First off, let me just begin by stating that I am THE WORST person to comment or even approach the topic of suffering gracefully. Most days I look like a hermit crab, hunched into the fetal position like I’d like another shot at being birthed, and, if I’m not too nauseated, I try to read. In fact, I read a LOT. It is unfortunately one of the few things I am capable of doing at this point, aside from the much needed, but challenging job of being a private teacher.
I’d like to speak a little on this point. Teaching, which I have been doing for over 20 years, has been one of the greatest joys of my life. I’m in a unique position where I can pass down the best of what I have learned and, using my own intuition, improvise solutions to problems. With children!! How cool is that? I also perform with a couple groups, but have to modify what I do by sitting on a stool in order to stave away the omnipresent nausea. It’s not ideal, but damn if I’m not grateful as all hell that I can do at least that.
As I’ve stated before, due to my chronic Gastroparesis, I’ve lost 27 students in the last year. Those were 27 students I bonded with—that I developed a loving and trusting repore with—but more than that, those are 27 little beings I was GIVING to...all that I had, like a sponge squeezed until it was dry. I gave until I could hear my heart sing with gratitude, and even with occasional challenges (“Alex, take your hand out of your pants so you can play piano. M’kay?”) I was and am genuinely happy with this important work, but I mourn the students I will never see again. Will they quit piano? Will they study with another teacher (please please please) or will their resentment over their negligent, unreliable teacher somehow train them to evolve into sociopaths and murderers? How should I know what their fates will be?
So, whatever, that sucks....a statement that naturally leads me to talking about the main topic—living gracefully. My talented colleague Alex Grabarchuk (dear God, let me have spelled her surname right) wrote something very profound on Facebook today about the importance and substance of life lying in the act of GIVING.
This is especially challenging when your physical health requires you to take it easy for the first 6 hours of the day. And frequently, even longer than that. I regret all the times I rejected my dad’s offer for lunch because I was too nauseous. I love him, and I have rejected several invitations to family events because I just didn’t feel up to it. However, I know in my bones this condition can’t last forever. And the only way I can tolerate it is making peace with it. “Hi nausea, nice to see you again. Let’s try to get along today.” This befriending of my pain has completely changed my life. Granted, I am still basically harnessed to my bed, but I try not to fight with my body, which has no fault, and is simply trying to be a body.
And the most pressing thought on my mind is: “How can I contribute to society if I’m in bed all day? How can I feel my life has meaning and purpose?”
And to that I say: Do what you can. Know your limits. Be transparent with your colleagues and let them know you are doing your best, but may not make it. This is, most likely, the most difficult aspect of being sick.
At one point, I was Ms. Reliability. I still to this day show up 45 minutes to an hour to a gig. I don’t say this to conflate my image, but merely to convey the depth of my commitment, even in spite of the pain.
I have a message embeddded in all this, and my greatest hope is some people will listen: your health is the most important thing. If you hate your doctor, go to another one. And then another one. Take the advice that works and leave the rest. Doctors are floundering for answers just as you are. And please, don’t give up the fight. Even if, like me, you cry every single day, be a warrior on your own behalf. Fight for what you need. If something makes no sense, discard it and experiment until you know what works and what doesn’t.
And, if you can manage, aspire to suffer gracefully, with wisdom and acceptance of your own mortality—with gratitude for what you have, because I guarantee if you can’t find anything to be grateful for, you’re not looking hard enough. Be kind to yourself. Accept that you are in a different stage of life and that illness is just a blip rather than a sentence. My heart goes out, sincerely, to every person who suffers from chronic pain. You are amazing, and your attitude alone can change multitudes.