The MS Grenade

Everyone has their own 30-second story.

It’s not a detailed autobiography, just high-level talking points that capture who you are and what you do.

This isn’t just an adult thing; you may not realize it, but you’ve been doing it since you learned to talk. 

The Early Years:  When you are just a toddler and meet someone new, within seconds, you’re discussing how old you are.  Age is the defining characteristic of a child’s life – sometimes a question about having a pet, siblings or how many times the Tooth Fairy has visited might be included - but the focus revolves around your number – 3, 6, or even 9 years old.

The Teenage/School Years:  Your 30-second package includes the high school you attend, sports played or other clubs you are a part of.  In college, an opening dialogue highlights what you are “majoring” in or where you grew up.

Young Adult:  New acquaintances are usually christened with initial conversations about where you currently work, your alma mater and whether you like your job or the city you live in…or perhaps future plans to move or change careers.

Adult:  Fast forward quite a few years, maybe you’re married and have kids.  Neighborhood get-togethers, school functions, birthday parties and other social gatherings all include the reciting of your own 30-second promo.  At some events, it may happen several times.

And it doesn’t only happen at planned social gatherings.  It might occur with the stranger sitting next to you on the plane or while out for a walk with your family in your neighborhood and happen to meet the new neighbors who live down the street. 

Common themes include whether you have kids, how many, their ages, where they go to school, the part of town you live in and what you do for a living.

I used to think nothing of these innocuous introductions.  That is, until I was diagnosed with MS.
Multiple sclerosis is not conducive to the sound bite world we currently live in and I struggle to find a concise way to incorporate it into my 30-second snapshot.

Although living with MS requires more than a bullet point summary, this isn’t just about me.  The individuals I’m conversing with deserve more, too. 

Most people are unfamiliar with MS so it’s a pretty heavy subject to mix into what is supposed to be a light and airy conversation.

But the question invariably comes, “So…what do you do?”

It wasn’t a natural transition but slowly I’ve adjusted to saying that I’m a writer.  Talk about a conversation starter! 

When I still worked and said “Director of Home Equity Product Management,” no faces lit up or eyes twinkled with curiosity.

But, before I can even finish saying “writer” they eagerly probe, “Really, what do you write about?”

And that is where my 30-second promo comes crashing down.  From the Shakespearian mountaintops to cold reality with an awkward conversation killer, “I write about living with multiple sclerosis.”

Cue the “Womp Womp.”

I go from being the J.D. Salinger next door, to just a guy with a disease that is hard to pronounce.

I wonder, is there another way?

A large majority of the MS symptoms I face are of the invisible variety so, for the most part, I look healthy.  And, as with most men in my age range, the assumption is that I work.

Although I don’t consider writing about MS to be a job, it is a big part of who I am.  So, could I have an honest 30-second spot without it?

I want to prove my resilience to this disease while underscoring that it can strike anyone, at any age.  I wear my smile in spite of MS and I’m proud of who I am and the new path that my life taken.   But it’s hard not to feel guilty for throwing my MS grenade out there.

Sometimes, I wish I could return to the days of proudly declaring I was 7, and that I had just lost my 4th tooth.  It’s a simple and true summary, evidenced that within seconds, children return to playing tag or hide-and-seek with nary a second thought of what they just discussed.

I want to bring rays of sunshine into this world instead of being a Debbie Downer…and although I’m at peace with having MS, that’s a hard bridge to sell during a 30-second introduction.

But it won’t stop me from trying.
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Michael

Michael Wentink, Blogger

In 2008, Michael Wentink was diagnosed with multiple sclerosis. At 31, he was a new father, a recent MBA graduate and a Director at a Fortune 500 company. MS altered this path and after an early retirement, Michael is now navigating life on a road less traveled. A native of Northern Virginia, Michael currently resides in San Antonio, Texas with his wife and two young children. Read about his journey with multiple sclerosis at mjwentink.com and follow him on Twitter.

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    18 Comments

  • Avatar
    Ldg1230  Mar 24, 2016 12:34 PM
    I am a neighbor of sorts. I live in the San Antonio Area. I have had MS since 2008.
    Lisa
  • CAROL SCHAEFER   Mar 24, 2016 7:06 PM
    I am the Leader of a 140 plus member MS Support Group. It is a full time job with many, many rewards.....no pay, of course!! It really does help in the esteem and explanation departments. I love it and it has really come to define me in so many ways. Thanks for the great blog!
  • blschaar   Mar 24, 2016 10:45 PM
    First of all, you are a gifted writer; that jumps out at me. And ironically MS may have opened the time to write? It's much like the "introvert in an extrovert world". We have to play a part, to a certain degree, to stay in the mix. Personally, it's hard to separate MS from who I am, because it impacts every aspect of my life. Others may be uncomfortable with some of my comments, but I am the person who tries to incorporate.....integrate who I am in it's varied parts. For instance, I disclose at work intentionally because I know I will somehow bring it up anyway. Heart on my sleeve I guess, but now the cane is my give-away.

    MS has either sped up time, or slowed me down, and I am going with the latter. The "blessing" in it is that I can't just "be busy" without thinking. I have to be intentional with my energy and what I can do. So it gave me an ability I already had, but didn't know: Choice. I also stop and take pics of pretty flowers and trees. That is so not me, but I walk slow, so I'm seeing more (for a longer period of time!)

    Great blog post and thank you for sharing. I think the power is in the sharing of our stories, because we're all different with symptoms; the constant we have is each other "getting it" even if we don't have that particular symptom. Community by MS, ironic.

    The other option is seclusion and isolating, I started there.
    But now I'm moving towards connections: MS groups, exercise group ( i hope) church community, etc. I am NOT my MS, but is woven into who I am.
  • David G. Maskalick, PhD   Mar 25, 2016 1:29 PM
    My MS Story

    I started college in Sept. ’75 and earned my BS in Biochemistry in Nov. ’78. Between Dec. ’78 and Aug. 79 I worked in a hospital analytical lab to be close to my high school sweetheart during the end of her junior year in college. I started graduate school Sept. ’79, married my high school sweet heart May 24, 1980, and earned my PhD in Protein Chemistry in 1984 after which I immediately started working in biotechnology product development at a large pharmaceutical company. Three years later, in 1987, I was diagnosed with progressive multiple sclerosis, but, I continued to work diligently and received a promotion, until in 1999 I couldn’t answer a simple question in my yearly seminar about my work. I then told my upper management I had progressive multiple sclerosis which had been reducing my ability to remember and to solve complex problems quickly. So, I was asked to take long term disability leave which I have been on ever since 2000.

    My wife is an angel since she, though we were never blessed with children, has stuck by my side and dealt with my condition, including my nano second short term memory, my stumbling walk, my double vision, and three grand mal seizures. All my physical problems associated with MS are under control now with medicine, physical therapy, prism lenses, and more medicine, and, with my wife’s never ending patience, support, and love since we were married in 1980. My wife even tried to help me start a technology transfer business and I have been trying my best to help her care for her parents who are living with us now. I also act as a host to greet people who are members of the symphony fan club she runs at events she schedules to meet guest musicians and members of the symphony. My wife is treasurer and I am secretary for the local chapter of the alumni association for the school I attended as an undergraduate.

    So even though I have been dealing with the effects of progressive MS since 1987, and, I only started receiving medication to treat releasing remitting MS, in 2000, my wife and I have continued to find ways to enjoy and contribute to our lives and to the lives of others.
  • Avatar
    maria1  Mar 25, 2016 6:21 PM
    So now you took me back to when I lost my first tooth, when a quarter was the pillow stuffer. I can still remember it moving back and forth with a little help from my tongue, but cant tell you what I had for dinner last night.

    Thanks for making me younger again, and for sharing. You have motivated others to share their experiences in more than a paragraph.
  • happydisabledmom  Mar 25, 2016 10:04 PM
    Thanks for writing about this.
    I can TOtally relate.
  • Robin Richards   Mar 26, 2016 11:59 AM
    What a great post! I was diagnosed in 1993 at the age of 38. I finally graduated college with a BA in journalism in 2002. Whenever I have to breach that conversation that includes MS, I try to make it a very minor point within those 30 seconds. I emphasize what is more important about the conversation. Oh my gosh, do I ever wish I could reverse the clock back 30 years! Since I am a Christian, I am reminded that God's grace is greater than my illness(es). It's that kind of faith that keeps me walking, figuratively & physically speaking. I too have started the writer's journey.
  • Elizabeth Sangiray   Mar 27, 2016 2:10 AM
    My son was diagnosed with MS at 16. He will be turning18 end of april. It has taken a toll on our family but we remain positive and always reassure him he will be ok. I was distraught I still cry at nights when i lay down. My baby so young so full of life and having to deal with so much at such an early age in his life.
  • J J   Mar 31, 2016 9:47 AM
    HI.. I am now 61 years old, was diagnosed when I was 36.. However, I had symptoms most of my life, and it was a chiropractor who told my mother that he believed I had MS.. this is when I was 13 years old.. I also have scoliosis and that is where my pain comes from.. I retired after 32 years of hairstyling and salon ownership in there.. Too exhausting.. have had lots of ups and downs in my life.. From now on, I'm just going to enjoy what God gives me.. kudos to you!
  • J J   Mar 31, 2016 9:47 AM
    HI.. I am now 61 years old, was diagnosed when I was 36.. However, I had symptoms most of my life, and it was a chiropractor who told my mother that he believed I had MS.. this is when I was 13 years old.. I also have scoliosis and that is where my pain comes from.. I retired after 32 years of hairstyling and salon ownership in there.. Too exhausting.. have had lots of ups and downs in my life.. From now on, I'm just going to enjoy what God gives me.. kudos to you!
  • Rosalindunderstanding  Mar 31, 2016 1:48 PM
    Thanks for sharing. I was diagnosed on 1/3/16 and I am learning how to cope with living with MS. I can relate with how you first kept to yourself because that's what I'm doing now. I know that I need to come out of my shell.
  • Avatar
    abcallander  Apr 4, 2016 11:53 AM
    I'm a video artist and face these same communications challenges. I was a video artist before diagnosed 8 years ago and themes in my art were of a broad variety. But this diagnoses and the challenges the disease brought me, both physically and emotionally, were quite powerful "distractions" from the artistic trajectory I thought I was on. But l ice is always unpredictable to some degree and I've found that facing the challenges MS has thrown my way are really not so separate from the fundamental themes I've always tackled. There is a profound world of science and biology, posychology and self awareness, emotional landscapes and "meaning" left to explore even after the diagnosis and as an artist, a communicator, my work has really just begun.

    Thanks for sharing your post.
  • Avatar
    abcallander  Apr 4, 2016 12:02 PM
    I meant "life" is unpredictable, not "ice" (though I suppose that works too).
  • Millie(Mildred) Flannery   Apr 12, 2016 12:01 AM
    I must say theMichael Wentick's blog was interesting, and lighthearted. I truly enjoyed it and it gave me encouragement to start my own. Someday soon, sound familiar🤔
  • Linda Pfaff   May 19, 2016 6:05 AM
    I was diagnosed with MS in 2014. Then in 2015 also diagnosed with fibromyalgia and spinal stenosis and arthritis. What a mess I am. I guess I would like to know where the fibromyalgia picks up where ms leaves off for symptoms. I have facial numbness, sciatic barley, hip pain, tremors,eye sight problems with floaters and white substance in brain. Need help understanding all this. Fatigue but can't sleep or stay asleep. Help
  • Linda Pfaff   May 19, 2016 6:10 AM
    I was diagnosed with MS in 2014. Then in 2015 also diagnosed with fibromyalgia and spinal stenosis and arthritis. What a mess I am. I guess I would like to know where the fibromyalgia picks up where ms leaves off for symptoms. I have facial numbness, sciatic barley, hip pain, tremors,eye sight problems with floaters and white substance in brain. Need help understanding all this. Fatigue but can't sleep or stay asleep. My muscles in my arms are so weak and ankles stiff. Can someone help me understand how I can have both
  • tracy-short  Jun 17, 2016 1:08 AM
    I went blind in both eyes 12 days after being sworn in as an attorney. I never got to practice law or make a penny. The stupid thing is that I still pay membership dues every year for something I never got to use. Try that for a grenade! People will press when I say I'm just a stay at home mom. Well where did you work before? I didn't work because I was in law school. Oh! what kind of law do you practice, where did you work before you had your son? I actually avoid interaction with people entirely now after the reaction of the few people I dropped that nuclear missile on! Someone PLEASE comment! I can't even make any "connections" here and I feel like a loser on a site that I came to in desperation due to my isolation from the world.
  • MelissaFe  Jul 20, 2016 12:02 AM
    When you first hit big trouble with MS, as a man, how did you cope with the threat to your sense of manhood? What did your support system do that helped? How did you get out of the anger, denial, etc....