So this is my life after death. I was diagnosed with Addison’s Disease almost 2 years ago. I knew I was sick for many years before that but trying to figure out WHAT was wrong with me was a whole other ball of wax. I almost died in my doctor’s office one day but didn’t because of the amazing attention and care I was given by my doctor. She is female and only a few years younger than me so I think that is why she actually cares. She also specializes in Women’s Studies so I think that is what also makes her a better physician.
I spent a lot of time in bed hovering between life and death. The side effects from the meds made me even sicker but I had to take them to stay alive. Every single one of them listed weight gain and nausea as major side effects. My thick beautiful hair turned white and fell out in clumps. The meds also increased my blood sugar levels. As I watched my body bloat and I no longer recognized myself in the mirror my world became very dark very quickly. I was in for the fight of my life and I didn’t know if I had it in me to keep on trying. I just wanted to close my eyes and go to sleep forever.
But then my son moved back home after getting hit by a Mack truck and needed help to rebuild his life. My life had a meaningful purpose again. I knew it was going to be the toughest road I’d have to walk in order to not only survive this disease but also conquer it.
I’ve been thin my whole life and my body type was not built for carrying any extra weight. It took about a year but once my vitals became stable I started the slow agonizing process of weaning myself off of a lot of the meds I’d been put on. I did it under close supervision with my doctor. The hardest part was pushing myself through the physical pain I felt with every step I took. I felt every extra pound on my joints and spine. A lot of the weight has come off but I still don’t feel like me. I don’t know if I ever will again but I hope so.
I was really sick for almost 2 years but I didn’t give up. And now that I’m finally starting to see a light at the end of this tunnel, we’ve been inflicted with this pandemic. I worked in the health care field for many years (as a PSW, Nurses Aide and Medical Office Assistant) and if I wasn’t in the high-risk category I would be working the frontlines like I did through the SARS outbreak. Instead, I have mostly isolated myself so that I don’t get infected and die.
I don’t know how this whole saga will play out but I do know that I’m stronger than what I give myself credit for. I am a survivor. As horrible as this coronavirus is; it gives me a small degree of comfort to know that (almost) everyone is taking precautions to prevent further infections and death. Before this all started I had always been very hyper vigilant about using PPE to safeguard myself and my children from any diseases and viruses I could potentially pick up from patients at work. But, I’d watch in horror as other people casually exposed themselves to germs. Now, we are all in the same boat and risk losing someone if we don’t protect ourselves.
Being raised in a doomsday cult has in some ways prepared me for the apocalyptic world we now live in. It’s probably the only good thing to come out of that whole experience.
When I ask myself how I ended up here I see flashes of memories spin out like an 8mm movie reel on the wall of my mind. I tried so hard to put those horrific years behind me by pretending that it didn’t matter. I foolishly thought I could just put them out of mind by pushing those feelings and images deep down into my gut and sealed behind concrete walls reinforced with steel. I naively thought I could just get on with my life with no repercussions. For many years I tried to blend in somewhat so that I didn’t draw attention myself; thus ensuring my place amongst “normal” people.
Every day begins the same way for me these days. First of all, when I first wake up I am genuinelysurprised that I’m still here; that I’m actually still alive. That I made it through another night. Then the next thoughst that wash over me is a mixture of sadness and loss. Everything comes rushing back to me like a tidal wave crashing me against the rocks. The feeling of dread and heaviness settles over my heart again. The pain is palpable. The tapes start up and the first question in my mind is always the same: How did I get here? Like a set of dominoes lined up against each other I start to feel the pieces fall over each other. The last 35 years have both rushed past me and also kept me frozen in time in a world that never meant any sense to me but was forced to comply with for fear of serious repercussions.
What I didn’t count on though was feeling like I didn’t really fit in with others. Everything seemed so strange and unfamiliar to me that my discomfort manifested itself first mentally and then physically. I couldn’t relate to people who talked about their happy childhoods and experiences of growing up to become whoever and whatever they wanted to be. I couldn’t talk about the kids I went to school with for fear that it would expose my deep dark dirty secret of being a freak because of growing up in a doomsday cult that had cast a shadow over my day to day existence and plagued me through nightmares that have given me a lifetime of nightmares and insomnia. I felt like I was always inadequate around my peers. I have spent a lifetime playing catch up for the years that were robbed from me as a child. I have placed enormous pressure on myself to succeed in anything and everything I have put my hand to. Yet, no matter what I accomplish I never feel satiated. Instead, the anxiety keeps coming back and saying, “Well now what are you going to do with yourself?” I am forever trying to play catch up but have finally realized that I am slowly killing myself trying to justify my very existence.
Before I got really sick and ended up in the hospital I had prided myself in my achievements and felt like I had grown as a person. That was before I looked into the eyes of The Grim Reaper again and realized that he was determined to ride my back until I succumbed to his sickle. This time I came perilously close to shutting my eyes forever.
It would have been so easy to just let go and give in to it. But, there was still something inside of me that wanted to take that last kick at the can. I knew it wouldn’t be easy. I knew that the severe reaction I had had from the meds that they had me on for 10 months would be my biggest challenge yet. Every inch of me hurt and the weight I had gained from those meds put intense pressure on my joints and muscles. I instinctively knew that to go from where I was to where I wanted to be would be intense and torturous.
We moved to a secluded little beach house out in the countryside. It gave me the peace and serenity to be able to finally heal myself. It meant I would have to analyze every aspect of my life finally and put the pieces back together of my broken psyche. I would finally be able to be the person I believe I was created to be. I was finally able to leave the city that I was born in and grew up in behind me and examine the destruction from afar in order to gain perspective of all the damage that had occurred in my lifetime. I am surrounded by forests and silence. For the first time in a long time I am able to open that dark room inside my head and exorcise my demons. I am in control now and strong enough to examine and slay those thoughts and images. However, mornings still start with an incredible sadness for what could have been but will never be now no matter what I do.
The nights don’t set me free either because my mind never shuts down. Instead I am subjected to terrifying graphic images that flood my mind until I finally succumb to short periods of sleep. The dreams and nightmares are so realistic that they often set my mood for the day until I get up and begin the process of medicating and taking care of myself. I am in physical pain from years of abuse to my body and an auto-immune disease that has gifted me with extreme fatigue, chronic illness and sometimes debilitating pain. When you feel like you are trapped in your body your mind begins to spin out of control with negative messages and memories. This is the hardest part of my day. Sometimes it all seems so overwhelming and hopeless. I have to talk myself down from the ledge and convince myself once again that once I am medicated things will begin to look better. I need the nausea and pain to lessen before I can focus on anything positive. I have to force myself to get up and do the many things it takes for me to even begin feeling somewhat like myself again. I push myself to go outside and open my eyes to the beautiful possibilities that each new day brings. I remind myself of all the magical things the future holds for me if I just never give up. I lift myself up by listening to music and purging my thoughts. But, no matter what I do or how great things go that day I know that tomorrow and every day thereafter I will be faced with challenges that will demand every bit of strength that I have in order to carry on. I also know that I have much to be grateful for. I have 2 beautiful grown kids who have always been the best part of my life. I have 2 amazing grandkids and a loving supportive husband who has never left my side and supports me unconditionally. I live in a wonderful house with a beach at the end of my street. I have the time to focus on my projects and explore new interests. I have extended family that accept me as I am and don’t try to change or censor me. I have so many things to be thankful for. So, I remind myself of these things when I start my day with thoughts of defeat and the awareness of my limitations. And each night I pray for the strength to make it through the darkness; awakening to the start of another brand new day.
I am fully aware that each day could be my last. So today , while the sun is shining I will bask in the knowledge that I have been granted another day to do anything that brings me joy and the opportunity to keep growing as a person. It’s never over until it’s over. – Malice