Posted by: aidshike | February 13, 2013

Lessons from disappointment at 12,500 feet – day four

Dear Shelly,

My dream has always been to hike the entire Appalachian trail before I am 50 (at 47 I have 3 years left now) and the vision I have had for many years has become to hike the entire trail with a team of HIV+ people (hopefully the best eclectic mix of male/female, LGBT and straight, white, black, Latino etc.) To hike to raise awareness about the true story of the epidemic of HIV/AIDS and to raise money for HIV clinics and service providers …and maybe even for research. This is the simple explanation.

The idea is ambitious but it will start with local hikes and getting a buzz going. One of the main ways to raise money will be to get people to sponsor me for every mile I walk/hike in preparation. I have started logging these miles 4 days ago and there will be a daily count at the end of each blog.

But I can’t follow through with this plan alone. I will need the assistance of others, possibly interns and volunteers as the project proceeds. I plan on getting publicity in HIV magazines, local newspapers and magazines and more. Since I worked in the outdoor industry for many years, I have contacts with stores like REI and Hudson Trail Outfitters (HTO) and manufacturers like Jansport, Mountain Hardwear, Patagonia & Gregory Packs. With these contacts and knowledge of the industry I believe I could find gear sponsors.

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In 1989 when I was still with HTO I attended a seminar/expedition that took place in Seattle and on Mount Rainier. This yearly event is sponsored by the gear manufacturer JANSPORT. Mt Rainier is the largest glacial peak in the country (14,400 feet) and looms over Seattle even 2 hours away… when it isn’t raining and cloudy :~)  At that point of my life I not only sold the gear, but I used it all the time. I was an avid rock climber, mountain biker and hiker. The expedition was an amazing experience and was a great learning experience for me, in many ways.

In our training on the mountain, we spent 4 days at Camp Muir, the base camp at 10,000 feet, where we learned how  to ice climb with ice axes, how to traverse a rope stretched between two peaks connected only by a harness and a few carabiners, and how to “self-arrest.” Self –arrest is a mountaineering related maneuver in which a climber who has fallen and is sliding down a snow or ice slope arrests (stops) the slide by himself or herself without recourse to a rope or other belay system. This was a fun but scary thing to learn right on Rainier’s lower slopes using just your own ice axe.

We were also trained what it meant to be a part of a rope team. A rope team consists of 4 people connected by a rope (duh) that work as a team (duh) The idea of a rope team is that each person has an ice axe and if one of them were to fall – especially down a glacier – then there are three others that have a chance to save them by planting their ice axe into the ice… thus securing part of the rope and hopefully the other members. I was trained that on a rope team you are either an asset or a liability.

After 3 days at base camp, sleeping at 10,000 feet to get acclimated, we set out up the mountain very early in the morning to climb to the summit. After a number of hours we stopped at a spot with a very breathtaking view. It was “Disappointment Cleaver” at 12,500 feet high. After catching our breaths in silence for a while, our guides mentioned that from here on out the team would not make major stops, and asked if anyone wanted to turn and go back down the mountain. There were a few rotund guys who brought a few six packs to base camp and they chose to return, and there were two writers from Backpacker magazine that were not climbers and they chose to head down. But then very quietly I mentioned that I too would not proceed to the summit. Our main guide, Lou Whitaker of Rainier Mountaineering, who I had become very close to, was surprised and I think he felt let down… but I explained that I knew that I would summit even if only on adrenaline, but that he had also told as that the descent was the most dangerous, not only because we would be tired but also because our momentum and gravity would be propelling us forward and down. So I explained that I did not want to be a liability and potentially put some of my new friend’s lives in danger.

This was the hardest decision I had ever made in my life. In those few moments I had to let go of a dream I had been chasing for a few years. And then we sat… and we sat. We watched the other climbers as they continued to climb up the mountain until they looked like tiny ants. As I remember it, we didn’t talk very much. I just sat … for the first 30 minutes or so I was overcome with a myriad of emotions; but then I began to look around me.

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I was higher than almost anything in sight and higher than most people would ever get in their lives. If there ever was a “Kodak moment” and a snapshot view, it was all around me. It began to dawn on me something that I have pondered for all these years since then…My trip was about the tremendous journey of hiking on a massive mountain, of pushing my boundaries and of embracing the dance we humans do with nature. Although I wanted to reach that summit soooo badly, I realized that LIFE IS ABOUT THE JOURNEY, NOT THE DESTINATION. This is a simple cliché and just words in some ways, but a life’s lesson that I have never forgotten.

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So I dream of hiking the entire Appalachian Trail, 2,200 miles… and I dream of doing so with a team of other HIV+ people, but I really just want to hike, to hike as far as I can; to do the best I can with all that I have got. I want to do everything in my power to train as best as I can to give myself the best chance I will have to reach this dream. This is another lesson I learned after my trip to Washington state. I was so busy working tons of overtime hours at my job as a manager of the outdoor outfitter shop where I worked, that I did not train properly. I thought I was ready, but I did not give myself the best chance to reach the top of the mountain. I know I will not make that mistake again. I cannot control Mother Nature, I can’t be promised of how my body will hold up over 4 months on the trail; but I can do everything in my power to be ready

This week is the beginning of the journey. These are my first steps. So today I walked again…just over 2.5 miles. On the trail there will likely be days where I will hike over 20 miles over rugged terrain of ups and downs. That is the future. Today I walked on the concrete sidewalks of Baltimore city, but from now on, every step is one step closer to that rugged terrain.

I can’t wait!!

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Total miles: 2.6

Dear Shelly –

<I have decided to dedicate this blog to Shelly, a beautiful spirit who came into my life in an HIV+ support group in the late 80’s. As I was just starting to get to know her she sadly passed away. I will share more about her in a future blog.>

This blog post will be long (ok… many of mine will be!) so I will only give it a short introduction. I wrote the following piece, Lost to Be Found originally for publication in an HIV magazine. This tells my story from diagnosis in 1987 till 1999 and I have shared it hundreds of times since, feeling that it portrays some of the horrors of being HIV+.  It documents some really rough times, but shares some of the blessings of perspective I have gained along the way. I think that it will be self-evident why this story and my past challenges with Neuropathy have inspired me to walk/hike for a long way!

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 loss 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 a 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 tightly braided becoming separated with a chasm of 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 to my numerous weekly doctor’s appointments 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 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 HIV 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 died relatively soon thereafter. 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 my reluctantly taking the HIV 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 began creeping back to me and 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 other’s 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, coming with 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

February 12, 2013 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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Today I went to the gym and “walked” on the elliptical for 2.4 miles then went to my clinic (The Moore Clinic) at Johns Hopkins Hospital where I walked 0.5 across the vast campus from the parking garage to the clinic

Total: 2.90 miles

Posted by: aidshike | February 10, 2013

AIDS HIKE … THE CHALLENGE – day two

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Hello there, my name is Moshe Mark Adler and I am a Person Thriving with AIDS!  I was diagnosed HIV+ the day before Thanksgiving 1987…  Over 25 years ago. Some people call me a Long Term Survivor. I have been a Person Living with Aids since 1996. My journey has been long and challenging but full of fascinating people and memorable and rewarding experiences along the way. I have faced some horrifying prognosis, battled really difficult physical health problems and dealt with serious emotional ups and downs along the path. These have partly stemmed from watching so many others I got close to pass away; and partly because I have fought through Survivors Guilt – why me, why am I still here, why not the others. But today I have no regrets and wouldn’t have done anything differently.

My journey has taken me to dark places but also has helped me see the light in so many things. I can laugh and play with friends and family and I can explore my two favorite loves: music (and the arts) and nature. As an Eagle Scout I have always enjoyed hiking and camping and am starting to really enjoy pursuing both again. I have started this blog to share my personal experiences being HIV+ and to document and explain my vision for a future event: AIDS HIKE.

As I will share in my next post, I was once told I may never walk again. This was a challenge I faced head on … in facing tremendous fear I was then able to use it to inspire me, to motivate me, to prove the doctors wrong. The journey ahead will lead to my walking and hiking every day… and documenting that here … leading up to my vision:

AIDS HIKE will feature a diverse team of HIV+ people attacking a monstrous task… Hiking the Appalachian Trail. The mission is to attempt to hike the entire trail but the journey will be so much more than the destination. The event will be fundraiser to support service providers that focus on HIV+ people and it will be also be used as a catalyst to hopefully raise awareness of the reality of HIV in today’s world.

Before I send you on to tomorrow’s post – of an article I wrote in 1998 about my personal journey – I will leave you with some information about the trail:

The Appalachian National Scenic Trail, generally known as the A.T., is an approximately 2,200 mile marked hiking and camping trail in the eastern United States, extending between Springer Mountain in Georgia and Mount Katahdin in Maine. Along the way, the trail also passes through the states of North Carolina, Tennessee, Virginia, West Virginia, Maryland, Pennsylvania, New Jersey, New York, Connecticut, Massachusetts, Vermont, and New Hampshire.

The Appalachian National Scenic Trail is perhaps the most famous hiking trail in the world. It covers some of the most breathtaking terrain in America–majestic mountains, silent forests and sparking lakes. If you’re going to take a hike, it’s probably the place to go!

The path is maintained by 30 trail clubs and multiple partnerships, and managed by the National Park Service and the nonprofit Appalachian Trail Conservancy. The majority of the trail is in the wilderness, although some portions traverse towns, roads and cross rivers.

The A.T. is famous for its many hikers, some of whom, called thru-hikers, attempt to hike it in its entirety in a single season. Others hike it in sections and may complete the whole trail by chunks over a number of years. Many books, memoirs, web sites and fan organizations are dedicated to this pursuit.

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Today’s walk/hike took me on a sunset hike at the Robert E. Lee park in Baltimore (2.05 miles) and then a nice after dinner walk around my neighborhood – scenic Park Heights in Baltimore City ;~) (1.15 miles)

Total: 3.20 miles

Posted by: aidshike | February 9, 2013

Spark the Mission to reach the Vision – day one

What if I told you that you could and will accomplish a goal bigger than your dreams? What if I told you that by bringing like-minded kindred spirits blessed with the same challenges together you can make a difference in the world by what you represent, what you share and what you can accomplish? You will be unified … a team… as one! What if I told you that you can really make it happen, even shock the world?

Don’t embark on the journey – your mission to bring your vision into reality – with any thoughts about standing on that last mountaintop. It may be there waiting for you at the end of your journey and the destination may never have to be defined.

You are destined to make a difference. You can step up without worry or fear and begin this journey by doing the first thing, by taking the first step. Make the dream start to come into focus in real time, in real space.  Your shared journey is about walking. You must leave the talking behind, but never stop the discussion, the dialogue. Find others to share your vision. With these others there will be more energy, more spirit and more drive; and your team will come together… your dream will start to become a reality.

As you plan remember to walk, to train, to hike, to take risks and let yourself slowly become stronger. Push yourself that extra step. Just one more step. It is in striving for and meeting these challenges that the vision will be met with action.

Dream big… but act small … one little detail at a time… because it is in the planning and the hard work, that the details can come together… to spark the dream into action, let the path come into focus.

You can walk, you can hike, you can go beyond even where you envisioned yourself going…right now. You can help others go there too.

Do NOT think small or create a wall of resistance and limitations. Do not let yourself start to believe that the mission to follow the vision is too much. Do not let what others say bring you down or make you question your path.

The journey starts with faith, with hope, with belief and with a strong will to make that difference in the world. TAKE THE FIRST STEP!

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Today’s walk: 1.95 miles

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