Grief: great sadness
This definition is so appropriate for someone trying to grieve in a way that is inconspicuous.
A chronic illness is very different to a terminal illness. It did not feel like there was defined point after which my life would never ever be the same again. Grief in relation to my illness meant something contained. It meant a great sadness.
But grief is far more than that. Words like, ‘mental suffering and distress’ and ‘deep sorrow’ seem more suitable as descriptions. But that kind of grief in response to the news of my chronic disease would have felt indulgent; an undeserved and unwarranted reaction.
After my first hospitalization, I read Elisabeth Kubler-Ross’ memoir of living and dying, “The Wheel of Life”. It was beautiful, if bizarre to me at times, but always honest. Elisabeth Kubler-Ross is well-known for her work with the terminally ill and for her pioneering book “On Death and Dying” where she first discussed her theory of the five stages of grief (denial, anger, bargaining, depression, and acceptance). Although people express grief in different ways, and for different lengths of time and intensity, having a framework for grieving helped me to make some sense of my own grief. The grief I didn’t believe I deserved to feel, the grief I felt I needed to moderate and temper, the grief that has been largely unexpressed and acknowledged.
I have realized that after 18 years, I am still at the beginning of my mourning. I have largely been in denial for 18 years. But I have to face what feels too overwhelming to comprehend. And I have to admit the extent to which this denial has caused me physical and emotional damage and affected significant relationships. I am only beginning to understand and accept this.
I find Kubler-Ross’ description of the denial stage really personal. She talks about the first reaction being the denial of the reality of the situation in order to rationalize overwhelming emotions. She expresses words like “blocking out” and “hiding”. Speech therapy and audiology, or Logopaedics as it is called at the University of Cape Town (UCT), is in the Medical faculty. Whilst in the medical library doing research for an assignment, I noticed that the gastroenterology books were opposite the speech therapy books. I remember reading about Ulcerative Colitis and all of the symptoms and co-occurring health issues and honestly thinking that the author and researcher must be mistaken. But, even in my state of denial, I had to admit that the author being mistaken was highly unlikely. I finally reasoned that I only really had a few centimetres of disease, which meant that the book obviously didn’t apply to me. I put it back on the shelf, resumed the research for my assignment and refused to read any books on Ulcerative Colitis again.
But when reality emerged and, with it, emotional pain, I felt anger. The anger was staggering in its intensity. The doctor who put me on a drug trial knowing I was highly allergic to one of the drugs being tested, was the person at whom my anger was aimed for years. At diagnosis, no more than five centimetres of my large intestine showed evidence of disease. After the drug trial that resulted in my hospitalization, the disease spread to most of my colon. Of course the anger did nothing to minimise the disease nor make me healthier, but rather took emotional energy and fuelled more rage. I raged mostly at things in the world that were beyond my control, trying to fight the powerlessness that I felt.
Powerlessness is a strong feeling of being incapacitated, helpless and being unable to act. It is a feeling that I cannot bear, a state that I will do almost anything to free myself from. This is almost impossible to do with a chronic illness. But I am now on a journey to take back control in a healthy and gentle way.