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.

Cruising and books

Dark blue background with Vision of the Seas written in white.

Thank you all so much for your lively discussion about our stay in Barcelona. I am grateful for your Comments and Likes. Barcelona done, we took a cab to the port and boarded the Vision of the Seas for a 13 night cruise home. It was a form of R and R, which we termed Relax and Read. We had a balcony that we put to use with ebooks and audiobooks.

Cartagena and Coca-Cola

Large sailboats in the yacht harbor line the foreground. The ship is behind with a mountain in the far distance.On the first full day of the cruise we ported in Cartagena, which was quite different from Barcelona. They have created an incredibly nice, accessible pedestrian mall. The dock leads to a sidewalk with benches and some trees beside the yacht harbor. At the end is a crosswalk complete with smooth curb cuts, tactile warnings, and pedestrian Walk/Wait signals that chirped loudly during the Walk phase. The street itself is smooth and only two narrow lanes wide.

Across the street we were in the pedestrian mall. Long, wide, and paved with tiles. Yes, the entire thing is paved with ceramic tiles. We were hot and for no particular reason didn’t stop at a nice looking sidewalk cafe. A block later we found an American-themed, sidewalk eatery called the Cotton Grill. A hometown version of Johnny Rocket’s. Everything from appetizers to burgers to “unlimited Coca-Cola.” The proprietor told us they get locals for lunch and tourists from the ships. She stays busy all day. Local stores line both sides of the walkways with few of the American chains we found in Barcelona.

“The One-Armed Lady”

Day two put us in Malaga on Spain’s south coast. An intrepid walker might enjoy the trek into town, but a taxi seemed prudent. There was no real need to explain our destination. Everyone starts at the Cathedral of Malaga. The Renaissance cathedral was started in the early 1500’s, and construction was stopped in the late 1700’s. The designClose up of the Renaissance style cathedral. People are standing outside a huge door. The stone facade has sandstone columns beside the door and square stones above. The top is lined with stained glass windows. called for a large rectangular church with twin spires. For reasons which were lost long ago, the second spire was started but never completed. While the left rises majestically into the sky, the right has only the pillars on which the structure was to be built. It is affectionally termed “The One-Armed Lady.”

Barcelona was massaging, Cartagena smooth, and Malaga was downright rough. The ancient, square cobbles showed no mercy on my ride in the wheelchair. Relatively flat, we went slowly and loved the city. We needed to replenish our travel First Aid kit. Sandy found a local holistic pharmacy,  and we tried to explain that we needed Coban. She put us on a bit and then produced Coban by 3M. We truly enjoyed the time in her store. It is so much fun to travel and meet people. Around the world, sharing smiles and kindness is wonderful.

How many books?

The rest of the cruise involved relaxing on our balcony and reading. We were armed for the task with two dozen new ebooks and audiobooks plus what we already had on our Kindles. I lost count, but we read most. I love sea days, and a transatlantic cruise has lots of them.

Sandy and I travel light. We took one medium size suitcase, a carry-on size bag (we checked it, too), and a small backpack each. Mix and match, wash and wear, a small bag to the ship’s laundry. No tux for me, thank you. I had one, by the way, and gave it to charity. Meals were informal with care not to overindulge.

Azores and Nassau were no go’s

I don’t want to bash anybody, but I feel obligated to mention accessibility at two ports. The Azores are hilly. I was told not to expect wheelchair accessibility in Portugal. Steps and a steep hill greeted us, and we decided to stay on the ship. The view from our balcony was lovely, it rained, and we were glad we stayed onboard. Nassau was impossible with crumbling concrete, curb cuts that led to potholes, and a blocked sidewalk with no way to get my chair around. I have always had a soft spot for Nassau, and I hope they can get things repaired.

We arrived home fresh and relaxed. I had taken almost a month off from everything, it seems. It was time well spent, and I hope it can be done again. And I know you are wondering about this. Sandy and I both lost a bit of weight on the ship.

Thank you for stopping by and letting me share an amazing time that was fun and will help me immensely down the road. Comments are great, so let me know what you think or if you have questions.

Pictures: Main picture is a dark blue banner with Vision of the Seas written in white. Second picture is a yacht harbor with large sailboats in the foreground, our ship behind, and a mountain in the distance. Third picture is part of the cathedral. There is a large, wooden door with sandstone columns beside it, square stones above, and a row of stained glass windows near the top.

 

A safe port if you need it

Close up of Leprechaun on the sidewalk. He is wearing a blue hat with black band and large buckle, has huge, green eyes, a big smile, red beard, and green suit.

We all like to travel. Be if halfway around the world or to the next town, there is a bit of wanderlust in all of us. Most of us, anyway. Explore places we’ve not been, encounter new things, make friends. It’s all so grand.

And it can also be tiring. A few years ago Sandy and I took a cruise from Harwich to Boston. One of the stops was Cork, where our accessible tour drove us around a bit, twice past what they called the “insane asylum,” and dropped us at a woolen mill store. It was nice but not for 3 hours. It was a tiring day.

The next day we were in Dublin. Determined not to let this day slip away, we explored beautiful Trinity College and then boarded a hop on, hop off tour. Things went well until we finished the Guinness tour and had to push up a long hill of bricks and cobbles. Once at the top we waited for the tour trolley. And we waited. Finally a full trolly came along and said the one for us had broken down and they would be along in about 30 minutes. So we stood, I sat, on the corner with some other people in the windy cold.

Having finished the tour, we wanted to explore Grafton Street with its shops and flower markets and then finish in St. Steven’s Green. Problem… By now we are tired and hungry and in need of a rest stop. Where do we go? It’s all so pretty but nowhere to stop. Flower market with cut flowers. They are on rustic, wooden crates and look artful and creative. Small sign reads Celtic Cart.

Ah ha! Behold, McDonald’s! A small burger, some fries, a Diet Coke, and a restroom. We have visited McDonald’s around the world. We’ve had McLobster, McPizza, and Taiwan’s best seller, the QPC. The point is, it is great to explore. But fatigue, especially for someone with a chronic disease like MS or fibromyalgia, can intrude on the day. It is okay to stop, rest, and take advantage of a familiar, friendly port. Not everything has to be new and exciting for the day to be a success.

Thanks for stopping by. I always appreciate your comments. Which brings up another topic. I perceive we are having some mechanical issues with Popping Wheelies and your ability to Like or Comment. I hope these appear for you in both your subscription email and on the blog. If they don’t, please click the title of the particular blog post, a new one will appear, and you can Like or Comment. We are working on the problem, and two kind people from WordPress are helping. I apologize if things aren’t as we want, but we are working on it. Thank you for your patience.

Pictures: Top photo is large and features a leprechaun wearing a blue hat with a black band and large, silver buckle. He has large, green eyes and a red beard, and he is smiling brightly. Second photo is a small flower stand with cut flowers nicely displayed on rustic, wooden crates. There is a small sign reading Celtic Cart.

 

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.

 

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.

Ramblings on my paraversary

Converse1

New Converse were at the top of my Christmas wish list this year. Whilst my white ones remain pristine (remember they seldom even touch the ground), the blue ones are my absolute favorites. They are sun-faded and worn on the inside. I’ll pair the old ones with my old jeans!

Twenty-four years ago tomorrow came the dramatic words about never walking again – except they weren’t dramatic. In a room that I remember as quiet and private, the doctor simply explained. We talked of progress and wheelchairs and adapting as we go.

Change and adapt have been the bywords over the 24 years, and I see no end to that. We have moved, made new friends, helped some people, and have been helped by many we’ve met along the trail.

My world has been expanded so much after something that seemed so terrible. In the last few years there has been a tendency for people who have varying disabilities to become friends and work together for our common goals. Let’s keep that going.

Thanks to every one of you for your friendship, your support, and your kindness. Not just to me, but to each other. Another year will make a quarter century of living on wheels. I wonder what “adapt” will mean this year. I’ll let you know. Thank you again.

Picture: George’s feet in new blue and white Converse All-Star’s, loosely laced. They are on the footrest of his wheelchair. The pavement is brick.

Where’s the Follow button?

DSCN1183 Last evening I received a nice message from my friend, Sassy Wyatt who writes the wonderful blog Thinking Out Loud. She was trying to find the Follow button. I knew it must have been there at one time. Nope, not there. Only by accident did I discover how to access it. This had to be fixed. And fixed it is. I cleaned up the side panel, simplified it, and added a nice, easy to find Follow button. If you are new here, I invite you to try it out! Meanwhile,  here is the link to Thinking Out Loud. I think you will like it, and I suggest you check it out. Thinking Out Loud

Thank you for stopping by. I always welcome your comments. By the way, Sandy and I just returned from a cruise. More on that soon.

Small photo at the top is a purple oval against a black background. Actually it is a light fixture from a cruise ship.

 

 

 

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.