How Multiple Sclerosis Makes Me Feel Like Tom Hanks in 'Cast Away'
Living with MS sometimes feels like I’m stranded, alone, on a remote island.
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.
There is no lifeboat or hope for rescue and the powerful tide never lets me wander too far from shore. 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 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 I’m blessed. But still, no words exist 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, loses consciousness and floats all night before being washed up on an island, in the middle of nowhere.
Chuck has no idea where he is or if he’ll ever be rescued. For Chuck, it ends up being four long years of solitude. Over time, he forms a bond with a volleyball. He names it after the logo on it, “Wilson” – this volleyball – becomes Chuck’s friend and his only form of social interaction while stranded on the island.
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.
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 who also have MS
It’s amazing now that individuals with MS, from all over the country and world, are able to meet on one virtual island just with a click or a swipe. There we have 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 “Wilson” to each other, because, ultimately, we get each other.
For those recently diagnosed, or who 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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Thinkstock photo via Digital Vision.