Posted by: aidshike | March 24, 2017

My first published article – about hanging on for life

Hello dearest Shelly,

Here’s some of the first writing I did about health challenges from being HIV+

LOST TO BE FOUND

People often confront the disabling effect of painful losses in their lives:

Loves lost, friends lost, parents lost to cancer or heart failure , children lost to violence or drug addiction, minds lost to mental illness or dementia, fortunes lost , houses lost in hurricanes, cars lost buried in mudslides, pets lost to old age, or simply jewelry or wallets lost to pick pockets or thieves.

Recently I have suffered a lost equally as painful… part of an immediate and heartfelt personal journey. I have been through a morbid and eye opening experience, unlike anything I have been through before:

I lost my death

It took me a long time to let go once I realized it was really gone. I found myself very close to my death in more ways than one. Along my path of physical pain, immense emotional suffering, and months made up of long hours of confronting my immortality, I had found myself able to embrace my impending death.

Years after being diagnosed HIV+ I emerged from denial and started the gruesome path to looking death in the eye. I began thinking and planning without vision of a future. I stopped dreaming of career plans and building a family and instead read more of the horror stories about people dying from AIDS and the harrowing statistics. In the mid to late eighties, these articles were more readily available than any optimistic predictions. I even contacted a lawyer and wrote my will.

25 years later, I have become a positive person now, living and thriving with AIDS. Being open and honest about my reality, having the fantastic support of family, friends and support groups; and having the plethora of available resources – complete information, medications, and free clinics with great doctors, nurses, case workers and other health care providers. With all this support and my own deep faith and positive attitude, I have fought off the emotional demons of impending death and stayed around long enough to overcome the physical health obstacles…

And what pain and discomfort this included: stomach problems bad enough to hospitalize me eight times (Cdef or c deficile,) Thrush and throat problems, Bronchitis (over a dozen times,) Pneumonia (non PCP pneumonia, but misdiagnosed and certainly a horror each time,) a six week hospital stay for Shingles over half of my face (with very real fear of losing my vision in one eye) and a second scare too, and then in 1997 the drama began with the onset of Neuropathy.

Neuropathy is diseased condition of the nervous system. Peripheral neuropathy often challenges people that are diabetic, it is chronic, affects first the nerves of the lower limbs and often affects autonomic nerves, leading to a loss of sensations in the nerves to the toes, feet, legs, hands and even the jaw. Imagine old school twine rope that is normally braided tightly becoming separated with space in between. This was my veins and the synapses between them were slowed and weakened. The longest veins from the brain are those to the feet and hands and so that is where the pain is first felt. If not held in check, Neuropathy can take digits, limbs and in the worst case it can end a life. Over a short period of severe pain, I then lost all the sensations described above en route to being totally bedridden. I was told I might never walk again, was reluctantly taking Percocet, and had to completely rely on others just to get to the bathroom and I was hearing death knocking on my door.

During this excruciatingly painful time I dealt with invasive shooting “pins and needles” stabbing through my feet 24 hours a day, experienced drastic temperature changes constantly, and slowly lost my ability to walk, to write or type and finally to talk or eat in the morning hours every day.

As I shrank in size and spirit, I saw the cruelty of my situation in the eyes of my family and the endless doctors that I struggled to see. At the clinics and doctors’ offices I witnessed the decline of other friends and patient’s health and abilities staring me right in the face. I became deeply spiritual and dove inside for strength; developing the ability to find inner peace and even try to put on a brave face to ease the parallel worry and fears of my caregivers. I was extremely blessed to have a parade of friends and family visit me in the hospital & at home and have their endless physical and emotional support. Many of my other friends from the support groups I frequently attended (with assistance of others) were dismissed by friends and especially family to battle the reality of AIDS almost completely by themselves.

Death became a regular dancing partner, never touching, but always moving in shadow closely; while warning of even deeper pain. As I watched and felt my health dissipate, I prepared for what began to seem inevitable. I moved through my past experiences in a dreamlike state, thought about a future that was vanishing from the picture … and prayed.

I prayed for health, or just for moments of serenity; I prayed for forgiveness for past transgressions, I prayed for the others “walking” the same path, and I prayed for peace. I made it known to my higher power that given a chance to continue living, I would strive to be the best person I could be; I would be more committed to a cause; I would make amends for my apparent misgivings and I would live life to the fullest. Given new improved health and the full functioning of my body again, I promised I would hike, bike, rock climb, dance and play my drums with passion and joy.

 As time passed, I stopped fearing death as the pain subsided and numbness prevailed. I embraced the loss of my life as a potential solution for dealing with my physical health challenges and disability. Months before, depending on a four legged walker, I went to an event at the MCI Arena. It was there sitting on a bench, watching the crowds go by, that I first saw myself as being handicapped. Only then did I begin to recognize that this was a condition and description I was not mentally prepared for.

 To help myself survive I tried to always put a positive spin on things. I became much more aware and thankful for all the things that I had been lucky enough to experience, for the quality of life I had been given and for the love and support I had become accustomed to. I often compared my situation to that of an injured soldier in a war or a refugee without food and shelter and gave continual thanks for the roof over my head, the food on my table, medical assistance I was blessed with and the education and entertainment I had enjoyed for 34 years.

 Humbled and deeply more spiritual, I then was amazed as I began to feel my resilient body begin to heal. The first thing I had done to reverse my situation was to finally give in and start a “cocktail” of medications (after 10 years of not taking any medications!) Ironically, the Neuropathy was caused by two of these drugs that were supposed to have been saving my life. When I finally did choose to take these medications it was because my T cell count had dropped below 200 (down to 56)

and my Viral Load was as high as the equipment could detect at that point. Simply stated, T cells are the white blood cells that regulate the immune system’s response to disease and Viral Load is the amount of AIDS in your blood. T cell tests were the main test of how HIV+ people were doing when I was first diagnosed. Sadly, a very large portion of people whose T cells dropped below 200 stayed alive. This was a very scary time. In the 1990s, viral load tests were a new technology being developed as a research tool.

 In addition to (and way before the meds) I must give credit to “alternative” treatments and remedies that I researched and made part of my routine. This started with nutritional awareness as I began to eat much better, adding the use of holistic and natural supplements while taking vitamins religiously. I explored meditation, tai chi, yoga and relaxation methods. I also explored and benefited from energy work and hands-on healing like massage, chiropractic adjustments, Acupuncture, Shiatsu, Reiki, Reflexology and Jin shin Jytsu as I found the paths that worked the best for me. This foundation of personal care granted me a chance to help balance and rebuild my health.

 Slowly my life came creeping back to me, my future re-appeared. Happy and exultant beyond words, I then slowly began to look back and come to terms with being granted a fresh new life and potential.

 Death came knocking at my door, but thankfully I was able to survive to share this with you today. For now, I have lost my death, but hopefully I can continue to learn from this opportunity and then move on. My re-awakening has left me with some lasting insights:

 I respect others’ personal journeys more.

I have seemingly endless patience for things that used to test and frustrate me.

I cherish the days I do have now, the sunsets and the seasons turning.

I can find the joy in any moment.

I am more nurturing and loving of myself.

 

Having slayed really big dragons…

I have immense confidence that I can accomplish anything I set my mind to.

I no longer fear death and this helps me feel others pain more readily

I finally feel that I can embrace myself completely as I am today…

​A work in progress with awesome potential for peace, happiness and prosperity.

 

What once was a profound feeling of loss now seems like a victory, newfound blessings and immense personal growth. I am thankful for having been challenged and given the opportunity to be more aware of all the everyday miracles that abound. I can only pray and wish that others who feel lost will find the strength that I was able to embrace and that I will continue to be able to share my thankfulness and tranquility.

 

Moshe Mark Adler

2 May 1999

23 August 2012 edit

 

This piece originally appeared in HIV! Alive magazine’s June/July 1999 issue. Moshe can be reached at justmemoshe@gmail.com, 301-717-7966


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