Chronic Illness Grief Quotes

I encourage readers recovering from a kidney transplant to heed the advice of their medical practitioners.

To many people, I am no longer just myself. I am a reminder of a thought that is difficult for the rational brain to accept: our bodies might fail at any moment.

A chronic illness is not difficult to live with because it is endless. It is difficult to live with because it is unpredictable. But like grief, every flare ends, and though the looming threat is constant, you learn to live beside it. A shadow of mixed blessings. It does not heal as wounds do, but it teaches you of your own strength till you can wear it like a battle scar.

I have another scan this week," I say lightly, hoping to reassure my loved ones that it is safe to rejoin my orbit. There is always another scan, because this is my reality. But the people I know are often busy contending with mildly painful ambition and the possibility of reward. I try to begrudge them nothing, except I'm not alongside them anymore. In the meantime, I have been hunkering down with old medical supplies and swelling resentment. I tried— haven't I tried? — to avoid fights and remember birthdays. I showed up for dance recitals and listened to weight-loss dreams and kept the granularity of my medical treatments in soft focus. A person like that would be easier to love, I reasoned. I try a small experiment and stop calling my regular rotation of friends and family, hoping that they will call me back on their own. _This is not a test. This is not a test._ The phone goes quiet, except for a handful of calls. I feel heavy with strange new grief. Is it bitter or unkind to want everyone to remember what I can't forget? Who wants to be confronted with the reality that we are all a breath away from a problem that could alter our lives completely? A friend with a very sick child said it best: I'm everyone's inspiration and and no one's friend. I am asked all the time to say that, given what I've gained in perspective, I would never go back. Who would want to know the truth? Before was better.

A sacred wandering is a wilderness journey. You can find yourself in the midst of life transitions. Major upheavals. A career change. Soul searching. Infertility. Relocation. Illness. Depression. Divorce. Loss of a loved one. Unemployment. Returning to school. The empty nest.

Several years ago I was lecturing in British Columbia. Dr [Simon] Wessely was speaking and he gave a thoroughly enjoyable lecture on M.E. and CFS. He had the hundreds of staff physicians laughing themselves silly over the invented griefs of the M.E. and CFS patients who according to Dr Wessely had no physical illness what so ever but a lot of misguided imagination. I was appalled at his sheer effectiveness, the amazing control he had over the minds of the staid physicians….His message was very clear and very simple. If I can paraphrase him: “M.E. and CFS are non-existent illnesses with no pathology what-so-ever. There is no reason why they all cannot return to work tomorrow. The next morning I left by car with my crew and arrived in Kelowna British Columbia that afternoon. We were staying at a patient’s house who had severe M.E. with dysautanomia and was for all purposes bed ridden or house bound most of the day. That morning she had received a phone call from her insurance company in Toronto. (Toronto is approximately 2742 miles from Vancouver). The insurance call was as follows and again I paraphrase: “Physicians at a University of British Columbia University have demonstrated that there is no pathological or physiological basis for M.E. or CFS. Your disability benefits have been stopped as of this month. You will have to pay back the funds we have sent you previously. We will contact you shortly with the exact amount you owe us”. That night I spoke to several patients or their spouses came up to me and told me they had received the same message. They were in understandable fear. What is important about this story is that at that meeting it was only Dr Wessely who was speaking out against M.E. and CFS and how … were the insurance companies in Toronto and elsewhere able to obtain this information and get back to the patients within a 24 hour period if Simon Wessely was not working for the insurance industry… I understand that it was also the insurance industry who paid for Dr Wessely’s trip to Vancouver.

They entered the summer parlor, where the Ravenels chatted amiably with his sisters, Phoebe and Seraphina. Phoebe, the oldest of the Challon siblings, had inherited their mother's warm and deeply loving nature, and their father's acerbic wit. Five years ago she had married her childhood sweetheart, Henry, Lord Clare, who had suffered from a chronic illness for most of his life. The worsening symptoms had gradually reduced him to a shadow of the man he'd once been, and he'd finally succumbed while Phoebe was pregnant with their second child. Although the first year of mourning was over, Phoebe hadn't yet returned to her former self. She went outdoors so seldom that her freckles had vanished, and she looked wan and thin. The ghost of grief still lingered in her gaze. Their younger sister, Seraphina, an effervescent eighteen-year-old with strawberry-blonde hair, was talking to Cassandra. Although Seraphina was old enough to have come out in society by now, the duke and duchess had persuaded her to wait another year. A girl with her sweet nature, her beauty, and her mammoth dowry would be targeted by every eligible man in Europe and beyond. For Seraphina, the London Season would be a gauntlet, and the more prepared she was, the better.

In best-case scenarios, the loss of a parent can be anticipated. Perhaps they had a known or chronic illness that slowly deteriorated their health over time. Perhaps their healthcare provider had told you a proposed time limit that your parents had left. Perhaps you’d had discussions with your parents in their last days and had had the opportunity to prepare yourself mentally and emotionally. In cases like these, you’re given the chance to say goodbye and have closure.

Of course, it’s now obvious why he was so angry that day. People don’t move into hospice to live but to die. And that half an egg sandwich I ended up making him–that sandwich was the last meal he ate in our Haight-Ashbury apartment, our one true home.

Chronic pain and grief over loss nonetheless remain as unavoidable facts of lives shaped by catastrophic accident, chronic and progressive illness, or genetic predisposition. Despite their strategic elision in disability studies or transcendence in happy stories in the popular press about trauma overcome, bodily pain and grief persist, to be accounted for as best one can. This book is my contribution to that record. I find that Emily Dickinson is right -- in the wake of great pain, the pulse of life slows, and the interval between life-sustaining beats interminably extends. Life is suspended. In that interval, the difference between the one you once were and the one you have become must be addressed, the pain acknowledged, and the grief admitted. It can be a treacherous process, given all that might be lost.

I don’t know if there is a right and wrong way to grieve. I just know that losing you has gutted me in a way I honestly didn’t think was possible. I’ve felt pain I didn’t think was human. At times, it has made me lose my mind. (Let’s just say that I went a little crazy up on our roof.) At times, it has nearly broken me. And I’m happy to say that now is a time when your memory brings me so much joy that just thinking of you brings a smile to my face. I’m also happy to say that I’m stronger than I ever knew. I have found meaning in life that I never would have guessed. And now I’m surprising myself once again by realizing that I am ready to move forward. I once thought grief was chronic, that all you could do was appreciate the good days and take them along with the bad. And then I started to think that maybe the good days aren’t just days; maybe the good days can be good weeks, good months, good years. Now I wonder if grief isn’t something like a shell. You wear it for a long time and then one day you realize you’ve outgrown it. So you put it down. It doesn’t mean that I want to let go of the memories of you or the love I have for you. But it does mean that I want to let go of the sadness. I won’t ever forget you, Jesse. I don’t want to and I don’t think I’m capable of it. But I do think I can put the pain down. I think I can leave it on the ground and walk away, only coming back to visit every once in a while, no longer carrying it with me. Not only do I think I can do that, but I think I need to. I will carry you in my heart always, but I cannot carry your loss on my back anymore. If I do, I’ll never find any new joy for myself. I will crumble under the weight of your memory. I have to look forward, into a future where you cannot be. Instead of back, to a past filled with what we had. I have to let you go and I have to ask you to let me go. I truly believe that if I work hard, I can have the sort of life for myself that you always wanted for me. A happy life. A satisfied life. Where I am loved and I love in return. I need your permission to find room to love someone else. I’m so sorry that we never got the future we talked about. Our life together would have been grand. But I’m going out into the world with an open heart now. And I’m going to go wherever life takes me. I hope you know how beautiful and freeing it was to love you when you were here.

To be chronically ill is to be in a state of ever-present “camouflaged grieving,” as the historian Jennifer Stitt puts it. It was this ever-present grief I felt was being swept under the rug when my friend counseled me to see the good that had come of my illness. She wasn’t wrong that something had come of it—but her quick counsel negated the complexity of the quest.

After a chronic illness is diagnosed, everyone comes around the sick person. But years later it is easy to forget or say surely it is not that bad; it must be in his head. But over time he will watch his life eroded by the disease as it eats away at his body and his capacities. He will struggle with depression. His grief will be relentless. He will grieve his inability to do what his heart longs to do. He may eventually go from a full-orbed life to a bed. If he takes medication, he will suffer from side effects that will debilitate him in additional ways. His sleep will suffer, he will endure pain, and the daily care of his body will absorb more and more of his energy. This could last for decades. What will such a man need from you? How will you handle all of his emotions? Can you allow him to grieve, weep, and ask questions? Can you endure with him what he has no choice to endure? You will get tired of his illness and his limitations—so will he. You can leave; he cannot. Many will leave or forget. Grief does not come in neat packages.

Maye grief was like a chronic illness, something that could hide dormant in your system but activate at any time.