I feel the pain, like it was a choice I have to make ......Should I let the pain in? ....The pain is like a giant wave poising at its highest point right before it crashes over me. It hovers there waiting for my consent....Those moments are when the anxiety is most unbearable. I feel like I'm being suffocated. If I don't allow the wave to break upon me I will begin to numb out. If I don't choose to feel the pain it morphs into other ways of being which I sadly say I participate in . Ill do anything to keep this wave of anxiety at bay. I shop, twist my hair, obsess over people I don't like. Its not just the doing of those things but all the other dynamics that go into it like shame, guilt, and fear. These are all part of having an addiction and are very consuming distractions. There are also healthy addictions like exercise, politics and religion, which I also participate in . On the other hand if I choose to feel the pain, to allow my self to grieve, to let the wave engulf me..... let it submerge me if you will into the ocean of sorrow, and feel the anguish and hopelessness, somehow by surrendering to the pain, theres a release and I find myself alive although it felt like I was was dying. The whole process is the life death life cycle and in order to get to the life part of the cycle you have to go through what feels like the valley of death. .................
It was the fourth of July weekend and Michael spent it having seizures and sleeping. That's what happens.... he has seizures and they knock him out, they take all his energy away and then some ....he sleeps and sleeps for days.......
Right now he is only on one medication, Lamictal. We have tryed every drug there is including the ketogenic diet and the Vegas nerve stimulator implant. So we our looking for some new direction . There are 2 new medications on the market but they are basically the same as the other ones we've already tried.. There is also brain surgery and we don't know if Michael is a candidate for it and the thought of him having brain surgery is daunting to say the least. Right now I'm not looking at the reality of it because all I can think of is how wonderful it would be to just snip out a part of Michael's brain that has the seizures and then presto no more seizures....We are going to get an out patient EEG done. The doctor wants a CD made of it so he can study it closely himself and then bring it in for discussion to a panel of other neurologists he works with, if they see theres a possibility brain surgery would help, we will go down to San Francisco and do an in patient video EEG..........
I once had a neurologist tell me theres no one who hopes like a mother. So yes I find myself still hoping even after 17 years of no real improvement. I still have hope that something can be done to make my wonderful son better......