Michael E. Holtby, LCSW, BCD
THE COURAGE TO LIVE
First published in Resolute!, June 1997
Not to be reproduced without the permission of the author.
Judy & Mike in Vietnam, 2007
I think it was Thoreau who said, "Most people live lives of quiet
desperation." I think of the twenty plus hours that the average American spends
watching television every week, and I think of the ten percent who are
alcoholic, not counting those who are distracting themselves from their quiet
desperation with addictions such as work, shopping, AOL chat rooms, sex, and
food; or daily pot smoking, and other mood altering substances. The sum of it
seems to be that people generally are not happy, and drown their sorrows in
I recently met some of Denver's activists within the disabled community who
pointed out several studies on the high rate of life satisfaction among people
with disabilities. I found most interesting a study which compared the level of
happiness of WWII vets: one group was "able-bodied," the other a group of
paralyzed vets. Guess who generally rated highest in satisfaction with life:
those with disabilities! Is this due to their unique perspective? Is it that
they have a better appreciation for life than the rest of us?
Life with HIV, life preparing to die, has heightened its intensity. In a 1993
article in Common Boundary called "Savage Grace", Mark Matusek writes:
"The funniest thing about it is that I've grown to love this way of life --
the intensity, clarity, poignancy -- the ability to see things at their value,
to measure life, at last, by its true and terminal standard."
The psychiatrist, Irvin Yalom, MD has made similar observations about cancer patients: "It is the awareness of death that promotes a shift in perspective and makes it possible for an individual to distinguish between core and accessory: to reinvest one and to divest of the other."As Santayana put it: "The dark background which death supplies brings out the tender colors of life in all their purity."
This is what my clients worry about losing. It is with reluctance that my
clients face going back to the numbing world from whence they came; the world of
addictions, television, and corporate downsizing.
THE UNCERTAINTY OF HIV
This brings us to the changes now going on with the AIDS epidemic. After
years of thinking that my clients had only three to five more years to live,
with undetectable viral loads, it looks as if there is a good possibility their
lives will now be measured in decades. After adjusting to the reality of dying,
they are now faced with the daunting prospect of living. In some respects this
has proven a more difficult task than being on the brink of their own demise.
Paul Linden, Psy.D., a psychologist in Chicago, quoted one of his clients saying
what seems typical: "I don't know if I have the emotional energy to make the
shift back into being a healthy person."
And for what? Only to be disappointed again? At the beginning of this
epidemic most people died of PCP. Then with bactrim, dapsone, and pentamidine
the pneumonia was curbed. Then people started dying of MAC, crypto, toxo, PML,
tuberculosis and CMV. Now there are reports of an increase in five types of
cancer among PWA's.
And yet, the death rate is down, the progression rate of the disease is down,
the cost of AIDS care is down, the need for inpatient care is down, and hospices
are actually closing. People are talking about going back to work.
There are all these grey area issues which complicate the picture:
* Will I remain healthy?
* Will I develop liver damage or unacceptable side effects?
* If I go back to work will it compromise my health?
* If I stop disability can I start it again?
* Will I be forced to go back to work?
Some of my clients have now spent several years on disability. They have left
the fast track of their careers, and now approaching their late forties, a
return to the work force looks quite daunting. How does a computer programmer or
an engineer make up for lost years as technology races ahead of them? Only one
of my clients on disability has thus far taken steps to re-enter the workforce
THE FEAR OF LIVING
When John first came to see me he was unemployed after his lover had died,
and was seriously considering living until his money ran out and then killing
himself. His reasons for not going on centered around a sense of loss of purpose
in his life, and fear. John was fearful of risking the possibility of a new
relationship -- and another devastating loss, or initial rejection. He was
fearful of even making new friends for the same reason. He was fearful of
working again, feeling he wasn't up to the challenge (his energy and health were
not factors). He even became somewhat fearful of leaving his condo because of
crime, and congestion.
How can we live our lives without our actions and decisions being fear
driven? We have to have a certain degree of faith -- in ourselves. Perhaps the
faith that out of adversity and failure things will work out. Perhaps its a
spiritual belief in life's lessons, or an ultimate plan beyond our
In motorcycle racing you are taught that when going into a corner at 100 mph
you will often have the feeling you are going too fast, and your bike will skid
out of control. Instructors reassure their students that you must have faith
that your tires will hold if you lean into the turn, putting your knee and
shoulder towards the pavement. The worst thing you can do is tense up and brake.
Then you will crash. If you can visualize the straight-away after the corner,
and your successfully making the turn -- chances are it will happen.
Those with HIV are again in the corner. Can you visualize the next
straight-away? Or are you clutching up, and about to crash?
Michael Shernoff, MSW my friend and colleague in Manhattan, knows from old
hepatitis studies that he has had HIV since the mid '70's. In that time he has
lost his brother, his lover, his business partner, most of his close friends,
and over a hundred of his clients. He sums up his life philosophy in his
article, "Life in the Maelstrom: One Man's Attempt to Survive,"* by quoting from
Morris West's Shoes of a Fisherman:
"It takes so much to be a full human being that there are very few who
have the enlightenment or the courage to pay the price. One has to abandon
altogether the search for security and reach out to the risk of living with both
arms. One has to accept pain as a condition of existence. One has to court doubt
and darkness as the cost of knowing. One needs a will stubborn in conflict, but
apt always to total acceptance of every consequence of living and dying."
This article is on Michael's web site
THE MEANING OF LIFE
The great theorist and psychotherapist, Carl Jung has said, "Meaning
makes a great many things endurable -- perhaps everything." He also said ,
"About a third of my cases are not suffering from any clinically definable
neurosis, but from the senselessness and aimlessness of their lives."Among
PWA's during this change in the epidemic I would say my caseload has an even
higher proportion suffering from a loss of purpose or meaning in their lives.
Those most vulnerable are those who have experienced multiple losses, especially
a partner. The second most vulnerable group are those who have experienced a
decline in their health which has compromised their energy level, and wiped out
their previous sense of purpose. They cannot do the things they used to, often
went on disability because of it and lost their identity as working
There is a self test (Crumbaugh, 1964) on your sense of purpose. Here is a
sample of the kind of questions it asks (rate yourself on a 1-7 scale):
TEN LIFE OBJECTIVES
Within this context one of my Tuesday group members suggested doing a list of
ten things we all really want to do with the rest of our lives -- whether two or
twenty years. This exercise became an infectious enthusiasm that spread to two
of my other groups, and to a number of their partners. These "ten things" are
not really tasks to be accomplished. They are often adventures yet to be had, or
a state of being to be experienced.
Here is a representative list of some of my clients' ten things:
1. Go to Marti Gras in Rio.
2. Take the Blue Train across South Africa.
3. Do Egypt and Arabia by motorbike.
4. Hike from Deli to Agra.
5. Motorcyle Peru.
1. Jump out of an airplane.
2. Swim with the dolphins.
3. Fly on the Concorde, and see the curv-ature of the earth.
4. Have lunch with Dolly Parton, Betty Buckley and Richard Karn.
1. Strengthen my bond with my partner.
2. Revitalize my existing friendships.
3. Remember how to fall in love.
4. Trust someone again.
1. Make some furniture.
2. Create a studio/gallery.
3. Write a children's book.
4. Write and produce a musical comedy.
5. Make stained glass & pottery.
6. Record a CD of approximately 12 songs, at least 50% original material,
which represents a "song memoir".
1. Learn French.
2. Master my computer.
3. Read all the books in my library.
4. Go back to school for the experience in either law or teaching.
5. Learn more about gardening.
6. Become an expert scuba diver, motor-cyclist and sailor.
7. Learn to play an instrument well.
1. Strive to be in my own truth.
2. Maintain a regular, fun exercise routine.
3. Find inner peace and share it.
4. Become more centered in who I am.
1. Write a useful book about coming out with AIDS.
2. Build an AIDS park.
3. Help out where I can - in other people's lives or in organizations that can utilize my expertise or time.
4. Start a gay & lesbian scholarship fund in the name of my late partner.
This has been a way for my clients to attempt to maintain some perspective and focus on those things which are truly important in their lives -- regardless of how long they live.
Last messed with February 21, 2007
Copyright(c) 2001 Michael E. Holtby, LCSW. All rights reserved.