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Living with HIV, depression, Inclusion Body Myositis - and my lily

Tuesday, 02 August 2016 Written by // Félix Garmendía Categories // Social Media, Gay Men, International , Lifestyle, Living with HIV, Opinion Pieces, Félix Garmendía

It's sometimes possible for another living thing to support us just by being there, as our NYC guy, Félix Garmendía relates.

Living with HIV, depression, Inclusion Body Myositis  - and my lily

In the summer of 2006, I received a plant as a gift. It is a “Peace Lily”. The beautiful plant was a gift from the wonderful people from our local pharmacy when they found out that I had a bad fall that took me unconscious to the ER. In those days I was starting to show serious signs of muscle weakness and that fall put me in a wheelchair full time.

The doctor sat me down and told me the truth. He told me that if I kept on falling my already brittle bones could get fractured very easily. As a result of my Inclusion Body Myositis (an auto immune disease that causes an inflammation and deterioration of the muscular system) my bones were already showing signs of osteoporosis. When your muscle mass diminishes so does your bone density. The risk of a serious bone fracture; like that of a hip or pelvis, prompted me to sadly accept the fact that I needed a wheelchair.

The plant arrived one afternoon. It was presented to my husband Denis by the owner of the pharmacy and Denis brought it home. The plant had strong, beautiful, emerald green leaves in contrast with its simple but beautiful white flowers. It was full of life. It looked very aware of its beauty and it looked beautiful on the window-sill in the bedroom.

The plant and I started a journey together. My new plant was yet another stranger in my life that appeared to bring beauty, hope and tranquility in a moment of sadness, a living, breathing creature inspiring in its own beauty.

I started to depend on the beauty of this lily to brighten my day. The serious fall and the wheelchair decision plunged me into a severe depression that lasted for four years. For four long years I often found myself lying in bed struggling with depression.

I remember very well the despair, the betrayal of my friends who abandoned me when it became clear and obvious that I was no longer the able bodied “party animal” I once was. The hopelessness was deep. It certainly felt like my soul was impaled with, and marked forever with a jagged branding iron. I was defeated, often lost, in a state of despair that often induced me sleep more than 16 hours a day. I guess I was trying to escape reality. In my dreams I could still walk.

The lily watched me deteriorate. It was there day and night, like a silent witness, but also an ever present reminder of life. It had no flowers anymore. As the winter approached, and the days grew shorter, nature itself intervened and curtailed the flowering portion of my dear lily’s life.

"My lily and I were still around but obviously struggling and withered and no longer beautiful. We were both aching like two wounded creatures in a dark cave."

Even without flowers, it was still beautiful. I remember rolling over in bed and looking at it for a long time every morning. One day, as the sun was setting, I noticed a few yellow leaves. At that moment I was hosting a pity party for myself so I decided not to worry about the yellowing leaves.

During that time it was not hard for me to fall into a hole of sadness and depression. I often found myself feeling like a germ, an unwanted, ugly, disheveled organism stuck in the petri dish of my apartment.

I also sometimes felt as if I no longer wanted to live. I can remember being tragically almost amused at the fact, that even if I had the balls to actually end my own life, I wasn’t even physically CAPABLE of doing it.

Throughout all of this, “my lily” was still there, a silent yet ever resilient witness. The lily continued to shed its increasingly withered yellow leaves but I still found comfort in the fact that it was still there with me, every day, every night. I continued to appreciate its beauty. I was no longer physically able to water it myself as I could no longer get in and out of bed without help. It was also located on my husband’s side of the bed, an area where I was unable to navigate my wheelchair so I was also unable to visit up close and personal.

My husband Denis and the lily watched me deteriorate, age, lose my sparkle and fall into a black hole of self-pity. I remember one day Denis asking me with watery eyes, “What’s wrong?” I just looked at him, rolled in bed to the other side, and noticed the lily was dying.

My lily and I were still around but obviously struggling and withered and no longer beautiful. We were both aching like two wounded creatures in a dark cave.The winter was brutal and life felt like an anvil crushing my chest.

When I noticed the plant was dying I asked Denis to transplant it to a bigger pot. Maybe it needed more room to grow. I don’t know, I was just trying to help the lily survive.The new pot idea didn’t help at all and actually seemed to contribute to the struggle to survive.My lily lost half its leaves and appeared to be half its original size. The many, once beautiful flowers were a distant memory. I remember concluding that my companion lily was not going to make it.

Not long after this, I decided to see a psychiatrist. She diagnosed me with, what she called “Rotting Depression”. We discussed treatment options including various drugs and getting outdoors more often for “sunlight therapy”. She commented that if the drugs didn’t help, she would suggest electro shock therapy.

For months I steadfastly adhered to my new drug regimen, but noticed no change whatsoever. In fact, if anything, my will to live seemed to be slowly sinking.Then one morning, after several months of meds, I was awakened by a brilliant shaft of light that had made its way through my window. I opened my eyes to the warmth of the sun landing on my face.

That morning, I felt different, even strange. The feeling was unfamiliar to me but somehow pleasant. I felt somehow “lighter”. I felt as if a heavy weight had been lifted from me. I rolled over in bed and instantly noticed, that among the yellow leaves of my struggling companion lily, a small green rolled up new leaf was sprouting from the deep interior of my plant. Like a phoenix rising from the ashes, my lily was emerging with vibrant spark. It was alive!

A few more months passed and my outlook, mood and demeanor improved significantly.My life was changing, the winter of my life was over. It was time to face the spring! The best part was, for the first time in ages I was totally eager to greet the spring and join the outside world again. For the first time in nearly 4 years I wanted to go out. I wanted to get dressed, look good and face the world. I was ready to deal with the reality of being on wheels.

Life is short, and I faced the reality that I had spent quite enough time wasting away in bed. I soon became an eBay expert, buying new clothes, shoes, jewelry. I bought beautiful new clothes: shoes, shirts, hats and more than 50 bow ties (that’s right BOW TIES, lol). I wanted to develop a new persona, a new Felix, a stronger Felix. I wanted to tell the world that winter was over.

One day, Denis was dressing me and I couldn’t help but notice that the lily had a small flower. I was going out, and the image of that flower invaded my mood with a beautiful serenity. We both made it!

We made it because we fought, because even when it was hard to actually fight, we DID NOT GIVE UP. My lily and I are connected. We are connected like all living things are connected in this vast journey we call life. I was lucky to survive my depression. I was actually very lucky but I was victorious - like my lily.

A few days ago, we decided to go and buy some plants. We headed to the local florist and even found some old friends of mine, that is a couple of the plants that I grew up with in Puerto Rico. We wheeled them home - me and my wheelchair looked like a float in the Mardi Gras parade.

We planted them in old terracotta pots and decorated a window sill in our bedroom. They looked beautiful but something was missing. I turned my wheelchair around and looked at my lily. I asked Denis to please add it to the other plants on the window sill. It looked beautiful. We cleaned the last few yellow leaves and placed it next to the very healthy ones. My lily was glad to be returning to the land of the living after four years struggling in exile.

I’m looking at it right now and I see myself. Not as strong as the ones near me, but alive and part of the world of the living. I told my husband Denis this morning, “You see that lily”? That’s me, it is going to make it” After telling him this correlation between my plant and my journey we both looked at our window, beautifully decorated with a very colorful old church stained glass window.

Like a rainbow of colors. Like a promise of life.