"This is the Day"
by Peter Braswell
[Persons living with AIDS] "loved ones, and care providers want and need the consolation, comfort, and peace that the gospel and
the people whose lives are shaped by it can bring." (From AIDS: Personal Stories in Pastoral Perspective , by Shelp, Sunderland and Mansell, The Pilgrim Press, New York, 1986.)
Pre 1987
AIDS. Rock Hudson and Liberace had died from it. Several casual
acquaintances had it or had died from it, but no one I knew very
well. It was something that happened to people somewhere else.
"Maybe I'll call Project Lazarus, the AIDS residence", I thought.
"I should maybe go down there and help them with bathing, shaving,
feeding, or whatever needs to be done." Then, one day I called
.... "No answer after three rings .... Oh well, no more time ....
I've done my part .... I'm such a good person!"
February 1987
More AIDS!! The news is full of it. Oh well, it's somewhere else;
New York, Los Angeles, San Francisco. There is very little of
it here in New Orleans . . . .
February 10, 1987
Business as usual. My office is a beehive of activity. An employee
answers the telephone, and places the caller on hold. Turning
to me he says I have a personal call. "Peter, I just received
a call that Timothy was taken to the emergency room last night.
He's having difficulty breathing." My heart skipped a beat. Deep-down
inside I knew what it must be . . . . NO! I'm being silly and
an alarmist!! I hung-up after a brief conversation. I felt numb.
That night I visited Tim in the hospital . . . . . .
February 11, 1987
The doctors still haven't said anything. Why is this taking such
a long time? . . . . . His breathing is better now and his color
has improved . . . . . Just as I thought, it's something minor
and he'll be out soon . . . .
February 12, 1987
Still no word from the doctors . . . . . This is ridiculous!!
They are looking for something that isn't there. He's already
better . . . . . I'm confident . . . . .
Friday, February 13
It's been such a good productive day here at the office. I feel
great! Now I'll run to the hospital for a visit with Tim . . .
.
"Hi! How's it going, guy?"
"Well, I've got good news, and I've got bad news."
"At least you've got some good news"
"The good news is that I'll get out of here in about two weeks,
and the bad news is that I have AIDS."
Suddenly, there's a weak feeling in the pit of my stomach. I don't
remember much after that, only some hugs, a few tears, and that
weak feeling that wouldn't go away. I only know that my life direction
has changed, and I'm not in control anymore. The confidence I
had the day before is gone . . . .
That was my introduction to AIDS. AIDS had a face, and a face
that was REAL.
The next day was Valentine's Day, and I arrived at the hospital
with a huge heart-shaped box of chocolates and a funny card. As
an afterthought, I brought a Bible, just in case he might want
to read.
The Days and Months Thereafter
Several days went by and I realized I needed some help to get
my head together, as I could feel myself starting to give in to
that weak feeling and to give- up. I was beginning to unravel.
A business acquaintance of mine had done some volunteer work in
the AIDS arena and he seemed like the logical person to call as
a first step. He put me in touch with NO/AIDS Task Force. I was
immediately connected to a lady with a soft, gentle voice. A sense
of relief came over me when I finally said the word "AIDS" out-loud
for the first time. I felt comforted when I realized she felt
my pain and distress. She told me about an AIDS Awareness Seminar
being held the following weekend and invited me to attend. I jumped
at the chance to learn about something about which I knew very
little.
The night before the seminar, I visited with Tim and told him
I would be gone the next day and where I was going. I promised
to report back the minute I arrived home.
Another reflection. I remember that cold, rainy Saturday morning
in February preparing to go to the seminar. On the lavatory in
my bathroom there is a small brass plaque I hadn't really seen
for a long time. It simply says, "This is the day the Lord hath
made. Let us rejoice and be glad in it."
After an intense day of being bombarded with all sorts of information
about AIDS from doctors, lawyers, social workers, and clergy,
I started the drive back home. It was still cold and rainy, and
I cried almost the entire way. However, I couldn't wait to call
Tim and let him know about all of the things I had learned. I
was cheerful and almost glib on the telephone, but when I hung-up,
overwhelming grief erupted and tears came from my heart as well
as from my eyes.
After church the next day, I visited with Tim in the hospital.
Suddenly, he started talking about the Bible I had given him a
few days earlier, and began asking me questions about my local
church and my denomination. Casually, I invited him to go to church
with me when he was feeling better and he accepted. We attended
church together every Sunday for the next four or five weeks and,
then, one Sunday, during the singing of the invitational hymn,
he turned, put his hymnal down, excused himself, and walked down
the aisle to the altar and joined the church. Mixed tears of pain
and joy filled my eyes and I was unable to continue singing. After
church, I took him out for a celebration lunch.
Several weeks passed and it began to occur to me that Tim and
I were going to need the kind of support only a pastor can give.
I thought, "Who is going to tell him?" The answer came quickly
from Timothy. I was elected!!!
My faith in the church and my ministers had never been put through
a test before, and certainly not with anything as frightening
and controversial as AIDS. How were they going to respond? I wanted
my pastor to respond with love and compassion, and I even had
an angry response ready in case he did not respond as I wanted.
I was going to take my membership elsewhere, and cancel my pledge.
My fears and anger were quickly dispelled by his warmth and compassion,
along with his promise to do everything in his power to help Tim.
Later, I found out that he was not only there for Tim, but he
was there for me as well.
That was the first time in my life I started to understand the
true meaning of Christian Love. Not only was my faith nurtured,
Timothy got the support of his church and his pastors; something
I had prayed so hard for. Knowing that he was being supported
and comforted was comforting to me as well.
During this time, I continued my AIDS training in an almost frantic
manner, hoping to learn at least one thing that would prolong,
if not save, Timothy's life or add substantially to the quality
of it.
The next volunteer training event exposed me to the different
areas of involvement. The area I chose was the Buddy Program because
of it's intensive, personal, hands-on approach. I knew I had to
be the best that I could be for Tim.
November 11, 1987
Tim and I happily boarded a flight for San Francisco to attend
the United Methodist National Consultation on AIDS Ministries.
We were excited and delighted with the information we received,
and to learn there were others facing the same struggle and having
the same fears we had. We were encouraged, also, to learn that
work was going on nationally within the United Methodist Church
to address the AIDS epidemic.
During the evenings we had wonderful dinners together in the marvelous
"eateries" in San Francisco. Some of them turned into very personal
discussions of the information and ideas we had learned during
the day. And sometimes, the discussions became very intimate and
emotional. Sometimes we said nothing at all, just sitting together
quietly with insurmountable agony which cannot be verbalized.
At the closing worship service of the consultation, during the
singing of the last hymn, the "Song of Hope", I saw Tim start
to shake and tremble with grief. All of my emotional safeguards
came crashing down, and I reached-out, put my arm around his waist,
and pulled him close to my side. Together, we found strength and
comfort to continue singing. That afternoon, we drove out to Golden
Gate Park and stood in silence while we watched the sunset on
the Pacific.
The next six months were good ones for both of us. I met his parents
and all of his brothers and sisters, attended a family wedding,
and re-decorated his home. He said he didn't want to spend his
last days in an ugly house! Little did we know he would lose sight
in his right eye due to CMV retinitis, which deprived him of much
of the pleasure of our endeavors.
Our relationship continued to deepen, and finally one day he said
to me, "You know Peter, we've been friends for years. It's such
a shame I didn't know you all that time as well as I know you
now". I could only think to myself that we at least had ONE thing
to thank AIDS for.
After several long hospitalizations, illness of every description
seemed to fall out of the trees on him. He was discharged from
the hospital on a Sunday, and his mother and father drove in to
be with him.
November 11, 1988
Then, exactly one year to the day that we had so happily boarded
the plane for San Francisco, I received another phone call at
work. This time from Tim's house-mate. The words still ring in
my head.
"Peter . . . . something's wrong with Tim . . . . he's having
some kind of seizure . . . . . now he's passed- out . . . . .
the home-health nurse is on her way . . . . . I'm scared . . .
. . I don't know what to do." I told him I was on my way and with
a quick word to my employees, ran out the door. One of them thought
to call the church office to tell the staff. Arriving at the house,
the first thing I saw was Tim on the floor in the kitchen, his
mother bending over him. He was drifting in and out of consciousness.
The ambulance arrived and we rushed to the hospital. After what
seemed like hours, a nurse came into the lounge and said, "I think
you'd better come now, I don't think he's going to be with us
much longer." A few minutes later, Tim's soft and shallow breathing
stopped. The battle was over and I had lost. As I looked at him
laying there still and quiet, I was stuck not by the sight of
death, but by the sight of complete and total peace. An absence
of pain and agony. Divine Peace!! I, also, felt robbed of that
experience of peace.
Minutes later, the church secretary, who is a dear friend, and
both pastors arrived. They had all been on their way from different
parts of the city. After a few hugs and words of reassurance from
them in the corridor, Tim's parents, his house-mate, and I entered
the room, surrounded Tim's bedside, and shared in a much needed
moment of prayer while holding hands. I shall never forget or
doubt the mercy of God. God had been with me all the way from
February 1987, and I didn't know it!
I have continued my work in the AIDS arena since Tim's death,
but not with the sense of frenzy and urgency.
Several months ago, after a sabbatical from the Buddy Program,
I received another assignment. The one thing I had hoped to escape
is still with me: an overwhelming sense of helplessness. This
feeling is not easy to overcome in the face of pain, suffering
and eventual death especially when I see the staggering amount
of anger and hatred, judgment, hysteria, and the vulgar sight
of apathy. I only hope that one day soon, before too many others
die, the general public, federal government, and the church will
realize the tragic proportions of this epidemic, and do something
about it, rather than standing by idly.
Through my experiences with my minister and my church, I have
come to realize that others affected by the AIDS crisis should
open-up and talk to their clergy to make them aware of their personal
sorrow and crisis, and make them aware that although they may
THINK their congregation is untouched by this crisis, some members
probably are trying to reach them for help and direction.
If clergy are not informed and educated, they cannot be blamed
for not ministering to a person with AIDS or their loved ones.
In turn, we all have a responsibility to support our pastors and
that support has to come from the bottom up, as well as from the
top down. I have made a promise to myself and to Tim that I will
continue to pray, advocate, and badger to meet these objectives.
It is my prayer that from the writing of my personal journey with
the AIDS epidemic, some will gain the confidence to open dialogue
with their pastors.
One further flashback . . . . . I remember arriving home late
in the evening the day Timothy died, and for the first time in
a long while, I saw again that little wood and brass plaque on
my lavatory that says, "This is the day the Lord hath made; let
us rejoice and be glad in it."
Afterword
By Cathie Lyons
The title of Peter Braswell's paper, "This Is The Day," is a good reminder that each day is the day the Lord has made. Peter reminds
us, also, that in each of these days there are people with AIDS
and their loved ones who are reaching out and waiting for the
church and the community of faith to respond.
As persons of faith, we are called to rededicate our lives every
day to caring well for others and ourselves in the midst of the
AIDS crisis.
The strong, diverse, creative, and inspired response to the AIDS
epidemic which we have already seen is the result of various gifted
individuals who have acted. What does the future hold for you;
or rather, what do you hold for the future?
We each have an individual role in assuring that people with HIV?AIDS are not neglected, abandoned, or judged. In relating to
people with HIV/AIDS and their loved ones and friends, take
time to listen. Listen as others share their lessons learned;
the turning points; the significant people that have influenced
their lives; the transitions, transformations, and wounds still
to be healed. Recognize the gifts and the strengths possessed
by people with HIV/AIDS, their loved ones and friends, as well
as your own gifts, as we help each other to heal.
Our prayers, worship, and spirituality serve to bring us into
greater awareness of ourselves and all that is around us. We are
encouraged simply to be ourselves, as we acknowledge pain, suffering,
and loss, yet affirm life. Denial, anger, bargaining, and depression
are no longer words on a page, but are real-life battles we now
are facing, whether as a person with HIV/AIDS, their loved
one, or a care-giver, as we move toward resolution and acceptance.
In the midst of all this, it is essential that you care for yourselfyour
own physical, emotional, and spiritual well-beingfor you are truly
priceless in your service. Take the time to heal your wounds,
to nourish yourself, to relax at sunset, and to share both your
laughter and your tears with your friends. Seek out the emotional
and spiritual support which you need as you help to provide it
for others. We are all in this together . . . . You must take
the time you need to laugh, or to cry, in the confidence that
there are others involved who are as compassionate and committed
as you, and in the confidence that God is there with you.2
Notes
1The numbered items 1-10 are adapted from AIDS: A SELF-CARE
MANUAL, edited by Betty Clare Moffatt, Judith Spiegal, Steve Parrish
and Michael Helquiest (AIDS Project Los Angeles, 1987), pp. 227-228.
2 Ibid., pp. 222-223.
"Caring for Those Who Care for Us"
by Terry Boyd
In the following PLWA Column, Terry Boyd addresses poignantly
the importance of balance and proportion: of being able to enter
into the reality of the other; of realizing that we are all in
this together, and that the care provider and the care receiver
are equally in need of care, compassion, and understanding.
Concentrate on Terry's deeply moving message in CARING FOR THOSE WHO CARE FOR US, on his awareness of how illness can make a world
of its own, and on that transcendent moment when Terry places
himself in the situation of the care provider and recognizes that
it is a special grace from God which enables us to care for and
suffer with one another.
I have a very special friend: a 'buddy.' He has done my laundry,
sat with me all day in the emergency room after working a midnight
shift. He has cleaned, cooked, and cried with me. There are many
times I have thought I could not have survived without his loving
care.
During one particularly difficult period when I was extremely
weak, dehydrated and losing weight at an alarming rate, he would
attempt to get me to eat something, anything. I was wasting away:
a reality experienced by many persons living with AIDS.
I began to view his constant pleas for me to eat as nagging. Feeling
like I was being treated like a child, I would remind him that
I was an adult, able to make decisions for myself, and that he
simply did not understand the nausea I was feeling. We went through
this routine countless times. Finally, I said I would not tolerate
it any more and I asked him to keep his opinions to himself. My
anger and frustration were met with the same response from him.
Then, it finally began to sink in. I had never considered the
anger, frustration, and real pain that someone in his position
of care provider must experience. Not only was he caring for me
during a very rough period, he had lost other friends to AIDS
and had seen his sister die from cancer.
I was shocked to realize how self-centered I had become. It is
easy for someone with AIDS to be lulled into thinking that he
or she is the center of things. In my case, I have a very well
organized support system: people from church, family and friends.
At some point, I started to believe that the world revolved around
me and my disease. It is a dangerous trap. My anger at my friend's
attentiveness had only increased his pain, his frustration, his
anger. I realized I was doing real spiritual harm to another soul.
Through all this, I began to ask myself:
"Could I sit and watch someone I cared for literally die by inches?
Could I cope with the reality that there was little or nothing
I could do? How would I feel if I knew I was trapped in this situation
and I could not walk away: that I must stay and endure the torture?"
I don't think I would have the courage; yet, he does. What special
grace from God must he have received to suffer so for my sake?
Of all the sins of my life, I believe this to be the worst. It
will take some time before I resolve my guilt. I rejoice that
someone (probably with the Lord's considerable help) was finally
able to show me that there is more to this world than myself and
my illness.
I also realize that this person who cares for me is not alone.
The roster of those involved in direct care is increasing every
day. We stand to lose the best of these heroes if we do not care
for them as much as they have cared for us.
Health and Welfare Ministries is grateful to Terry for his willingness to write from the perspective of his personal journey of living with AIDS. Terry is a member of Lafayette Park United Methodist Church in St. Louis.
Resource Update
21 July 1989
The resources which have been selected for this month's RESOURCE
UPDATE will be of particular interest to pastors; care providers;
persons who are HIV positive, have AIDS or other HIV related illnesses;
families whose lives have been touched by AIDS, loved ones and
others who might find themselves in the situation of helping individuals
and families come to grips with dying, death and grief.
Books and Manuals
Carlsons'
The Walking Wounded , by Beverly Foote Barbo is a mother's true story of her son's
homosexuality and his eventual AIDS related death. A triumphant
book full of emotions, struggle and unending love portraying the
last six months of Tim's life when "we found out what love really
is in every sense of the word. We shared anger and frustration
with the bureaucracy and red tape, anxiety when we knew the struggle
was in vain, a sense of loss because of our 'humanness' and finally
peace and acceptance because we know there has to be a 'better
place'. This book is a call to understand and to love without
condition. Barbo's book ends with this remembrance and sense of
release: "I remember when, with sure and steady steps, he walked
into the baptismal waters signifying his death and resurrection
with Jesus Christ . . . and I wept. Tim has been released. As
people call for mandatory testing and speak of quarantine, I am
glad he didn't live to see that . . . to be dehumanized, labeled
and wounded again. He is free indeed. Free of the fear of being
found out, free of the cruelty and rejection of others, free of
the fear of not being acceptable to God. Dear Tim, the path in
this journey of life gave us mountains to climb over, forests
to find our way through, crevices to fall into and many obstacles
to trip over. Stones were thrown that wounded us, we made it through,
family intact plus Tom. You just happened to make it to the final
destination before the rest of us. We could have done no more.
We loved and received love. I truly believe that what we have
had faith in for so long is true. I know that where you are it
is wonderful and that you have indeed found your better place
. . . Home at last. Amen - So be it. Love, Mom."
For information on ordering: contact Carlsons', 114 S. Main, Lindsborg,
KS 67456; or Beverly Barbo, 217 South Chestnut, P.O. Box 364,
Lindsborg, KS 67456 (913) 227-3276.
Harbinger House
Take These Broken Wings and Learn to Fly: The AIDS Support Book
for Patients, Family and Friends , by Steven D. Dietz and M. Jane Parker Hicks, M.D. is what the
sub-title implies. Persons with AIDS have found this to be a valuable
resource which offers honest and positive approaches to living
with AIDS, relating to family members and friends, and to developing
reasons to hope and move forward with one's life. Chapters include:
Facing and Sharing Test Results and Diagnosis; The Multiple Issues
of AIDS; Balancing Needs Sharing
Feelings; Family Adjustments; Accepting Guidance when You Need
Help; Changes that Start Today; Opening a Window to the World;
Choosing Life . Scientific and medical information are presented for the lay
public, state agencies and hotline numbers are included along
with medical references and additional suggested reading materials.
Ordering Instructions: Available from Harbinger House, 3131 N.
Country Club, Suite 106, Tucson, AZ 85716, for $9.95 per copy,
postage and handling additional.
IBS Press
AIDS: A Self-Care Manual , edited by Betty Clare Moffatt, Judith Spiegal, Steve Parrish
and Michael Helquist. This 1987 book produced by the AIDS Project
Los Angeles remains one of the most current and informative books
available on the subject of AIDS. This east-to-read 305 page manual
provides medical and scientific facts about which everyone should
be informed; the psycho- social realities of AIDS are discussed
with pointers on how to meet psychological needs; self-care is
addressed along with symptom management; and good materials are
included which address the religious and spiritual dimensions
of AIDS, as well as the meaning and importance of healing. Additional
resources, the names and addresses of AIDS-related organizations
and hotlines are provided.
Ordering Instructions: Copies are available at $12.95 each plus
$2.00 per book for shipping and handling. (CA residents add 6
1/2 % sales tax.) Enclose check or money order in US dollars made
payable to IBS Press and mail to: IBS Press, 744 Pier Avenue,
Santa Monica, CA 90405. To find out about quantity discounts,
call IBS Press at (213) 450-6485. Write to IBS Press at foregoing
address to have your name added to mailing list in order to be
informed about upcoming books, tapes and workshops relating to
the prevention and treatment of AIDS.
When Someone You Love Has AIDS: A Book of Hope for Family and
Friends , by Betty Clare Moffatt. Editor, author and co-founder of Mothers
of AIDS Patients, Moffatt lectures worldwide on family issues
and AIDS, and in this book provides a "moving testament to one
family's courage and togetherness in the midst of catastrophe".
Moffatt's son, Michael died on July 14, 1986 at age twenty-eight,
two and a half years after being diagnosed with AIDS which manifested
itself through fungal meningitis and Kaposi's Sarcoma. The book
is in the author's own words "a book of hope . . . a book of love.
And so I close my eyes and recreate the last weeks of Michael's
life, not in despair, but in a spirit of hope; go back to that
time when everything within me cried out for help in meeting the
greatest crisis any mother can face, the death of her child."
An IBS Press promotional piece describes the book well. "The author
recounts her struggle with the emotions of shock, anger, disbelief,
guilt, fear, sadness and her final surrender to unconditional
love as her family transforms tragedy into triumph. Woven into
the story is practical medical and psychological advice for everyone
touched by the AIDS crisis."
Ordering Instructions: Available from IBS Press, 744 Pier Avenue,
Santa Monica, CA 90405 for $8.95 each plus $2.00 each for shipping
and handling. (California residents add 6.5% sales tax.) Make
checks and money orders payable to IBS Press. Information on quantity
discounts: (213) 450-6485.
Gifts for the Living: Conversations with Caregivers on Death and
Dying , by Betty Clare Moffatt provides a "series of interviews with
nurses, hospice workers, therapists, clergy and family members
on all aspects of working with the terminally ill . . . . Practical,
psychological and spiritual help from fourteen leading experts.
With its inclusion of the Living Will, the Durable Power of Attorney
for Health Care, and a resource guide, this is an authoritative,
compassionate reference for everyone who has touched the life
of someone who is dying." The chapters of Moffatt's book are about
the gifts for the living through which healing can be experienced.
They are the gifts of: adventure, generations, honesty, healing,
understanding, guidance, caring, unconditional love and transformation.
