Hi
Things continue to go generally quite well. Bryn has started working out at the gym with a few of his friends and has developed some pretty impressive arm muscles.I am hoping this will support him to be generally healthier, too, not to mention giving him some bragging rights!! He even goes alone if his timing doesn't work with his friends. He's never done much on his own and I think this shows some quite healthy, new, basic level of comfort with himself.
Recently he said he was glad he had ALPS because it makes him who he is. He say he wouldn't be the same person if this hadn't happened. See, self-acceptance. That's been hard won and a long time coming.
There are bumps too, though. Well, this is life. We all have bumps though we spend a lot of time trying to pretend we are as all-together as those Hollywood stars seems to be. all the world's a stage, they say. I hope this blog is a place we can be real about the bumps.
Yesterday Bryn had one of those days when he couldn't get out of bed. Partly I think it was that he has not been getting enough sleep to support this muscle-building but even more I think he gets overwhelmed about what he is going to do in the future and trying to figure college out. He lazed around saying he felt energy-less and a bit depressed most of the day, after sleeping until 2:00 p.m. And in the early evening he began looking again at the University program that interests him and by the end of the night was the clearest he has ever been about what his plan is. This getting energy-less is his pattern when he is emotionally overwhelmed. And there is a lot of anxiety this year. Having an AI syndrome magnifies his fears and anxieties. I get really worried on these days, a dread in my heart. He came out of it pretty fast though - by this morning he was back to normal. That's growth, too.
Occasionally he blows off steam in his old pattern of booming voice and abuse. But he apologizes quickly -- often getting triggered again quite quickly and apologizing again etc. This doesn't happen too often and he knows himself now so he can catch himself way better. For sure ALPS has taught him about himself to a much deeper and broader degree than if he had not had this happen.
I know he has been lucky that he is mild. but in another way that has been his torture - he is almost normal, he looks normal, his illness is invisible, but HE IS NOT "NORMAL". He wants to be normal more than anything. I wonder how it is for any of you put there with an AI syndrome - not so lucky. How are you coping? And for those who are similar - how are you?
I can't stress enough the value of a good therapist with skills in dealing with trauma, EMT to release old trauma, really good body work that gets down to the nervous system and calms it down in the moment. Let's face it, it is traumatic to have a chronic illness. It affects the sense of self, hope and dreams for the future, daily life. It is scary, it can be painful and isolating. Bryn has gained so much from seeing our therapist. She is a complete gem, very skilled, open of heart, accepting, loving. Don't hesitate to take yourself to see someone. Perhaps there can be a silver lining in the cloud of having an AI syndromes.
There's plenty I don't know, so many different syndromes - if you want to share it here, that would be OK with me. I'd like to start a dialogue - sharing and talking are also good therapies, finding support with each other. I am the parent of someone with an AI syndrome - I know I don't have one, but I have been intimately involved all the way along. And it has hurt me to see my son scared, suffering, traumatize, anxious and depressed. Not thriving at all. I've been there. I hope others will share here too.
The light at the end of each tunnel is different, the tunnel is different, but I hope there can be some light for everyone. Finding a community of people who understand can be the start of that light.
In spirit with you,
Cathy
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