Between Light and Darkness
Navigating Caregiving, Illness and Grief
Living With, Moving Through, Shifting Perspectives
By Yasemin Isler
March 2021
Dear reader, you may choose to read both parts or skip to Part 2, if you are not interested in my personal narrative.
Personal Narrative
During the last 3 weeks, I’ve been poked, prodded, turned, scanned, churned, diagnosed, and still left with more questions possibly to be answered. I’ve been through labs, ultrasounds, X-rays, CT scans, more procedures, and still counting. So far, I have been told that I have arthritis of the spine, partly due to getting old, simply because of aging, I am walking around sometimes like an 80-year-old, or how I imagine it may be closer to that age. I notice that I am seriously judging and having expectations. I also recall some 80-year-olds who are dynamic. I notice the number of aging patients in the hospital corridors being wheeled on gurneys as I wait for the next test appointment, wondering how to make my aging days (further out in the future, if I live long enough) easier on myself and my loved ones.
I remind myself that it is not all up to me, this business of health and aging. I still sense, or simply wish, that I will feel better again. I also notice some days I am already feeling well. I remind myself of all of the ill beloved souls, of all ages, who may often be marginalized in society just because we are not raised culturally to live with illness, aging or dying, as standard conditions of being human.
I’m ready to be grateful if arthritis is all that they will find and I learn to live with it, even if without a cure. I have also accepted the condition for what is, even if I do not have a solution to possibly “fix” or “repair” it. I notice when I lean into accepting it, there is a bit of the sense of freedom that it is not all on my shoulders to be fully healthy. I remind myself illness, aging and dying are part of the human condition. I also note that they typically do not make a good dinner table conversation.
Since a few months after the Covid-19 pandemic began, a debilitating back pain and fatigue have been my companion. Gentle yoga, Hatha specifically, was initially helping my back pain, that came and went over the years. Pelvic and lower back stretches were sweetly calming the tension along my back muscles stretching from the tail bone to the mid-section along both sides. Over time, the pain increased to the level of not being able to bend at all at times. My once flexible body speaks as if to say “stop” when I attempt to touch my knees on a good day, to not go down any further. Other days, to my pleasant surprise, I can bend the knees and touch almost to my ankles. On other days, if I attempt to twist or bend my back at all, I know that I will be stuck in that position, locked in pain, so I need to be fully aware of my body and keep communicating with it constantly. The body is wisely setting the limits and guiding me.
I have to sit down to put on my clothes. Sometimes I have to leave what’s on the floor where it is because I cannot pick it up. I have also mastered lifting things up with my toes and raise them to meet my hands, along the hip height, so I can put some things, like clothes, away. I am grateful most of the time, that I can. When I get out of the expensive office chair which I bought in the hopes of supporting this precious back of mine, during the long stretches of having to work from my desk, sometimes I walk away bent, stiff like a ruler at a 45 degree, coated with flesh, because I cannot simply straighten myself back up without excruciating pain which I’m not yet willing to exert on myself; or my back simply says “No, can’t do that right now. Move along, bent dear woman.”
My fatigue has had its ebbs and flows for over a decade. When I returned back to my old medical records, I was surprised to see that in 2012 I was diagnosed with not only Lyme disease, but chronic fatigue syndrome (CFS). My CFS, which these days is known as myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS), was mild enough that I was able to function, almost at 80-90% capacity. That is, I was able to work a full-time job, be a mother and wife, but no longer be able to run 5 miles a day, and had periods of full rest on a few weekends.
When my husband was going through his initial set of tests during the spring and early summer of 2014, for his gradually growing discomfort, I was being treated for chronic Lyme disease, with conventional medicine and Traditional Chinese Medicine (TCM), finally starting to feel better after a few years of mystery symptoms that my physician was not sure of and called me her mystery patient. I had the mercury fillings in my teeth removed, along with a tooth with second root canal which gave me so much pain. For others, amalgam fillings and root canals may be certainly just well and good. In my case, once they were gone, some of my neuropathic symptoms disappeared. Needless to say, I was beyond grateful. I am also grateful that it was done when it was done. So that, I was able to be at my husband’s side, healthy enough, during his illness.
My husband’s illness finally was diagnosed six months into his discomfort. He died 6-weeks after the diagnosis. Our five-year-old son and I allowed our grief to play its course to move through us, allowed ourselves to cry and laugh, incorporating compassion and mindfulness into our experience. We fully integrated the low points of grief with the still present gratitude and joy of life, being held in so much love. My son knew from a young age to love himself unconditionally. So that he could be there for himself and for others in need, fully. To this day, I think love and kindness, including self-love and self-kindness, are the biggest gifts I have given him.
When he was in kindergarten, my son was having a conversation with a few friends about who they love the most. He naturally answered that he loved himself first and foremost. His friends found it bizarre. Nowadays, self-love is becoming worth its weight in gold, as it should be. Self-love, self-kindness and acceptance, are what made it possible in many ways for my now 12-year-old son to be with his own illness. He was diagnosed at the age of 9.5 with ME/CFS along with a few related conditions. He has been home bound since fourth grade. His condition has improved significantly, which he recognizes as well, positively. He still needs to pace himself and attend to school during times when his energy window allows him. We are lucky that the school district has provided him home based tutoring with flexible scheduling to focus on his core learning. He has the most amazing tutor. We are beyond grateful for her.
Covid-19 pandemic has had a silver lining in few ways in our household. My son came to spend some time, via remote learning, with his teachers and class mates. This made it possible during the second of fifth grade for his teacher to finally get to know and appreciate his brilliance, vibrancy, creativity, and kindness. During sixth grade, he’s had access to all school work remotely, which put him in more equal footing, normalizing being home bound and isolation to an extent, while the pandemic lasts. He is still not able to participate in full remote classes during school hours. His amazing teachers appreciate the limitations of his condition to welcome him to participate whenever he can, and seeing his school work that he is able to complete with his tutor, sometimes at 6pm at night, when he has the right energy window to mentally and physically function for school or any work.
He has always been a social being and thrives when connected with friends and family. At the same time, he seems to be self-sufficient in being alone. He finds ways to connect with friends. Some are classmates from primary school, one from daycare, since before pre-school, and new friends he made through our network of children and parents who have ME/CFS and related illnesses. He can’t wait to have a sleepover with his local buddies once the pandemic is over.
My son matured in respect to life events quicker than most children his age typically do. We have seen our share of bereavement and personal illnesses. I know already from his kindness and caring that seem to come naturally, that he will be an amazing caregiver one day, whether to close loved ones or perhaps professionally. I am caregiving to him, even though the word never becomes a part of my daily vocabulary. I see myself not as much as a caregiver to my son who is moving through a chronic illness, which we hope will soon have a cure, but rather being a mom who loves and is here as well as can be for her beloved precious son. If I pause and notice, there is a lot of illness in our lives, and associated caring for the illnesses, of our loved one’s and our own.
I have paused volunteering for hospice, for the time being. I also am not making house calls as a death doula, both due to Covid-19 and while we are healing in our own household. Our healing is a part of our intention and desire. As importantly, living life as is, finding the joy and beauty in everyday moments is not only our intention but natural tendency, which keep us going. By no means, I am an expert on living, being ill, or caregiving. I am but one. My life events have carved ways of being with what is, which may be familiar for some of you, foreign still for some of you. Whether they resonate or not, I feel they are worth mentioning to see if there is something to take away and apply in your life. Perhaps you can also comment to note what works for you.
With Love,
Yasemin Isler
March 25, 2021