Balancing hope and acceptance with a chronic illness

Finding acceptance while holding on to hope with a chronic illness is like walking a tightrope, especially as the years grind on. Hope is a vital life force that propels us, whereas acceptance allows us to discover new ways of living within the moment. Clearly hope and acceptance are not mutually exclusive, but over time I have found more comfort and ease from accepting my illness. Years of hoping that my recovery was around the next corner took a lot of energy I no longer have. Still, hope is always there, even if only in an abstract way.

I found my path to acceptance through grieving and letting go. It takes time to let the grief from chronic illness mold you. By definition, chronic illness is not a discreet event, and absorbing all of the lost dreams takes time. Grief is like an undertaker and midwife all in one, taking the hand of our former self to guide us through to the reality of our new one.

I wonder if I view chronic illness in a similar way to how I view my age. Even as I get older I still think of myself as being around 25 years old (I am decidedly not!). In the case of chronic illness, I still think of my healthy self inside, the one who loves to backpack, dance, travel, cook, and study. It is this person who is always planning out the next ambition, dream, and adventure.

My grieving recently took a quantum leap. It is always there in the background, but it has been a while since I was thrown back into its depths.

After ME/CFS forced me into disability retirement from my position as a professor, I dreamt my way into a new future. It went something like this. I would try some treatments that held more promise than any I have done before, including Vistide (an IV antiviral drug), Ampligen (a drug that upregulates toll-like receptor 3), and IVIG (pooled immunoglobulins). This is where the hope comes in. After seeing some improvements – not asking for much here, just up to 60% from my current 30% function – I would go back to school to retrain as a physician’s assistant. My dream was to serve at the intersection of clinical research and patient care. Finally, I would be able to serve on the other side of this disease.

Dreams don’t always go the way you hope they might, especially with a chronic illness. I am thirteen months into fortnightly Vistide infusions, which are dreadful but have helped to reduce my Epstein Barr PCR viral load. I have tried getting IVIG since 2014 and I have now accepted that I likely will never get access to this treatment. I no longer want to put my family in debt over medical care, taking the drug Ampligen, which is very expensive, off the table. Barring a spontaneous remission (exceedingly rare in this disease), I have found acceptance that I may never have more function than I currently have. This doesn’t stop me from dreaming.

The pandemic opened up an opportunity for me to dip my toe back into academia and take a class online. I would never ponder taking a course on campus; I simply could not manage the physical exertion it would take to get there nor could I reliably show up at set times each week. An online course would allow me to re-watch recorded lectures and take in information on my own time. In August, I decided to enroll in an immunology class at the University of Nevada, Reno.

Taking this class has shown me some hard limits on my abilities. Sitting through a lecture is like doing a CPET but for cognition. Instead of maximal exercise, this course has required maximal thinking and concentration. Within 10 days I crashed hard from the stress and mental strain and still have not returned to my cognitive (and physical) baseline. This terrifies me and took me to new continents of grief. I always thought there would be a next act in my life but this experience with school has forced me to accept that doing the PA program is likely beyond my reach. I was (and still am) devastated.

Many people assume that because I write this blog that I have more function than I have. I can think of several successful writers with severe or very severe ME who keep a regular blog and/or write books. ME/CFS affects us all differently.

When I outlined my dream to work in the medical profession I promised myself I would make it about the journey and not the destination. That way I could learn no matter what, even if I had to do it on my own and at my own pace. As long as I was learning I would feel ok. I still believe this, but it did little to cushion the impact of this latest round of grief.

One lesson this has taught me is that what I value the most is living a somewhat stress-free life. The stress from my job nearly destroyed me and I still live with that legacy. Since leaving my position I have settled into a far less stressful life. Reintroducing stress (fairly high octane variety) through taking this class reminded me of how much I have to lose. It is no longer a matter of pushing through and paying later. It is a matter of losing what quality of life I do have. Those who occupy lower the lower registers of function understand just how precious any function is. It simply is not worth it. This has helped me to find more acceptance around this loss.

I am still deep into my crash and have decided to audit the course. I adore it and was filled with sadness over the thought of having to drop out. This way I need not stress about performance and do the course according to the whims of my cognitive function. I will not be able to devour it in the way I had hoped, but already I have learned so much and look forward to writing about immunology in future blogs.

I also had to remind myself I was trained to do meaningful work in a different area – inspiring college students to find their passion and equipping them with the tools to pursue it. I will never be a professor or do research again, but who knows, maybe I could teach an online class in biology someday. In the meantime, I will enjoy learning and not stressing. Acceptance has it’s benefits, especially if hope is hovering nearby.