Last December, I was diagnosed with Transverse Myelitis. It’s basically Multiple Sclerosis, but without the publicity (bad joke, but it’s somewhat true). As a Jewish spiritual leader and as a patient with a chronic illness, I’ve learned a few things I’d like to share.
It’s OK to feel bad
You have earned the right to have crummy days. In my case, it’s when one side of your body is hot, the other is freezing cold, and getting in the shower hurts.
Those days aren’t every day, but when they do happen, you have the right to call a “time out” on life and blob out in front of Netflix.
When that happens, I highly recommend reading the book When Bad Things Happen To Good People by Rabbi Harold Kushner. His book is almost a cliche at this point (I can hear people saying, “really Patrick, the book that every hospital chaplain gives out?) but the reality is that it’s a great book and will help you get some perspective on your pain. Hey, not everything has to be super original all the time. If it works, it works.
Earn your good days
There is a natural drive in all living things to earn their keep in this world. Scientists have even discovered that dogs, if given the option of earning a treat versus being given one for no reason, will instinctively react in favor of earning what they are given than simply getting a handout.
This may sound crass, but I think it helps to earn your “good days”. If you are having a good day, then do something good for someone. Give a little charity to one of your friends who pests you on Facebook about their worthy cause. Take time to sit with someone who is in worse shape than you. A shameless plug, but perhaps you can volunteer at OneShul (after all, you don’t even have to leave your bedroom).
This isn’t quid-pro-quo. You can’t do something good, then magically have God do good things for you, but in the spirit of gratitude, take a moment to recognize that you have the ability to make a good day great by doing for others.
Low information dieting
This was probably the smartest thing I did when I got sick. I took a serious inventory of the number of blogs, newspapers, social media sites and TV shows I was bingeing on, and I stopped. I tried to get off Facebook, but sadly it didn’t work (it was a major set back in communicating with the PunkTorah community, so I hopped back on).
Another thing: don’t research your illness. I know that message boards about the amazing discoveries coming out of [insert country you are not familiar with] are tough to pass on, but you’re better off figuring out how to get the best healthcare where you are, than to assume that every drug trial or health fad is going to cure you. Find a doctor who is smart and will take care of you, and leave it to her.
Join an online support group
I joined one. It’s been incredible. It’s the only social media I added to my information diet. There are plenty of them out there. Find one and stick with it. And although PunkTorah is not specifically a support group for Jews with chronic illnesses, we’re here for you if you need us.
Written by Rabbi Patrick, director of PunkTorah