I think when most people picture fighting a scary illness, they probably picture something like cancer. They imagine a finite timeline, where one works to keep their spirits up and gives it everything they’ve got until they either prevail and achieve remission or they succumb to their malady. This is not the case with chronic illness. It is more like a tragic saga of never-ending trials that go on long after the audience has fallen asleep, like the Outlander series or anything with a Targaryen in it. Eventually, only the one who is living it everyday is paying attention.

According to the Kübler-Ross model, there are five stages of grief: denial, anger, bargaining, depression, and finally acceptance. When I was diagnosed with a rare, progressively degenerative autoimmune disorder in the summer of 2021, about five months before Georgia became ill, I traversed these stages into a well-worn path. My sister, a licensed therapist experienced with cancer patients, coached me through a tumult of emotions as I ricocheted back and forth between denial that I was even sick and hopelessness prompting me to ensure my affairs were all in order. “Grief is cyclic,” she taught me and can move between the stages repeatedly. It will evolve at its own pace. The truth is, when the loss is so profound and the path to recovery is long and uncertain, this grieving cycle never really resolves. You exist somewhere within it and each day may be different.

I didn’t begin to move toward the final phase of acceptance, though, until I learned that there was something attainable beyond this final step. A member of my online support group, herself a physician and specialist in our common disorder, shared a talk she gave on our illness. In it, she proposed two stages beyond acceptance: gratitude and hope.

I was aware of the statistics surrounding Georgia’s condition from nearly the beginning. It was the second week of January, 2022, and I sat at my computer in our front room where I had set up my home office. I had finally convinced Georgia to try to go to school that morning, but she called me to pick her up early after only a couple of hours. We lived a few blocks from school, but she couldn’t make the short walk. As we drove home, she described to me the heaviness and full body fatigue in her muscles; they were sore, as though she had run a marathon, but she had only walked between classrooms and up a set of stairs. Her head was pounding. “Is this normal?” she asked. “No,” I said gravely.

She went to bed as soon as we arrived home and I immediately began researching Long Covid. It was not unknown to me. My support group had been drawing comparisons with autoimmune disease, mast cell activation, POTS, and various other immune dysfunction disorders as stories about this poorly understood condition began to make the news. On this particular afternoon, the reality of her condition hit me quickly and painfully the more I read. The link to ME/CFS (myalgic encephalitis/ chronic fatigue syndrome), specifically the hallmark symptoms of of post-exertional malaise including exhaustion, muscle fatigue, and soreness, were immediately evident. I shifted my reading to focus on ME/CFS studies and my concern morphed into terror. ME/CFS has no approved treatment, very few studies, and is considered incurable, with fewer than 10% of cases ending in recovery or returning to pre-illness function. At least half of those with ME/CFS are unable to work even part-time due to severe disability. Worries about my own illness evaporated as I imagined my daughter’s future shattered by a life-long disabling illness.

I was overreacting at the time. She had only been sick for a couple of weeks at this point and the definition of Long Covid requires lingering symptoms that persist a minimum of 3 months after the Covid-19 infection resolves. A diagnosis of ME/CFS cannot be made for at least 6 months. Within these windows, people can and do recover. We made an appointment with Georgia’s pediatrician and clung fiercely to this first stage of grief- denial. For the most part, the initial bloodwork was normal with mildly borderline abnormalities like anemia, too common in females at this age to garner even a raised eyebrow, and low Vitamin D like everyone else in the Portland metro region in winter. As benign common causes were ruled out one by one followed by the slightly less benign and less common, we were left with the eventual truth.

Georgia had Long Covid.

I didn’t tell Georgia anything about these devastating statistics and she was mercifully too tired to look them up herself in the beginning. For a long time, I felt like I was guarding a dangerous secret. It was as though I was the only one who knew this was the end of the world. Everyone close to us remained in denial as I moved quickly through anger to hover between bargaining and depression. As an engineer and recovering codependent, I am a born fixer. I focused on finding the solution. I set my alarm for 3:45 am each day and spent every morning researching. I read every study published. I learned to type unfamiliar words into the search bar and taught myself a whole new language of medical terminology. I streamed presentations and continuing education seminars. I scoured handouts, transcripts, and obscure publications.

Information can be both empowering and deflating. When you read depressing statistics, it can rob you of your peace. Just enough information can convince you to give up. But if you keep reading, you realize how much more there is to learn and how many possibilities are just on the cusp of a critical breakthrough.

One morning in February, I pulled out my journal to practice one of my stoic writing exercises. The assignment was to write a list of all the positive things about whatever was worrying me. I told myself I would try to get a handful of lines down as I pondered what could possibly be good about my child having a debilitating illness with no cure. I took slow, deep breaths. I centered my thoughts on gratitude for what I have. I picked up my pen.

I filled two full pages of my notebook that morning with a list of small blessings hidden within the tragedy that had consumed my mind.

I’m on sabbatical just as Georgia falls sick so I’m able to give her the focus she needs right now.

I was diagnosed before her which means I have the experience and knowledge needed to research Georgia’s illness and advocate effectively for her.

This is bringing Georgia and I closer together at an age when most teenagers push their parents away.

While I grieved her illness, I could still be thankful for our growing bond and the time spent together. I moved through acceptance and found gratitude.

Georgia was accepted into the Pediatric Long Covid Clinic at OHSU near the end of March 2022. I still remember the feeling of relief when they told us that kids recover, that it may take time, but that most do recover. I was flooded with hope as they talked through all the specialists she would see, ordered more bloodwork, and reassured us. We went home that day over the moon, sure that this nightmare would soon end.

I wish I could tell you it was all downhill from there. Anyone with Long Covid can tell you the rest of this story. For the next two years, we rode an emotional rollercoaster. With each new doctor, prescription, or breaking study, we would allow hope to bloom, only to see Georgia relapse or worsen and our spirits would be crushed. This is the real struggle of chronic illness. Do we resolve to settle into a state of calm acceptance or do we persist in the tumultuous fight for a better future? Reliving the cycle of grief and loss with each failed attempt at a cure is indescribably painful. To stubbornly refuse to give up is to choose a life often subject to sorrow and disappointment.

It is a monumental feat of endurance unlike any other- the endurance of hope.