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What’s really true and what really matters?

In July I will have been diagnosed with RRMS for 27 years ago.

I went to the emrgency room at the NYU Med Center in Manhattan. The first suggestion from the attending neurologist that I might have MS was utter shock, the absolute shock of facing my own mortality. I still didn’t even really know what MS was, but I knew it was not good news. I was 33 years old.

I was immediately admitted to the hospital and spent the next ten days tied to an IV drip of high-dose steroids. From there it went to further tests; MRI, spinal tap, etc., until it was confirmed, consistent with MS.

I was in it for the long haul, whatever that meant.

Unlike most of the stories I hear I had a profoundly uplifting experience during my stay in the hospital. In retrospect I see this, in part at least, as my particular reaction to the steroids.

Whether it was due to the meds or not the experiences were profound none the less, and have stayed with me all this time.

The over riding positive outcome was a profound forgiveness and self-acceptance, a clarity of thought and deep insighht into my reason for being, as I was and am an artist. All these experiences came with very deep emotions that expressed themselve spiritually, as if I had seen the Divine.

So now, 27 years later I am a practicing professional sculptor, a stone carver, still deeply driven by a spiritual hunger but not at all involved in religion. Only a few years after my diagnosis I was hired as a stonecarver at the Cathedral of St. John the Divine, in New York City, and I have been carving professionally ever since.

Whether that is a blessing or a curse remains to be seen.

The one thing that strikes me as I read other people’s stories here is a feeling of how much I’ve “gotten away with” in terms of not being disabled by the disease. I have gone on to establish a faily long career and respectable reputation as a sculptor, with very little interfearence from MS. In truth it makes me feel somewhat like a fake, in light of others struggles, but what should I do?

I was so empowered after my release from the hospital, and honestly very put off by the what I perceived, at the time, as attitudes of pity coming from the MS Society, that I didn’t want anything to do with organized MS activities, save for alternative therapies and progressive organizations. As a result I have never been a joiner in MS Society activities.

I am trying to see a way to understand, engage with and express my experience with MS in my life today, as an artist. And I’m not at all sure what that will look like yet.

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Comments

  • kellygirl
    5 years ago

    I don’t know what to post. So I’ll tell it like it is. I was given a diagnosis.Then no neurologist want to talk about it or approach it. I go to one anyway due to lifelong epilepsy. I’ve had two MRI’s on the MS subject 2009 and 2011 riddled with lesions but no help or readings. No meds except antiseizure meds.Had 3 back surgeries, now they can’t do a spinal tap (tried 3 times. x three pokes each time). I feel like giving up. I live in the mountains of MD but can’t get to an MS center all too far away. No help for people tucked out of the way. Devasting and getting worse.

  • Mr.Stoneguy author
    5 years ago

    YOU LOOK SO WELL, I just tried to post a long reply but it keeps getting rejected so I’m trying a different approach. I have no idea why my reply was blocked, but something triggered the dogs…

    Anyway, glad to meet you, another long time MSer. Keep up the good fight, there’s nothing else to do!

    Thank you for sharing that. I don’t know that I’ve “met” anyone who’s had MS longer then me, so I’m impressed.

  • But You Look So Well
    5 years ago

    As you can tell from my handle, I’m in much the same position as you are. i was diagnosed with RRMS in 1981, and had a very serious exacerbation in 1992. I have very few visible symptoms, but between the very expensive eyeglasses and the slew of medications to manage my neurogenic bladder and the constant exercise to stay functional, I sure know I have had MS for almost 35 years! And yet, despite of the brain atrophy and the scars on my torso from injecting Copaxone for fourteen years. But I do know this, that no matter how invisible your MS is to others, it’s not invisible to YOU. I’m glad you’re able to work at what you love and what your soul needs. I am a very active volunteer in my most favorite of all activities, classical music. So what if I push myself too hard? What’s the worst that could happen to me? It already has, and it’s no fun, but it’s not that bad.

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