Enjoying the Ride: The Blog

MITCH  STURGEON
Author and Blogger Living With MS

Click here to order ENJOYING THE RIDE, the book
3i Housing of Maine
2019 MLA STICKER FINALIST

2020 Annual Report

Although I agreed to wear a mask whenever I left the house for most of 2020, I was physically unable to put it on or take it off. Good thing I rarely left the house.

In fact, since cold weather arrived in the fall, my physical world has shrunk to my living room, dining room, and bedroom. Yet, it could be worse. (You knew there was a YET coming, didn’t you?) I have a comfortable living room, dining room, and bedroom. Many people don’t. I’m not hungry or cold or alone or depressed or bankrupt or afraid. Many people are. I’m just waiting for normal. Not the normal that used to be, but the normal that is yet to come. 

My Annual Report

Welcome to my Annual Report, where I consider what I’ve gained and lost in the past year, and what may await me in the coming year. I try to strike a balance. I don’t sugarcoat my condition, but neither do I fixate on the negative. And I reserve the right to inject humor no matter how serious the topic.

For a couple of reasons, I conduct this review only once each year. First, it takes that long for me to determine if specific changes are the result of disease progression, the aging process, or the irrepressible ebb and flow of life.

Second, I only do this once a year because of the stress that accompanies such self-examination. As I contemplate my losses and gains, I tend to extrapolate – envision what my life will be like down the road if the disease progression continues at this rate. That’s never a comforting exercise.
So, how did 2020 — the first year of the coronavirus — treat me? Could’ve been better, much better. Could’ve been worse, so much worse.

First, what I lost in 2020

My ability to eat and drink without human or robotic assistance is a thing of the past.
I can no longer scratch itches on my face or head, and I can’t wipe a stray hair off my eyes. My hands don’t go up that high anymore.

Because of the coronavirus, I had to quit physical therapy in March, and I miss it from both a psychological and a physical perspective. I plan to go back once I am vaccinated.

I struggle to push all the buttons and knobs on either of my wheelchairs. I can still make the chairs do what I need them to do, but the workarounds are laborious. 

I stopped taking Ocrevus out of fear of walking around (so to speak) with a compromised immune system while the coronavirus lurked. Plus, it didn’t seem to be helping me in any way.

Because of the coronavirus, we had to cancel two amazing trips – the SXSW festival in Austin in March and a cruise to Bermuda in April. Each year it becomes harder for me to travel, so I might not be able to make up for those lost trips.

Now that I am two and a half years out from my book launch, sales have slowed to a trickle. Looks like there will be no movie deal or appearance on The Ellen Show. But I didn’t write the book for those reasons. See below.

 Some not so bad things about 2020

I look back upon the book writing and publishing experience with profound satisfaction. I could never have imagined the positive feedback I would receive, the substantive conversations the book would spark, the people who would be helped by it, the number of old friends who would reach out to me after reading it, and the number of new friends I would make along the way. These things matter.

I purchased, through insurance, a new, robotic arm called Jaco, which is quite adept at helping me get through each day. I named him Lefty. Blog posts pending.

I acquired a new, next generation iBOT wheelchair! (On the other hand, I didn’t get to use it much because I’m stuck in my house due to the coronavirus, and my Permobil is a better option inside my house.)

Kim and I had small parts in a documentary about living the good life with MS. Click here to watch Beneath the Surface.

I partnered with Novartis to evaluate applicants for the MS technology challenge. The deserving winner was… The SXSW festival would have been where the award would’ve been given.

I continued to partner with multiplesclerosis.net to gain more exposure for my blog posts, although I am producing far fewer blog posts these days.

And, I had another great year advising 3i Housing of Maine, whose mission is to provide supportive housing for working aged adults with physical disabilities. Too many people with diseases like MS end up in nursing homes well before their time.

And, Kim’s home business remained profitable. Most hobbies cost money, but hers’ makes money. These profits have paid for some nice vacations. Once the coast is clear, we will need to catch up.
And, I spent another year above ground – still preferable to the alternative.

2021 Potential Losses:

I don’t know. Bunch of stuff.

2021 Potential Gains:

I plan to get vaccinated sometime this spring, and that should result in a tenuous course correction toward normal.

Maybe I’ll get back to writing. I have been neglecting it for a while.

I think we may be able to get back on the open seas this year. 

I might renew my effort to do some public speaking. 

Some good stuff I don’t even know is lurking out there.

The Bottom Line

I continue to weaken and grow fatigued. I can barely move a muscle below my neck. I am concerned for my future health and fearful for my future happiness. But, at this moment, due in no small part to Kim’s love and care, Enjoying the Ride is more than a clever name for a blog or a book. It’s my mantra, my truth.

28 Replies to “2020 Annual Report”

  1. Very interesting and informative read, Mitch..Thank you! I do hope you get to do more speaking. You help so many people to know and understand what is out there for your disability that they may share with you. But..YOU NEED TO BE PRIORITY IN GETTING THAT VACCINE! Something is very wrong in that you haven’t had it!
    The world still needs to hear from you and your positive attitude! I’m sure it gives hope to so many! For instance I never knew there was such a thing as an Ibot before I started reading your blogs. What an invention!
    Glad to hear from you! Hope to read more! ..Phyllis

  2. Phyllis, don’t get me started on the vaccine protocol in Maine. Actually, I’m due to get vaccinated in April, which is later than I wanted but not horrible. What I worry about is the 26-year-old with cystic fibrosis or the 33-year-old with stage IV cancer. It is cruel to make them wait while so many people move ahead of them.

  3. Hi Mitch,
    I’m getting my vaccines today. I registered everywhere, and had family and friends helping. I finally got a slot through CVS. Please keep trying. I to missed the SXSW viewing a pandemic is not good. It’s great to hear from you even tho everything isn’t perfect. You and your wife were awesome in the film.

    1. Verna, congratulations on getting your vaccine today. We all look forward to the day when this virus is contained. Thanks for your kind words.

  4. Mitch. Thank you for sharing your insights, wisdom and optimism. Your writing inspires me to live my best life and for that I am truly grateful.

  5. Amy, thanks so much for stopping by and commenting. It warms my heart to know that my writing is helpful.

  8. Was quite touched by Beneath the Surface; it’s thoughtful and honest and is a truly inspiring look at life with MS. Too short! I do think it will be a great resource for anyone going through the fear and uncertainty of a new diagnosis, a comfort to know they are not alone. And an inspiration for longer term patients as well, as you say to ‘keep enjoying the ride’.

    “Not the normal that used to be, but the normal that is yet to come”. I think we’re all holding our breaths for that but I have a sense it’s finally starting to take shape bit by bit. Looking forward to hearing about this year’s adventures, whatever form they take!

    1. Mary, glad you liked the movie. The Nantucket Project is an awesome group. And my friend Kate, who was the first person in the movie finds opportunities like this for me.

      Like you, I think there is a chance for some adventures this year, and I’ll be sure to report them.

  9. Thanks for leaving the link to “beneath the surface” in this blog. It is an excellent documentary and I reposted it on Facebook and mailed it on to some friends who may be interested in life with MS. This is sort of an antidote for, “but you look so good…”

    I looked forward to your 2021 projections and how time as affected your outlook. It sounds like, all in all, your attitude is positive in spite of your struggles. People come to me and say things like i admire your positive attitude –after i politely accept the complement my inner voice says something like what are my choices?

    Thanks for your book and your blog highlighting the various “challenges” and accommodations related to MS . Though your writing the quality of my life and mental health has been positively effected

    1. Hans, glad you liked the movie, and thanks for letting me know that my scribblings have been helpful. Take care.

  10. WHAT! No movie. I was gonna play my mom seeing as I have aged to a ripe 72. Plus I was hoping that Ellen would have all of us on her show for a surprise family reunion or send all of us back to Maine. I will make it back eventually. I get my first shot tomorrow at 6:40 pm tomorrow . As your beautiful mom would say “Ain’t Life Grand.” i was planning on going back last Oct. but !!!!!!!!! Much love to you cousin.

  11. hey cousin, you live in Southern California. You must know Ellen? Good luck with the vaccination, and please get your butt out here next summer.

  12. Hi Mitch,
    I’m so glad I’m following your blog, and really enjoy reading them! It’s how I found out about (and was able to participate in) the 3i Housing of Maine project. I’m also finding other informative links in here so thanks for including. You and Kim’s “small parts” in the documentary were amazing, and I also shared on FB. My profile pic and cover have blips about March being MS Awareness month, and over the years I’ve shared daily posts about my story, or have found memes and videos to share. Feel like I’m doing my part to raise awareness…and I have been pleasantly surprised with the feedback I’ve received…because really, you don’t know what you don’t know, and I think others are happy to learn about it.
    I have a great support network, and I realize, especially this past year, how important that is. I’ve missed my regular get togethers with family and friends, but we’ve remained in contact. My 15 Sophomore (once medically compromised and currently “socially awkward”) is succeeding in her hybrid schooling. My partner works out of the home (and also has his own house to take care of), but has been amazing in taking care of us regardless. I’ve been working from home and am so grateful to still have a job and the ability to do it! (My MS has progressed so getting around and doing stairs has been a challenge, but I can conserve energy and get more done from home!) I work at a behavioral health agency and talk to people all day long who are needing help for their anxiety, depression, relationship issues, substance use, etc. As you can imagine, depression, isolation, and suicides have increased. Domestic violence and child abuse/neglect have gone up. Substance use and accidental overdoses are on the rise. Positive social connections are so important. At the risk of sounding like Jerry Springer, take care of yourselves and each other.
    Mitch, once you’re vaccinated, and feel safe to get out more…..AND you can get more natural doses of Vitamin D, I truly hope you find the strength to do those things you want to get back into. I think your public speaking and writing has been an inspiration to many, and we would all love to see it continue. You are very much appreciated!

    1. hi Laura,

      I listened to your interview and it was awesome. Thanks so much for all your help on that study. I am surprised and pleased to hear that your sophomore is succeeding in hybrid schooling. Those kids got a raw deal. Also happy to hear that your job is MS-friendly.

      Thanks for your words of encouragement!

  13. Loved Beneath the Surface. I always look forward to your annual review, in part because it reminds and gives me the courage to do my own. I went down the dark hole of following links from your post to Jaco, then to the Beneath post and finally to the Challenge site. A mass of interesting and possibly useful information. As always, thanks!

  14. Daphne, thanks so much for stopping by. Glad you liked the movie. I often wonder if anybody clicks on my links. Good to know!

  15. Mitch, I appreciate your honesty and your forthright, positive outlook. Always look forward to reading your posts.

    1. Lisa, I’m so glad that my occasional scribblings on the Internet have a positive effect on you. I’ll try to write more often.

  17. Thanks for sharing your Annual Report Mitch. I’ve become increasingly depressed over not being able to travel (as my recently-retired husband and I had to cancel all of our scheduled trips) and because I know that my travel years are limited. I realize it’s nothing compared to those that have lost their lives or their livelihoods, but damn it still hurts.

    1. Hey Sandie,

      Thanks for writing. So sorry that your planned co-retirement has been delayed. I think it’s okay to grieve our losses, like vacations, as long as we acknowledge those who have lost more, which you do. It sure seems like better times are on the way…

  18. Thank you for writing your book. It gave me renewed hope and joy for living with MS. Just reading similar thoughts and experiences to my own opened my world. I have many wonderful friends and family but no one really lives IN my MS but me. Reading your book felt like meeting up with an old friend. I found you on multiplesclerosis.net and the writings of Devin Garlit. Please write more. I also must share my admiration of your wife Kim. She is extraordinary.

  19. Wanda,

    Thanks so much for writing. I’m so happy that my book gave you renewed hope, and that I accomplished this without using sappy sweet phrases like “I have MS, but MS doesn’t have me.” You are proof that people with MS are actually more comforted by shared experiences than they are about rainbows, unicorns, and cures on the horizon.

    As for Kim, you got that right!

    I wasn’t aware that Devin mentioned me in any of his articles. Which one was it?

    1. May 14th 2019 you both wrote articles for multiple sclerosis.net which were printed adjacent to one another and I mentally connected you two I think because I enjoy reading both of you and frequently search for your writing. When a recent multiple sclerosis.net reviewer referred to your book I made a cognitive leap which I will give to MY M.S. moments. You may enjoy a personal note: These m.s. moments cognitive or physical have been given a name by my granddaughter. “Popcorn Moments”. Very early in my m.s. journey my hands occasionally erratically jerked violently and once I was carrying a large bowl of popcorn to my little ones when the corn began flying into the air and room in a remarkable explosion. Now when the Nana has many mental /physical lapses they are named and I laugh to myself as I see my brain “popcorn”.

  20. Wanda, thanks for clarifying the thing about Devin. And thanks for telling me your popcorn story. It’s nothing like the popcorn story in my book 😉

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