Wednesday, March 13, 2013

The MS App

Michael Wentink    
Blogger, A Road Less Traveled...   

Growing up in the 80s, family trips to the local shopping mall usually involved my brothers and I heading to the arcade and playing video games until our parents gave us the sign that it was time to go. For this ten year old, it was sweet music to my ears as the fresh quarters rattled around in the coin dispenser, the converted dollar bills courtesy of Mom and Dad. My time and quarters were spent playing mostly sports-themed games, as not much else really piqued my interest.

After I spent my last quarter, I’d wander over to the game “Gauntlet,” not to play, but to watch for a few minutes until it was officially time to leave. “Gauntlet” was very different from “Tecmo Bowl” and the other sports games I usually gravitated toward; rather than trying to beat another team by scoring more points, it was about pure survival.

My eyes were always drawn to each player’s score, highlighted in big red numbers, usually rapidly descending as players struggled to complete the various levels. There was one memorable phrase I remember from the game: “Your life force is running out!” It was uttered by the computer narrator whenever a player’s health had decreased to a threatening level. As I watched, I’d try to predict in my head at what precise moment the computer would start providing this ominous and repetitive alert.

SO TIRED OF BEING TIRED

For those with MS, energy is a prized resource, available only in limited quantities. Read any medical definition of multiple sclerosis and “fatigue” will be listed as one of the more common symptoms. The quotes are an intentional and caustic nod to this word; personally, I find the term “fatigue” lacking in accuracy and descriptive affect on the realities of living with MS.

Webster’s defines fatigue as “weariness or exhaustion from labor, exertion or stress,” but with MS no exertion is required to enter a state of exhaustion; rather, weariness is constant - a baseline. Normal, daily routines, like showering and shaving, are obstacles to be planned for and managed, all in the name of preserving my energy. Even on my best days, I regularly feel the dark cloud of exhaustion hovering, tempting me to surrender and retreat to a dark and quiet spot, isolated from others.

One moment I’m reading a story to my children or enjoying a dinner with my wife … then suddenly, my energy has vanished, my bones feel cold and achy, my mind is hazy, unable to think clearly. Often, I worry that my children think I’m ignoring them, my friends and family feel I’m disinterested, or new acquaintances wonder why I seem so tired and unengaged.

MY OWN GAUNTLET

But what if I had my own colored indicator, floating above my head, clearly identifying my energy level? My “life force” would blink in big numbers, and a friendly alert would go off when a low level was reached, notifying me and others that my energy was tapped out or, as with most days, surviving on fumes. 

Understandably, some might hesitate to broadcast their personal battle, a scarlet MS for all to see. But it would also be a portal for seeing through the MS looking glass, easing confusion and misunderstanding, highlighting our strength in battle and a wonderful way to educate ourselves and others on the moment-by-moment struggle we face against our own bodies. 


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.

13 comments:

  1. All so very true & accurate. How.do we overcome this though?? In a severe stage of depression and anxiety because of this.

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  2. I like the idea of having the bar indicator floating above our heads. And yes some would refrain from wanting to broadcast it. But I have had too many people around me that would hate having to see it. They do not want to think about our struggles. They do not want to think about our pain. Our condition makes them uneasy. If they don't see it, they don't have to think about it...

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  3. This is very true. People tire me, not that I don't like people, the energy to engage and remember all their names AND attach them to the right face does. I am glad that you said this so well.

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  4. I too suffered with no energy. I was diagnosed with MS when I was 18 and it was a roller coaster for many years. I now have 2 young boys 4 and 5 now and for the most of their lives I felt like a zombie. In this past year I was introduced to a healthier life style with Advocare and making no medical claims it has given me so much and I am awake and have energy again! If anyone is interested I would love to share more. I am not trying to sell anyone on this but it has honestly changed my life so much and I don't know where I would be right now without it!

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    1. Looking back at my post I left out I am now 29 so I'm still not 18!

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    2. I would love to hear more about it!!

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    3. I too would like to hear more, caring for my stepfather who has primary progressive MS there isn't much we can do but manage it and anything that might help is worth a shot

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  5. Thank you for sharing this as it helps me understand a little more about what my sister goes through every day.

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  6. This is a great quote about MS. I had to copy and paste to my own page. I was never a part of a fortune 500 company but I do remember the arcade experience from the eighties and his description of energy or lack there of fits my experience with MS perfectly...

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  7. Love the comment about the bar. Would be helpful if my family knew how much battery power I left. It doesn't matter how tired I am, how disoriented mom is, they still want to know "when is dinner?!" I was diagnosed last year age 39. I have 4 girls under the age 15. There is "mom" tired and then there is MS tired, now put them together. still I smile and count my blessings. Nice to read an article and read so many comments from all of you who "get it"

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  8. All I can say is "Thank you!" Today you helped me feel less alone. Bless your heart!

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  10. Well said by everyone. I have so many things to be grateful for in my life, having said this, my MS fatigue is the hardest thing in my life. There is no way to explain it to others who have not experienced it. It can be debilitating & unpredictable. I loved the part about the scarlet letter of MS. It seems so shameful at times to say no to things you desperately want to do, but can't because of fatigue. I appreciate the courage of the writer in making the post. While I'd trade my MS in in a heartbeat, it certainly has taught me how to be non-judgemental of others and more empathetic!

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