My Voice

Once upon a time, in a land far, far away there was a boy named Michael. 

The land was Europe. Frankfurt, Germany, to be exact. It was September 1980 and it was Michael’s first day of kindergarten. 

Michael, the youngest of three boys, was excited to finally join his older brothers at school. His mother, Frances, walked proudly with him to Frankfurt Elementary #1.

They reached the door to his classroom and instead of worry, or even tears, Michael looked back calmly at his mother – with a gleam in his eye – and said, “I’m good, Mom. I can walk myself to school tomorrow.”

That was one of my Mom’s favorite stories to tell about me. She loved mentioning how independent I was growing up, even at the tender age of four.

Although this story showcases a perceived strength of mine, that same pride and independence is also my biggest roadblock every time I sit down to write. Every. Single. Time.

Living with MS is not always conducive to writing (blurred vision and discomfort throughout my fingers, are two examples) but, for me, the bigger impediment is struggling to find my voice

How am I coming across to the reader?

Are my words filled with negative energy? Does my prose read defeatist, full of complaints and sadness?

I fear readers view my words with pity. Poor Michael, so sad what he is struggling with! 

So, I edit words and phrases, hoping to avoid any dark passages. Entire stories are re-written or even scrapped because of a nagging pride that doesn’t want others to think I can’t handle life with MS.

But there’s a catch. Living with MS isn’t easy. In fact, it sucks.

The battle of Pride vs. Reality plays out every time I sit down to write. My imagination has even brought this bout to life:   

In this corner, stands Michael’s Pride & Independence! Born in 1976, weighing in at 175 pounds, it can’t stop smiling and finding silver linings!

And….in this corner, stands Multiple Sclerosis! Discovered in 1868, it is undefeated having never been cured and currently affects over 2.3 million people!

Ding, ding ding!

There are other mental hurdles besides just my pride. I’m not a doctor and hold no medical degree and I don’t want to offend those who do when I write in detail about multiple sclerosis.

And MS is different for everyone. Everyone. And I’m not just talking about the symptoms or how aggressively it disables; each of us process it differently, too. Some don’t want to share their struggle with even their family or closest friends, while others choose to be more open with their diagnosis. I want to include that as a disclaimer each time I write.

But ultimately, it’s my independence and pride that provide the biggest impediment for me trying to find my voice.

Am I a champion, overcoming – with a smile – the daily struggles of living with a disease that affects millions of people?

Or should I face defeat and admit that not even the silverest of linings can outweigh the sadness I feel in my heart when I see my young children look at me with concern as I struggle to walk around the house?

It finally dawned on me the other day – the answer is none of the above.

Thirty-six years ago, I didn’t tell my Mom I could walk myself to school because I was trying to be prideful – I was just sharing my honest feelings.

And that’s what I do today when I write about MS, sharing my truth. 

Sometimes, that truth can be funny or inspiring…but sometimes, it can be scary and not always have a happy ending.

Yes, I fear pity. But, worse than that would be not giving an accurate portrayal of how difficult living with MS is.

I write to bring awareness and understanding to multiple sclerosis. For those living with MS, I hope to give color to their struggles – to help them feel less alone – while painting a picture for their friends and family to see.

I want our struggle to be understood. I want MS to be cured.

That’s my voice.
3 Appreciate this
| Reply
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.

Leave a Comment

Thanks for sharing your thoughts with the MSconnection.org community. Please note comments are moderated.

    12 Comments

  • Jo   Sep 27, 2016 11:51 AM
    I was diagnosed the same year as you; had to give up a much loved career and spent over 5 years in the emotional wilderness. Stay strong, value your family, know you are not alone as long as they share your life. Thanks for sharing..
  • Dolores   Sep 27, 2016 12:01 PM
    Thank you Michael for being REAL. It's a pleasure to see others are dealing with the same as me and I'm sure many others.
    I get a mental block when I try to describe what I'm feeling or dealing with. It's frustrating as heck.
    Reading your stories and posts make it a bit easier for me, as I now know I am not alone. Thank you again
  • Ann Johnson   Sep 27, 2016 12:25 PM
    Very well written. It is so hard to keep fighting. Some days I just want to stay in bed. Mostly I carry on struggling.
  • Claire   Sep 28, 2016 11:04 AM
    Thanks for putting my thoughts and pain a voice today. I have always kept my MS a secret until now. As a single mother of two it was imperative for me being employed. Now on disability I do tell some people. The loneliness of that secret was difficult. Your article made my day :)
  • GLORIA JEANNE LISE   Sep 28, 2016 1:20 PM
    Michael, I relate to your thoughts and words and feelings. Thank you. With yourself unadorned and unpretentious and so openly heartfelt, you came at this exact moment in time in which I sat here feeling so MS-alone and so MS-misunderstood.
    Because my disabilies seemed few at the onset, I had formerly not realized the progressiveness of MS. At least not until just today. I presently sit here just glad to be sitting! Lately, like at this very moment, as the rest of the visiting family and friends are off to have some fun, I am relieved to be just sitting here on the couch in my living room. I just couldn't keep up! Others can not possibly realize how difficult it is just to 'prepare' to go anywhere. Walking from one room to the other tires me some days. And thinking!
    How s-l-o-w-l-y my toughts turn into the right words at times. How difficult it is to make sense of the fast wordy conversations of others. On and on.
    But your words have definitely comforted me in ways I myslef do not even understand. Although our 'symptoms' may differ, your words conforted me in the knowing that I am not alone, not isolated, not left to cope on my own the struggles that others can not understand. Some try to. Some even 'think' they do, but soon their reactions ultimately prove that they do not.
    But now, in this this very moment of time, the angels came to me through you to fill that formerly black void of space in which my heart had lived.
    Thank you.
    Gloria
  • Avatar
    gjlisGLORIA  Sep 28, 2016 1:22 PM
    Michael, I relate to your thoughts and words and feelings. Thank you. With yourself unadorned and unpretentious and so openly heartfelt, you came at this exact moment in time in which I sat here feeling so MS-alone and so MS-misunderstood.
    Because my disabilies seemed few at the onset, I had formerly not realized the progressiveness of MS. At least not until just today. I presently sit here just glad to be sitting! Lately, like at this very moment, as the rest of the visiting family and friends are off to have some fun, I am relieved to be just sitting here on the couch in my living room. I just couldn't keep up! Others can not possibly realize how difficult it is just to 'prepare' to go anywhere. Walking from one room to the other tires me some days. And thinking!
    How s-l-o-w-l-y my toughts turn into the right words at times. How difficult it is to make sense of the fast wordy conversations of others. On and on.
    But your words have definitely comforted me in ways I myslef do not even understand. Although our 'symptoms' may differ, your words conforted me in the knowing that I am not alone, not isolated, not left to cope on my own the struggles that others can not understand. Some try to. Some even 'think' they do, but soon their reactions ultimately prove that they do not.
    But now, in this this very moment of time, the angels came to me through you to fill that formerly black void of space in which, unbeknownst to me, my heart had formerly existed.
    Thank you.
    Gloria
  • David Maskalick   Sep 28, 2016 1:47 PM
    Encouraging oneself when wrestling with MS symptoms.

    In 1984 I received by PhD and started my career in biotechnology at a pharmaceutical company. In 1986 I was 28, it was two years after completing my PhD and I was beginning my biotechnology product development career in a pharmaceutical company when I was diagnosed with MS. Initially I thought the MS only caused me to experienced fatigue during working hours so I encouraged myself to take breaks and just work after the usual quitting time. Then, I received a promotion in 1988. Later I realized MS compromised my memory and problem solving abilities. I dealt with my reduced memory by encouraging myself to write down everything I learned, every problem I needed to solve, and every solution I developed for the problems. It took me more time to solve complex problems so I encouraged myself to working longer hours.

    However, eleven years later, in 1999, after a seminar I delivered to management as part of my annual performance review, I couldn’t cover it up anymore after I was asked a question for which I couldn’t remember the answer and said as much. Later when I was asked to explain my incompetence to management I had to reveal it was caused by multiple sclerosis that I had been dealing with for the last 13 years on the job. Then management offered me long term disability. Fortunately, shortly after I was diagnosed, I began paying into the long term disability insurance package to increase my disability benefits if I was asked to take long term disability. I then was offered the opportunity to explain to my colleague research scientists why I was leaving on long term disability. In a group meeting I presented a brief seminar about multiple sclerosis along with a description of the physical and cognitive symptoms of demyelination to my colleagues, and I ended stating when I was diagnosed and the symptoms of increased fatigue, decreased memory, and reduced speed solving complex problems, that had been challenging me. Most of the group didn’t know of my diagnosis and expressed their appreciation of my accomplishments.

    After I went on long term disability I worked to try to start a technology transfer business for several years. I encouraged myself to develop a relational technology database with discoveries and inventions related to potential commercial products and services. I had to dissolve the business but I have encouraged myself to write a book to communicate all that I learned which I look forward to completing and publishing soon.

    Yes, it is very frustrating dealing with all the MS symptoms so I look at them as a set of challenges to overcome and I encourage myself to conquer them all.
  • Steven Whitacre   Sep 29, 2016 2:02 PM
    Thanks for Sharing. . . . MS does Suck! but at the same time I have so much to be Thankful for :)
  • Jennifer   Sep 29, 2016 8:49 PM
    Hi Michael. It was an excellent blog. I write one myself because I was tired of reading how great tomorrow would be. I wanted to give voice to how I was really feeling and how I'm sure many people with MS feel. I to check my blog and delete things that are super negative. But I don't get rid of everything. I try and edit out the really depressing but do discuss what's going on with me honestly. I don't want people to feel bad for me but I want people to know more about Ms and what the struggles are for us. If you ever want to read my blog, it's ladydisability.wordpress.com
    Don't stop writing!
    Jennifer
  • Anne   Oct 25, 2016 10:31 AM
    Thanks for your blog. It is good to read a real account of someone living with MS not a sugar coated " Positive mental attitude is all you need" account. I can be positive most of the time but it is also ok to be down and out pissed off at it too. When all of a sudden I can't remember the name of the place I have worked for the last eight years it is frightening. When I trip over an invisible molehill and stub my toe again it is annoying. When I need people to write things down so I don't forget and rely on my phone to remind me of appointments I was only just talking about it is frustrating. But, I know my illness and can put strategies in place to make sure I am still able to work, rest and play hard. I intend to keep doing as many far-out physical activities from abseiling and climbing, to shovelling barrowloads of earth from one end of my garden to the other( Garden makeover , not just weird earth moving fetish!) For as long as I can muster the energy. Sometimes I will burn out after only half an hour others I can keep going from dawn til dusk. MS sucks and yes, I do have MS but I am not MS.
  • Avatar
    betterdays  Oct 25, 2016 11:35 AM
    Thanks for sharing Michael. I can relate to what you're saying. I appreciate your blog, and look forward to reading more of your writings.
  • Mailin   Oct 26, 2016 9:20 AM
    Michael, Thank you for sharing your story. Diagnosed in 89 I'm now retired with 48. I'm concentrating what I have gained and not what I lost. It's hard sometimes but it is what it is and live goes on.