Cast Away

Living with MS sometimes feels like I’m stranded alone on a remote island.

But it’s not an escape to “paradise,” as there are no swaying palm trees, crystal blue waters or cool white sandy beaches.


Instead, there are hurricane force winds that cause me to regularly lose balance. Torrential rains that obstruct my vision and hinder my ability to hold objects. The unforgiving sun that drains me of energy. The rough sand causes me to grimace every few steps, sending electronic shocks up through my legs. My compass is cracked, I often lose track of the time or day, and I have no idea what the future might hold.

There are many more symbolic references to my physical ailments that are analogous to being stranded on an island. But what reminds me most of feeling lost is the mental and emotional toll of not being able to easily communicate with family, friends and casual acquaintances about my MS.
Multiple sclerosis doesn’t prohibit my ability to speak, but trying to explain how my day is really going, or what life is actually like living with MS is beyond frustrating.

Brain fog causes me to slur and stammer while thinking of basic words, or I forget what I was saying, or what I was just told. But even without the “fog,” MS is just something that you can’t truly understand unless you are living with it, too.

My wife, children and friends listen to how I describe MS, empathize and provide unconditional love and support. For that, I know that I’m blessed. But still, no words exist that can accurately explain what life or even just a day is like with MS.

It’s like I have an unexplainable secret–and it’s called multiple sclerosis. And that really sucks.
Because of this, I sometimes feel like Tom Hanks in “Cast Away.”

His character, Chuck Noland, is on a FedEx plane full of packages that crashes in the Pacific Ocean. Chuck survives the crash, clings to an inflatable raft and floats all night before being washed up on an island in the middle of nowhere.

Chuck becomes stranded in solitude for four long years. Over time, he forms a bond with a volleyball. He names it after the logo on it, “Wilson," and it becomes Chuck’s friend and his only form of social interaction.

To review, I’ve never survived a crash and been stranded on a faraway island. But, when I was diagnosed with MS back in 2008, that’s kind of how it felt.

Mr. Wentink, you have multiple sclerosis. We aren’t quite sure why or how you developed it.  And, you might go the next 20 years and have very little issues… or, you could wake up tomorrow and be in a wheelchair.

Crash! Boom!

The doctors didn’t provide me with a volleyball named “Wilson” after my diagnosis, but it might have helped.

The first few months were dark on my island less traveled, and I didn’t want to let others in.
Eventually, I learned to co-exist with my disease, through two “Wilson-esque” paths: 
  • Dedicating myself to demystifying this confusing island of MS through writing and podcasting
  • Connecting and genuinely sharing with others that also have MS
It’s amazing now that individuals with MS from all over the world can meet on a virtual island with just a click or swipe. We can form an informal support group and, most importantly, a reminder that we’re not fighting this disease alone.

And although each case of MS is different and varies in its course, we can be a “Wilson” to each other, because, ultimately, we get each other.

For those recently diagnosed or that suddenly feel lost and isolated by your MS–remember–you are NOT alone. You didn’t choose this destination; for some reason, it chose you.

Make the best of each new day. If you can, avoid the rough sand and find shelter from the turbulent storms.

And remember to watch the sunrise or sunset whenever you can. We might have felt cast away when we were diagnosed with MS, but no matter the location, some things in life will always remain beautifully perfect.
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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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    1 Comments

  • Pat Kmura   Nov 28, 2017 11:26 AM
    I can certainly relate t this post although my scenario is not that of being on an island but instead I am trapped n the pages of Gulliver's Travels!
    Since my progressive MS 16 years ago I have slowly lost a lot o my mobility and have gained a new curse - no balance. As a result, I have gone from can, to rollator ad occasional scooter use. In this land of giants, I feel diminished, quite like Gulliver. Everyone is larger, stronger, and long striding. I am amazed that in this fairly small community I have yet to encounter a fellow MS'er! There are few facilities available such as adequate handicap parking or ease of access to stores and restaurants. ADA specs do not exist here, apparently. Perhaps others have simply given up tyring to cope with difficulties and stay home - they are certainly not visible in this part of Western North Carolina!
    Well, I continue to be semi-invisible among the giants but it is not how thing should be. I would like to be more of an activist for better facilities but need a like-minded person for back-up. Perhaps there is a secret "Jack the Giant Killer" who would like to help level this particular playing field?