Tuesday, November 13, 2012
I do not get it at times
You know, there have been countless times I have looked out a window and said, "This is the worst thing that has ever happened to me".
But I always found out later, even though these trials began half a lifetime ago, that something WORSE would come along, and replace the former "worst thing which had ever happened to me" with something even worse.
I consider myself a positive person, but it wasn't until a year or so ago that I realized it wasn't ME these things were happening to, it was someone else. Someone I loved, someone I loved more than myself. That is why I always got mixed up and thought it was the worst thing happening to me, but really I was just a side figure. A part player in the role of a soldier, like my family soldiers, fighting for something way bigger than me.
When the children were born with autism, I had already been through countless horrible things.
I immersed myself in autism research and what happened? I became an "Autism Expert" and met my dear friend Elizabeth, the true Autism Expert. She is my friend to this day. I have never seen her in person, but like my other friends Kelly, Rose, Cindy, Fanny, Ant, Kim, Aard, Amy, Shannon and Erin Strothers, who has no idea what she means to me to keep me going just because she is really really funny and she HAS to start writing because she has the touch, I am able to go on. Because of Jim and a couple of friends in Pound Ridge I can go on, too.
After the children's autism, the stress and sleep deprivation caused my only period of depression ever, in my whole life. That is when I discovered I was Bipolar I, the most lethal disorder of all the neurological disorders. Because it is not a mental illness, I can take medication for it and I do, for the sake of the family. I never had a relapse after the episode I had (which was a whopper and I look fondly back upon it in many ways because I could hear the stars singing to me on cold nights and things like that, which were inexpressibly beautiful BUT do not try this at home, please). It has been around 16 years since that happened. People say, aren't you fixed? No I am not fixed. I was born with this in my brain. You cannot catch it, you inherit it. And you have it forever.
In the hospital, I spent the whole time diligently earning points for good behavior (as they medicated me with lithium so I would no longer be manic), so I could make crafts in the craft room. I had never seen a craft room. No one gave you any guidance. You just chose something and started making it. This was really GREAT and I loved it. I was desperately making crafts--I made three things and now I am laughing, thinking back, because Dylan broke them all as soon as I came home (it's his JOB!).
When Jim brought me home I was almost agoraphobic because I had never had a point in my life where my brain, which I have a high opinion of even if whenever I take an IQ test online I come out borderline retarded, had really let me down. It took me a year to regain my self confidence, I never left the house. Good practice for my future life of ... never leaving the house.
I did however decide to use the time continuing to help other families with children with disabilities, to write humor pieces, and to counsel people writing a journal online. The passion I had for telling other people to stay on their medications if they had manic depression was expressed weekly by me for ten years at a health site online. Nobody in my family (the elders) knew I was doing this so that I could be very honest. Nobody reading me knew me as anything but Jean. And a photo cropped close which was nice, which Jim had taken.
During this time I started researching and making jewelry.
Then came the seizures.
Dylan's early seizures were horrible. We got through it. Jim was my hero.
Dylan stayed home for 6 months while he began to stabilize with massive doses of anti-seizure medication. Then Jim spent the next year driving him to and from his school because we were concerned he would have a seizure on the bus. Jim is amazing.
I was making jewelry for my book while Dylan was having seizures at home. I would sit next to him and weave chain maille as he slept after a seizure.
Then Robert got seizures. Back to square one.
This is what I was trying to explain earlier when I said, "This is the worst thing that ever happened to me". As you can see, it isn't me, it is my loved ones.
Jim got diabetes, we were treated unspeakably horribly by some people I choose not to discuss, and all through this our children were and are the reason we go on.
I became a jewelry expert and a published writer and started collecting dolls, the motivation behind which I don't understand but it fills some sort of hole.
I met a whole new group of friends on Flickr, some of whom do not even speak my language but we all share this similar passion for dolls and photography.
I became a reviewer.
I became a columnist.
I love what I do, but I don't need to do anything but keep on keeping on right now, until the terrible sadness of the worst thing that [didn't] happen to me dissipates a tiny bit.If it ever does.
I have said to myself, "Jean, never make this blog a diva drama", however, now that my son has returned to school, here we are right back where we were, and I have to face the fact that no storm, no snow, no horrible past, is what I must stand up to. I must continue to stand up to LIFE and I do it for Robert. And that is what I do. Because more than anything, I miss Robert and so does Jim. Robert was here. Robert was here for a reason. So I am here for a reason, whatever it is.