No Answer to the Mess

When we are going through something difficult, attempting to find our way forward, but not knowing where forward is, we can have so many big, tumultuous feelings come up that we don’t feel like ourselves. Even our thoughts don’t feel like our own. We can act in ways that we don’t recognize or understand while the people in our lives look on helplessly—or judgmentally. There can be such a strong temptation to withdraw so no one sees us as parts either previously unknown to us or parts that we have worked hard to keep hidden, rise furiously to the surface. Withdrawal from some people is ok, there are a lot of people who don’t deserve the honor of seeing us at our most disheveled and vulnerable. However, for those that have earned the trust of seeing us when we are utterly lost, those are the people that we hold onto tightly, turn toward, and tell them the untidy truth, “I don’t know what is going on with me.”

There is courage in admitting to not having the answer, to admitting that we don’t know where we are emotionally, mentally, physically, metaphorically and what is going on with us. It can be tempting to want to offer the people who love us an answer to the mess they see but many of the deepest feelings and experiences do not have words.

As I’ve been trying to come to terms with the reality of my health, and as my family is trying to come to terms with it as well, there are so many particular expressions of feelings that have come up that I haven’t experienced before. There are times where the best word to describe me is Sickzilla. Just to be clear, no one else can call me that, thank you very much. However, I describe myself that way at times. It’s a level and flavor of rage that I didn’t know was possible. There’s a Thelma and Louise driving off the cliff recklessness to the rage, combined with utter hopelessness and sorrow and there are moments where I’m witnessing the entire emotional experience I’m going through in awe of the complexity. 

I never realized, before becoming physically disabled, how prevalent ableism was, including within myself.

I’ve heard other people talk about these kinds of emotional experiences, but could never relate to them. Now I can. It’s really one of the most precious parts of this experience–there are more people I can relate to that I couldn’t before. 

I thought that all my intentional work, both emotionally and physically, would offer more protection in life than it has. Protection wasn’t the only reason I chose to take care of my mental and physical health, but it was an aspect of it. When suffering occurred, I thought that I hadn’t worked hard enough in some area of my life, that I hadn’t healed enough, that I was too broken and too fucked up. There are people who blame others first and the difficulty is in realizing that it was actually them who was wrong. I’ve tended to blame myself first and usually singularly. Behavior I was explicitly taught as a child that continued to benefit those around me so no one encouraged me to change. The difficulty has been learning that other people are at fault and I have a right to hold them accountable, or that no one is to blame. I’ve also come to learn that I try to fix everything, whoevers mistake it is, by just working harder. I prided myself in my ability to dig deep. Yet, there are some experiences in life we can’t work our way out of. 

I never realized, before becoming physically disabled, how prevalent ableism was, including within myself. The way I thought, spoke and acted were from a person that had no comprehension of how thoroughly ableist I was. Like I said above, I prided myself on my physical health and I thought that my extremely healthy lifestyle choices protected me. While I took pride in my physical health and ability prior to becoming ill, I didn’t take any of it for granted. I knew its preciousness—and for that I am grateful. 

I’ve come to realize that there is very little that we can do that truly protects us. Doing the right thing is not a guarantee that you will be protected, that justice, fairness and rightness will be the end result. Yet, I would still choose to make those lifestyle choices, however, the reasoning for my choices has been edited. They are the choices I still make, as I’m able, but instead of using it as armor, I now do it to honor. My choices no longer hold the illusion that I can protect myself from emotional or physical suffering. There is no more continuing to live in denial from the truth that we are all at risk and we can lose everything that matters to us in an instant. I do it to honor myself in mind, body and soul. I do it to honor my family, friends and the world. I do it so that I can experience the enormous beauty that is possible within this life. I do it because I want to cause as little harm as possible while I’m on this earth and spread as much healing, love and connection as I can. 

Intentionally engaging with our physical and mental health does not mean we will not get sick, depressed, or suffer in the many ways that are possible. It means that we will know our body and our emotional selves as well as we can, so that we can face the challenges that come our way with as much strength, wisdom and care as possible. It means that we are more likely to know how to be with ourselves as we find our way forward. While we may have desires for a particular outcome, our self knowledge allows us to remain and to live life in a way that continues to honor our values, no matter what the outcome or how long the road.

Lately, most days I feel completely ungrounded. For years we’ve been desperately searching for something that would bring healing. Up until a few months ago, we kept thinking the answer was just around the corner. This would be a blip in our life. What I’ve come to realize is that it’s not. This is my life. Whether my body heals and fully recovers from Long COVID or not, this is my life. Difficult things in our life are not blips or our life on hold. They are part of our story, part of our life. In a culture that is in denial when it comes to illness, suffering and death it’s all the more difficult to grieve. I’m holding an enormous amount of emotions, experiences and thoughts. I’m burnt out. Our entire family is burnt out from this illness and yet there is no break from it. As every wave of emotion hits for each one of us, the only thing I know to do is hold it; be with the emotion and be with the person experiencing it and bear witness to the full spectrum of life. 

In order to find my way forward I have to be fully engaged with where I am right now. I’m learning to orient myself and my family in the midst of Long COVID and our grief. I’m sitting down, taking stock of it all, feeling and seeing it all with magical thinking stripped away: my kids and I are very ill and we no longer have the physical abilities to do the activities that are meaningful to us and bring us joy. I no longer have the physical ability to care for myself. Maybe I do know what is going on with me after all: I am deeply grieving all I have lost and in the process trying to discover a new way of living.

• Topics:
• Long Covid