Progress notes on coming to terms with life and death

As my therapist says, “how interesting” to see my life from the top of the mountain, from a god’s eye perspective.

I have been climbing up this rocky mountain my entire life. It is strewn with boulders and obstacles that have required me to go over, around, or through in order to keep making headway. Every now and then, at the end of a switchback, I glimpse a peek of what might be on the other side. I have spotted trees, a river, the sea filled with seahorses, squid and many other beautiful and magnificent creatures, I have swum with whalesharks, and I have heard the songs of birds. But as I try to climb over to get to that place where life is wonderful, another obstacle jumps in front of me – but I keep striving. This month, I have finally gotten to a place where I can see where life is worth living. Where there is goodness and joy, friends and a loving husband.

On Friday, I actually said that I have discovered that I want to live, and that threw me into a maelstrom of conflicting emotions. I asked how can I resolve the differences in my life and my doctor told me I don’t have to resolve them. I just need to accept them. Life is complicated. My life has been especially complicated, but I have worked hard to learn to live it with joy.

I have talked of how other people with MSA go to special therapists to try to learn to walk better, or to balance better, or to breathe better. I have done it myself. No, I am not perfect, but I have learned to balance well enough (except for those days I am too dizzy) to walk without fear of falling – I have learned how to catch myself so I don’t fall. I am reprogramming my brain. My therapist doc says I have taken the act of walking out of the brain stem’s automatic pilot and run new neurons around the top of my headin my cerebral cortex so I put “walk” into manual drive where I consciously control it. I have to think about it, watch where I put my feet, be aware of obstacles on the ground in order to not have a misstep, but I concentrate and get it done.

My pulmonologist said once you get hyperventilation syndrome, you can’t get better – except he has heard that those who meditate a lot and/or do yoga, have been able to learn to control that autonomic system. I have done a lot with that. I can slow my breathing (granted, it takes a few minutes if I have had to really struggle physically doing something – but I can do it.)

I still have more growth to work on. The major area of growth to concentrate on now – that I am worthy of anyone’s friendship and respect. That I do not have to listen to old “tapes” from parents about not being good enough, or about being afraid I will be judged by others. That I am not guilty of anything. That seems like a lot (looking at how often I say that I am sorry), but look at how much I have already done. More than I ever believed possible back when I started therapy. My psychiatrist asked me how far I wanted to take my therapy, and I told him, “all the way. As long and as far as I can”. And, I am doing that. I am working. I tried to say how much my herapist has brought me along and he said, “no – you have worked for everything you have gained. He has only been there to guide you.” So, even though there is more to do, I am doing it. To really accomplish changing the life of someone who has climbed that mountain, it takes many years of hard work to accomplish true growth and “rewire” the mind. In intend to change my mind and choose LIFE. To live with joy. To review in my mind, daily, the joyous and loving experiences of my life.