I started blogging about my illness by referring to it as a journey. It’s more of a kidnapping, as I did not choose this path but rather it chose me. Thus, I now refer to it as This Odyssey. I do have choices – no to suffer, to be happy, and now to share this blog with others.
So I have been through four stereotaxic cryosurgeries. That is, I have had brain cells frozen in order to halt this disease – commonly referred to as Dystonia, which describes some symptoms but gives no idea of the extent to which it causes pain and twisting of muscles.
Dystonia can be local, this is the most common form. It might affect the jaw, making chewing difficult, it might affect a foot or ankle, a hand, or the neck. Black women get it mostly in the leg below the knee and I read black men don’t get it at all. I don’t know about Asian races, but the type I have is the most severe, affecting a hemisphere, in my case the left, and is the type that Ashkenazi Jews have if they should develop it. This suggests that the disease is mutated by DNA, genetic makeup, although no history of it need appear in previous generations. Certainly there is no history in my family, on either side and my daughter is rude with health, an accomplished dancer, and she represented her school in cross country, 4×400 relay, 800 metres and 1500 metres.
I was very athletic in my childhood and youth. I wanted to pursue running, although I preferred sprint. In truth, I ran for the sheer pleasure of it, like a horse galloping. I would run at any opportunity. In fact, I unofficially beat a county champion after this disease had begun to appear. It was thought I had ‘hysteria’ as no cause could be found for the symptoms that were then apparent.
Very happy to be published by Dissident Voice again. Please click the link to see it.
It’s been a difficult three days. I could not sleep on Monday night as I stayed up too late reading poetry. I was also happy that I had been published on Sunday. So I became what I term ‘buzzed’ – the adrenalin in my nervous system is overwhelming and causes me to be incapable of relaxing. I get painful tremors and a tightening in my back, where there is nerve damage and muscle damage to the left of my spine.
In the evening, this usually heralds a night of tossing and turning, perspiration from an inner heat caused by my nervous system in overdrive. If I try to increase my medication it simply works in reverse, increasing the tremors and muscle tension. I must simply ride it out. Fighting it doesn’t help. How can I fight it? Acceptance takes away the misery, the suffering, if not the pain.
I have used the awake time to exchange information on Post Traumatic Stress Syndrome (Disorder) with a colleague in Australia. He is going to a symposium about it in Greece. He and I are both recovering from it ourselves. It is a distraction from pain to do this but the light from my laptop screen in a stimulant. I have it turned down, but it still affects me. I feel the distraction outweighs the negative effects. I would suffer if I had nothing else on which to concentrate. Why not write poetry at such times? I don’t, generally, because the voice of self-doubt that sits on my shoulder will be louder than normal and I will become entrenched in a self-defeating bout of low esteem and negativity which will feed my physical symptoms. Usually, I will sleep at some point in the day, whether from just around dawn until late morning or in the afternoon.
After a second night like this I was so happy to find I slept from 11.30 pm until 5am today, and then from elevenish until two. For some reason, I feel ‘buzzed’ now but am hoping it will recede and that I will sleep tonight.
The link will take to my poem in ‘Dissident Voice’.
My favorite of the three is Visuwords™ online graphical dictionary — “Look up words to find their meanings and associations with other words and concepts. Produce diagrams reminiscent of a ne…
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‘Different’ is a fantasy story for teenagers. It really is a different sort of story and examines the feelings of and reactions to being other than the people one mixes with in everyday life. Frank Mundo takes a 12 year old boy on an emotional roller coaster journey in this highly imaginative and well written story. It is full of surprises.
I can’t help wishing that Mundo had chosen to write this in the first person. I feel I would have had a deeper sympathy with the main character, although we are not kept in the dark about most of his thoughts or responses. Detail is not missing at all in this narration, no lost threads, characters, or subplots.
There is adult language and some mild sexual references, which is the only conflict I have.
I look forward to reading more from Frank Mundo. His mind is quick, clever and fun.
I am not fighting this disease. I am not winning, I am not losing. It is a day by day living – enjoying the happiness, not letting the very hard and difficult times overwhelm me. It is acceptance of what is, not ignoring it nor dwelling in its awfulness.
Managing the pain becomes a habit. Pain need not overwhelm me. Management takes practice, honesty and the ability to say and do what you need to do to avoid unnecessary pain. Sit down, take a nap, use the other chair, sit on the floor etc. After a while it becomes normal to do what is unusual.
So I realise my health is deteriorating fast now. Breathing is hard work most of the time and extremely hard work almost every day at some point. The tremors are increasingly painful and hard to manage. The residual pain in my back makes me gasp most evenings so I focus outside my body. I occupy my mind to distract from the pain. Breathing deeply for around ten minutes helps, as deep as I can that is.
I am planning for my death. One has to. It is part of living. I know that life is not just the time we spend here on the Earth, otherwise I would despair. I also know that I have done my best to make life better for others, both those close to me and many far away from me, whose story I may never know. I feel such grattitude for this. It is what life is for – to ease the burdens of others.