I first decided to start this blog because there was no one out there talking about their life with Sarcoidosis. There were tons of blogs about the physical attributions of the disease, all the research and data collected, but there was no human side. The feelings. The pain. The anger.
I felt I needed to get a lot off of my chest (no pun intended) and I decided to see a psychologist. That was a disaster. She was very negative and after three sessions of her trying to make me as negative as she, I quit the sessions. I decided to start this blog as a way of getting my feelings out.
Whether or not you want to admit it, being diagnosed with a life altering chronic illness will cause grief. In my case, I grieved for the life I had before all this happened. There are supposedly five stages of grief. Denial, Anger, Bargaining, Depression, and finally Acceptance.
Denial. Been there, done that. For a while after first being diagnosed with cardiac sarcoidosis and heart failure, I was in a major state of denial for a long time. I pretended that nothing changed. I was the same old person I was just before. It was hard at first to accept because my change was not a gradual one. In July 2007, I had an echo and my heart was strong, perfect, my cardiologist said. In August 2007, a month later, my heart was in failure with a 20% ejection fraction. A month after that I elected to have a defibrillator implanted. Major life changes that I was not for, and I just kept on going, pretending that nothing had changed.
Then came the anger. I never got the “why me”, but I did get angry that it happened to me, that my life had changed significantly, and that I was going to have to learn to adjust. I wasn’t the man I was anymore. I couldn’t do a lot of what I did before, and I never would be. I had a list of all that I was not longer permitted to do physically, and really and truly, it pissed me off. When I went to have the hole in my heart closed, I was supposed to wake up and all was going to be good in the world. It wasn’t. It was the complete opposite.
I think I skipped over the bargaining part. There wasn’t anything really to bargain about. Who was I going to bargain with? Pray to God and ask him to make me better? I was angry, so no bargaining there. I did pray tho, but not bargain. There was not changing the situation, and I understood that, but had not yet accepted it.
Then the depression set in. It was not the stay in bed and pull the covers over your head kind of depression, but a very subtle sadness. It came right after the anger. Thankfully the anger was short-lived, I suppose because I am a pretty positive person. I didn’t cry, or bawl or weep. I was just sad. Sad for the old me, the old life, the old way of doing things. I was sad for my wife. This was hard for her and as big a change for her as it was for me. And I was amazed at how the simplest of things affected me. There was now some things I could not do anymore, like lift a heavy flower-pot for her while she was gardening. I used to be able to lift very heavy items. Not any more. I am not supposed to lift anything over 25 pounds. And if I do, I feel it. So I don’t anymore. Now we have a guy come in spring and fall to move the heavy flower pots in and out of storage as well as the outdoor furniture. I was definitely sad.
And finally, stage five. Acceptance. There is a difference between resignation and acceptance. You have to accept the loss or change, not just try to live with it quietly. Acceptance is the realization that you have a chronic incurable disease and finding the good that can come out of the pain of the changes it brings, finding comfort and healing. And I think that I finally reached stage five of this journey. That’s not to say that I am going to sit in a corner in the lotus position and chant “om” for three hours under a cherry tree wearing a doti. I am sure that there will be times that the other four stages will raise their heads. I accept that, and when they do I will be better equipped and ready to handle them. The fact is, I know I have an incurable disease (sarcoidosis), but I can control it, and that incurable disease had led to two incurable conditions, heart failure and pulmonary hypertension. And somewhere down the line I have been told that I will need a heart and lung transplant. I’ll cross that bridge whenever I get there.
Having this blog to release a lot of my thoughts has allowed me to help myself to accept who I am now, and my new life. It has taught me to be grateful for every little thing that happens in my life, and the people in it. I have learned to see any set backs as positive thing, a purpose, a lesson. Acceptance is a great thing, and if you have a chronic disease, when you get there, you won’t believe how good you will feel. The thing is though, you can’t rush it. It will happen on it’s own. One morning you will wake up and realize that your whole outlook on your life, its changes and challenges are totally different. I am there now, and I sincerely wish for the day that everyone else can be there.
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