When sickness comes and does not leave, we must learn to live with the loss, disappointment, and sorrow of chronic illness. In facing a serious and ongoing illness, it is normal for a person to feel a sense of chaos and loss, not unlike a death. Mourning for who you once were and all that you were becoming is striking like grief. Too many books on sickness were not helpful for me because the majority were based on two scenarios: enduring a harsh treatment and then getting better, or dying. These topics did not suit my situation. Sure, at one point death was a possibility but that has resolved. Harsh treatments were certainly in order, but these did not last a couple of months, rather years and there is still no end in sight. How does one cope with unending disease and ongoing treatments?
What helped me most were books on grieving. The advice given to people who have lost a loved one became principles I applied to myself, in the loss of my career, relationships, abilities, and well, “life” in general. One such book that helped me say goodbye to who I was and to release the expectations I had for my future was Unattended Sorrow by Stephen Levine.
Not only did Levine help me grieve, but he showed me the way to create a “new” normal and lovingly accept myself and the type of life I am living. Applying his ideas and methods was like opening my heart up in hell and watching my essence burn away. But it forced me to attend to my sorrow instead of burying it. This sorrow of suffering feels “like a low-grade fever; it troubles our sleep and drains away our days; it scatters intuition and creates an underlying anxiety; it sours the eye and ear and leaves a distaste in the mouth; it’s the vague uncertainty that permeates every though before every action; it’s the heart working as hard as it can.” And that is how I felt. Dealing with the chaos and uncertainty of chronic illness is like the waves of grief that wash upon the shores of someone who has suffered a great loss.
Life is full of loss and suffering. Each generation experiences a war or recession or natural disaster. By now we should be adept at enjoying life and carrying on with loss. Yet, I was shocked by the pain and weakness that struck. I became withdrawn and a little dead on the inside. Becoming weak, dependent, and diseased felt foreign. Chronic illness created loss upon loss. I said goodbye to a career, hobbies, goals, routines, committees, and even the ability to enjoy a shower or cook a meal. There are many who are much worse off than I am. Sometimes financial ruin follows an illness because of loss of work. Sometimes spouses leave and the wedding vows are denied. Some lie in bed for years, the only outings to the hospital or clinic. Those whose identities were wrapped up in marriage or career, or those who wore “busy” like a badge of honour, suffer greatly when these disappear and they are left alone in silence.
After getting sick in the prime of life I decided to not deal with the losses. I just disappeared. I left the country for treatments and help. I had to live away from my community and spouse in order to receive full-time care. I turned off my emotions. I did not allow worry or pity or fear to crop up. I knew if I faced this emotionally instead of scientifically I would sink into a deep pit of sadness, not knowing how to emerge. I was ruthless with myself. I abandoned my soul and proverbial heart. I refused to miss my husband or friends. When I did speak with them I was cool and calm and held my cards close. The only pain I allowed myself to feel was the physical pain that resulted from the diseases, and surgeries, and procedures. I became robotic in order to survive the first few years of the chaos. I went into survivor mode. I put on my fight face and did not “feel” emotions until it was safe to do so. I researched every medication, every supplement, every procedure. I treated my body as an experiment, and myself like a patient.
Years later, once I was physically stable and we found treatments that manage my disease I determined it was time to face what happened on an emotional level. Well, not so much determined as was forced. Nightmares and flashbacks haunted me. Almost every night I had a recurring dream too frightening to repeat here. During the day I would have moments of peace and then out of nowhere a memory would flash. I would become dizzy, breathless, and nauseous.
A few months ago upon opening the drawer to put away laundered clothes I was pushed backward. It was like the drawer had a special seal and opening it released not only a memory but also a gust of wind. I fell back onto the bed, gasping for air. This drawer had previously been filled with syringes, vials, and pills. When I opened it this day to put clean socks inside I was thrown back to the wee hours of the morning a year before when I could not breathe very well, my chest ached, and blood vessels were throbbing in my legs. There was no point in going to the ER; this had been a regularly occurring nighttime affliction. I could do the injections and take the proper pills on my own. I never allowed the severity of these nights to be felt. I looked upon them logically, and dealt with it. I had to be my own nurse and treated myself as a patient. After these episodes, now a year later, the patient-me freaked out. The nurse-me was no longer there. Just a frightened, sad, and desperate me sat on the bed, traveling back in time, facing those scary nights. These sort of things happened often. Sometimes I felt the tubes coming out of my chest, months after they were removed, and felt searing pain that wasn’t possible because the central line or PICC lines were no longer there. For a moment I would be traveling down the highway with a staph infection, an oozing and bleeding site, with no cell service or physician available to help. Then I would snap back to reality and be sitting on the couch watching Seinfeld in current time.
These nightmares and flashbacks have pretty much ended. They are mostly gone now because I dealt with the emotional aspect of what happened, and continues to happen. I have allowed myself to be human again. Books like Unattended Sorrow helped me heal from the past, and give me strength to deal with the present. I cannot speak to PTSD or what will help sufferers of PTSD, but Levine’s writing guided me back to the scariest and saddest points and helped me experience those moments emotionally, safely. At times I had an angry outburst or mourned through tears for a half hour, but then release would come. All the anger and fear I had suppressed came bubbling up, but the methods in the book helped me feel and then release them.
Reliving December 2012 required a lot of help. My great grandma, the pillar of our family, passed away the same week my parents separated. I had just received a dire diagnosis and had to move away from my husband in order to have full-time care. I said goodbye to my career and students, left my hobbies, and started to watch my body alter. I lost muscle mass quickly and suddenly tubes emerged from my body. I didn’t ask “why me?” or burst into tears. I just faced it by detaching myself from my soul, but Levine’s work helped me return to that time and deal with it properly.
I am now in the phase of management. Some of you who have been sick for decades know this ebb and flow of hope. There are periods of hope and remission and then that brightness is snuffed out by a relapse or flare-up. Disappointment after disappointment creates ongoing grief and mourning. But this book helps by creating an abundant life regardless of health and ability in any given moment. To alter our expectations and values prevents such lows. Instead of dwelling on unsatisfied desires and unfulfilled ambitions or lost loves, the book guides the reader to find an anchor and deep peace.
Unattended Sorrow revealed that a) getting sick was not my fault, b) I am not a burden, c) I must be gentle with myself, and d) just being is much more valuable than any “meaning of life” crap mainstream society sells.
It taught me how to grieve the old me, and the me I planned on becoming and to accept where I am and to live abundantly each day. My joy and peace are not determined by what happens or does not happen. This solitary pilgrimage ripped my heart out and set it on fire. I watched expectations and hurts and anger burn away. And then sweet release came and I was handed a new heart.
After Levine’s work I studied and applied the words of Joyce Meyer to building a new “normal.” A powerful book that I read over and over that provided peace and renewal is Beauty for Ashes by Joyce Meyer. When finished grieving, I rebuilt my life with a new heart. The guidance from this uplifting book is unmatched. Past abuse, misunderstanding, illness, and pain cause mourning. We can walk around in torn clothes, wailing and dumping ashes on our heads for a little while. But then we must allow room for beauty and calm emerge.
I am wishing you the peace and beauty I have found.