Tunnels
We made it to 2021.
No matter who you are or how you move through life, these are trying times. Even if denial is your go-to coping strategy, it’s become increasingly difficult to avoid the discomfort. Loss is everywhere. When we hear that someone we know who has it or was hospitalized or has died from COVID-19, we are reminded. When we notice we have a dry cough, feel nauseated or feverish. We feel it. That pang of panic. The one that immediately transmits from the gut to the brain the dreaded, acutely unanswerable question: Oh no. Is it happening? Do I have it?
For most people, this is a new, very Covid-specific phenomenon. But it’s the emotional landscape I’ve been navigating ever since my HIBM/ GNE myopathy diagnosis. Fear and helplessness. Overwhelming mental fatigue. Ongoing attempts at reassuring myself it’s going to be okay, despite the consistent threat and actuality of living in a body whose muscles are increasingly less okay; never knowing when, how quickly or how severe the damage will be or worse, the toll it will take on my psyche. Never being able to feel truly and wholly carefree.
This pandemic is currently in a brutally dark phase. We don’t know the extent of the devastation ahead nor when it will come to an end. But as the vaccine rolls out, the light is ever so slowly becoming brighter. Glimpses of what life might look like when it’s all over are slowly coming into view.
For those of us living with chronic, progressively debilitating diseases with no treatments or cures, our tunnels remain long and dark. The losses will continue as they always have. The same anticipatory anxiety and feelings of vulnerability will linger long after this pandemic is over. Possibly for the rest of our lives.
When I was first diagnosed, I was told the end was in sight. That was 15 years ago.
Luckily, I don’t live in anguish all the time. I’ve worked hard to learn how to create my own light. But the first few months of quarantine really tested my resilience. I learned the excruciating way that abruptly discontinuing physical therapy, massage and exercise was not an option for my body, pandemic or not. I couldn’t move without pain, I couldn’t stand up straight and I relied on a wheeled office chair and a walker to get around.
Then, a couple months later, I emerged pain-free and into one of the most magical nights of my life, celebrating my son’s “car mitzvah.” (see post here). The residual feelings of pure joy and gratitude from that experience sustained me for a long while. After that, between remote school starting, work being busy and consuming the news non-stop in my down time, my mind was sufficiently distracted. I rarely had time alone. And without realizing it, because I wasn’t heading into the (often inaccessible) world on a daily basis, I wasn’t experiencing the usual angst and frustration that accompanies such simple acts as stepping up onto a curb, pulling my car door closed or walking my kid across a soccer field. I was doing well.
That changed over Thanksgiving. After taking all the possible precautions, my boys went to spend some time at their grandparents’. More than ever, I was looking forward to the down time with my husband and the freedom and relaxation of being temporarily kid-free. Instead, within hours of being home alone, I was greeted by an unexpected and unwelcome quiet in my mind. I felt unsettled. Slowly, I started to hear the noise that had been drowned out for so long by the more immediate stressors of living, working and raising kids during a global pandemic.
All of the intimate, quiet losses I’d suffered during the last 6 months of the pandemic started yelling at me, demanding to be felt and grieved. Like the time I was pouring a large bottle of cold brew coffee into my cup and it spilled everywhere because my wrist gave out. Or when I went to grasp onto and drink from my full 1 L Nalgene bottle and I didn’t have the strength to lift it all the way to my mouth without assistance from my other hand. Or when the TV remote dropped on the floor while I was lying on the couch and after leaning down to pick it up, I could barely lift my head back up onto the cushion. Or when I went to put on a button down shirt for the first time in 9 months and I literally could not button it. Not a single button. No matter how I contorted my weakened fingers. No matter how many minutes I spent trying.
Foolishly, I thought I had deftly filed those losses away as they occurred. But I know better. Those moments are so terrifying that even when I try to slip right past them and keep them to myself, they leave a mark on my amygdala.
So I sat in my quiet house and I felt angry and sad. All I could do was cry.
I cried a lot that week.The timing was suboptimal, but this disease doesn’t let up. I can’t afford to be irresponsible when it comes to my mental health. I would be such a sad person if I didn’t cry. Staying in denial for too long would only increase my risk for injury and potentially more disability. I must be alert when loss comes. I must stop, stare at it, hold it, grieve it and ultimately find the strength to let it go. I must be mentally prepared for the reality that I may be saying good-bye forever. In these moments, I must not try to talk myself out of the fact that what is happening is real. I can only talk myself into accepting what is true, if I am to continue to emotionally survive life with this disease.
A few weeks ago I had two medical appointments I had to cancel because of the surge. One was to finally start dealing with the worsening arthritic- like pain and swelling in the joints of my much weaker left hand. The other was to get fitted for a walker. Not because I need a walker full-time just yet, but because this is my process. If I get it before I need it, I can ease in, reminding myself it’s still a choice, not a need. Then, once I inevitably must rely on it, I will hopefully have become somewhat desensitized to the emotional discomfort it brings. Not the discomfort of the walker itself as much as its unwelcome reminder that no matter how much I exercise, how healthy I eat, how hard I work to find joy, I remain at the mercy of this disease.
It didn’t feel good to make those appointments. Doing the hard work of showing up and confronting uncomfortable truths in real time rarely does. But avoiding the discomfort inevitably feels even worse and almost always comes at a higher price.
This pandemic is uncomfortable in every and all ways. You can choose to try to bypass, distract from and hold off on feeling all the feelings from now until it’s over. But I don’t have that luxury living with this disease. I can’t just choose to temporarily emotionally survive until it’s over. I must continue to find ways to live in it, fully and wholeheartedly. I must continue to trust that growth will follow discomfort and that adaptation will follow loss. For me, it’s the only way through.