Directing our own show – take 2

This is a revised version of a post from earlier in the week. It did not seem to generate much enthusiasm, and I took it down. Several people have encouraged me to re-post it. Perhaps this time I will express myself better. Thanks to all!

Out and about

George is in his wheelchair, at home, with shopping bags from Skechers, Nautica and a brilliant green bag. He has blond hair, wire rimmed glasses with an orangish tine, a blue T-shirt with white stripes, and he has removed his shoes.
As I share some thoughts with you on a warm, Sunday afternoon, I am sitting on my lanai. In Florida that is a part of the house under roof but open and screened. It is quiet and peaceful. But we don’t live only at home. We go out, and we interact with other people.

Those of us with a visible disability, or our family and friends, know that people look at us. I’ve become used to looks and stares, but it took time. They are going to look. People will naturally look at anyone or anything unusual. What happens, though, when it comes time for us to interact with them?

Our audience is watching

Those of us who use wheelchairs, and I’ve learned white canes also, seem to come under some kind of scrutiny. I’ve read that people in service and retail are often, sadly, apprehensive. They don’t know what to expect or what to do. Hence, the Just Say Hi campaign.

As we approach someone, we become the director of our own personal play. Do we look friendly? Do we look clean? Do we look alert? It is to our benefit to put people at ease.

Some tips I’ve learned

  • Adaptive equipment needs to be kept clean. It is an extension of ourselves.
  • Bling is good. My wheelchair is natural titanium, a silver gray. When it’s clean, it looks spiffy. I added bright blue tires and translucent blue casters. A gentleman in Saint Lucia recently told me that the sun through my casters made them positively glow.
  • Dress for the occasion, and wear what works for us. In the first picture I’d been shopping. In every store we went in I was welcomed and treated nicely. Obviously, from the load of goodies. Clothes need to fit and colors coordinate.
  • Smile and say Hi. Just Say Hi goes both ways, though if we can’t see the person well, we might not want to intrude.

Two guys in wheelchairs

George is sitting on the balcony of a cruise ship taking a photo with a small camera. He has rimless glasses with a gray tint. He is wearing a bright green polo shirt.On a recent cruise, as people were starting to board the ship, I heard a greeter say on her radio, “There are two guys in wheelchairs down here. The guy going by me now looks like he can handle things nicely.” Sandy and I smiled.

Thank you for stopping by. I’d very much like to hear your thoughts on this and if I’ve been of any encouragement to you.

Picture descriptions: In the top photo George is in his chair, loaded with shopping bags. He has medium length blond hair, almost round wire glasses with reddish-orange lenses, a blue shirt with narrow, white stripes, white short pants, and has removed his shoes. In the second picture George is taking a photo from his ship cabin’s balcony with a small camera after boarding. He is sitting up straight and is wearing small, rimless glasses with a gray tint and a bright green polo shirt.

25 years later

George is stretched out on the sofa. He has blond hair and glasses with an orangish tint. He is wearing a black, Mickey and friends sweater with white snowflakes, black pants, black headphones, and he is barefooted.

At first I blamed it on the new shoes, the fall in the mall and the second fall later in the day. It didn’t seem right, though, as they were an exact replacement of the ones I loved. It was my introduction to MS. Later came the ice storm and a more serious fall. Finally after exhaustive tests with lots of E’s in their names and 24 vials of blood, we met with my neurologist.

There was no drama, no tension. He told us what we already knew. The MS is progressive, and there is too much spinal cord damage for you to walk again.

After a struggle, MS put an end to practicing optometry, though I never lost the love and try to stay current. I’ve been a disabled parent and a licensed swim official. I volunteered at the hospital where I edited the volunteers’ newsletter. Then one day I called the National MS Society for information and was soon a Peer Counselor.

So I’ve officially been rolling for 25 years. Somewhere along the way I learned Rock your disability! It was a life changer. If I have a message it would be that going through a progressive disease is, at times, agonizing. A few years ago my neurologist managed to sort out the MS from the injury. That explains things that are going on now, but it doesn’t change my resolve – or yours. I know my followers, and you are strong. And kind.

Thank you for your support, and this is probably the last you’ll hear of my Paraversary. Twenty-five is a big enough number, and I’ve long run out of fingers and toes. It’s time to quit counting and roll on to the next challenge.

Thank you for stopping by and for indulging me whilst I look on some emotional times. Thanks to Sandy and Cliff for their unwavering support and the sacrifices they have made to keep me mobile. I’m blessed more than what I could possibly deserve.

Photo: George is stretched out, on his side, on the sofa. He has blond hair and glasses with an orangish tint. He is wearing a black, Mickey and friends sweater, black pants, black headphones, and he is barefooted.

An afternoon conversation

George sitting on an outdoor sofa. Legs crossed, hands folded on one knee. Blond hair, brown aviator sunglasses, white sweater with blue stripes, blue pants, blue Converse shoes, and a small cross around the neck.

Please join me in a bit of conversation. What is on your mind? I’d like to hear from you. In the meantime, I’ll ramble.

Things have been chaotic and energy consuming. The elephant in my room is my wheelchair, to which you will notice I am not confined. Trust me, it’s just out of the picture frame. But it is fatigue that bothers me most, and I’m finally at the end of an MS exacerbation. Thank goodness.

I am getting a new writing desk! Since we moved two years ago, I have captained the small desk in the kitchen that should belong to Sandy. (The desk, not the kitchen. We’ll talk about the kitchen in an upcoming post.) It will be better for both of us, and I will have more opportunity to plan and write.

Have you had your eyes checked lately? This is an eye doc talking, and I’m reminding you to get it done. I had a very thorough, dilated exam last week. Glaucoma is something that needs to be watched for, as for most people it can be stopped or slowed. It is important to check the retinas and the optic nerves. Of course, there is the chart and “which is better, 3 or 4?.” By the way, it is not a test with correct answers, and they might look alike. I had a slight change in my glasses Rx. The doctor and I talked about my light sensitivity and how to manage it. She had some helpful ideas. So go – just do it, please.

It has been a rock and roll afternoon with the severe weather alerts going off every few minutes. We had planned to go to Epcot today, but the forecast called for severe storms, which we are getting as we speak. It feels like a hurricane with intense lightning and thunder. The flower and patio show is going on. We have a few days open, so maybe I can share a few pictures.

This has reached the end. There is only so much you want to hear. Thank you for stopping by. Step or roll out onto the lanai and join me on the outdoor sofa. There is a fridge in the garage stocked with whatever you’d like – and dark chocolate.

2 Hershey's Kisses with purple foil and tags that say "dark."

Top photo shows George sitting on an outdoor sofa. Blond hair, brown aviator sunglasses, white sweater with blue stripes, blue pants, blue Converse shoes, and a small cross around the neck. Legs crossed, hands folded on the knee. The bottom photo is 2 Hershey’s Kisses with purple wrappers indicating the dark chocolate.

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.

Patience – Thank You

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She waited; we waited. The beautiful tiger.We went to Animal Kingdom on Monday. It was wall to wall people. No doubt the park was at capacity. As usual, though, there are times when you can find a peaceful place away from the herd. Whilst the crowds pressed against the window, she kept her distance. She waited, and they lost patience and left.

Sandy and I quietly moved to the window and waited. There she was, looking at us from over the hill. Satisfied that she could patrol in peace, she moved into our viewing area. Satisfied that waiting was going to pay off, we remained quiet and still.

For several minutes she patrolled her territory near the window. More people came, and she quietly sauntered back over the hill. We knew she was there, but our private audience was over.

There are times I get hopelessly frustrated when I cannot get to something or see over obstacles or people. If I’m patient and work around the situation, often good things will happen. We all have limitations, some more obvious than others, but if we are patient and believe we can accomplish much.

Thank you for stopping by. I appreciate each of you. And thank you for your patience as I went too long without writing. I had an unwelcome guest sharing my body in the form of MS fatigue. I’m hoping it left and went back to wherever it came from in the first place.

Top photo shows a hill with a wooded area opening onto a clearing. The tiger is looking over the hill directly at us. The next two photos show the tiger pacing back and forth in front of us.

The dog ate my PT

I should say dogs. Meet Amelia and Fred. Normally they are so quiet and well behaved. I don’t know what got into them. They are a pair…like Sandy and me maybe. Will you look at those smug faces? And the lone weight. It’s all that left of my summer PT program.

My wonderful physical and occupational therapists had worked out a plan for the summer, since I am so limited on the number of visits. I worked hard all summer. I’d done so well and was all ready to show them my stuff. I laid it all out the night before. In the morning – nothing. Gone! The dogs had eaten my PT.

The therapists gave me a little quiz to see if I’d really done it. To my surprise I did better than I expected, which encouraged me to work harder. I hope to have 2 pools almost across the street very soon. And a gym.

Don’t give up. You are doing better than you think. Do you have a cheerleader? Someone to encourage you? You do now. To you and to myself, “Go out there and do it!” And don’t lay it on the table for the dogs to eat whilst you sleep. Thank you so much for stopping by. I invite you to please comment and/or follow. Amelia and Fred said to tell y’all, “Hi.”

Pictured are 2 small, stuffed dogs. They are light brown. Amelia is wearing her aviator hat whilst Fred is wearing a classic, knit ski toboggan. In Fred’s lap is one small free weight.