My Year-end MS Zen
Not long ago, I dreamed I was running. Again. It was the first time I’d had the dream in a while. It was always the same, “Been Caught Stealing,” or something like it roaring in my headphones, me in stride and rhythm with the song. And then just as I was really flying, it was over.
I have not been able to run since 2010. Every time I think I’ve forgotten it, the dream would pop back into my head and the whole process would start over. Kind of like getting over a lost love and then bumping into them again.
This time was different.
Dec. 27 will mark the fifth anniversary of my MS diagnosis. (Like a lot of people with the disease, my first symptoms appeared many years before diagnosis.) After five years, I think I’ve finally learned how to have MS and achieved a sort of “MS Zen.” Maybe not Zen with a capital Z, borne of meditation, spirituality, diet, etc., but rather more of a lowercase Z, with me paying attention just for a minute.
That counts for something, right?
In early November, my PT/MS life coach Barb told me I should quit trying to manhandle myself into better shape like I once could. Trying to do so, she said, was likely exacerbating my problems. It was at the height of my trucker butt, and on the heels of rotator cuff surgery and a couple of bad falls. “You’re just not that person anymore,” she said gently.
It wasn’t the first time she’d shared that advice. It was, however, the first time I had bothered to hear it, then actually listen to and follow it.
We developed a much less strenuous exercise routine, and I am now feeling better than I’ve felt in a long time. Dealing with the physical challenges and debilitation of the disease seems to be a little bit easier, at least for me. Within the last six months, I’ve discovered that as MS goes, my brand of the disease — primary progressive MS, or PPMS — is at least somewhat predictable, and perhaps naïvely, I find that comforting.
The mental challenges that come with that physical debilitation have been more strenuous. Like many with PPMS, I was diagnosed later in life, at 53. If that’s relatively late in life to receive a diagnosis like MS, it’s also late in life to have to recreate yourself. I understood that physically, I wasn’t the person I once was, but I had a hard time letting that year’s model go. Like many with MS and other chronic, debilitating diseases, the loss of self-reliance and independence simply wasn’t easy for me to embrace.
I’ve come to think that MS and its slow, ever-changing debilitation — and the mental struggles that come with it — demand reinventing myself in some small way, every day, like it or not. After five years (and Barb’s advice), I’m learning to think of it as an opportunity to better the part of my “self” not defined by the disease. Think Bill Murray’s character in the movie “Groundhog Day.” The story is about cynical TV weatherman Phil Connors, played by Murray, who is forced to relive a single day from his life — Groundhog Day — in an eternal doom loop until he changes his values and realizes just how much he really has.
I can’t will my capacity to return, can’t make MS magically go away. There are many things I will never be able to do again. I am more like Phil Connors than I care to admit, and some of the challenges I may be facing are more than a little frightening to me.
The truth is, my life didn’t change much today. Chances are it won’t tomorrow. Like others with the disease, I can still be kind and grateful to the many, many people who go out of their way to help me. I can still be helpful to my wife, though what that help looks like is very different.
After five years, I’ve learned that this can be my MS. I still have bad days, slowly losing my capacity, and still often struggle to come to grips with the new man. The funny thing is that all of it would have been possible to do throughout my life with or without MS. The old version of me just didn’t think that way. The new version is trying not to run away from the opportunity — maybe responsibility — as much anymore. And when I fail — which I do, and will continue to do — I take solace in knowing that I may well have the chance to do better tomorrow.
Thank you so much for reading my work (and to Bionews Services for publishing it), as it means the world to me. I hope I may have been helpful to you somehow and in some way. Regardless, I wish you a happy holiday, and a terrific 2019!
***
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 Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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Comments
gary
Good story,I was diagnosed in 1989 I am now 67 and still getting around keep up the great spirit.?
Fiona Blades
Really interesting reading how everyone diagnosed with MS deals with how it changes them and the life they once lived.
Marie
I couldn't have said it better! I was diagnosed in 2007, and what a fight! But if we try to keep a positive outlook, then it's not so bad,but still stinks!
Susan Livingston
Wow! I was also diagnosed at 53 years old, 2016, though I had been having symptoms for several years. This was very well written and mirrors my own story, as a female. Always stay positive, fellow Warriors.
Bridget
Hi my name is Bridget I was diagnosed In 2012 the last six 6 years have been a stuggle but u have to keep going what else can u do its here and it's going no where
Terry Nightingale
Hi Guy's diagnosed 20 years ago RRMS and like so many other warriors it moved to SPMS been fighting it ever since, started Gilenya 4 weeks ago and thought it might just help in slowing everything down WRONG ! went for my first Blood Test last week and it revealed my white cell count had taken a dive! Got a call from my Neuro on returning home saying stop taking Gilenya straight away. I turn 70 in a few months and my options are running out, think this may be my last chance. It has been an uphill struggle as I live in Portugal but the fight go's on, anyone else in the same predicament?
Sarah
Terry - Have you looked into Ocrevus? Only drug so far approved in US for Progressive forms of MS.
Ann B.
Terry, a new medication, Siponimod, specifically for SPMS is under review in Europe and the US. It should be available mid 2019. It is also a pill. Ocrevus is not approved for SPMS in the US but rather Primary M).
Karla Ramirez
You are very inspiring and love the life outlook you have. I was diagnosed with RRMS and it is very difficult, but right now I feel like finally I have come to terms with this new life. Happy Holidays to you, your family, and all of your readers!
Mike Knight
Thank you, Karla, I appreciate you reading my column as well as your kind words and holiday wishes. So much of MS – at least it seems to me – is about balance of one type or another, figuratively, literally and sometimes both. We have to enjoy that moment/those moments of balance because it may soon come to an end and then we start all over again;-)
Happy holidays to you and yours, best wishes for 2019 and keep up the good fight!
Sam
Great thoughts. Right on target. This mirrors my experience. I occassionally have dreams of running.
Sarah
Have you tried water aerobics or water therapy? I use two canes to walk with on land, but in the water I CAN run and jump again I don't have to just dream about it!
Mike Knight
Thank you, Sarah, I have access to a pool but have not figured out how to get to it and get in and out of it in an efficient manner yet. It's on my list for 2019 though! Thank you so much for reading my column and for your tip, too. Happy holidays and best wishes for 2019!
Beverly Cabbage
I really appreciated your article. I was officially diagnosed almost 10 years ago, but I realized "something" was happening years before that. There are 4 other members of my extended and immediate family that also have MS, so I was aware of the possibility that my ailments could be indicating that for me as well. Your story is very close to my story. I am still working on acceptance and
re-defining my definition of "me." At any rate, thanks for posting--and have a very Merry Christmas season and happy holidays!
Mike Knight
Thank you, Beverly, I’m glad the post resonated with you. I think the mental “game“ or aspect of MS is sometimes harder than the physical game, at least for me anyway. Like you, redefining myself (as well as the relationships in my life that are very important to me) is really hard sometimes. On the other hand, I appreciate “the fine” point that MS has a way of putting on things that I might’ve been paying more attention to all along. In that way, definitely better late than never.
Happy holiday to you and you ours and best wishes for 2019!
Mary Ellen
Thank-you for your inspirational message. I can relate to so many of your issues. I was diagnosed 22 years ago at the age of 42 with RRMS. Now like many others I am battling SPMS. I still keep fighting and at times struggle to keep the faith...but I must keep going, as I am not a quitter.
I would like to wish you and anyone else that reads this missive.....HAPPY HOLIDAY and a BLESSED NEW YEAR!
Mike Knight
Thank you, Mary Ellen, I appreciate you reading my work and am glad if it has been meaningful to you. I've had the great fortune to write about so many "survivors" over the years and have always found their stories so inspirational. Yours is one of those, and I admire your determination. Thank you so much, I really appreciate it. Have a happy holiday, too, and best wishes for 2019!
Judy R.
Mike,
Thank you so much for your thoughtful, reflective writing. I have dreamed of running even tho I was never a runner and woke up with with stiff legs! Crazy! I now swim laps at local pool, one that is easy to get into and the right temperature. I have met my goal of 12 laps! I makes me feel SO much better and stretches out those cramped up muscles that do NOT want to relax. I can swim better than I can walk!!
Mike Knight
Thank you so much, Judy, I really appreciate you reading my work. I'm glad swimming is working for you, too. I think anything we can do to remind us of whatever capacity we still possess is so important (I do a weekly Pilates session with a specially trained instructor and cannot say enough about how valuable that's been to me). Thanks again, happy holidays!
Kathy
Mike- that’s a great end of year read! I’ve learned a lot from the challenges of MS. Did you do a column on your rotator cuff surgery and recovery? I’m just over a month out from that surgery. I’m wondering if you have any advice on having MS and rotator cuff repair? I’ve had many orthopedic surgeries but since swimming is my favorite sport and I’m
stuck with the immobilizer sling on my right dominant arm, let’s say it’s challenging.
Mike Knight
Thank you, Kathy, I appreciate the compliment and glad you enjoyed the column. I haven't written about the rotator cuff surgery, only about what led up to it (largely stair climbing and not doing anything to strengthen the shoulder even after I knew I should have, I'm afraid). I did not have reconstructive surgery, instead it was what they call a "tuneup," meaning they did not repair the tear, only clean stuff up around it. That said, it is better than it was, but it took a couple of months.
The only advice I would have, and you likely know this already, would be ice religiously. I received – on a temporary basis — one of those shoulder "cuffs" that pumps ice-water into pockets in the cuff and had to wear it several times a day/overnight and I think that was very helpful. I also did a lot of PT and followed that pretty closely. I fell a couple times (right side surgery, right side foot drop, right side hand not super-usable) and instinctively tried to hold on to whatever I could which did nothing for the recovery, so anything you can do to avoid falling, definitely do:-).
I am regaining strength in the shoulder, so I know it can be done! Hang in there, at least with your left hand. I'm sorry I don't have better advice, but my guess is since you're a swimmer that you'll be back in the pool with no time (but as frustrating as it is, definitely don't rush it!).
Best of luck, and happy holidays and the very best for 2019!
jean Marshall
I lost 99% of my hearing in my R ear,48% in my L ear in 1997 with no other symptoms.I was 37yrs old pregnant with my fourth child.I was very healthy before June of 1997.December 1999 my R thumb went numb.March 1999 vertigo dx MS after an MRI.When I wasn't bedridden with vertigo I researched.I had weekly Acupuncture treatments and Chiropractic adjustments for months.While researching I found a medication I wanted to try.Low-Dose Naltrexone.I refused all DMD's.I found a Neurologist/MS Specialist in Ft.Lauderdale who treated his patients using LDN.One year from my dx I began a nightly dose of LDN.Those six small lesions on my brain no longer show up bright.I have regained some hearing as well.Yes, some days I feel great.Fatigue is my worst symptom.I'm a huge advocate of LDN which by the way is used for many diseases,addiction and illnesses.Adults,Children & Animals dose daily.I may have MS but it doesn't have me.Peace,Love,Light and wellness to all!
William Nye
I sit here today at my computer reading the stories of so many People like me and for that I feel a changed man. Like so many of you I was diagnosed and lived with MS since 1981. I live by myself and feel extremely fortunate to be able to take care of myself, albeit with a struggle. As I read your stories I felt a calmness, an assuredness, that transferred to me, thank you. I am now going to go out and buy my 1 year old grandaughter her Christmas gift. Merry Christmas, happy holidays, what ever to you all.
Mike Knight
Thank you for the inspiration! Happy holidays and best wishes for the new year!
Arloa Raffler
Hi, when I was 60 I thought I had a stroke. My legs went wherever they wanted and I walked like a drunk. Earlier in life I had problems but nobody could figure it out. Now I know. I have problems with swallowing and bladder, walking. I appreciate your writing and hope everybody keeps moving, at least the best they can. Happy Holidays and keep your chin up.
Mike Knight
Hello and thanks so much for reading this column (and the complement, too)! Our stories (as so many do) sound very similar. Keeping moving -- as hard as it is -- is critical. RE: "keep your chin up". My Pilates instructor frequently tells me to do that while walking (for better posture/spinal alignment) and I've found that when I do so I don't catch my toe/trip quite as much. It may all be in my head, but literally keeping my chin up seems to improve my mood/outlook, too. Anyway, thanks so much, happy holidays to you, too and best wishes for the new year!
Karen Junqueira
You describe MS so accurately. If only we could know what tomorrow would bring. But we don't, so we hang on and make the best of each day.
Keep on writing. I do, because it reflects what we experience in unexpected ways.
Karen Junqueira (South Africa)
Mike Knight
Thank you, Karen, I sure appreciate the complement and your readership. Best of luck to you on your MS journey!