Welcome to My World. I’ve Been Here for Years.
With COVID-19, the norm for some becomes the norm for all and our defective healthcare system is revealed.
Written by MFA@CIIS Candidate, Sarah Rome.
For the last ten years, every time I go out with my son I keep us a safe distance from others. I’m wary of anyone coughing, pray for empty movie theaters, and pause at my son’s every sneeze. I remind him, after he touches things, not to touch his face until he has thoroughly washed his hands. When I take him to the pediatrician, I keep him away from the toys, always asking the staff if there is a separate room to wait in. I reassure him we can look at the fish tank for a few minutes on the way out. He loves to watch the fish. He loves animals. Afterward: hand sanitizer.
My son has a Primary Immune Deficiency and receives a weekly, subcutaneous infusion of plasma that contains one of the main antibodies he needs, that he doesn’t produce himself, in order to stay fairly healthy. But my son will always be more susceptible to contracting illness. When news stories talk about those with weakened immune systems being more at risk with certain diseases, they are talking about him. In addition to my son, who also has Sensory Integration Disorder, my husband — who is sixty-seven years old — has High Blood Pressure and has been living with Parkinson’s Disease for twenty-five years.
Procuring and paying for all of their medication, surgeries, doctors’ appointments, and arranging the administration of treatment that neither of them can go without has been a life-altering, financial and logistical nightmare.
For ten years we have been forced to adjust to every new insurance restriction and medical bill, as well as my son becoming too ill, too frequently in school, leading us to decide to unschool him for a time, to give him a chance to be healthy.
Little by little, we have whittled our entire life down to the point where it seems like we don’t have much of one at all, simply maintaining ourselves to get through each month — and it has taken its toll. I have always been the relatively healthy one, managing the health issues of the other two. But after years of pressure and uncertainty, I’m breaking down too.
I have recently come to understand that I may be suffering from an autoimmune disorder, with symptom flare-ups that vary in severity, very possibly exacerbated by stress. I am just at the beginning of finally putting the puzzle pieces together with the appropriate healthcare professionals.
The irony of going through this process in what is now the height of the Coronavirus outbreak is not lost on me. While the whole world has been stunned into a sudden lifestyle change where no one can go anywhere or do any of the things they normally do, be with the people they would normally be with, count on any of the normal activities or even supplies of their daily life, and won’t have the income they expected, my feeling is that my family and I have been in active practice of this reality for years. And I would like to welcome everyone else to the party. Sit down. Make yourselves comfortable.
As I now advocate for myself in this healthcare system, while continuing to advocate for the two men I love the most, the Coronavirus pandemic is another unfathomable curve ball thrown our way, except now, everyone is getting a taste of what my family’s life has become in normal terms — of what it is like to have your life essentially stripped of you, due to the ramifications of illness and the reliance we have upon everything working “just so” in this world in order to maintain our health and livelihoods.
While being all the more worried for the lives of my husband and my son as we isolate along with the world population, I am also in the process of trying to find out exactly why and how my own health has been failing, steadily and increasingly, over these past few years.
One of the reasons seems glaringly obvious, though. If the healthcare and social systems of this country truly took care of all citizens equitably in the way every living being deserves to be cared for in what is the most prosperous country in the world, maybe my family wouldn’t have been in the financial and emotional ruin we have been in these last ten years, and maybe there would still be only two chronically ill people in our family, instead of three.
COVID-19 is an illness that continues to spread and prove to be a great threat to people’s lives. But it is the society not structured to uphold the lives of its people in the midst of such an illness that is the greatest threat of all.
Sarah Rome is a former actress, arts educator, and somatic manual therapist in her first year of the MFA program at CIIS. She is currently writing a book about the experience of managing multiple chronic illnesses in her family.
To follow Sarah’s work and that of other CIIS creatives, follow MFA@CIIS on instagram.