I’ve had a pretty rough three months that has given me a close relationship again with my bed. It nearly succeeded in making me immobile and once again I am pulling myself up by the bootstraps. I haven’t posted often on this blog during this time. I’ve been trying sporadically to keep up my other blog on my Nook http://mynameisjamie.net. Sitting up has been nauseating. But there is light at the end of the tunnel! For that I know I am fortunate, for I know those who aren’t so lucky and are on rougher rides.
I know how damned hard it is to deal with a debilitating chronic illness that never leaves you pain free for long, but occasionally there are times you have a good enough day you are encouraged to believe you are beating it and you have the mental energy to convince yourself that you’re winning. I feel an obligation to the people close to me to prove to them I’m okay so they don’t worry. I get so very tired of the question, “How are you doing today?” Out of concern for me, I know, but how many ways can you answer that question? But now I know I really am winning. I feel like I can leap over tall buildings in a single bound! ( That translates into being able to go to the grocery store and staying on my feet long enough to make it to the checkout line.)
Because of my determination I suck it up and force myself to push on. But it is because of this very determination, and because the mind is a very powerful part of who we are – I’m still here. I shouldn’t be. When you believe you will win your mind will find a way to do so. You are more powerful than you give yourself credit.
I have seen hopelessness in people. I’ve watched them give up finding meaning in their life even if it is just old age, with old age deterioration, often because of neglect of their health. No more dreams. No new “projects” to start. Waiting to die. No reaching out to help someone else because they are too busy complaining about their problems. They are lonely. They don’t make new friends. They bitch and moan and wait to die. The last years of your life determine your success with life. Die mentally miserable means you blew it. What a waste. It’s easy to fall into that trap and it’s very hard to pull yourself out of it – especially if you’re waiting for something “out there” to fix your life for you.
What has given me the strength, and therefore the knowledge, to survive and continue to push myself to develop my life takes more energy than I have sometimes. My confidence is in my practice of Nichiren Buddhism. http://sgi-usa.org. That is why I have the courage and confidence in myself that what I’m going through has a reason. I absolutely DO NOT BELIEVE in the fiction of an emotional, angry, loving supreme alien being in the sky who loves me and gives me benefits if I catch him on a good day, ignores me other times, and allows so many to suffer because…because…just because I was taught that as a kid. One woman told me that when things get bad enough he’ll step in and help. I choked on that statement. God always has an out for not doing anything. I just have trouble believing in anything that relies on blind faith and no proof. He ranks up there with the tooth fairy.
After 40 years of hep C and all the pain and variety of illnesses and suffering it caused, I started on the new hep C drug, Harvoni, 2 1/2 months ago – and it’s gone! Totally. …Gone. The virus is undetectable!! Wow! That did a number on my head. Holy shit! Gone. Now, the deal is, I have to take the meds until mid Feb and it has to still be gone 6 months after that before I can say, next August that I’m cured and throw a party, but wow! Just simply wow 🙂
I had surgery early August on my spine – because damage hep C and cirrhosis did to my bones. People know it can kill your liver but nobody really talks about the other destruction it does – the surgery, or rather the implant that was put in, hurt the intercostal muscles between my left ribs. The implant was inserted up my spine and when turned on generates electricity that overrides pain signals before it gets to the brain. At first it really helped. But now I can’t turn it on because it causes pain instead of taking it away. Healing time is 6-12 months and even then turning it on may re-damage it. That’s my lousy karma. What can go wrong usually does. I started the Hep C treatment right after the surgery and that made me very sick curled up on my bed for 2 months until the stopped one of the meds. It’s not as bad as interferon but it brought my life to a halt. I couldn’t do anything – didn’t want to do anything. I was a slug. I lived on anti-nausea meds.
This treatment won’t undo the damage already done, but as long as my body doesn’t reject my liver transplant I’M GOING TO LIVE LONGER! It will stop more damage. I’m happy!! I chanted nam-myoho-renge-kyo with the determination to show proof in my life of the power each person has to change his karma – caused by the things we think, do and say. I did this to myself. I am responsible for my life and it is my responsibility to change it. Happiness isn’t given to us. We need to find the absolute happiness that is in our life. Not the happiness we get from things or events, but indestructible happiness no one can shake. We can’t pray to an outside source for it. We have to create it. Then we have to share it and encourage others they can too.
Word of advice -you already know this and are probably ignoring it – if you are doing something destructive to your life and have a variety of stupid excuses why you are doing it – you know the excuses – trust me – YOU DO NOT WANT TO LIVE WITH THE CONSEQUENCES NO MATTER WHAT YOU TELL YOURSELF. It’s not worth it, and you are going to care a lot when you are faced with the consequences. You are going to be sorry. You aren’t special. It will get you.
The major desire I have in my life is to help others – I want my life to make a difference. It’s why I write – letters, my blogs, the book I’m writing, my music, poetry. My illnesses taught me so much I wouldn’t have understood otherwise. It is my benefit. It brought me home, near my mother. If I wasn’t sick I would have missed these years. But how can I encourage others if I don’t show proof in my own life of what a single person can do. That powerful God-like-nature is in all of us, it’s not “out there” getting jealous if it isn’t worshipped.
Who could have ever known being so sick would have the power to make me so happy. Who can see the positive side of their adversity? It has taken a long time to understand this with a long way to go. It’s up to me to change it. Whatever happens from here I know this karma is changed. I won’t be repeating it.
So to my sick friends reading this – you know who you are – you understand. And to everyone else who battles a hardship of any kind. Relationship, job, environment – You know how hard it is. Can you list the ways your adversity has made you a better person? Sometimes we win. Sometimes we lose. Sometimes there are things we need to learn first. But for me – finally – this week has been a giant win and I am enjoying it!
I recorded a new piece of music on my new piano. (First gift to myself in a long time, with the help of my son, and the support of my old hippie) It is the most recent post on my other blog.
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