International MPN News, Science & Opinion

Mourning on the Long and Winding Road

        Harvey

 by Harvey Gould

Those of us who’ve lost a loved one understand that there are stages of loss and grief. At least until I was diagnosed with PMF I hadn’t understood that you can also mourn the loss of your health. Maybe I’m just a slow learner.

When my father died someone gave me a book, The Jewish Way in Death and Mourning, by Maurice Lamm. Though written from the perspective of Orthodox observance of mourning a death and though I’m not Orthodox, I found the book helpful as a guide through my period of grief. It was explanatory, not judgmental, i.e., the author explained Jewish Orthodox observances about mourning and the bases for them without preaching the necessity of following them strictly, or at all. In short the author explained the collective experience of those over thousands of years who’d suffered through the grief of the death of a loved one and what had helped them cope. Many of the explanations made sense to me and by following some of those observances I felt a kinship with those who’d preceded me in their mourning long ago. What others had undergone for centuries helped me cope.

Of the many things I learned from mourning my father’s death and a few years later, my mother’s, is that there is no time limit for grieving. It’s nonsense to believe that within a year or two or ten you’ll be “over it”. Grieving is about as personal a human emotion as possible and we each do it in our own time and in our own way, but there is no magic bullet.

Then I was diagnosed with PMF and voila! Initially, trying to deal with the reality of what I’d been told was almost impossible. My life was instantly turned upside down. I’d thought of myself as a healthy man; I was actively involved in a successful law practice; I was married to my soul mate; had three grown children; and I was looking forward to sharing many years and happy events with those whom I loved. Suddenly, I was told I’d likely be dead within three to five years and that the end wouldn’t be pretty. I also was told that I might be unable physically to continue a rigorous law practice and thus, I knew that my financial planning for the future had rather rudely been terminated.

When my wife and I first heard this news in a lengthy interview with my hem/onc, though we asked follow up questions, both of us were reeling from the blow. That same night, my three children came to our house and we all had a good cry. After a little time to reflect on what was happening it struck me that my initial reaction was typical of the first state of grief—denial—and though I had the full support of my wife and children, I also was feeling some sense of isolation. Hey! This was my disease. This was my death sentence. Even surrounded by those who loved me, at least initially I struggled with my own sense of reality, or lack of reality, about my sudden pas de deux that I was dancing with death.

And so I came to understand that we grieve not only over the death of someone whom we love, but that we also go through a mourning process in response to our own serious illness. There is no set pattern or time for undergoing the various stages. Rarely do we neatly progress from one element to the next, and sometimes we bounce back and forth between the various stages, but generally we’ll feel not only denial, but also anger, bargaining, depression and (hopefully) acceptance.

I found that after the shock and denial began to wear off I became angry. Why me? This isn’t fair. I’m not ready to face pain and a downward spiral. Though I’ve never felt anger toward me from my wife or others who love me, eventually I came to accept that such anger could make perfect sense. Though it might not be rational to blame me for having this disease, emotionally I could understand those who loved me resenting that I was sick, resenting me causing them pain, for disrupting their lives and plans, and likely for “leaving” them sooner than ought to be the case.

Ah, then came the bargaining and the second guessing. For me this was natural. Hell, I’m a lawyer. And so came all the “if onlys”. If only God gets me out of this mess, I’ll triple my charitable giving; if only I’d been a better person, God might not have afflicted me with this curse; if only I’d paid better attention to my body, maybe I could have done something to have prevented what’s now going on. If only. If only. If only….

I became sad. I thought about my funeral and sometimes even visualized observing it and grading the various eulogies. I’d snap out of those sick moments and be sad that I’d be “leaving” my wife decades before I wanted to—and yet I knew I was blessed precisely because she loved me; she wasn’t afraid to cry with me, to hold me and to provide me a sense of reassurance by the pure glow of the love flowing between us.

In my case, again blessed, I reached a level of acceptance. I fully recognize that this is not something that all people who mourn can or do achieve. Sometimes, death arrives before having the chance to prepare for it. Some, even with adequate time, will never achieve it, but for those who do reach a level of acceptance time is necessary—time to gain perspective, to give thanks for what we have experienced and still will and time for periods of calm to help us come to terms with what we face.

In my case, so far I’ve beat the odds. I’m now twelve years post diagnosis and long ago decided I wasn’t about to waste whatever remaining time I have denying, being angry, bargaining or being sad. I have too much living to do. Do I ever slip back into one or more of those phases? Of course, but I don’t linger there for long anymore. Instead, what I’ve come to accept is that the critical part is to live life while its gift is still mine. Advances have been made in medical science since my diagnosis. More are on the way. There is hope—and if those advances can’t save me, I’ve still had this additional time which now I treasure like never before.

Just as previously I gained solace from sharing in some of the rituals that others had performed centuries before me as I mourned the deaths of my parents, now I feel a kinship with those reading these pages, knowing that we all mourn a similar loss, but hoping that as a family we each can gain strength from one another’s triumphs and mourn for each others’ losses. And those nights when my wife and I share a drink together we toast the sunset, each other, and you.

L’chaim! To life!

Take me back to the Contents

© Harvey Gould and MPNforum.com, 2013. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Harvey Gould and MPNforum.com with appropriate and specific direction to the original content.

Comments on: "Mourning on the Long and Winding Road" (4)

  1. Thank you Harvey for showing us that one can mourn over ones health along with the loss of our love ones. For the last five years I in a way have been mourning my lack of energy (I use to sail, kayaking, etc) and have realized that I have as of yet, not accepted my condition – Once I can accept it, then I can truly live.

    For those who do not know, Harvey has written a book “A Fierce Local”, which is about Ireland, his travels and his disease. This is a book not to be missed, it is a real page turner.

    Looking forward to you next book Harvey.

  2. Kathy Van Meter said:

    “Acceptance” is a beautiful word, it allows you to live your life. Thank you so much for sharing. Peace……………..

  3. Thank you for this Harvey. I laughed out loud at your “lawyer” approach to bargaining, and let myself touch a little, the grief that is always there with my losses- health, family and friends. It seems better then trying to shut it down. In a grocery store line-up at Chrsitmas an elderly fellow (92) and I shed a few tears about missing our mothers and being “gimpy”- it seemed like a friendly thing to do- and the smiles of commiseration sure felt good.

  4. Thank you for your beautiful, honest, positive article.
    L’chaim!

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