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.

27 thoughts on “25 years later

  1. I wonder is the no walking talk as tough as the other, the no you really shouldn’t drive? Of course everyone takes the news differently, but I’ve always wanted to ask an eye doctor how often they get to deliver the news… (and wild guess: probably not often enough. I know too many people with glaucoma or cataracts or other ‘fun’ that still drive)…
    My uncle lost both his legs 4 summers ago, around the same time my mum died. He’s told a lot of his previous friends disappeared, even a few that lived less than a mile from where he was in hospital. I don’t quite get people – he’s still my uncle, still the same person (just a bit more concentrated now). Still fun to hang out with, or to enjoy his cooking. Like all the changes are part of the life. Learn to laugh again if needed after a big change (and, maybe, accept a bit more of mortality sometimes)?

    Liked by 1 person

  2. With anniversaries you want to say ‘Happy…” first, yet this ‘Paraversary’ is one of those bittersweet things to recall and to keep count of. I will, however, disagree on your point of being “blessed more than what I could possibly deserve”, because you deserve the moon and the stars and more. I hope 2019 is a healthier, happier, brighter year and I’ll look forward to following your journey xxxx

    Liked by 1 person

  3. This was an insightful read, I love that you rock your disability and encourage and support others on a daily basis. I feel lucky to have met you, even if it is only on the Internet.
    25 years is a long time, yet it’s your prerogative to reminisce as often as you feel Xxx

    Liked by 1 person

    1. Thanks for the kind words. I think some bling on assistive devices is not only fun, it’s important. We have no need to be ashamed or intimidated because we do things differently from the majority. I have made many friends with the initial connection being disability. I am very glad to have met you, and perhaps we can make the connection in England!


  4. George, have you ever considered Medical Marijuana? The reason I ask is because I have recently been taking it along with CBD oil and the difference in me is from night to day. I found a fantastic doctor who understands what it is like to live with a chronic condition. Here in NYS we are only allowed oils to take orally or in a vape pen. I take the lowest dose because the stronger doses give me side effects and I just will not tolerate side effects. I’ve heard wonderful stories about people with MS who are having great success with Medical Marijuana. I have no idea why I am leaving this comment but my Heart guided me to. 😘

    Liked by 2 people

    1. Thank you for the tips. I haven’t tried medical marijuana, or in any form at all. I grow tired of the constant tingling and occasional phantom pain from damaged nerves. But I can keep it in check with the 2 common drugs typically used if I toss in some music imaging and deep breathing. Medical marijuana is used sparingly here, mostly as a last resort for pain.
      I am open to hearing all ideas, and I’m not above it should push come to shove. I appreciate the info. Thanks.

      Liked by 2 people

      1. It’s all pretty new here as well, George. At first I was really disappointed when I got my hopes up too much, because it didn’t work as I thought it would. I’m still taking my other medications but …. not as often and the pain level is not as severe. It’s a shame it is a last resort for pain because I can attest it really works. Good luck!! 🤗

        Liked by 2 people

      2. I’d like to hop into this conversation as I was talking with my oldest son about this topic a couple of days ago. He’s always been a proponent of the legalization of marijuana but I always felt it was him being a renegade. Turns out he takes it now by pill and he also says eating and sleeping well, along with exercise has helped him tremendously. He was able to go off his antidepressants and it’s keeping his anxiety at bay. I’ve heard so many positive stories about the of medicinal marijuana I’m actually thinking about looking into for myself. My only concern is getting the correct dosage.

        Liked by 1 person

      3. Yeah, but I’m a bit of a hypochondriac. Back when I was a teenager and got the idea that I would test the marijuana waters, I thought I was dying and made my friends take me to the ER. They begged me not to go in because they were afraid we’d all get in trouble. I didn’t go in and it was a funny story if you were there but I wasn’t laughing when it was happening. Moral of the story, be your own kind of cool. My kind of cool meant no recreational drugs.

        Liked by 1 person

  5. Sorry I didn’t leave a reply when I first read this post some time ago George. I’m sure I convinced myself I did yet I was sadly mistaken. I’m so happy that I connected with you because you’re an awesome person who I’m so thrilled to also call my friend. Additionally, I’ve learned so much about MS and living life in a wheelchair, it’s been eye-opening.

    Liked by 1 person

    1. Thank you for the kind words. I feel the same way about meeting you. One of the positives about bad things that happen is that we have the opportunity to make new friends. Using a wheelchair is frustrating at times, but meeting new people and helping others are rewards.

      Liked by 1 person

  6. I have low muscle tone I’m guessing due yo congenital rubella syndrome. I know many do, & some of the people from CRS community talk about muscle degeneration or whatever you call it, & I’m scared I’ll lose the strength in my limbs & one day not be able to walk. I’m scared CRS will take my eyes & ears too. The thing is with CRS doctors don’t know why or what is causing certain disabilities like the loss of muscles etc, & put it down to damage from rubella. There are these two twins who are trying to get more research done on CRS & having their conditions, tested & looked at. Both have muscle rare muscle conditions & neurological conditions that have caused their movements & mobility to deteriorate. Gulp! We Rubi babies are a rarity in UK & US, & doctors don’t know anything about it.

    Liked by 1 person

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