintain her sense of self.

As Princess Diana grew more comfortable in her role she sought the counsel of several designers. Several commented that she was easy to work with, and over time began to offer direction in what she wanted. She was the first royalty to wear formal pants, a concept and basic design she did herself.

IMG_0413The gowns changed with Diana. As she became a sophisticated young lady her gowns became more formal. There was, however, something elegantly simple about them. The gowns never overshadowed the lady. Her popularity was immense, and people became fascinated with all aspects of her life.

Kensington Palace is home to both William and Harry. The exhibit is a beautiful tribute to a lovely lady, and more importantly, their mother.

Thanks for continuing our journey with us. By the time Sandy and I added another transoceanic flight and arrived home late in the evening, we were tired beyond words. MS fatigue reared its ugly head, and I’m a bit behind. Your patience and words of encouragement are always appreciated!

Images: Top image shows Princess Diana in a casual pose with her chin resting on folded hands. Then a display with mirrors to show all angles of the beautiful gowns and one emerald green gown. In the text is an image of the statue of Queen Victoria in front of Kensington Palace with reflections, trees, and a crystal blue sky. The next image is a pencil sketch that features Diana in a red gown with a drawing of the fabric along side. The final image is the famous Harper’s Bazaar cover with Diana in a long, black gown.

Around the World in 27 Days

fullsizeoutput_122a
Image is the poster for the movie Around the World in 80 Days, which starred David Niven.

In 1873 Phileas Fogg went around the world in 80 days – in a book. Please join Sandy and me as we attempt to go around the world in 27 days.

We’ll go first class, and we’ll go in steerage. Cars, airplanes, high speed trains, local trains. And did I mention airplanes?

The adventure begins in Florida – near Clermont. We’ll travel by hired car to Orlando where we’ll board Delta for a flight to Seattle. Pikes Market. The Space Needle.

Then we fly EVA Air to Taipei, Taiwan. In this amazing city we will board the High Speed Rail and travel 186 mph to the beautiful city of Kaohsiung. 

After about 2 weeks in Kaohsiung please join us as we fly to Hong Kong on Dragon Air. In Hong Kong. we will join Dragon’s parent company, Cathay Pacific, and go non-stop to London.

Ah, London. As Roger Miller described it, “Westminster Abby, the Tower of Big Ben, the rosy red cheeks of the little children.” We’ll explore in the city with which we fell in love 5 years ago.

And finally, we’ll gather up all our stuff and join Norwegian Air’s service to Orlando. And a car back to Clermont.

It’s going to be fun, and I’ll try to write frequently with some pictures as we go. And again, special thanks to friends Mike, Tamika, and Winston the bull dog for house sitting. Monday is almost here! Let’s roll!