There is no guidebook on becoming disabled before retirement age. There was no plan for me beyond simply overcoming my condition; we knew it could land me frequently in the hospital, and it did: nine times in more than five years with frequent severe illnesses since I was 26. We were always able to bounce back and continue on as if it was a rare occurrence in my life, one that could kill me but rare.
Everyone is asking about Hanukkah – and I lie to them. I have an electronic menorah I used to light up each night because I almost burned down my apartment once. Why? I forgot that you shouldn’t microwave tin foil. The result of neurological issues, you forget small, life-endangering things. I am afraid to go near my stove and stick to easy meals made when I have the energy. It doesn’t mean I don’t feel the holiday, and I don’t miss it. My childhood was full of gifts stacked high for every Hanukkah and we would celebrate. But I am an adult now, so now it is just lights and a card, an e-card since my father lives over an hour and a half away.
But when I am healthier, I’ll have strings of light and blue and a Hanukkah bush to outrival anyone. Yet people ask me how my Hanukkah was. I say good, not willing to confess I woke up each night intending to log in to the virtual zoom for my synagogue but had no energy to. I am deaf, I am tired and I can barely read a book. Yet I have Hag Sameach, part of JFCS, coming every year and I open those gifts even as a 30-year-old adult. I know my life won’t always be this way – unable to celebrate the holidays but when you ask me if I am celebrating, the only answer I am afraid to give is the real one: I am too sick.
I am too sick to read the Hebrew prayers, I am too afraid I’ll burn down my house. I am too busy with doctor’s appointments. I am busy trying to be an attorney as I advocate for my own rights under the Americans with Disabilities Act, to make sure all my medical documents are together so I can appeal to get my long-term disability back that I lost because records were requested while I was having my 15th brain surgery.
Do I tell them it is not my first Hanukkah spent in a hospital and my miracle is I am more steady and on the rebound?
Do I tell them I am astounded and grateful for my friends while I fight my personal battles? Do I tell them I am still strongly Jewish and will never give up? Do I tell them how exhausting it is to have to fight illegal billing practices because I am deaf? So I can’t light a candle, and I can barely drive to my doctor’s office.
So, I stare at the menorah given to me, and I am worried about lighting it. I am worried I’ll forget I lit It and see people’s lives in danger. So I don’t. I am grateful I still remember the prayers and I am grateful I will celebrate one day but I wonder if they’ll judge me for answering: I am just trying to survive.