1. Putting on blush – I am very pale, but oddly enough I have always gotten compliments on my skin. Evan says that’s because my skin is “porcelain.” Whatever the case, I used to put on very light pink blush. My mother taught me well – used it only on my cheekbones and blend, blend, blend! I liked the way it made my skin glow, but more than that, I loved the way the makeup brush felt on my skin. It was the most silky smooth sensation I have ever experienced before or since
2. Chopping vegetables – I know this one is truly bizarre, but we had the same wood cutting board for at least 10 years, and I absolutely loved it! I liked the sound and feel of cutting through the thick stuff like carrot, zucchini, and onion. I was actually the designated onion chopper because, while chopping an onion made Evan weep, it didn’t affect me at all. I’m leaving out fruits. I’m so rude! My favorite fruits to chop were “donut” peaches and gala apples. That cutting board made it through seven moves!
3. Changing radio stations in the car – I realize this one will make me seem ancient because now everyone phones that play music, but we didn’t have any of those things when I was growing up. The best we had was a CD player and a giant book of CDs. Who was in my book? Everyone from Frank Sinatra to Evanescence, from Opera Babes to Pat Benatar. There was a certain magic to the gamble of scanning my favorite stations and either finding nothing, or finding the perfect song I didn’t even know I needed in that moment. I miss the feel of pressing those six presets and waiting for enchantment.
4. Writing with a ballpoint pen – I actually did so much writing with ballpoint pens that the side of my hand was almost constantly stained with blue ink. I refused to use a red pen when grading quizzes, tests, and essays because it was, in my opinion, too aggressive for assessments students were already nervous about. I also used the deliciously smooth gliding ballpoint pens for grocery lists and “to-do” lists in my planner. I always loved checking items and tasks off my lists. I felt so accomplished, and the ink stains on my hand were proof of organization and hard work done!
5. Grocery shopping – The possibilities seemed endless! I loved shopping at Trader Joe’s especially so I could surprise Evan with sushi, shu mai, gyoza… The only thing better than shopping without him so I could surprise him was shopping with him. We would hit produce first. My favorites were strawberries, gala apples, zucchini, sweet Vidalia onions, tomatoes, sweet potatoes, and broccoli. Our shopping carts were rainbows! Then we would split up to conquer the list, crisscrossing as we shimmed through the tiny, packed aisles. We would meet up at the cheese and hummus station where Evan would grab the things I was too short to reach. It was always an adventure!

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

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…”

“Ireland?”

“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