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 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.
Do you have a fear of needles and take medication that requires injection?