Don't Sweat the MS

Don’t sweat the small stuff. That’s how the saying goes, right?

But what if the seemingly smaller aspects of your life are actually the ones that drive your engine and spirit?

Life with multiple sclerosis is not easy. Energy needs to be rationed. The odd and sometimes agonizing sensations never cease. Pain is constant. The quantity and quality of vision and mobility is negotiated on a moment-to-moment basis.

I once had a bad relapse that caused foot drop, prohibiting me from walking straight because my left foot dragged behind me. Blurred and limited vision is a regular occurrence. Vertigo surprises me often. These ailments were and are incredibly difficult to cope with, but I feel oddly energized to fight them and continue on.

A fear of a life-altering relapse is certainly real, but it’s the seemingly more benign day-to-day sacrifices of MS that are the hardest to make peace with:
  • When my children play make-believe, the “dad” character is often resting or napping, as opposed to working or going out for a run.
  • I’ll never return from a day at the office to be greeted with smiles and elation from my wife and children because I’m always already at home.
  • As for my career, when I “medically retired” in 2010 there was no farewell party. I just disappeared into thin air. Many of my co-workers were unsure of why and where I went. All the years I spent earning my stripes and building my brand literally vanished overnight.
  • There is never an extended period of time without doctor appointments, treatments, medical tests, phone calls or paperwork, each one a reminder of my chronic disease.
  • When out with my wife or friends, it’s embarrassing to be the one that needs the open seat since standing on my leg causes so much pain.
  • If I’m not overcome by vertigo at a grocery store, I’m usually tired out halfway through a shopping trip with the family.
  • Most weekends, trips, holidays or large events are strategically planned with my health limitations in mind.
This small stuff stings the most. In each, I feel like little parts of me – my essence – have been stolen away by MS. 

I loved to work. I enjoyed interacting with others, providing value for great companies and was proud of my accomplishments. And it saddens me that I can’t teach my children the value of a hard work ethic within a career setting.

My career wins weren’t quite the same as Michael Jordan’s or Peyton Manning’s, but similar to a retired athlete, my children have to hear about my former “playing days” instead of seeing it in real time.

When we started a family, my goal was to raise our children in an active setting. School came first because getting a solid education is paramount. But to me, being a well-rounded person is even more important.

I want my children to be ready to fly when they leave the proverbial nest. I wish for them to excel at schoolwork, and to thrive at oral and written communication, the arts and athletics.

I dreamed of running with my kids, coaching their teams… leading by example. My drive to be active remains – but instead of going for runs or playing racquetball, it’s going for walks or a swim.

I dreamed of being the kind of father whose kiddos viewed with awe – one that drove away to that mystical office for the day but then came home at night and helped them with their schoolwork, coached their teams and attended their activities. Each weekend would be packed with an abundance of activities and loving memories together.

As a husband, I desired to be a provider, protector, comic, part-time cook and although I can’t put a nail through wood, I’d compensate by calling a handyman instead, all while helping to carry the load in household planning, chores or errands.

Like anyone, I wanted to have it all.

Living with MS, you realize “having it all” is no longer some grandiose vision but is found in the small stuff, like any moment when I can see clearly and walk strongly over to one of my kiddos and give them a hug.

So, I’ll continue to sweat these small things. Some days they sting more than others, but I can’t let them diminish my spirit because – in the end – I refuse to sweat the MS.
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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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    10 Comments

  • Avatar
    Beachside5  Mar 7, 2017 12:33 PM
    You seem to be a good writer. Have you ever thought of writing short stories or articles for magazines, etc. There is a book you can purchase called The Writers Market where you can view different publishers to assess their story needs and either write for demand or find a home for existing manuscripts. Anyway, I can relate to the small stuff, too. Tx for your post. I'm trying to never give up, rather seek a new purpose. I have my faith and a supportive family.
    We got this...so onward!
  • Suyen Gutierrez   Mar 8, 2017 4:15 PM
    I was diagnosed with MS at 34. At the time I was a career driven wife and mom of three girls, my youngest was 2 years old at the time. I'm 37 now, 5 spine surgeries later and only just realizing that I'm not the only one struggling. Thank you for sharing! I was surprised by how much it touched me. Your experience feels so close to mine and I've never been able to express it. Thank you.
  • leeza  Mar 9, 2017 5:34 PM
    I'm glad you can see your journey that way. It has been for me de humanizing. Many have helped me along my journey but many have also hindered. I will fight for the rights of disabled individuals at every opportunity. We have a lot to offer as individuals and I don't support the need for us to be singled out as disabled unless we choose.
  • Kerrie Peck   Mar 10, 2017 3:04 PM
    I had been seeing a dr for years telling her about my problems. She would always tell me it's just stress. I finally switched to a new dr October 2016. She send me for a MRI for migraines and it showed 4 lesions in my brain. I was sent to a neurologist who did a MRI on my spine and found more lesions. I was finally diagnosed with MS January 13, 2017. The pain in my head and back have been so bad I can't move for days. Add the numbness in the face, arms and legs, memory and vision loss, and speech, and mood swings. I cry most days. I've been unable to work 4 months now and I'm to be off another 2 months until we can find the right meds. It's been very hard not only on me but my mom and son who have been caring for me. I'm finally getting some meds to try and I hope they help. I miss going out and doing things. Shopping or out to dinner without getting tired, dizzy or nauseous. I just feel so depressed and a burden sometimes.
  • Ann   Mar 17, 2017 5:29 AM
    Thank you for sharing in this post the little losses in life that add up to a large loss. I can relate to so many of the losses you captured.

    Last fall I left the workforce due to my MS and am still coming to grips with the reality of the impact. I have struggled with what to tell folks when the subject is raised. When I say I am on disability they look at me and do not see those invisible issues. If I say I am retired they express how "lucky"I am to be free to enjoy life- I feel anything but lucky.

    The phrase you used, "medical retirement", is a great way to phrase the reality.

    Thank you.
  • Rochelle Kindler   Mar 20, 2017 1:54 PM
    Thanks for your story. It's very touching. I've never thought about how this really effects men too emotionally. It's great your family just loves you because you're still you. And don't worry you are there to offer everyone so much. Kicking a ball isn't as valuable ás. Showing love tolerance empathy and compassion. Life is managed, don't think your worth its measured by "normal" .. Its far beyond ability..
    Just saying..xx
    Rochelle E Kindler
  • Bonny Bordeleau   Mar 28, 2017 11:47 AM
    I can relate to so much of what you are saying! Sadly I was unable to have children but I wanted to be all that for my niece and nephew. As I write this I am having horrible shakes, pain and I can barely see.... my fiancee broke our engagement after he told his parents that I have MS. They said he deserved I healthy woman who could have his children. So I am fighting hard to find a place to live with my two dogs.... I have even made a new friend who also has a disability and wants to live independently. But, this finding a affordable place for a disabled is anything but easy! My EX is threatened that if I don't find a place very soon he is going to throw me out of HIS house. Which was MY home for eight almost nine years. Obviously I am very stressed and fearful that I am going to have a flare. But, I don't even know what to look for since I just found out that I do indeed have MS. With damage to prove it. Sadly, I don't even know what a flare is.... I am so terrified! But, I do thank you for your story I hope God gives you strength, fewer symptoms, so that you can be there for your beautiful family!
  • Avatar
    gigiz_just_fine  Mar 28, 2017 7:19 PM
    Wow....what a story to read. it's funny how when we're young we take life for granted but as we grow older and we start to experience medical difficulties that's when we truly start to appreciate each second of the day that we are allowed. I can truly say that I identify with what you're going through because I too have MS. I found out at a very young age. however I was in denial for several years until I decided to go on and meet with a neurologist because my symptoms started to worsen.
    my first embarrassing experience was me defecating all over myself as I went out to eat with a boyfriend at the time. he scorned me so bad that I called off the relationship and moved back to New York City from North Carolina. I have found a job in New York once I came back and I'm doing something that I have a passion for I work at a nursing home and I'm giving back to the elderly. it's something that I like to do and it makes my heart Happy. however my daily difficulties and challenges and getting a task done is unbelievable and unexplainable. a lot of times people told me that I just need to work out to try to regain my strength and energy, too bad they don't know the seriousness of what I'm going through. I've watched the documentary with Montel Williams that talked about having MS he talked about there are days that he would cry because he was in so much pain. I only cry when I am depressed. I get depressed when I start to think about the things I won't be able to do in the future and I had to stop myself and say thank God for the ability to be alive and to make a change and someone else's life into make wrongs right. stop worrying about tomorrow and start living for today. as long as God has allowed you the opportunity to see another day be thankful and grateful.
    All the best for the future and think positive thoughts for today!
    Please excuse the non ability to punctuate as I I'm speaking directly into my phone rather than typing.
  • Avatar
    retiredchef67  Mar 31, 2017 7:41 AM
    I can appreciate your outlook. You cannot avoid sweating the small stuff. I relate to your whole article. I have been asked to speak with some others with MS because they are having a hard time. My Dr. likes my attitude because I wear shirts with my motto "I have MS, MS CANNOT have me" Good luck all and chins always up.
  • Karen Francis   Apr 4, 2017 10:37 PM
    How eloquently and perfectly said, I cannot describe the way I feel when I was diagnosed @ 50 as well as you did kootose you and my prayers..