Friday, October 8, 2010

My story starts and ends with me

November 2, 1987

School conference with Aja's teacher today. She does well in school, but needs some work with letter sounds and math concepts. She is fine though and tries hard. I think she gets frustrated too easily.

I am sick. It is really terrible to be sick. Ianthe fell asleep counting pennies today at 11:30. She must have been pretty wiped out.

We had lots of fun on Halloween, in Bayport. Aja and Harrison went out ahead of us and arrived home about five minutes before Cris, Ianthe and me. Cris took them back out again. They were too afraid of some of the spookier houses.
Scary Pirate Harrison and Spooky Ghost Aja!
I am interested in the occult lately. Want to know more. Maybe if I close my eyes and just let myself write some thing might happen...

/rolls eyes
I once was a river
trees standing tall
never enough time to grow
the wind seems so
restless the snow so cold
Once I could speak
but now there are no words
My lab is small
the wall are white
one of my assistants is
a little girl with curls
and a puffy yellow dress.
The other is a man
in a lab coat. his hair
is thin and dark -
balding at the top.
They each stand in wait
with chalk by the board
man to the left girl
to the right.

November 5, 1987

Before I was born, I went with my other and father to Banff National Park in Alberta, Canada. There is a black and white picture, with crinkly edges (the old fashioned kind, you know) of my mother with her big fat pregnant belly. This is me. I know it and feel it, more surely than any other early memory. I am reminded of my own children - Aja in utero attending the Alice Cooper concert - she did not like it. Ianthe went to REM a month before she was born. I danced - she didn't even twitch - she never did - nothing then or now ever phases her.

Magic, Cris is taking a very intellectual approach. I doubt it will ever work for him. Me, I've gone through believing in it. I have feared it and realized that truly fearing something is the same as knowing it is real - so I just shifted focus. Fear is not a good approach.

I want to help Cris, but I think although he thinks it is his own doing, he is helpless. He wants proof - I've already had it. I will make him an "altar" - he is so into ceremony. I'll stock it with glass vials and wool cloth and many colored candles. I'll get him another mortar and pestle (maybe his mom still has ours) and a beautiful glass tray in which to burn things. I'll get him a glass pan to make an infusion. Maybe even stock the vials with a few remote herbs. Oh, how exciting.


I live in a very black and white world. I am the star of my existence. I have and always will be. It comforts me to know my story starts and ends with me.

When I was a young mother, I wished I could disappear. I found a book on magic that talked about how you could become invisible. He wasn't talking about becoming invisible in the "poof" gone sort of way - it was more along the lines of "blending" in. That thought really appealed to me. I practiced.

I dressed up sometimes. Wore clothes that were not mine - that I had bought at a garage sale or been given by a friend. I would do up my hair in a different style. I would paint my face with makeup - I never wear make up - I did in high school, but haven't since. I like my face just fine thank you. 

I would look totally NOT ME. I went to places that I knew Cris would be at: Uptown, the Walker Art Center, an Art Crawl downtown. I would casually walk around using the "blending" techniques. Breathe in slowly, hold, breathe out slowly, breathe. Stay to the edges, move slowly. Stay out of sight lines.

I would watch Cris with Char. I was insane with jealousy. At this point in my life, I do not understand why I could spend so much time "stalking" my own husband, confused about why he had chosen another, believing it HAD to be me. I knew about Char in July - Ianthe was born in September. I finally left him for good in June, before Ianthe turned three. That is a long time to torture one's self. Why did I do that to myself. I know now. The patterns of existence. I have routines. I hate my routines to be disrupted. But back then, I didn't know that Asperger's ruled my thoughts, ruled my behavior. Ruled my doubt.

You know that feeling in your stomach? The one that makes you slightly sick - the adrenaline being released - the slow burn? Think of that. Three years. And I thought I was the one at fault. I wasn't a good enough wife. I didn't cook well enough. I didn't keep the house clean enough, I didn't read the labels right: bough creamed corn instead of whole kernel. But it wasn't me at all. I was good enough. It was not me. It was him. 

I enjoyed my invisible self. I was no one. I could walk freely around unafraid. I asked the neighbor downstairs to listen for my babies, if they cried. Then donning my stranger's clothing, I would take the bus to Uptown and walk around, following Cris and Char. They never once saw me. I enjoyed it as much as I was pained by it. I think I enjoyed the secret me - it was the free me - the normal human with no children me. I was not ME. I was what others were to me. A Stranger.

Sometimes now, I wish I could disappear. To become invisible. I wish I were invisible now. To disappear from the world. To work in the dark. Alone. All Alone, very quiet, only the sound of the bubbles in my can of coke and the bouncing of the keyboard as I type, and the quiet pat, pat, pat as another cat comes to see what I have written tonight.

A secret. The story starts and ends with me. I am not afraid of that.

Sunday, October 3, 2010

Survivor's guilt

Sharon Olds, last year I wanted to remember her. I never have found a book of hers. Well, I've never looked either. Tears come into my eyes when I read it. If I read it again, the tears will come again. The tears will flow. Oh, it hurts. When you just "have" to do something. Nobody knows, or cares, but there is a sense in you that makes you perform. An urgency in your voice/eyes that lets people know it is necessary for you to do these things.

In Poetry class, I sit between two others. Sharna is at my left. She is panicky. She says she has a brain tumor. She says she is going to write a book series of her dream realities: Fantasy Adventure. She thinks she is dying. She hurries to finish up her undone ends in this life - which is too short for even an old man/woman to finish all.

She is panicked. I feel sorry for her. I do not want her to panic. This is not the time to panic at all. I was thinking and really believing that we shouldn't ever ask why. It takes up too much time. Even in a long prolonged life, there is never time. Sharna, get on with your stages of excepting the inevitability of death. You might think that you have done just so, but you haven't. I'm not saying I could, but I do know what should be done. I also know that many people do not die of brain tumors. You just may be one of those who can survive. You are so worried, an adolescent wanting to experience it all before you die. Sex, the mystery of sec and love - oh, just a fantasy. But yes, it is real, poor Sharna. Don't panic.


I remember this so well, poor panicky Sharna. Awkward Sharna. I took pity on her, someone more awkward than myself. I always did that - I still do. The awkward make me seem graceful and confident. I feel powerful at these times. Their obvious lack of social skills, minimizes my own. I actually use their tension to mask mine.

Brain tumors and cancer - hot button topics for me.

It was a brain tumor that actually led to my Asperger's diagnosis. My friend, my colleague, my next-door-teacher, my children's Art teacher, my mentor, my peer, Mark Wald, had a brain tumor. He was a strong man - a will as great to live as my own. He was given only a few months to live, he lived 18 months past his diagnosis. I loved that man. Before he died, he said he had something to do, something planned for him - in the afterlife. He knew that I do not believe in such things, but I agreed and smiled through the tears. My friend Denny had accompanied me to this final visit with my friend. Mark, a man that always was dapper and fit and beautiful, lay helpless, swollen from steroids, and (I assume) spinal fluid build up. He had laid out a bevy of snacks for us, veggies and dip, plates and napkins, drinks. It must have taken him more than an hour to prepare. We talked. This last time. Denny and I both grateful for the presence of the other. We ate our snacks. We talked of the beauty of art - of Mark's legacy to the community - of his pain - of his preparedness to let go - just not yet - soon. This was two weeks before he died.

We had heard that he had later, in the night, awakened, he had climbed into the attic to retrieve his favorite Christmas items. He set them up. What a feat of will. The man was a true Christian - a Catholic - rejected by the church for his very being. He loved Christmas. A week before Christmas, Mark lost the ability to speak. He was a chatter bug. He loved to talk. He was trapped into silence. His family and friends gathered to take turns at his side. Talking to him - he could make expressions, but for once, he couldn't add anything to the conversation. I can only imagine how painful that must have been for him.

My friend, Jeanne called a day or so before Christmas eve, to chat and talk about her "shift" with Mark on Christmas Day. I think, I remember at least - memories are weird like that - I told her that I thought Mark might let go before then. That he loved Christmas. Making it to Christmas eve would be close enough. I thought of my children's great-grandfather Norm. He made it to Christmas eve too. My own father made it through a weekend of surprise visits by his children, even found the energy to attend mass - one more time. He died on my daughter, Ianthe's birthday.

Jeanne called Christmas eve evening. Yes, Mark had gone peacefully the day. His mother had held him and told him it was okay to go. I cannot begin to measure the loss that Mark's family felt, his partner felt or the loss that we three friends - Denny, Jeanne and me - felt and his other friends felt. I can tell you that Mark Wald lived a glorious life. He taught students to make beautiful Art. He taught students about tolerance and acceptance. He was one of the first Minneapolis School teachers to "come out". He made beautiful Art too.

My Friend, "Sparky" Mark Wald - he would have been amused that I had initially misspelled "sparky" as "spanky".
I have survivor's guilt. I survived a second bout of cancer that left me with a 30% chance to live. A bone marrow transplant (my own marrow) gave me a 50% chance. When I tried to cheer Mark up, that I had survived a 30% chance - he said that sounded cheery to his chances. But he was willing to put in the hard work to go through the surgeries, the radiation, the chemo to keep his chances as open as possible. He managed to return to his classroom for 2nd semester. Jeanne found the strength to help him everyday - I do not now how. She didn't take to me right away - I am not easy to approach - but as the year went on, we grew closer and closer. I could not imagine life without Jeanne now. 

Near the end of the school year, a viscous student accused Mark of racism. Unbelievable. False. The school district removed him from the classroom 2 weeks before the end of the school year. The Loudermill hearing (the witch hunt in Minneapolis Public Schools) removed all of Mark's chances to return to the only thing he wanted to do - to teach. They took away his reason for existence.

Next school year was even worse. Mark had not been replaced - because he had not been fired so much as "crushed. A long term sub had to be found. Anyone but "that woman" who subbed for him in the winter - not her - anyone but her (I refuse to name her, I feel only kindness towards her now) - but it was "that woman". She was inexperienced in 2-D Art. She was inexperienced as a teacher. She had social issues that confused me. Later Denny told me that she had grown up in a closed sect of missionaries. We clashed. She did not understand me. I tried to be nice, she thought I had other motivations. She was mean. I tried the silent treatment. I reversed again and tried to be nice, she told me I was after her job. It was hell.

After Mark died, Denny and I, who were left at school together, alone, without him, we pulled together in our sorrow. At lunch, we would sometimes just look at each other with great sadness. Sometimes - well - mostly me - I would burst into tears at the slightest provocation - the sight of the duct tape that Mark had used to hang student work in the stair well, being awarded the plaque congratulating me - in Mark's stead - for his Gate's Scholar. He should have been there to receive that. He should have been. Not me. Oh, such sorrow. My engineer, a caring soul often the butt of jokes by his fellow coworkers, presented me with Mark's sign - the one that directed parents for teacher conferences, when I returned to school after the holiday recess.  That year was hell. I wanted to die. I cried everyday. I missed Mark so much.

The following school year was not much better. We had hired a new, talented Artist - a gem in the district, so we started out optimistic. In October, during a doctor's visit, I confessed my suicidal ideations - well, I had gone because of the thoughts - no "confession" needed. He was frank with me. "You know, if you were anyone else, I would hospitalize you. I strongly suggest that you start on some anti-depressants." I hesitated. Wasn't I supposed to be sad? He said there was sad and then there was SAD. I probably needed help to climb out of the hole I was in. 

The pills helped a bit. I suffered from anxiety for years, my old doctor had given me clonazapam when I felt the stomach grinding anxiety was more than I could bear - I couldn't function. My new doctor was a little less willing to provide me with the same pill. He gave me 1/2 a month dosage, to last a month or longer. I tried. He told me it was good to take a break now and then. 

In March, I swore at a lady in the school office. I went upstairs, crying, called the doctor's office to talk to my nurse. I asked for a referral to a therapist - and to someone who could prescribe psychotropic meds - to evaluate the dosages and meds I was taking. It took me 6 weeks to get an appointment to see someone. I was late. I was lost. I found her 10 minutes late. She tried to calm me. I was afraid, I was in a state where I usually flee - fly away home little birdie - fly away home! She saw something in me, in my behavior. I am ever so grateful. She stopped. She asked, "Has anyone ever suggested you might have Asperger's?" I stopped to consider. "Well, back when Ianthe was having trouble in school - must have been in the mid 90's - a psychiatrist told me he thought I had "social autism". Like the doctors during my transplant calling me "hyper-manic", I thought he was making up a syndrome to fit me." Social Autism - come on - what the hell was that?! 

Oh. In 1994, Asperger's was added to the DSM-VI. It was new to the psychiatric community. They didn't know much about it. I was SO Close to a diagnosis that could have saved my children. 

Survivor's guilt. It is a killer. It eats away at your soul. Why me. Why not her? Why him? Why not me?

A day before my Transplant - my 30th Birthday
A few weeks after I started producing WBC - with my "kids"

A side note. I recently spoke with my old doctor. Before I let him go, I mentioned that I had been diagnosed with Asperger's last year. He laughed, "I could have told you that - had we known about it back then! Wait till I tell the Hammer tomorrow!" /smile