Why I'm Sad (but Also Relieved) That COVID Canceled Christmas Dinner This Year

Christmas is always a troubling time of year for me. In 2009, a few days before Christmas, I was hospitalized with Bickerstaff brainstem encephalitis (a variant of GBS). My parents had to pack up all the gifts and food (we were all going to their house in Victoria, BC for the holidays that year) and come to the mainland, so everyone could be near me. Christmas day was a bit somber as my family gathered around my hospital bed and tried to muster up some cheer. They returned to my sister’s house to have dinner, while I lay holding my husband’s hand, feeling guilty, frightened and worried. A few days after that, I was in a coma.

That was 10 years ago, and while I am now alive, happy and living relatively independently, Christmas still fills me with more dread and anxiety than joy and anticipation. But it’s not because of past trauma anymore. It’s because of the challenges I know I will have to face just to spend time with my family. The brain injury and bed-confined hospitalization left me disabled and requiring a power wheelchair for mobility. As much as I adore spending time with my loved ones during the holidays (especially those I rarely get to see), there are many challenges that go along with it. Let’s take a trip back to last year…

My sister is hosting Christmas dinner again, and I am invited, of course. As usual, I am excited to spend time with my family, but feel the rumblings of anxiety in my belly. My sister’s home has a winding set of stairs from the front door to the living area. Obviously, I can’t take my 450 lb. power wheelchair with me, so Hubby is going to drive. He eases me into the car, and leans over me to fasten my seat belt. I shift around awkwardly to try to get comfortable for the hour-long ride. Because of the kyphoscoliosis, I twist/lean to the left and my head falls forward. I can barely see over the dash, and trying to hold my head up and turned to look out the window is uncomfortable. I spend the drive staring at my lap, stealing glances out the window, and shifting periodically to prevent myself from sliding in my seat.

We arrive at Sis’s home, bathed in Christmas lights that create colored gems in the leftover icy snow. There is no spot in the driveway for us, so we park on the street next to the curb. I feel the beginnings of a cervicogenic headache in the base of my skull and my lower back aches slightly. Hubby unlatches my seatbelt, helps to haul me out of the car, and steadies me as I try to find my balance. We squeeze past the cars in the driveway and enter the front door.

“Hello!” I call. No answer. Sounds of conversation and cooking waft down the stairs.

The staircase is narrow, so I grab hold of the rail and place my left foot on the first step, as Hubby plants his hands on my backside to prevent me from tipping backward. I push off and place my right foot next to my left. Next step. And so on, step by step we go up. At the halfway landing, the dogs realize there are new arrivals, and come rushing down the stairs, barking happily. My heart jumps into my throat, and Hubby’s fingers dig into my buttocks. We freeze, and I grab the rail with both hands. Tails whack my legs, noses dig into my crotch, doggy paws stomp my toes. I wish I could snuggle and kiss them right then and there, but it will have to wait until I’m seated.

“Will someone get the dogs, please?” my husband calls. No response.

“Get these dogs!” he shouts, “Jenn is here!”

A couple of sets of feet show up (I don’t know who they belong to, as I’m staring at my own feet, ordering them to stay put), and the dogs disappear. We shakily continue our way up the staircase until we reach the top. I stop to take a breather. Bodies surround me, and I put my arms around each, hugging fiercely and exchanging happy words. A wave of love emanating from everyone washes over me.

I am ushered to a big soft chair in the corner, and I collapse into it gracelessly…and immediately begin to slide on the smooth leather. My panties crawl up my backside. A million suggestions on how to make more comfortable erupt in all directions. Hubby gets me a pillow and arranges it “just so” behind my back. The dogs rush over, and I joyfully let them put their front paws on my lap so I can easily stroke them and receive sloppy kisses in return. I am asked what I would like to drink, and whether I need a blanket. I answer, and a light fuzzy blanket and a glass of red wine are delivered to me. I settle in.

I wish I was in my wheelchair. The seat is designed for my posture and it has a tilt function so I can take the pressure off my back and neck. Trying to keep my body upright and straining to look up at those I’m conversing with is tiring and uncomfortable, but I’m thoroughly enjoying the company and cheer. And now I have to pee. Hubby has left to grab a cigarette, and I can’t get out of this low chair. Besides, I’m wearing pants, which means I’ll need help. I see Hubby appear in the kitchen and call to him.

“Need help, Aunty Jenn?” my teenaged nephew asks.

“Uh…yes…but, um…could you get Brian?”

“I can help you,” he offers.

“….I have to pee…”

“Uncle Brian!” he shouts, “Jenn needs you!” and rushes away.

Hubby helps haul me out of the chair and follows me to the bathroom. As we enter, my cousin walks by.

“No quickies!” he jokes. Someone laughs. So much for being discreet…

Business aside, I return to my designated chair. Dinner smells and sounds of laughter waft from the kitchen, the inevitable gathering room of all our family functions. One by one, people get up from the living room and drift into the kitchen. Before long, I am alone with my hubby by my side. I do not follow everyone in because I cannot stay on my feet comfortably for long, the bar stools that line the island are too tall, and the tables lined with chairs are set up in the dining area so it’s too crowded for me to navigate safely. Hubby looks at me and smiles. He gets it. He understands why I’m suddenly sad.

Dinner is about to be served. My husband helps me out of the chair and I make my way into the kitchen. I am the only vegan, so my sister heats up the leftovers I brought with me, and I put the finishing touches on the salad I brought. Time to eat: the toughest part of the visit for me. If I had my wheelchair, I would park on the corner of a table out of the way, tilt my seat back a little, and put my plate on my lap. This way, I can eat and converse comfortably, and stay at the table for as long as everyone else.

My husband steadies me as I lower myself into the hard wooden chair and lean back. My backbone grinds painfully into the back of the chair, so Hubby finds me a cushion. The cushion pushes me forward, which makes my head dip forward further, which means looking at my dinner companions will be almost painful. Because of my posture, the table comes up a few inches higher. I have limited mobility in my shoulders, so it’s a bit of a strain to feed myself in this position. I feel like a toddler at the “grown-up” table. Hubby prepares a plate for me and himself, and sits in the chair next to me.

It’s hot in here, and the seating is tight. Conversation and laughter fill every space in the room, and the lights burn brightly overhead. Elbows bumping, knees rubbing, dogs sniffing, clattering utensils, and the cacophony of perfume, cologne and food odors overwhelm me. I concentrate on my meal, eating quietly and quickly, soaking in the intense feelings of joy and comfort emanating from my loved ones. I am happy they are happy.

The headache has grown into my jaw and temples, my back aches, and there’s a crick in my neck from straining to look up at people. As soon as it is polite to leave the table, I ask my husband to help me back to the living room. Before I sit down, we decide to go for a cigarette. There is an oversized step off the back door to get to the deck. My husband steadies me as I shakily step down, then deftly catches me as I miscalculate and pitch forward. He sits down in a low deck chair, but I remain standing because sitting down means having to stand back up, and I just don’t feel like tackling that. It’s freezing out, which causes my abdominal spasticity to flare, so we smoke quickly. Then, with great effort and an alarming crunching sound from my knee, we climb the giant step back into the house. Hubby does bathroom duty again (without audience this time) then helps me return to my living room chair.

Eventually, people begin retiring to the living room, and I am re-engaged in conversation again. But I am tired now. It’s only been a few hours, but it feels like I’ve been out all night. It’s no surprise that we are the first to leave. I try to be patient during the seemingly endless parade of hugs and kisses and parting words. I don’t want to be rude, but I’m just so exhausted! Finally, I’m free to descend the staircase (backward this time because it’s too dangerous forwards), squeeze past the cars in the driveway, awkwardly navigate the slippery curb, and lower gratefully into the cold passenger seat for the long ride home.

By the time I get home and Brian escorts me inside, my whole head aches miserably, my back is on fire from neck to hips, and I’m wracked with spasticity. I sleep like the dead and spent the entire next day parked in front of the television in tilt, rising from my chair only to pee and reheat leftovers.

I love my family dearly, and they have all been tremendously supportive of me during my illness, recovery, and new life. They always include me, and most times, they do their very best to consider and accommodate my needs. They understand that I face challenges daily, that I live with chronic pain, and that attending family events requires sacrifices from me. But, I don’t think they fully understand just how challenging it is. How could anyone understand if they don’t experience it themselves?

It has been a rocky year, and everyone’s lives have been impacted by this pandemic. The elderly and disabled communities have been hit particularly hard. Personally, it has taken a toll on my mental health and ability to cope with chronic pain. We are all tired, worried, lonely, and bored, and it would be nice to be able to enjoy the company and holiday cheer of our family and friends. I’m sad that I won’t get to spend time with the family I rarely see. Yet, at the same time, I’m relieved I won’t have to face an evening of pain and struggle, followed by a day of uselessness.

This story is not meant to highlight all the things my family might have done “wrong,” or to complain about having to make the effort to see them. I will willingly make that effort again and again in order to spend time with them! It is about sharing the reality of that effort so it is better understood. It is about knowing there are many other people who experience similar challenges and reminding them they are not alone. And it’s about trying to understand my own weird guilt-laden relief about family dinner being canceled during this “pandemic Christmas.”