Illness As A Gift?

"How can this make me a better person?" - Rabbi Harold Kushner, author of When Bad Things Happen to Good People

In the August 14, 2007 Science section of the NY Times Jane E. Brody writes about “Thriving After Life’s Bum Rap”.

Can getting cancer make you happy? For Betty Rollin, survivor of two breast cancers, there’s no question about it. In her newest book, “Here’s the Bright Side,” Ms. Rollin recounts: “I woke up one morning and realized I was happy. This struck me as weird. Not that I didn’t have all kinds of things to be happy about — love, work, good health, enough money, the usual happy-making stuff. The weird part is, I realized that the source of my happiness was, of all things, cancer — that cancer had everything to do with how good the good parts of my life were.

It turns out there is often — it seems very often — an astonishingly bright side within darkness. People more than survive bum raps: they often thrive on them; they wind up stronger, livelier, happier; they wake up to new insights and new people and do better with the people around them who are not new. In short, they often wind up ahead.”

This is not to suggest that battling cancer is pleasurable. Frustration, anger and grief are natural reactions. Cancer forces people to put their lives on hold. It can cause considerable physical and emotional pain and lasting disfigurement. It may even end in death. But for many people who make it through, and even for some who do not, the experience gives them a new perspective on life and the people in it. It is as if their antennas become more finely tuned by having faced a mortal threat.

As a woman with incurable ovarian cancer recounted this spring in The New York Times: “I treat every day as an adventure, and I refuse to let anything make me sad, angry or worried. I live for the day, which is something I never did before. Believe it or not, I’m happier now than I was before I was diagnosed.”

Michael Feuerstein, a clinical psychologist and author with Patricia Findley of “The Cancer Survivor’s Guide,” was 52 when he was told he had an inoperable brain tumor and was given a year to live. But Dr. Feuerstein didn’t die — he survived extensive debilitating treatment and gained a new outlook. He wrote: “I now realize that I am fortunate. Now, after the cancer, I find I can more easily put life in perspective. I re-evaluated my workload, opting to spend more time at home. I take more time for what matters to me most: my wife and my children and grandchild. I also allocate time to better understand cancer survivorship from a scientific point of view, so I can help others in my situation translate this work into useful answers to the question, ‘now what?’ I am optimistic about the future and excited to leave my unique mark on the world.”

Dr. Harpham is a 16-year survivor of recurrent chronic lymphoma. In her latest book, “Happiness in a Storm: Facing Illness and Embracing Life as a Healthy Survivor,” she states: “Without a doubt, illness is bad, yet survivorship — from the time of diagnosis and for the balance of life — can include times of great joy among the hardships. You can find happiness. Chances are the opportunities for happiness are right in front of you. You might need to explore different ways of seeing yourself and the world around you,” Dr. Harpham writes. “In doing so, you discover new types of happiness waiting to be tapped, such as the happiness of knowing love in a whole new way. Happiness in a storm,” she concludes, “is never about enjoying your illness but embracing your life within the limits of your illness, and figuring out how to feel happy whenever possible.”


Jill Sklar in her book The Five Gifts of Illness’ describes these gifts as Perspective through Adversity, Time and Being, The Purpose in Helping Others, Living Life in Balance, and Resetting the Future. She writes in the introduction to her book:

It was during one of those sleepless nights at the hospital, tossing and turning to try to find a comfortable spot on the plastic covered mattress, that I realized the disease I had wasn’t all bad, that there were wonderful things I had gained because I had suffered. I had known true misery from the illness, but that night I also discovered the proverbial other side of the coin.”

Per aspera ad astra?

Posted August 14, 2007

8 comments:

Michael N. Hull said...

Let me kick this off with a comment on Crohn’s disease which is the ailment Jill Sklar is suffering from. In the book “The Rise and Fall of Modern Medicine” by James Le Fanu Abacus 1999 it is mentioned that Crohn remarked in the early 1900s that this disease resembles an intestinal form of tuberculosis. One suspected pathogen is Mycobacterium paratuberculosis, a cousin of the TB bacterium.

I later came across another discussion about this but unfortunately I cannot locate the reference at the moment. Anyway my notes include the following statement from the article:

There seems to be a connection between Crohn's Disease and Para tuberculosis bacteria in milk. The disease is mostly found in the US, UK and Scandinavia and it's on the increase. The incidence in the US, which has been increasing steadily since the 1940's -- doubling, then tripling, then quadrupling -- is now approaching that of an epidemic. The most rapid increase has been seen in children. In the 1940's and early 1950's there were no recorded cases of Crohn's in teenagers. Currently one in every six new cases diagnosed are under age twenty.

The cattle disease, which became known as Johne's disease (pronounced yo-neez), is known to be caused by a bacteria called Mycobacterium paratuberculosis, also known as Mycobacterium avian subspecies paratuberculosis, or MAP. MAP belongs to an infamous class of microbes called Mycobacteria which cause diseases such as tuberculosis and leprosy. Sixty-five percent of bowel samples from Crohn's patients came up positive, compared to only 4% of those with the similar but different disease ulcerative colitis. Leprosy, for example, has still never fulfilled more than one of the four Koch criteria, because it is not possible to culture the culprit bacterium in the laboratory.

Crohn's disease has a very spotty distribution in the world but it's seen only in milk-drinking areas--Australia, southern Africa, Europe, the United States, Canada, New Zealand. Interestingly, it's not seen in India, where they do drink milk, but they boil it first. We can cure most pulmonary TB with antibiotics, but when TB bacteria move from the lung to the intestine and cause intestinal TB, it cannot typically be cured by antibiotics alone. Before we knew that ulcers were treatable with simple antibiotics, people underwent repeated grueling surgeries--some almost as risky and debilitating as Crohn's sufferers now undergo. Not only would a cure save Crohn's sufferers from the surgeon's knife, but it would also protect them from the toxic chemotherapy regimens currently used just for symptom relief, which can include immunosuppressants like steroids, cancer chemo agents and even thalidomide.

Researchers started trying antibiotics they thought might kill MAP in Crohn's. Early results were disappointing, leading to much of the deep-seated resistance among clinicians to accepting MAP as the cause of Crohn's. Yet in hindsight, it turns out that doctors were using the wrong antibiotics, in the wrong combinations, for an inadequate period of time. Another problem with some early studies was that they used monotherapy--meaning that they only used a single agent--which is rarely, if ever, effective in Mycobacterial diseases because Mycobacteria are so adept at developing resistance. By giving multiple antibiotics at once, one decreases the chance that resistance will develop.

Adequate treatment duration had also been neglected. Mycobacterial infections in general are difficult to eradicate; prolonged treatment is required and relapses, either on treatment or off treatment, are common. Tuberculosis takes months to treat; leprosy takes years--sometimes a lifetime--to treat. Our best estimate of how long it might take to rid the body of MAP can be made by studying pathogens in the same species. Infections caused by one of MAP's closest cousins routinely require treatment for 3-4 years with 3 or 4 different antibiotics. In some cases, it took five antibiotics all used in combination for 5 years before clinical improvement was achieved. We cannot expect trials using too few drugs, the wrong drugs, or even the right drugs for too short a time, to be successful.

Regards,
Michael

William Kyle said...

The interesting thing about a chronic illness is how people seem to find a meaning for their life through the suffering. Finding and realizing this meaning seems also to permit people to face the future with peace and optimism. Without grasping this understanding of their life’s meaning I thing that people would quickly get very depressed and just give up on any desire to live. Certainly in a mechanistic world death would relieve all suffering and would be the preferred path but then the non-mechanistic aspects of life (one might say the spiritual aspects) take over and life proceeds with hope and joy.

Most of us who have never experienced a serious illness probably don’t ask the question “What is the meaning of MY life”. But it is a question that we all must answer sooner or later.

Peace
Will

Arthur McCorry said...

Will, I agree and I would add that a chronic illness situates one firmly in the present. One enjoys and lives contentedly in the ‘now’. One does things now, not some time to be got to in the indefinite future.

I can’t remember the source of the quote that “if one has one foot in the past and one foot in the future then one is pissing on the present”. There is a lot of truth to this and it is unfortunate that most of us don’t learn this lesson until a life-threatening illness arrives.

AMC

James Carnaghan said...

Will:

You say that everyone must eventually face the question “What is the meaning of MY life”.

As an atheist I believe that life has no meaning or purpose anymore that say a random asteroid moving through the nether regions of space has any purpose or meaning. However, that asteroid can have a ‘meaning’ to me especially if it is headed in my direction and I know it is coming.

I tend to look at the human situation in the same way. My life has no meaning to me but it does have a meaning to those with whom I interact. Conversely, the lives of people with whom I interact have meaning to me.

For example, to my grandchildren I have ‘meaning’. I bring them joy, they delight to see me and I am a source of happiness to them. Likewise they do exactly the same for me.

If there is a God who created us then I can see that we have meaning to ‘Him/Her/It’ and I can also see that if one believes in God then God can have meaning to that person.

I also would suggest that we can make ourselves ‘meaningful’ to others, for example as Sklar points out through acts of altruism or through the pursuit of deep and loving relationships.

Sorry that this thought is so disjointed. I guess that what I am trying to say is that I will never address the question about the meaning of MY life – that will be for others to do but I can perhaps tackle the question: “What is the meaning of YOUR life to me”. That question I have already been able to answer with my grandchildren (and with many others I hasten to add).

Jim

Diana Malcolm said...

Jim, I found your comments on “meaning” very thoughtful. As I was considering what you said the question: “What is the purpose of MY life?” struck me as one that could be handled in a similar way but from the opposite perspective.

You say that the meaning of one’s life is that which is known and experienced by others. Could I add that the “purpose” of one’s life is determined by the individual him/herself?

If I use the example of your grandchildren I might say that one “purpose” of your life is your actions to bring happiness into their lives (the position I hold) while one “meaning” of your life is determined by them according to the happiness so engendered (the position you hold).

The two positions are complementary.

Now assuming that God exists what is His position with respect to ‘purpose’? You wrote:

“If there is a God who created us then we have meaning to ‘Him/Her/It’ and God can have meaning to each person.”

To which I would add:

If there is a God who created us then He has a purpose for us and God can provide purpose to each person.

With or without a belief in God I think that both atheists and theists could agree that ‘meaning’ is for others to determine while ‘purpose’ is for each of us to determine.

As you can see I too ramble!!

Di Di

Elizabeth Murray said...

Jim and Di Di,

In a 1953 issue of Look magazine Bertrand Russell was asked “What is the Meaning of Life to the Agnostic”?

He replied: I feel inclined to answer by another question: what is the meaning of ‘the meaning of life’? I suppose what is intended is some general purpose. I do not think that life in general has any purpose. It just happened. But individual human beings have purposes, and there is nothing in agnosticism to cause them to abandon these purposes.

Both of you would find favor in Russell’s view!

Reason rules!
Liz

Megan Zamprelli said...

Having lost my husband to prostate cancer I do not understand how cancer or any other chronic illness brings ‘happiness’. Yes one sees things differently and one has a different perspective on life. There are also lots of ‘happy’ times. However, I can’t see if anyone had offered my husband and I the opportunity to have the cancer magically disappear that we would have turned that down.

People have amazing strength in times of adversity but they are still times of “adversity”

MAZ

Stan Preston said...

MAZ

In this CNN article there is an inspiring story of a young blogger’s life and death from cancer. He too had happy times but I agree if the cup could have been lifted from him I’m sure he would have accepted.

NEW YORK (CNN) -- Miles Levin was determined to have his say in life, even with cancer ravaging his young body. So when he died Sunday, six days before his 19th birthday, he had blogged a lifetime of thoughts and dreams, words that somehow pierced through cyberspace and moved tens of thousands of readers to respond. He isn't the only person to have written about a dying man's journey, but his wit and wisdom and choice of words, captured the imagination of his readers. His wisdom was sought by parents of dying children, those recovering from the brink of death, even ordinary people captivated by his enjoyment of life in the face of death. He launched his blog in 2005 simply welcoming new readers and telling them he'd been stricken by a pediatric cancer called alveolar rhabdomyosarcoma, a cancer that strangles the muscle tissues. He declared that his motto would be simply: "It's always something." And it was. He got sick and then better and then sick again and still managed to navigate the milestones of adolescence: keeping up in school, a first serious girlfriend, college applications, prom. He became a little famous and laughed at himself. He wrote about the value of life and somehow acquired an almost supernatural ability to appreciate small pleasures such as a sunny day and the presence of a loving family.

This notion that cancer and the fear of death could expand your heart and mind was adopted by readers as far away as Asia and South America. He declared that perhaps he'd been put on Earth to show people how to die of rhabdomyosarcoma with grace. When he was too sick to write, his mother, Nancy, chimed in: "The boy Miles was in June of '05 was sweet, innocent, disorganized and ungrounded ("earth to Miles"). The man that Miles is today is clear, focused, heart centered, and purposeful. "It was cancer that intervened. That deadly disease carried the power of transmutation, and Miles accepted the offer." A few months ago, knowing his high school graduation was probably his last milestone, he wrote: "I can rest assured that even if I succumb to the rogue cells, I will leave behind a legacy of victory. "Dying is not what scares me; it's dying having had no impact. I know a lot of eyes are watching me suffer; and -- win or lose -- this is my time for impact." He did have an impact. Fifteen-thousand bloggers were responding monthly this summer.

SP