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.

Replanting and writing again

Portrait framed photo with newly planted, but large, crotons along the edge of a brick patio with a white, Greek type statue at the far end.I’ve been planting again, and hopefully writing will happen, too. In the post Winter solstice and the patio  I showed some crotons and dusty millers that we put out before Christmas to replace those that died in Hurricane Irma. All except the dusty miller froze out during the record cold that followed.

With the arrival of spring, we are not so pressed for time and have planted the beginnings of a hedge of rosemary. This friendly herb will grow tall, likes the sun, and be tolerant when I don’t get it watered. I hope.Foreground is a brick patio, raised above the lawn, that has planters with hand high rosemary plants. Receeding is an ornamental grass, and at the end a dusty miller plant.

In the front, Sandy and I have been trimming up a potted bush whose name I haven’t a clue. It is green with red blooms and flourishes in Central Florida. In front of it I replaced two red pentas that also died in the freeze. Tall, ornamental green plant with red blossoms in the shape of small trumpets hanging down. Very bottom shows 2 small pentas.

Writing again… I have a “new” writing table. Finding one hasn’t been quick, though I’ve wanted one for some time. My legs just barely fit under it, but how much clearance do I need? They fit. And the table fits the style of our home. It even fit the budget.

So things are happening slowly and, to be inaccurate, surely. Thank you for stopping by. I am always grateful that you did and love for you to make comments.

Off white, antique distressed table. It has 43 shallow drawers and turned wooden legs. On the table are a green desk lamp, writing pad with sharpie, reading glasses, laptop computer, large Donald Duck mug, antique looking magnifying glass, a coaster, and a tray for mail.

Here’s a little smile for those who managed to read this far. It’s a bloom on our magnolia tree, which is just off the patio in the back.

Dark green magnolia leaves surround a large, white bloom.

Top photo: Raised, brick patio with planters along the edge and a Greek style, white statue in the background. Planters contain new crotons, a tall grass, and some dusty millers. Second photo shows the same planters in close up with new, hand high rosemary plants, an ornamental grass, and a dusty miller that survived the freeze. Third photo is a large plant with long green leaves and red, trumpet-like blooms hanging down with 2 small pentas at the bottom. Fourth photo is a writing table, well worn off-white color, turned wooden legs, and 3 drawers. On the table are a writing lamp with green glass shade, writing tablet with Sharpie, reading glasses, laptop computer, large Donald Duck mug, antique style magnifying glass, and a tray for mail. 

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.

Orange hat and sunglasses

George is sitting in front of lush vegetation with a waterfall. He is sidewalk in the wheelchair with the front foot on the ground. Wearing an orange hat, bright green shirt, jeans shorts, and flip flops.

It has been awhile, and I apologize. Things have not gone exactly smoothly. After reacting to a new medicine in October, one side effect led to another as I felt like I was on a downward spiral. My multiple sclerosis reared its ugly head, as well. A few weeks ago my doctor and I agreed that it was time to stop all new things and let my body clear itself. It has been slow, but I think we see progress.

I had hoped to be back in the gym and on my bike, but stretching and light exercise are as far as I’ve gotten so far. With spring suddenly here (remember I’m in Florida) I feel better, and the pool will soon be ready. Next week I’m going to get some sun, fresh air, and relaxation. I’ll have new books on my Kindle and audiobooks on my phone. I’m not going to stress over anything. This is it. Do it, George.

Sometimes things go badly. The point is to try and keep our heads clear and our spirits up. Sandy has been my guiding angel. Several of you have done much to help, too. Things are looking better, thank you.

By the way, I realize that clothing combination is not exactly “correct.” Sometimes it is good to simply have fun and disregard what someone else might think. There is a fun person inside all of us just wanting to be given the chance.

And thanks for stopping by. I am deeply grateful for the opportunity to share with you. I appreciate your comments, too.

Picture shows George in front of lush foliage with a waterfall. He is wearing an orange hat, brown sunglasses, bright green shirt, jeans shorts, and flip flops. He is sideways in his wheelchair with one foot forward and on the ground.

Captain, camera, and coloring

IMG_0826If you were to ask me my favorite villain I’d tell you it’s a toss up between Auric Goldfinger and the delightful Captain Hook. (Delightful, George? Okay, maybe not all that delightful.) I enjoy his antics and his frustrations.

I’m creative by nature, and that has been expressed with photography and writing. This summer I saw some adult coloring. “Can I do that?” I watched a 10 minute video on YouTube and was hooked, pun intended. Off to the crafts store! I started with 12 colors and soon added over 100 more.

I learned that in adult coloring there are no rules. Color what you like in any colors you like. Let your imagination guide you. With that in mind I chose my first project, a camera. But not just any camera, a Flower Power camera!fullsizeoutput_17afWith my strongest reading glasses and my pencils I enter a zone of concentration free of outside stresses. Time passes unnoticed. One day I almost forgot to eat lunch.

Since nobody’s perfect and there aren’t any rules, there is no penalty for the mistake I made in the Captain Hook picture. If you look between his legs, you’ll notice a small area of ocean I forgot to color. Oops. I noticed it after getting this ready to share. It has now been corrected, by the way.

I like to see how others share their lives and experiences. I love to read and listen to audiobooks, see your pictures on Instagram, and read your blogs. Thank you for stopping by and indulging me whilst I ramble about villains and psychedelic cameras. However you express yourself, enjoy your time and know that others enjoy your work.

Media: Both pictures feature adult coloring. The top is of Disney’s Captain Hook with a bit of liberty taken with the colors. He has flowing blond hair, a red and purple hat, a red coat with purple and green trim. He is on board a ship with sword drawn and pointing downwards. The second picture is a 35mm camera in shades of purple, blue, orange, peach, and yellow. It has lavender eyes and an inverted heart shaped nose in orange. It has flowers and fringe of orange, yellow, and teal.