My dear friends, you motivated this little blog. I started it, after being told by quite a few of you how badly you wanted to ask about my MS, but didn’t know how. I’m hoping that my first few entries have been helpful for you—they certainly have been for me. Disease makes me uncomfortable, too. Writing here has given me some long overdue catharsis and for that, I thank you.
I hope my entries don’t come off as too morose or teeter on the dangerous edge of “why me?”—Because, really, why not me? I’m no one special. I many times wish I had started this sooner, perhaps during the diagnosis process, the trial and error in treatments, the truly scary moments…Everything was new then and maybe I’d have more to say.
Sometimes I feel a little silly or even guilty writing these, because the truth is: I am very fortunate in the very slow rate that my disease seems to be progressing. My doctor has called me “lucky.” The good days easily outnumber the few bad days. It could be so much worse. There is so much suffering out there and I am so thankful my little hurdles are enough for me to manage.
The feedback I’ve received here has all been positive and I’m delighted that the things I have shared so far seem to be educational and beneficial.
So! Let’s jump right in. A phone call I received yesterday is my inspiration for this particular post and I hope you are able to take something from it.
When word spreads of cancer or a heart attack or an accident, the flower arrangements, the get well cards, and the casseroles all come flooding in. Visitors offer their company, hope, and a shoulder to cry on. Prayer chains are formed. New support systems are established. The things that happen following bad news are truly beautiful.
I, too, was blessed to experience these wonderful acts of kindness from friends, family, and people I had no idea even cared as I became more and more open about my having Multiple Sclerosis. The generosity and positivity was overwhelming and I am still amazed when people I hardly know or haven’t spoken to in years offer genuine support.
The thing is, chronic diseases like MS are, well, chronic. We have them forever. After the first few months, the get well cards and casseroles fizzle off, while we’re left with a nonstop stream of uncertainty and change for the rest of our lives.
Now, we don’t need a lifetime supply of casserole to help get us through it. Not at all. In fact, and I certainly can’t speak for everyone with a chronic condition, but I definitely don’t want to be the center of attention. Quite the opposite. I want to just go back to feeling normal and blending in again. However, I will let you in on a little secret–three simple words that will turn your loved ones who are afflicted with a chronic illness into absolute mush, three words that are more valuable than all the get well wishes in the world:
“How are you?”
I’m not referring to the how’s it going?s you mutter under your breath while passing your coworkers on the way to the water cooler, not really bothering to listen to the response. I mean a pure, genuine, tell-me-because-I-really-want-to-know “How are you?”
You just don’t know what a person is going through on any given day (and of course that goes for anyone, not just those with an illness). Maybe whatever is eating at a person at the precise moment you reach out to them isn’t even at all related to their health, as it wasn’t in my case yesterday when my phone rang.
Never underestimate the impact of your words. Your “How are you?” or your “You are so beautiful and you need to hear that” (because, dammit, you are) can and will change a person’s day, likely more.
And to the voice on the other end of that unexpected phone call, you know who you are:
I needed that. Thank you. I love you.
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