Everywhere I Go, I’m Invited To ‘Take a Seat’

Everywhere I Go, I’m Invited To ‘Take a Seat’

john connor

I knew I had MS nine years ago when I went back to see my neurologist. I’d had the lumbar puncture to prove it definitively, and I displayed all the requisite symptoms.

The only question I had was, “Will this lead to me being in a wheelchair?”

The answer was one she must have regularly opined: “No one knows. Possibly.”

The mantra “use it or lose it” was also trotted out. It’s true to an extent, but I’ve found that however much I use it — there comes a time with this disease that you will lose it. All you can do is keep going as best you can. I’ve recently been seeing a neurophysiologist, and she’s given me a regime of exercises I can apply in my present state. So, yes, I do accept I can keep going better for longer if I put in the work.

If I put too much work in my dead right leg jumps up and down with clonus. I let it. I figure it’s getting some exercise. I can stop it by changing the angle of my leg, but I think it’s a bonus having it go at it without any thought from me. A sort of inbuilt body vibration machine supplied by my neurological condition.

Six years ago I was forced to accept I had to use a wheelchair. The emphasis is very much on the word “forced.” We were going on a family day out — an all-day music festival in central London to celebrate the end of the London Olympics. We booked a taxi to Hyde Park, and I grabbed a camping chair in case I got tired.

The site of the festival was about a mile into the park. I was never going to make that distance. There were innumerable electric buggies buzzing around, but they were for the staff — and not insured for the disabled. The mantra of the Olympics had been about accessibility, but as soon as private enterprise got involved, it was every (as Star Trek now politically-correctly puts it) person for themselves.

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I made a considerable distance toward the end by going a few yards then collapsing into the camping chair. I’d recover, then give it another go. Irate phone calls to the organizers followed. I was incensed, as we’d shelled out for incredibly expensive VIP tickets and it looked like I would be marooned in a park! I would have sent my family on without me — see, very Star Trek.

Begrudgingly, they sent out the one wheelchair they had from the medical tent, which I adopted for the day. Up to this moment, I’d never needed a chair, though years before, during a long family walk in France, I’d just stopped. My wife had to fetch our car to bring me back. Luckily I’d collapsed by a country lane. If I’d been in the middle of the woods who knows? Can you get mountain rescue in a glade?

This morning, I had my first meeting to get a powered chair. Two years ago, I was playing wheelchair tennis. Now it can take an age to get between the living room and the kitchen. It also turns out there are laws in the U.K. that just aren’t known: you can be breathalyzed in a power chair, and if you end up on the road and use your phone, you can be fined. What’s really galling is that if you have a driving license, these infringements are set against it. In theory, you could lose your license for a year just for going to the pub!

Everywhere I go, especially for my innumerable medical appointments,  I am courteously invited to “take a seat.”

I equally courteously reply: “It’s all right — I’ve brought mine with me.”

Insufferable? Moi?

***

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7 comments

  1. Pat K. says:

    I’m reading I can about wheelchairs as I think perhaps the time has come. Recently I seem to have been overcome by muscle weakness and loss of energy – not the usual MS fatigue that comes and goes. It is making even a very short walk from the car to a store or any other destination daunting, to say the least. I do have a wonderful, ultra-stylish, lightweight, electric scooter but it requires some effort to get it in and out of my Kia. The wheelchair I have in mind is incredibly lightweight and folds up into its own carry-bag. Has anyone else used one of these? My upper body strength is good but not brilliant but I can see myself getting around on flat surfaces with an assistant with me. Any information would be helpful!

      • Allan Miller says:

        I’ve looked at the heavily advertised Zinger. You have to use both hands and arms to steer and brake. I don’t think this is intuitive. I personally would find this difficult with MS cog fog and weakening arms and hands.

        I suggest you take a look at the foldawheel which uses a joystick. Or the EZ lite.

        If you’re going to get a Zinger try one first.

  2. Darrin Burnette says:

    I was Diagnosed with MS in 1995 just after I graduated from High school. I new something was wrong with my body around Soft more year of High school, one day at school I was running late for class and I went to RUN UP THE STAIRS to class but instead I feel up the STAIRS banged up my shins pretty good but I was used to that because I RACED BMX BIKES FOR YEARS slipping a pedal with bear claw cages on them would definitely cut my legs up.

    After class I was walking down the STAIRS to the gym because we had a assembly that day walking up the bleachers was fine (but when I sat down with my friends I noticed that I couldn’t stomp my feet like my friends where) I didn’t think that much about it because my legs were sore from THE BMX RACE THE DAY BEFORE. After school I went to work and everything was fine

    When I got home that evening I had told my mom and dad about what happened at school that day. My parents didn’t think much of it, (MY MOM WAS A NURSE) so with my mom not worried I was okay. Fast forward to THE day that I got THE NEWS OF THE MS DX. IT was the weekend all my friends where working and I wanted to go riding that day. So I grabbed my BMX BIKE CHERRY RED PK RIPPER PUT it on the bike rack on my car. Headed to downtown Arlington heights there were some great riding spots there. So I get to bike shop parked my car and got on my bike and there was this Boulder about 4ft high that I had BUNNY HOPPED OVER Many times. This time I failed I cased my front rim I think to this day I still don’t know what happened I was woken up by a off duty police officer an ambulance came to me to THE hospital I had a concussion I broke my eye socket in 3 places and ripoff half my eyebrow down to my skull LOL.
    After Many X-RAYS and a MRI and spinal tap I get the BAD NEWS THAT I HAVE MS. Being 18 and being told that I have MS shocked me because I new what MULTIPLE SCLEROSIS was BEFORE being Diagnosed with it And I knew all the negative things that It could do to your body. I’m 42 years 4
    Old now and mad that there’s still no CURE FOR MS MY GIRLFRIEND AND I BOTH HAVE MS AND ITS ROUGH
    I’VE BEEN TRYING TO GET ON SECTION 8 FOR YEARS and my girlfriend we need cheaper rent so my kids when they come over so we can eat.

  3. Karen G. says:

    I really enjoyed your column today John. I have a Neurophysiotherapist come to my home biweekly and I feel she really helps me. All the best with your motorized wheelchair. When I’m on my scooter I tell people it’s my convertible 🙂
    Thank you for your humour.

  4. Allan Miller says:

    Another great article, John. I’m going through the process of deciding on which power chair to get. Right now I use borrowed ones. A new stage.

    Love your sense of humour. I tell people that the borrowed Jazzy power chair that I’m using now is my sidewalk sports car!

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