Riding the COVID wave: What extreme care taught me about control.

The novelty of COVID isolation is wearing thin. We’ve baked enough bread, watched enough Netflix, and we desperately want to return to our daily lives where we feel we have some measure of control.

At the moment many of us are struggling with an utter loss of control in our daily lives. Our regular routines that include workplaces, family, sports, gyms, and church are out of reach. We rattle around our days feeling lost, and struggle for ways to seize control wherever we can.

All things considered, I am not particularly bothered by COVID isolation. Yes, I would love to see important people, and maybe get in a hike on the Bruce Trail, but for the most part my introverted soul is relatively content. I am happy enough reading, writing, and knitting.

To be sure part of my relative contentment is related to my comfort with silence and solitude. But I also think a fair bit of my well-being comes from the fact that I learned a long time ago that control of one’s life is an illusion despite what our communal paradigm suggests. Our worldview suggests that much is within our control; health, well-being, suffering, opportunity, and so on. Just eat the right foods, believe the right things, exercise, think positively, and life will unfold as you wish. And while I don’t want to minimize personal responsibility and the fact that we can, and do, influence much of our daily lives and health, it’s can be hard lesson to learn that there is still a great deal of life beyond our sphere of influence. My life as a caregiver taught me that in spades, and I think those lessons have become particularly meaningful during a global pandemic.

Canadian author Donna Thompson described her caregiving journey in her book The Four Walls of My Freedom. I have always found her description of caregiving apt. Before we fully understood the extent of Matthew’s fragile health, and its impact on me as his primary caregiver, I completely ignored the walls his complex care erected around my life. I believed that if I just thrashed hard enough, and continued to live as I wanted, those walls would magically dissolve. I was in control and I just had to show those walls who was boss. Yeah, I was wrong, and it took a crapload of bruises to learn that lesson.

Once I figured out those walls weren’t going anywhere I mourned. I became angry. I chafed at the restrictions those walls represented. I was resentful and jealous of those who could live beyond the walls. I saw my life as a wasteland of lost opportunities, never to be retrieved. My anger was never directed at Matthew, but God, “the system”, and other people, weren’t spared.

Once my anger had run its course and I grew tired of thrashing about my confined space, I started to take stock of my new surroundings. It wasn’t awful. And while those who know me know I won’t say that I started to celebrate those walls, I did learn that there was possibility within the space. While I don’t think I ever embraced the idea of leaning in -that’s too much of a quest narrative for me – I do think I learned to make peace with the life I had been given, and to flourish within the four walls of my own personal freedom. Those walls weren’t going anywhere. I couldn’t influence their presence or location, but I could decorate the space to my liking.

For the record, I am not suggesting embracing limitations when advocacy, education, and action will mitigate those restrictions. We must always heed a call to action and improves lives where and when we can. What I am saying is that there are some forms of suffering that are beyond our control and learning to accept human limitation is also an important part of the journey. Believing we have infinite control can be equally limiting.

I had to learn that I didn’t have a choice about the walls. The vagaries of life had put those walls around my life, and I could be forever angry or learn what possibilities might exist within the space. Like Victor Frankl described in his influential Man’s Search for Meaning, I had to learn that the control I did have was paradoxically discovered in embracing my lack of control. I couldn’t control Matthew’s illnesses and all that caring for a medically fragile child entailed. I couldn’t magically create a world that understood disability, and celebrated and supported extreme caregivers (though I could fight to create it). What I could do was learn that life wasn’t the vast horizon of endless possibility that my privileged worldview had embraced, and to adapt accordingly.

That my walls had windows was both a blessing and a curse. I was always aware of life beyond my walls. While I learned to be happy in my own space, I knew what I was missing. I watched friends take trips and pursue dreams, while I cancelled holidays mourned missed opportunities. While I lamented those losses over time the sting more or less abated. I allowed myself the space to be occasionally sad, but learned not to let my despair control me. I found a paradoxical sense of peace amid a life that was often mired in random chaos and senseless suffering well beyond my sphere of influence. I learned that control could be an illusion, and the best I could do was ride the wave of life and keep my head above water. Attempting to dominate a tsunami was a fruitless endeavour. There were times that all I could do was hang on and keep my eye out for dry land.

These are all lessons that have helped during COVID. isolation. I do what I can – isolate, wash my hands, wear a mask, follow the rules of exposure – but I know that at the moment I am riding the surf, and I just need to hang on until the water calms. The more I thrash the harder it will be to stay afloat. I have no idea how long this particular wave will last. What I do know is that in my life it hasn’t been the first big one, and likely won’t be the last.

It turns out that control, what little we have, can look a lot like patience and acquiescing to a power beyond the self. It’s a hard lesson to learn, mostly because it flies in the face of everything our world likes to believe. So hang on and look out for others who are riding the same wave. Give them a hand when you can. At times that is only form of control we have.

Published by extremecaregivingblog

Wife, mother, extreme caregiver, friend, knitter, soccer player.

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