Why not try leaning instead?
How are you doing? We’ve passed the one year mark for living in a global pandemic and I don’t know about you, but I have been feeling very alone and struggling to keep my anxiety down and my motivation up.
I haven’t written much here about life in the pandemic. Mainly because I just felt there was enough being written and shared everywhere else that what would I have to add to it.
We have been very fortunate health wise. Financially we have been okay: the Crone is retired so receives a pension, and the maiden is on a disability. While I had to resign from a job just before the pandemic because it was impossible to work full time and have a dependent daughter, I was fortunate to secure a part time contract – work from home – helping an FASD educator with administrative and social media duties. I love both the job and the ability to work from home. It works for our current situation. We live in a small town, so case counts were never dangerously high or streets crowded. We are mostly homebodies, so when things shut down initially, it actually removed a lot of pressure. It was a big sigh of relief.
And while I appreciate the privilege we have, to be safe and relatively secure, it didn’t mean we weren’t worried or affected. While it was exciting to see people coming together to support each other by offering drive by birthdays and graduations, safely distanced neighbourhood singing or dancing block parties, signs in windows, or on sidewalks in chalk, cheering on front line workers, businesses offering free courses or virtual activities and trainings, funny videos on social media or memes relating similar experiences…. it seemed to bring us all together. At first.
But then we started to see the disparity between those that could weather the storm. And those that couldn’t. We saw the disregard for other humans in how our seniors and individuals with developmental disabilities and other marginalized groups were being treated. We saw divisions between family and friends and strangers – the ugly side of humanity started to peer through the ever widening cracks. Social media exploded with judgement and text fights even on craft groups!
As time wore on, anxiety and depression and fatigue started to rise. The opening and closing of economies and cities and what you could do and couldn’t do were changing. For us, even though we were homebodies, cabin fever did move in. The Crone had no outside interests, but she did go out to shops once in a while. The maiden did have a couple groups she went to, which shut down. And I couldn’t go out to the library or pursue any hobbies outside of the house or interact with others. I usually connect with others at workshops and conferences. They were cancelled. Depression started to set in. People were realizing that we were going through a collective trauma. And sometimes despite our best efforts and desires the motivation or ability was just not there. By September I was dropping out of online activities and commitments. My job, my dog, my daughter and the moon sustained me.
But I also started to see how truly alone we had become. How much we had isolated ourselves. I had moved to a small community to keep my daughter safe, but it became more isolating as her behaviour separated her from the kids in town – and me from creating connections with the parents. Because no one here understood FASD. They saw behaviour, not symptoms.
I watched friends online post about how they couldn’t wait to get back to normal to hug and gather with their friends and family. And I thought wow, we have no family here. All our family is in England. I always wanted us to move back to England when I was younger, but the Crone said she’d never go back. I tried once when I was a young adult … but I couldn’t do it all alone. And I felt like a stranger around my English family – because I was. I have only come to realize as I get older how much family really means … and how I wished we had never moved away from every relative we have. We keep in touch through Facebook, but it’s not the same.
Having a child with a disability that most people misunderstand or don’t recognize puts strain on family and friendships. I have one brother in Canada. He and his wife never accepted my daughter and in fact, told the Crone she was not welcome at certain family events. I moved away from all my friends for a career – and eventually, most of those friendships dissolved or became strained for various reasons. Some related to distance, some to not understanding, some to different priorities and some because of my pure exhaustion. I do keep in touch with some through Facebook but we are no longer close as we used to be. And that makes me sad. There are many reasons, but that’s another post.
I made some friendships with other caregivers of kids with FASD. Mostly online but they at least sustained me. For many caregivers that is our reality. We are alone. Virtual support is all we have. It may have been in person at one time, but even Zoom is hard to continually connect through. It has opened up a world of possibilities, but it isn’t easy or accessible for everyone.
I saw the above quote and it hit me hard. And that’s why I decided maybe I should write this. Maybe someone out there is struggling. Maybe someone out there doesn’t have many friends or family and any connections they may have are no longer there – if they ever were. Maybe there is no friend calling in to check on you right now. Hang on. Just a little bit longer. This will end. I had hopes that things might change. As we saw the pivots that businesses and services did to accommodate the new reality. Some benefited those of us looking after complex kids. I hope some of that stays. I hope that the world is a better place at the end of this.
I will share in my next post some of the things that I did do over the last year to help cope. And maybe you will be inspired or find something you can do to cope until we make it through this year.
Maybe 2022 will be our year.
Here is the follow-up post: 9 Ways I Navigated the Pandemic