a word or two on loneliness

In the months that followed Michael's first seizure... I felt so alone.....If someone would have taken some time to feel my pain, grieve with me, it might have helped.... I say might have because in reality no one could have made Michael better ...I know its hard to witness another person in pain. It can be over whelming. You cant heal them or you don't have the power to change there life...but the bible says bear one an others burdens, mourn with those who mourn and weep with those who weep. The caring and the empathy matters....It matters allot... As I said it cant bring the healing one would want but knowing that someone cares softens and warms the cold hard places of loneliness and sorrow......My mother use to say "laugh and the world laughs with you, cry and you cry alone" unfortunately this can often be true.
I have always expected my friends and family to be understanding. Psychology and religion tells us that expectations are the no.1 problem in relating to one another. I think the point is that expectations usually set us up for disappointments. I guess if we can go into our expectations and not be shocked when people don't live up to them,maybe not having a high expectation will soften the fall?
I do know that a little compassion goes a long way......Letting someone know you see their pain and acknowledge their hardship can be very comforting.

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......