By Rachel Doboga
“We used to laugh under the covers, maybe not so often now…” – Dave Matthews Band
“Alright, I chose Italy. Your turn. Where do you want to go?” Evan asked.
“Guess!” I tease.
“There are so many places on our Bucket List. Give me a hint.”
“It starts with I…”
“Not even close.”
“Just tell me!” Evan begs.
“India. I have it all planned. We’re going to go to Rajasthan, northern India so we can go to the camel festival in the desert and see the stars. Also the Taj Mahal and a tiger safari.”
“One last trip before kids?” He says with a big smile.
“Yes,” I say with a matching smile.
8 years later…
“I had a nightmare that I found a cure, wove it into a bracelet, and gave it to you but you were so angry that I need so much trach suction that you tore it up, and it became bloody,” I tell Evan.
He comforted me, but I can’t shake it. We also can’t shake a dream Evan had a few months ago. I was cured and he was so excited and happy, but then I kicked him out. Obviously I would never do that – Evan is my world – but it is still haunting.
It used to be just the two of us, playful and relatively carefree, but then a third party joined our relationship – ALS. Being in a relationship with ALS requires absolute trust and unity, so the tougher things get, the more we pull together.
I do have a lot of guilt about everything Evan has had to give up for me. We never made it to India and worse, we never became parents. However, he says he’s lucky to take care of me. Clearly I am the lucky one, though. I consider Evan the Universe’s way of paying me back for ALS, but it falls short because I can’t touch him. I would give anything to hug my husband.
When our beloved dog Malka died in front of us on September 26th, Evan ran over to me and hugged me, sobbing. It was all he could do to hold me upright because, as a quadriplegic, I am totally limp. I couldn’t hug him back. To this day, I wonder if holding me was enough for him, or did he need my arms around him? I’m not brave enough to ask.
During my various hospitalizations I have learned one thing for sure, though. Watching Evan hover over the hospital bed, rattling off my extensive medication list and three allergies (macrobid, zoloft, and above all, morphine) and running my oxygen when the hospital is short-staffed, I have seen the anxiety and fear in his eyes. I know now that the only thing worse than having ALS is watching a loved one suffer through it.
* I can’t post comments or reply to them, but I can read them and I love them. Keep writing!
If you have fond memories of Rachel as a teacher in her life before ALS, or if a post on this blog has ever moved you, please consider making a contribution to Rachel’s out of pocket caregiving fees, medical expenses not covered by insurance, and transportation costs through Friends of Rachel. From your PayPal account you can donate to FriendsofRachelDoboga@gmail.com