I awoke from a fitful sleep sometime after 6:00 tonight and went outside for the first time in days. The cold was surprising and there was an ache in my lungs as I inhaled the painfully fresh air. I squinted hard against the sun, which was still high in the sky, though descending quickly, preparing to be engulfed by the impending dark.
I woke up because the blinds were knocking back and forth in the open window. It was gray and dim because it was all cloudy outside. I had light blue sheets on my bed, but in that light they looked different. Even the braided ficus in the corner of my bedroom looked droopy and depressed. It was one of those days that threaten rain without making good on it, and it perfectly matched my stabby mood.
We’re in the middle of a global pandemic. Not really a sentence I ever thought I’d write, but here we are. Our state is under shelter-in-place orders. My last night out in the world was Saturday, March 7th. I’d turned 48 the day before, and Aaron and I went out with a group of friends to Twin River Saturday night to see an 80s band called Fast Times. None of us had any idea that would be our last night out, the last time we’d be able to see each other for months.
What started out as kind of an interesting, if scary, experience, is quickly becoming a soul-destroying suck fest. I sit in silence and listen to the neural hum of time travel. The world around me slows; my mind speeds through at a supersonic rate.
I’ve been struggling the past few days with the enormity and seeming endlessness of the situation. There are certainly levels to my despair, and I’ve been trying to rein it all in and stop my head from spinning. The global toll this virus is taking is devastating, of course. What it’s doing to our country—both in terms of loss of life and in the absolute undoing of civility and compassion as it has become a disgustingly political issue—is just heartbreaking. The utter absence of leadership on a federal level has fractured this country and the consequences are becoming dire. I wonder what our world will look like on the other side of this.
On a far more personal level, I’m just sad and frustrated and angry and so over it. I yearn to get back out into the world. I feel a desperate sense of urgency that grows greater each day of this lockdown as I begin to mourn the loss of time. I’m terrified of the virus. It’s not something I care to get or to bring home to loved ones. But beyond that, I’m frustrated by the precious time that is slipping away, the experiences lost, the memories that won’t be made.
My father was diagnosed with pancreatic cancer last May. He completed treatment the last day of March and his first scan came back completely clean. We have been holding our collective breath since the day he was diagnosed, not knowing what each day would bring. I was diagnosed with ALS almost 2 years ago, which also brings with it an uncertainty of what each day will bring. We’ve lost a lot of time worrying over the last year and this summer was going to be one for the books. We had plans for pool parties and lots of time with friends and family sitting around the fire pit, music playing, wine flowing.
My husband and I had planned to take our son to Washington DC and New York in April. We wanted to go to Disney in the fall and finally get to experience Galaxy’s Edge. We had tickets for several concerts this summer that have already been canceled. We were supposed to represent ALS ONE at the Red Sox ALS Awareness game on April 5. It would have been the first game I’ve ever gone to with my son and I’m crushed that it didn’t happen. My 30th high school reunion was being planned for July, but that’s now on hold. My Gang of 3 and I were planning our second annual fundraiser for ALS ONE. We were so excited to start our weekly planning meetings.
As I think about all the experiences we were going to have this summer, I can’t help but think ahead to next year. Will I still be able to do these things next year? Will I still be mobile enough? It’s a thought I don’t let fester, but I’d be lying if I said it doesn’t creep in and try to take hold.
Well now. That’s enough time venting. I needed to purge those thoughts. I’ve done that and now it’s time for the rainbows and unicorns portion of the show. Let me tell you what I’m doing to shake off the negativity.
For one thing, I do believe everything happens for a reason. I don’t pretend to know what those reasons are, but I have faith that it’s all part of a larger plan. To that end, I’m a firm believer in looking for the silver linings of even the most menacing clouds. The Earth needed a break from the destructive nature of humanity. We’ve been put into time-out to think about what we’ve done while the world takes time to heal. While I do feel sad about things we’re missing, I also embrace the opportunities this situation affords us to stop and appreciate what’s truly important.
The chaos of what’s happening in the world right now has made it possible for me to spend cherished time with my family. My son is out of school until September, my husband is working from home most days, and the usual frantic pace of our lives has slowed to a point where we can just enjoy the simple things. Certainly it’s not always easy, especially since the weather hasn’t been all that nice. But we have more time for things like family movie nights and games and puzzles and cooking together. And when the weather does cooperate, we get outside and enjoy the warmth and the sun and the new life spring brings with it.
One beautiful result of quarantine is that as we’ve taken the time to get out on nice days and go around the neighborhood, we have met neighbors among whom we’ve lived for 13 years and never really knew. We have developed some wonderful new friendships with the people who live closest to us, and it is something I am truly grateful for.
I have become very mindful of the importance of self-care over the last couple of months. I can get very overwhelmed when I keep the news on too long. I obsess about the latest information from the experts, the increasing victim count, the talk of the possibility of this lasting for months if not years. One of the more depressing scenes I saw was a protest in some state or other where a woman was holding a sign that read “Sacrifice the Weak.” Wow. That’s become an actual argument: the economic cost versus the human one. I count myself among the weak that she wants to sacrifice so you can imagine which side of the debate I come down on. And while I absolutely empathize with people who have been crushed financially because of the country’s closure, I’m not sure I understand the argument that the elderly or the vulnerable should be sacrificed to save the economy. Isn’t there a way to do both and not lose our humanity?
Spending too much time wallowing over the nature of things is unhealthy. So I have lately been turning off the news and focusing on the good around me. I look out my window and see the yard sign placed by a member of my ALS ONE family shortly after this all started. I scroll through my text messages sent by friends and family asking if we need anything at the store. I recall the drive-by visit from my best friend, Alana, where I sat on my front step and she stood by her car and we just made each other laugh for 20 minutes. I look forward to “Friends and Family Fridays” when I have video chats with my cousins and any number of friends.
I’m making an effort to take more time for prayer and meditation each day. I make myself fruit smoothies each morning and make sure I exercise and stretch. I read more, and I’m committed to finishing some writing projects I’d started some time ago. And though we may not be able to have the fundraiser in September that we were planning, I am going to brainstorm with my Gang of 3 and try to think of other fundraising ideas. Giving back gives me a sense of purpose. We’ll just have to get a little creative.
So while this pandemic will surely slow down my progress on my 50 Before 50 bucket list, I will embrace and appreciate the blessings in my life. I will find meaning in the stillness and look forward to a slower pace once the universe releases us from detention.
Rise Against ALS! 