While we have all had to live through the COVID-19 pandemic, some accepting the reality of it, others denying it, those of us with chronic illness, those of us more vulnerable, also had to struggle with another reality and it’s one I am still processing but, it’s also one I realize since writing my last post (Ah Ha), that I am now better able to understand. Let me back up here and begin at the beginning…
When you live with a chronic illness that forces your life to pause and you start missing a beat here and there and the rhythm of your life is no longer the same tempo as it once was, as it is for the healthy and the well, you not only have to deal with the personal feelings that come with all of that, the foreboding uncertainly, the deep internal loneliness, you have to deal with the fact that you’ve become part of a separate class…”the disabled.” You lose not only your health, you lose your place in the eyes of the rest of the world. Some will say they don’t see you differently. Perhaps, some really wish they didn’t…but they do. You’ve changed. You know it and they do, too. Even with those you love, you see that they know it in their eyes. You are redefined in some way whether you like it or not.
Then along comes a pandemic. Over and over again medically vulnerable people are told that they are at higher risk of illness and death…especially in the early days, when treatment is not seriously available and the medical community is shooting in the dark about how best to address the symptoms of a potentially deadly virus. Everyone is asked to keep some social distance, to wear a mask and in the early days, to stay home. While millions do, there are still millions who refuse. There are millions who believe false information, not understanding that as more information comes out about the virus it simply means the science and understanding of the virus is changing. That’s how science works. It evolves. These same millions of people rally against the loss of their “personal freedom”, protesting all over the country…carrying signs that say things like “I will not wear your fear”, referring to mandates to wear masks. There were also protests when people were asked to shelter in place. I remember seeing one on the news with a women holding a sign in Tennessee that said, “Sacrifice the weak. Reopen TN.” A national politician of a certain party suggested that the elderly would gladly sacrifice themselves for their grandchildren’s “freedom.” There was behavior like this all over the country at a time when everyone was vulnerable to a virus that was not well understood and was killing people from all walks of life. Millions of people did not care. They didn’t even believe it was happening, even as some of their own family members died. They certainly did not care about those of us more vulnerable.
This was the reality of the COVID-19 public health crisis for those of us with altered health. I remember feeling crushed by this, by these people, by their attitudes toward me, those like me and, their utter lack of respect for good health and for life itself. Their selfish disregard was on full display. There is no other word for it. They refused to yield their privilege for anyone. They raged against those of us who had legitimate fear, those of us who had no choice but keep some distance because we did know, we fully understood, especially in the early days of the pandemic, that getting COVID could very well and likely be a death sentence for us. They did not care. They scoffed at us. They resented us and behaved as though they hated us.
COVID laid bear and put on full display what these same millions have probably always carried in their hearts for “the disabled’…a resentment that runs so deep they wished us dead. They clearly found us to be a drain on society, getting in the way of their daily life by simply asking them to be considerate toward us…for asking them to wear a mask. The pandemic allowed them to express publicly, freely and for some gleefully, their utter distain for those of us who step more slowly because of changed health. I don’t say this lightly. There may be people who read this and think I am exaggerating but they would likely be the same people who didn’t believe how deadly real COVID was at the start and they will be the same people who think being fearful about the virus is being weak. I don’t really care. It’s my turn to speak. I’ve held these feelings in for over three years and I’m done doing that because people with medical disabilities don’t deserve to be treated as less then and our lives matter as much as any physically healthy person’s life.
I think before COVID, while I understood on some level, there was a bit of an under current of contempt for “the disabled” by certain parts of the greater community that don’t have to deal with life altering health changes, some level of skepticism about us, I never truly understood until COVID, that we are actually despited by this segment of the community. They made it plain during COVID and sadly for many of us, some of those people were in our own families. My immediate family, my husband and siblings were wonderful. Unfortunately, I can’t say that about some of my extended family. It’s been an incredibly painful reality to wrap my head around but slowly, I’ve been putting the shattered pieces of my heart back together even as I’ve been forced to re-evaluate some of the relationships in my life. I will proceed with caution…at the very least but, I will also forgive. It is forgiveness that will free me from my sorrow and it is forgiveness that will help me let go.
In my last post, I wrote about having an “ah-ha” moment about the difference between pain and suffering. I realize that this concept applies here, too. As I move forward in my life now knowing the depth of distain some feel toward me, now knowing that even as I’ve tried my best to keep living a productive life with a “disability”, I don’t have to suffer over the hate and judgement some will always feel toward me for being sick, for having an illness through no fault of my own and asking them to consider my well being in the middle of COVID and beyond. Yes, it’s painful, to know they are out there, judging me, believing I am less than, feeling like I don’t deserve the same privilege to live safely. They will always view me as weak and since COVID, they now view me as weak minded, too. It doesn’t matter. They can view me however they want to view me…I can’t change them. I can only change me and I will no longer suffer over for their disregard for our existence. None of us should. For me, part of letting go of that suffering is to speak my truth, to take back my right to the same regard for MY life. I will no longer allow myself to feel diminished for their condescension. It will always ben painful to know now, on a guttural level, that so many feel such vitriol for those with altered health but since I can’t change that reality, I am going to let it go. I am going to forgive them…for they know not what they do.