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.






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16 Comments:

Blogger Margot Potter says...

I do not get it either, at times. Sometimes it just feels so vast and infinite and impossible to navigate. Yet, we do. You do it with such grace, Jean.

I wish I could wave a wand and fix it all, the sorrow, the sadness, the cruelness of people who feel compelled to kick us with their spiky boots.

You are light and you are loved, perhaps this is something upon which you might hang your hat...or your heart.

Love
Madge

November 13, 2012 at 7:55 AM  
Blogger Joan Tucker says...

Madge said it best.

You are so special in taking your life on.With all the rough stuff and all the good stuff and persevering with love. To an outsider you and JIm seem like an unbelievable couple managing the impossible with grace.I send lots of love and hugs. Joan T

November 13, 2012 at 8:07 AM  
Blogger Jean says...

oH MY GOSH i FORGOT TO INCLUDE YOU TWO. Forgive me.
I am in total tears .
Thank you for writing. I am devoted and love both of you!

November 13, 2012 at 8:20 AM  
Anonymous Jane Pierrepont says...

I am not good at words Jean, so, I am just going to say the words that have obviously come from deep inside your heart are very human. When things are bad I ask myself...what would make me happy right now? It is usually tea and cake, which is a small but very important gesture to help me keep smiling.
Make tea, eat cake and be you, in all your glory.
With Love xxx

November 13, 2012 at 8:41 AM  
Blogger Erin S says...

Oh Jean, you are such a wonderful person, and you have been through so much. Just keep swimming, my friend. I can't think of anything even remotely funny to say right now, but I'll let you know as soon a something snarky pops into my head.
xoxoxo

November 13, 2012 at 9:12 AM  
Blogger Erin S says...

Oh Jean, you are such a wonderful person, and you have been through so much. Just keep swimming, my friend. I can't think of anything even remotely funny to say right now, but I'll let you know as soon a something snarky pops into my head.
xoxoxo

November 13, 2012 at 9:13 AM  
Blogger missficklemedia says...

Jean.
I do not have words, but I have feelings and understanding for this.
Thank you for being in my life, being brave enough to share and having the brain you do.
Just keep waking up, okay?
I love you.

November 13, 2012 at 9:34 AM  
Blogger Jehannamama says...

That is how it is...I hope you know how much your writing, your humor, your chats in the wee hours of the morning, helped another mom who has two sons with Autism. It got me through another day, another week. It helped me when my daughter was diagnosed BP, to get some grounding and perspective. I appreciated having you in my life through that time, though I know you don't really remember me. Which is how it should be. Thank you.
I'm so very sorry for what you are going through, for the health of your beloved sons and husband, for the troubles you are still enduring.
And I am so very thankful to see a glimpse of the triumphs, too. Because you have them. You're still you. You have this irrepressible humor though it all. And talent and creativity. Bless you for being you and not losing yourself. Because sometimes that is such an easy thing for some of us to do.

November 13, 2012 at 10:53 AM  
Anonymous Avianti Jewelry says...

Thanks for sharing such an inspirational story. Your a beautiful person.

November 13, 2012 at 10:53 AM  
Blogger Marissa Foss says...

It takes incredible strength to keep positive, and to stay afloat when it feels like you're drowning. Thank you so much for sharing your feelings. I deeply admire this courage, both for making it through what you have and for letting everyone in on your most vulnerable thoughts. This is what makes you such a wonderful person. Everyone here at Artbeads supports you.

-Marissa Foss, Artbeads.com

November 13, 2012 at 12:48 PM  
Blogger shelly says...

i don't know you, jean. i feel like i know you. i read your blog and laugh and i cried when your sweet boy left you. you are what i strive to be... stronger, smarter, determined, gifted and funny.

thank you for sharing your story. it brings us closer as being human and feeling pain and joy.

shelly

November 13, 2012 at 1:12 PM  

My grandson having had seizures was the most frightening of experiences. I'm so grateful for his keto kid diet working and making them finally vanish years ago. But I remember the terror of sleeping, fearing he'd have a seizure in the night. To survive, terror became utter peacefulness -- we adults focused in all the ways we could for relief, and then focused for joy. We learned to be so appreciative of everything: a good day, a friend, a neat song, a good night.

It was the fear I hated.
Yet you look at fear, straight on, with your vulnerability, your honesty, your gentle hope, your POWER. You are probably the most courageous woman I know. You are beautiful, and perfect.

So you were manic; don't be afraid of the magic. The stars do sing for us, only most of us don't get to know that until we have broader perspective again in the non-physical.

Once I considered that my fear -- indeed all my emotions -- were like a guidance system built in, real time GPS, letting me know how my thoughts were impacting my life -- whether in the vortex or out of the vortex; close to or pinching me off from Source energy (with thoughts that feel like appreciation, thoughtfulness, enthusiasm, joy, awe, wonder, love, passion, knowing in the vortex and emotions that feel worse simply carrying the message, "nope, Source disagrees with that idea") I was free to look at life, notice the emotion, change my ideas. Thoughts of, "I'm stupid" brought negative emotion. Source disagreed. Thoughts of "There will be trouble" felt awful as Source disagreed.

I reach for thoughts of relief, I turn downstream.

"I'm nifty" -- feels nice -- evidently, Source agrees.

They say only the most gifted, most aware, those of us who are teachers of teachers, ride a wild river, ride the contrast and with each experience, carve out a new world with their hearts and their souls and their love.

Thank you for being a teacher of teachers, for living on the leading edge, for teaching us not to fear; for being you: amazing Jean, incredible, talented, loving, full of Source, full of light, gentle and powerful, transforming and steady, real, wonderful, beautiful, magical you.


November 13, 2012 at 8:43 PM  
Blogger Pamela770 says...

This post is beautiful, in that it's truthful and raw. Thanks for sharing , and being brave enough to do so. Sending you healing love and light.....

~Pamela

November 13, 2012 at 11:20 PM  

Jean - I know that you do not know me, and I do not "know" you other than reading your blog. However, just from reading your honest and heartfelt musings I can tell that you are a very special person. I wish I had something inspirational to say, but I hope it makes your day a tiny bit brighter to know that you make a positive difference in my day everytime I read your blog.

November 14, 2012 at 8:37 AM  
Blogger Naomi Rose Designs says...

Hugs

November 16, 2012 at 6:46 AM  
Blogger sf says...

November 17, 2012 at 5:45 PM  

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