What I’m thankful for this Thanksgiving

You may be surprised to learn that an MS diagnosis also entails gratitude

Ed Tobias avatar

by Ed Tobias |

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It wasn’t a good morning. I was dragging my cement-pillar legs around the kitchen and grew frustrated as I lurched from the refrigerator to the counter to feed the cat and the dog.

I’d propped my two canes against the counter, but they’d slid to the floor — not once, but twice. When I bent down to put a bowl of water on the floor, it spilled. Then I wanted to put the dog on his leash, but he wasn’t having any of it.

With multiple sclerosis (MS), everything I do takes twice as long as it should.

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My progression: Slow but steady

Over the decades, my MS has slowly crept up on me. Forty years ago, I was still playing tennis. Thirty-five years ago, I was walking around the French Quarter in New Orleans and Peachtree Street in Atlanta, producing broadcast coverage of presidential nominating conventions with little thought about my MS. Twenty-five years ago, I could still walk three or four city blocks using only a cane. About 15 years ago, I started using a scooter anytime I had to travel more than 100 feet. Today, I can still picture myself walking normally, and sometimes I dream about it, but I can’t remember what it feels like.

Right now, I feel like my legs have always dragged and my energy has always been low. Given all of this, one might think that I don’t have much to be thankful for this Thanksgiving. But I do — and much of it is related to MS.

Firstly, I’m thankful for my disease-modifying therapies (DMTs). When I was diagnosed with MS in 1980, there weren’t any DMTs. It would take the U.S. Food and Drug Administration 13 more years to approve one. I was thankful when I was chosen to participate in the Phase 3 clinical trial of Avonex (interferon beta 1-a) and thrilled when that trial was shortened because its preliminary results were so positive.

For various reasons over the coming years, my MS treatments changed to Tysabri (natalizumab), Aubagio (teriflunomide), and finally Lemtrada (alemtuzumab). I think each of these therapies helped to slow my MS progression.

I’m thankful to have been treated by some excellent MS specialists, particularly Heidi Crayton, with whom I’ve partnered for over 20 years to hold the reins on my MS. Having the right neurologist makes a world of difference to my quality of life.

I’m thankful to be able to afford high-quality healthcare insurance. Too many people can’t. I’ve been able to do it partly because of my employer for 32 years, The Associated Press. My bosses at the AP hired me knowing my diagnosis, understood that I needed to travel less, and didn’t lay down any speed bumps when I started using a scooter around the newsroom. So I’m thankful for my long AP career and the wonderful people I worked with.

I’m also thankful for friends from my days at Ithaca College in New York, who remain loyal (and seem as young as ever) more than 50 years after we graduated. They couldn’t care less that I operate at half-speed or need a little special handling at times. At our 50th reunion two years ago, one friend even went out of his way to borrow a metal ramp so I could ride my scooter up his front steps and into his house.

Saving the most important for last, I’m thankful for my family. My son, Geoff, was patient with a dad who couldn’t quite do as much as the other dads and who might have been just a bit grouchy at times. My daughter-in-law and grandkids go above and beyond to accommodate Poppy, who has trouble getting in their house and, once he’s there, plops himself in a chair and pretty much stays put.

Then, there’s my wife, Laura, who married me four years before my MS diagnosis and has managed to live with me for 47 years. There aren’t enough words to describe my love and gratitude.

So though my legs may drag and my energy may sag, in the words of Henry David Thoreau, “I am grateful for what I am and have. My thanksgiving is perpetual.”

You’re invited to visit my personal blog at www.themswire.com.


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Ian avatar

Ian

It’s horrible looking back at 5, 10, 15 years and remembering what you could do (and can’t do now). My son was 4 and daughter 2 when I was diagnosed and I still feel guilt (and bitterness) that I couldn’t participate as much as other dads and that they never knew “the real” me. I know what you mean about spilling the water from the dog bowl when emptying / feeling. Little things have to be thought through and done at a slower pace. I agree with you about DMTs - good for reducing / stopping relapses. But I hope they’ll be a day when the neuro can give you a tablet / injection and say “you won’t get any worse”. That will be a time to be really thankful.

Reply
Ed Tobias avatar

Ed Tobias

Hi Ian,

You're right. That will be a time. Meanwhile, I'll continue to believe that life isn't about hiding from the storm, it's about learning to dance in the rain.

Ed

Reply
Maaaa avatar

Maaaa

Has anyone had experience with the Cionic Neural Sleeve? I am considering trying one. It has 4 sensors versus just the band around the area under the knee. It has been approved by the FDA and is half the price of the other two.

I will be 82 next week and I walk with a rollator now because of balance issues and too many falls. I would love to be able to walk with a cane again.

Reply
Ed Tobias avatar

Ed Tobias

Hi Maaaa,

I haven't, but I will. I'm about to test the neural sleeve for several months and compare it to my Bioness L300GO. I, also, would like to return to walking with a single cane. It should be interesting test.

Happy Thanksgiving,

Ed

Reply
alison sponaugle avatar

alison sponaugle

I also have multiple sclerosis and admire your positivity. It really is the only way to deal with this disease. Thank you for the positive input - very uplifting!

Reply
Ed Tobias avatar

Ed Tobias

Thanks, Alison. I had a high school teacher, many decades ago, who always told me "Eddie, think positive." Sometimes it's tough, but Mr. Unterman was right.

Happy Thanksgiving,

Ed

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Tom A avatar

Tom A

Hi Ed- Ah, the yearly “what am I thankful for?” question. (Don’t know if that’s ugh or ah). All in all, overall, things could have been much worse. I’m grateful for that. I’m thankful for Soc Sec and to myself for the quarters I worked as a youngster on farms, in restaurants, etc., that made me eligible. For me, the social and employment aspects of MS were the worst. After advanced college ed., I saw and experienced some really nasty people do really nasty stuff to me as they believed my problems were unfair to them. But one company did help pay for my new house later.

I did come out of graduate school with a load of debt that was eventually forgiven, and I was able to make money at the same time legally doing other things (and keep myself busy). I’m grateful for that. I’m most grateful to my wife for marrying me anyway despite my MS. The whole thing has been a battle and I am grateful for the majority of time that I did not have to think about it.

It’s been a very unanticipated life requiring huge amounts of flexibility and changes in expectation, for every domain of living. But I can’t complain? Sure I can.

Many others have had it much worse. Happy Thanksgiving…

Reply
Ed Tobias avatar

Ed Tobias

Hi Tom,

I'm thankful that you're thankful, and that you've been able to describe your thanks so well.
Can we complain? As you wrote, "sure." But who's gonna listen?

Happy Thanksgiving,

Ed

Reply
MADELINE l NEWTON avatar

MADELINE l NEWTON

love to read your posts for i too have MS and it is great when someone will take the time to share with all of us and it DOES show we do still live our lives just like others but of course with some things having to be changed to help us with the adjustments that we do to continue to live our lifes...thank you for i have tried also to tell others that they can still enjoy life living with MS...again thank you so much for showing that you do live life but with some problems but you are still going strong ....love and much happiness....take care and stay happy ...

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Ed Tobias avatar

Ed Tobias

Thanks, Madeline. The best Thanksgiving wishes to you and yours and, yes, let's enjoy the lives we have.

Ed

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