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.

The real hero

I asked if you’d wondered about someone you see or someone you know’s life on wheels and said, “You are about to find out.” For the most part, as I’m sure you’ve noticed, the wheelchair is more evident than are actual changes in our lives, which is good. But there is more, and today we are going to shift our focus to Sandy.

When we travel, things fall for Sandy to do. Let’s look at our arrival in Seattle, the airplane, and the airport in Taipei as examples of how the caregiver is the actual hero.

We are on the ground in Seattle. Sandy has pulled the 44 pound suitcase through the airport, across the cold, damp parking garage, and onto the train. $1 per person into downtown. Not a bargain; take a taxi. Downtown it’s off the train, through the station, onto the street and 3 blocks before we give up and find a taxi stand. (Me? I’m sitting in a custom chair that weighs 19 pounds and rolls nicely.)

Behold the Toyota Prius. I digress, but I want to say that I like small cars and would drive a rear engine Porsche if I could afford it. The Prius is fine for a businessperson who tosses a small suitcase in the back and carries his/her laptop in the back seat. For a real suitcase, 2 passengers, and my ever present wheelchair, the Prius is a rolling nightmare. Toss in a taxi driver who speaks limited English and inherently works fast. Sandy is standing in the cold, wheels in the street, turning the frame every possible way, turning the suitcase, turning them at once, and still has to fit the wheels in.

Now we’re at the airport counter heading for Taipei. Sandy does the talking because the counter is above her but somewhere in the sky for me. The suitcase is checked, and she is free – not exactly. Whilst airport personnel get me strapped onto the refrigerator dolly and hauled onto the plane, Sandy is behind explaining how the wheelchair folds the back but not the seat. She gets the cushion and both backpacks.

Now we are in Taipei and for the first time we encounter a truly rude man, probably the only one in all of Asia. It is his job to push me on my ball bearing wheels whilst Sandy lugs the suitcase. Faster and faster and Sandy is running half a block behind. I grab the hand rims and grind the chair to a stop, telling him we wait for the lady. When she, panting by now, is almost to us, he starts again, and I grab the rims again. And so it goes until we finally reach the taxi stand. Are we rid of him? Do you think that would make this enough? Well, it’s not enough, and we weren’t rid of him. The taxi is a Toyota of some design that looks like a Corolla station wagon. I’m in the car, and there is room for the suitcase and the chair in the back and Sandy on the backseat with me. But, no! The aforementioned gentleman insists on folding the wheelchair, the same one that doesn’t fold. He grabs it and tries folding the rigid, titanium frame whilst leaving the folding back open. Finally Sandy takes over, tells him to go away, and the taxi driver nicely assists her in lifting it in. Away to the Taiwan High Speed Rail, where all is fine except Sandy is tired and our suitcase now feels like 16 tons.

Now we are “home” and outside playing with our little grandson. I remark this is one of the best days of our lives…just before a very tired Sandy trips and falls. She is bruised and sore, not to mention the deep scratches on her new sunglasses. THIS, MY 33C880E1-CBB7-4A1B-B7AF-D11EFC5F05F5.JPGFRIENDS, IS REAL LIFE FOR OUR CAREGIVERS. I OWE EVERYTHING TO SANDY.

We had lightened the load this trip. One suitcase instead of two. Smaller backpacks, less crowded. Better connections. Stops in Seattle and London to rest and relax midway.  In the next day or two we will go Carrefour and look for a smaller suitcase. The clothes can stay and be donated and some shipped home. The wheelchair rider needs to be doing a better job of taking care of the precious caregiver.

Sorry this is so long. There is so much to say for our family and friends. When we get home folks will say how awesome or inspiring I was to go around the world in 27 days. Without Sandy I’d likely have been lost in the luggage compartment leaving Orlando. You tell me who is awesome! Who is inspiring! Now we all know the real story.

Next on Popping Wheelies, our visit to IKEA! Thank you for stopping by. I’m trying to keep caught up with comments, and I appreciate every one of them and every one of you.