Why Am I Not Bitter About My MS?
Living with multiple sclerosis (MS) is a process of loss — of mobility, brain function, and independence. We can lose relationships and jobs. For most of us, these losses are forever.
A woman who commented today on a column I wrote a few weeks ago said that she is “bitter” about the things that MS has stolen from her. She wrote that she has great support and all of the mobility devices she needs, but that “rightly or wrongly, I am bitter for what I have lost and will never regain.”
Her comment left me scratching my head. Why does she feel bitter about having MS and I don’t? I feel frustrated nearly every day that I’m so slow at completing tasks like getting dressed. It can be tough dealing with my MS fatigue, especially since people who don’t have MS have no idea of the level of fatigue I experience with this disease. And I hate going out in the rain.
I miss doing some things, but some of the activities I feel deprived of are not what you’d expect. I sometimes scooter-walk our dog past a beautiful tennis facility, and I feel a little sad that I can’t join the players. It’s been over 30 years since I held a racket, and I was never particularly good at the game — possibly due to my MS — but for some crazy reason, I want to be out there on the clay.
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It’s strange that tennis has that effect on me, but over the 39 years since my diagnosis I can’t recall ever asking myself, “Why me?” — as many people do — about the significant things that MS has taken from me. And I’ve never felt bitter. Why is that?
I wasn’t a great student in high school. I’d sit at the back of the classroom and only raise my hand when I’d catch my favorite teacher making a mistake. One day he shot back: “Ya gotta think positive, Eddie.” And I’ve tried to follow his advice.
Could the answer to my lack of bitterness be that simple? What do you think?
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Karen
Bitterness is an unproductive emotion. I prefer to expend my energies on coping with my deficits and finding ways to move forward.
Hanley Kanar
As self disclosure to give this response credibility, I have had MS longer that the author and it sounds like we are both in a similar state of decrepitude. My comment about this piece? It felt like a time-wasting bait and switch. If I am going to double click, I want the answer to the teaser question "Why am I not bitter about having M?" to be more than "Maybe I have a positive attitude. What do you think?" Yes, yes, attitude matters. Everyone knows that attitude matters. But for the honestly gut wrenching question about dealing with the natural inclination to bitterness people with life activity diminishing chronic illness often feel, this was utterly unsatisfying.
Ed Tobias
That's my problem, Hanley. The headline wasn't "Why I'm Not Bitter About My MS." It asked the question "Why am I not bitter...."
I can't answer that. I don't understand why I don't feel bitter. So I, like you, am unsatisfied and I'm hoping to find some answers from others.
Johan
I suppose. but I think having stuff helps too.
JE
Cyndi
Perhaps “mad” is a better word choice than bitter. I am committed to fighting the damage MS has wrought on my abilities, both physical and mental, but, ultimately, is it a losing battle? Not giving up just yet - probably because the prospect of losing makes me mad. Maybe that’s good?
Catherine
I really miss tennis too. Someone gets it!
And am grateful for The Tennis Channel.
Thank you Ed Tobias - I get a kick out of your wit!
Ed Tobias
Thanks, Catherine. Maybe I'll wheel my scooter onto the court and try pickle ball!
Ed
Keith Layton
To me it is as simple as frustration. I am simply frustrated at what I can't do and it can boil or simmer and wax and wane and etc. It's not bitter or angry, just that I am a planner and that has not "panned out" the way that I had "planned".That's the "it" to quote Curly aka Jack Palance in the vehicle of the movie "City Slickers".
All seriousness aside there are some advantages but on balance it simply sucks and life with MS is a constant battle with the "suckines" of the disease and making the best out of an altered state of health and well being.
Sarah Balcer
I'm not bitter about it, I've never cried about it. I too was never good at tennis. In my 20s (almost 50 now) I was very active going to the gym, biking, rollerblading, running but I was never an athlete. I've often wondered why I wasn't more upset about my diagnosis. Perhaps it's the MS itself that has blocked that emotion. I do enjoy talking to other Moms and parents and hearing their stories and often feel relieved, like I've just had therapy, that what I think and do is not that crazy. I do wish I could hold their hands as I walk, with walking sticks it's not possible. But I'm not bitter, just sad. Then I tell them I love them, and they say I love you to Mommy. And I'm not sad anymore, until the next time we're walking.
Nancy
I am not bitter either, to me it is a waste of time and precious energy. With MS, wasting energy needlessly is just not worth it. Your tennis is like my XC skiing, I did not do enough of it. But I still enjoy watching lots of sports like siing, rising and cycling, they seem to invigorate me.
Charles Dick
the reason I am not bitter about my MS is that I accept life to be full of challenges. MS is one more problem to solve. I currently take Ocrevus and Clemastine, along with vitamin D and a handful of other things. I just talked my neurologist into prescribing me some Simvastatin, but I could not yet talk her into the Rapamycin to go with it. Looking into D-mannose.
If some guy in a hockey mask is chasing you with a chainsaw, solve it. Possibly with a shotgun, or maybe creative use of a wood chipper. If you have a chronic disease, solve it. By using the best medical information available and working toward an actual cure.
Ellen S.
Every day I thank who ever is up there that I have been able to accomplish the things that I have. I skied very well and taught the sport..I played tennis and did well..I travelled and still do but now with a cane..I can only look forward to what I now can do and not to what I did..I do not look back, and I focus on the thought that God has my back! And I'm not that religious!!
Cynthia King
i vacillate between being mad to being sad to back again. The strongest emotion ms calls me to feel is thwarted. Like that old cartoon with the lady tied up on the railroad tracks with the train bearing down on her, only to have the hero rescue her in the nick of time, while the bad guy, Dick Dasterdly, twirls his mustache and says, 'curses! Foiled again!' That’s what ms is to me. It gets in my way and makes everything harder. I plan and I adapt and I accommodate only to find out the magic eight ball is saying, not today, sister. Try again later. So I feel thwarted. All my work arounds fail. But doesn’t mean they'll fail tomorrow. So I get up and do it again. Every day I plan for the worst and hope for the best. My daughter asked me once if I didn’t have ms for one day what would I do? I said go ice skating and dancing, two things I was never very good before.
Tom H
Focusing on what I have today, not what I have lost or could loose in the future. That is what keeps me positive.
Cyndi
Loved reading everyone's comments and perspectives on facing the ever changing realities of daily life with MS. Thank you. Pirating a line from Tom Hanks/Forrest Gump, "every day with MS is like a box of chocolates - you never know what you're going to get". Reading these notes today made for a delicious piece of chocolate. Thanks for sharing.
Susan Addison
I know why I am not bitter. I was able to get advanced degrees. I was able to work for thirty years with infants and toddlers with chronic special healthcare needs and their families. I was privileged to raise three wonderful children to adulthood. I am married to my high school sweetheart, who is also an amazing caregiver. Working at a career that was my passion, gave me perspective. Not everyone's child grows up, and not everyone has a supportive family. Don't misunderstand, I am not a Pollyanna. Transitioning from relapsing/remitting to secondary progressive has been awful. I am no longer able to drive or walk. I have massive fatigue. I have seizures and tremors. I have brain-stem lesions that cause serious fluctuations in my blood pressure. I have a Primary Immune Deficiency which is treated with all day, once per month infusions of gamma-globulin, for the rest of my life. I have stage 3 chronic kidney disease, etc. Some days, I cry, and some days, I am more than frustrated. Never-the-less, I never lose site of all the good things, I have had in my life, and I am able to find joy amidst the struggles.
Ed Tobias
I love what you wrote, Susan.
Thanks for sharing,
Ed
Susan Addison
Thanks for starting the conversation. Our community needs each other.
Cindy
? Thank you for sharing this I to have gone from relapsing remitting to secondary progressive .
Carole Ford
Eddie-I'm not bitter either. As for the "why me" question, I look at it this way - "why not me." Like others who've had MS for many years, I have lost important relationships, lost a job I loved when they learned I had MS, lost the ability to enjoy summertime, have serious balance issues and urinary incontinence, muscle spasms and cramps in various parts of my body that seem they'll last forever once they start and many, many other problems and losses. That's just the way life is and I do my best to roll with the punches. I don't allow MS to own me, I own MS. I do the best I can in everything I undertake, MS is no different. Bitterness would only hurt ME and I refuse something else that will only drag me down further.