How Do I LIVE?


You might wonder how one continues to live a meaningful life when a change in health turns their life topsy-turvy. It’s weird, actually. In my healthy normal past life (just yesterday), I worried about stuff like this. After all, the news is all around you, happening to everyone else, it seems. I figured the odds were pretty good for something like breast cancer, seeing the statistics of 1 in 5 women. Never did I entertain being blessed with a rare disorder like sarcoidosis. Never did I think that I would become one of those “interesting” patients. Nor did I have an inkling on that very first day where they said “it might be sarcoidosis” that “might” meant possibly years before “probably” would be uttered. That EVERYTHING ELSE would have to be ruled out first in a daunting two years of expensive testing! That “might” currently meant “possible” on the spectrum of “possible-probable-definite.” And that I would experience great relief when finally the specialist would say “I’m very comfortable calling this cardiac sarcoidosis.” And to finally see “ neurosarcoidosis” in my list of diagnoses, because finally, that meant that medication could be prescribed and I could be treated! BUT… never did I entertain the thought that the great, long-hoped-for-medicine might not work! That after all this time and hope and anxious waiting would my symptoms continue to decline even more, to the point that I could no longer work(?!) Well, here I am now, all but fired from my job, “encouraged” to go on disability, so that,in the event that I DO eventually improve, I can return to my job.

So, how does one live now…when until now their type A overachiever personality is forced to reinvent the opposite life? A life of (actually welcome) rest, inactivity and (can we even dare think of) possibly boredom? Fortunately for me, I’ve had so many dreams in my “bucket” that I don’t think I’ll be bored for a while. I have projects I want to learn, a house to organize and improve, friends to hang out with and many hobbies. I plan to eat better, spend more time cooking new recipes, rather than the same things we’ve been eating over and over for years. I can finally indulge my senses, try out these different fragrances from my favorite company “Scentsy” who makes such perfect fragrances and sells such beautiful warmers. I hope to have one in each room eventually and rotate the scents based on my mood and the season. Vanilla makes me happy anytime!


I plan to capitalize on my senses for enjoyment of fragrances, food and of course, the outdoors. I can drive because I only have to sit. Sit, drive, nap, enjoy….

Life’s surprises can be a blessing. We have to be open to changing our course. My senses are still working…I can still live!


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