Reverence Lost

Over fifty years ago, a young man was desperately seeking answers. At a time when his friends were enjoying some of the best years of their lives, he was suffering from debilitating digestive symptoms and extreme weight loss which left him unable to enjoy much of anything. His existence was plagued by severe pain for which he could find no relief. Worse, doctors seemed vexed. Trying to treat his condition amounted to a series of trial-and-error experiments based on guesses, none of which were correct. And eventually, that young man and his despairing parents were told there was not much else to be done but make him as comfortable as possible.

Neither the young man nor his parents were willing to accept surrender to this illness, especially without any solid answers as to its nature or name. There was one last hope; a world-renowned hospital engaged in cutting-edge medical technology and research was a mere short road trip away. Cautiously hopeful, they made the necessary appointments and arrangements and embarked upon what would become a life-saving journey that would result in the young man living a long and quite ordinary life. 

The enemy’s name soon became known; the young man had an autoimmune condition called Chron’s Disease, which primarily (though not exclusively) affects the digestive system. Chron’s Disease had only been known for about 30 years, and not well-known. As leaders in the field of medicine and digestive diseases, this hospital was able to provide what local medical facilities and doctors could not.

Though far better than the dire predictions from the first sets of doctors, life for this man was not without challenges. There have been, through the decades since his diagnosis, a number of situations ranging from mild to requiring several emergency surgeries. Medications that were necessary to control this disease led to other health complications, like early heart disease from long-term, low dose steroid therapy used to control inflammation. Fortunately, new, highly-effective therapeutics have emerged through the years and medications like prednisone are no longer necessary for him. Cardiac interventions proved successful and uncomplicated and biologics have given him what steroid medication never quite could - years of remission at a time from Chron’s flares.

Because of the doctors who accurately diagnosed his autoimmune disease in the 1960s and were thus able to provide life-saving treatment, he survived, lived his life, got married, had a family. Because of that hospital with the brilliant doctors and latest technology, I exist. That young man eventually became my father.

The hospital and the doctors who saved my father were heroes to me. Throughout much of my life I always held them in such high regard. But now, more than fifty years after the hospital paved the way for my very existence, I sit here suffering needless consequences of my own autoimmune disease because of their negligence. Today is one of those days where my joints don’t care to cooperate and won’t expand quite enough to allow me a comfortable, satisfying, full breath of air. My autoimmune disease primarily affects my joints and skin. After much trial-and-error, I discovered that a vegetarian, dairy-free diet helped significantly with my inflammation and eliminated flares for many months at a time. I don’t necessarily think everyone should eat this way because everyone’s body is different, but it proved successful for me. 

Covid-19 threw a wrench into things, however. I had a probable infection in March of 2020. I developed symptoms consistent with Long Covid just a few weeks later and was eventually diagnosed with post-viral autonomic dysfunction. I battled this for nearly two years and was finally turning a corner when the CDC decided to cut isolation time to five days. Hospitals were already failing to protect staff and patients, requiring only surgical masks for staff and visitors. But when Covid-positive caregivers were allowed to resume work just five days after a positive test, I was sick within a week.

Since that second, completely preventable infection, I have struggled with relentless flares of my autoimmune disease and a number of new autoimmune symptoms I never previously had. I am suddenly unable to tolerate gluten. I cannot get the psoriasis on my face under control for more than a few days at a time. My joint pain is a constant companion now. And my autonomic dysfunction worsened with my reinfection.

Accessing medical care at this hospital that I once held in such high esteem is no longer safe. Regardless of CDC’s terrible recommendations, this hospital and all of the others are fully aware of the risks. The very nature of their business involves treating the acute and post-acute fallout of Covid-19 infection. Why would a world-renowned hospital throw caution to the wind? Have they changed that much from when they saved my father’s life, or did I just have it wrong the whole time? The truth probably lies somewhere in the middle.

A nutrition-based approach is no longer adequate to control my autoimmune disease, thanks to their willful negligence. But I am also unwilling to seek care from the same place that is responsible for infecting me. Not a day goes by that I don’t hear another story from another family who lost a family member to Covid-19 after a hospital stay for something else resulted in their infection. Not a single day. My son recently broke his foot and after two hours in the waiting room came home with a nasty respiratory virus after just recovering from Covid-19. He now deals with high blood pressure spikes at age 17. It is no wonder the average life expectancy has fallen to where it was over a quarter of a century ago. How long can we go on like this? And why do we accept this for ourselves?

As a child, doctors and nurses were my superheroes. I devoured medical books the way some kids read children’s novels. I wanted to grow up and be one of them. I’m so relieved that I didn’t. The extent of my work in a medical capacity began and ended at the fire department where I worked a firefighter and EMT. To have spent so many years pursuing a career in a field that made extraordinary advances in the understanding and preservation of human health only to backslide drastically and deliberately because it’s marginally cheaper in the short-term to do so would have been more than I could bear, I think. Where we are now is so grievous and appalling to me that adequate words to describe my horror seem to elude me. I cannot fathom the righteous rage that would ripple through every life that was sacrificed or lost to the pursuit of every bit of medical knowledge and technology we have today, only to piss it away in pursuit of protecting the almighty dollar.

I grieve the reverence I once felt. The magic I believed we were capable of. The lives needlessly lost, and those who died in vain.