Polly's pages (aka 'Donna Williams')

Ever the arty Autie

Autism, DID and Cancer – Biopsy Day


Autism, DID and Cancer My biopsies for breast cancer were yesterday. Chris had taken the day off the day before but turned out that was only the consultation. So here I was going to the biopsies with my good pal, Denise, who, like me, has Dissociative Identity Disorder (DID). Given her dozen alters and my 13, we brought quite a few people along to the waiting room of the Radiology Department at the hospital. And then there were the visual and verbal agnosias of my autism to navigate; the meaning deafness, meaning blindness and face blindness. All becomes rather Alice in Wonderland in that context.

Among my 13 alters they were all coming to terms with my cancer after the diagnosis.

Willie, the pragmatic, logical, doctor, psychologist, researcher and all round walking encyclopedia of our DID system, had devoured all the language via Pubmed and Wikipedia so she understood all the key words and felt prepared for the procedures ahead.

Da, our comedian, Houdini and unstoppable entrepreneur (she sees Richard Branson as a role model) had made jokes about jumping into the microwave to do our own radiation and was casual enough about the appointment to have cooked bread whilst waiting for our lift, bread due out of the oven 5 minutes after we were meant to leave. Having identified as a gay male, she had no problem with ideas of mastectomy. ‘Wop the bloody things off and be done with it’, had become her mantra.

Then our system’s girly girl, Carol would suddenly break through in tears that people could be cutting her breasts off. She was afraid of being ugly but I’ve reassured her that if you are beautiful inside you don’t need breasts, that people need to look at the breasts of those who haven’t developed a shiny soul because there’s nothing else to look at and she’s shiny and would be as wonderful without breasts as she would be with them.

Marnie, our rather punk anarchist, had already picked our our possible mastectomy tattoo and was empowered by having the job of bluntly getting rid of those saying ridiculous twaddle or being an energy drain.

Addie, the system’s quiet, gentle social worker and nurse, has started making craft bears to sew in the waiting room.

Anne, our graceful, gentle artist, has gone quite dormant, only coming out to play piano occasionally. Esby and Ning (who used to be a cat) appeared to snuggle for a while. Opie (our bear) has been dormant.

Rose appeared, mourning the future loss of body parts (and energy) in this upcoming journey and seized the opportunity for sex whilst she could.

Katrina reminded us that life is about the soul, the people we move and alter along the way, the investments we make in the souls of others that mean we live on in them just as they live within us so we are never alone with or without the body, in life, in death or the journey between the two.

Polly was coming to terms with cancer as a 5 year old might, talking openly about having to burn the body if the cancer eats it all because it will be rubbish then and we’ll have to get a new body and what she’d like to wear when the body is going into the burner (cremation). So for her it was going to be ok because we could get a new body anyway. She had other ideas too, that Willie would handle the pain and operations so she’d be ok, and that she would become Harriet Bottomly so nothing could happen to HER (that’s DID for you, and we’ll watch out we don’t end up with a new alter called Harriet!).

Then Foosh (who used to be our rabbit) has done us so much good doing what Foosh does and loves best… sleeping.

Da had done the car ride to the hospital, joking about but once we were inside, Polly was there and silently put her head onto Denise’s shoulder. Called in by the nurse, I was there and sought to keep up with her instructions and explanations of the procedure. These were all tumbling in my meaning deaf brain (I’m only 30% meaning deaf but this increases depending on how many threads of information are given). So I was mouthing her words and putting gestural signing to them to understand it all kinesthetically. In the meantime I had that ‘deer in the headlights’ look which happens with meaning deafness. ‘I can see you’re scared’, said the nurse. ‘No’, I replied, losing the deer in the headlights look, ‘I’m just trying to track what you’re saying’.

Next thing I was in a cubicle wearing a gown tied up at the front, next laying on a bed in another cubicle staring at a Monet print of water lilies, next I was asleep. The nurse arrived, my team was ready. Next thing I was in the ultrasound room for my guided biopsies. I looked at the nurse, unsure for a moment if she’d switched with someone else but her voice told me she was the same person (I’m faceblind).

I noticed my (tinted) glasses were off as the room was in bits (I have Simultagnosia). I asked if they’d taken them off me, but no, one of me had taken them off myself. They offered them back to me and the room glued back together. They said that when they start the procedure the lights would go down. ‘How?’, I asked, thinking the machine would drain the electricity of the lights causing them to go down. ‘Oh, we turn them off’ said the sonographer.

Next the operating table was raised, the lights were turned off. Inside, Polly asked if we were going to the movies. ‘Yes’, I told her. Da spoke, ‘this is going to be a scary movie and a good movie all in one, isn’t it?’. ‘Yes’, said the nurse, ‘guess it is like being at the movies’.

The sonographer scanned my armpit, looking again to be sure I had no cancer there. They couldn’t find any there.

A man arrived, dressed in blue. He started to instruct the sonographer and nurse, had instruments in his hands, was drawing on my breasts as the sonographer located the cancer on the screen. ‘Is he a doctor?’, I asked. ‘Yes’, said the nurse. ‘What’s your name?’, Willie asked him, after all, he was anesthetizing my breast and about to make incisions into it. He told us and someone repeated his name out loud. ‘I’m faceblind’, I explained, if I don’t get your name I’ll keep thinking I have all these different doctors.

The sonographer had the cancer on the screen. ‘What’s that?’ I asked pointing at the waves under the cancer. ‘That’s your muscle’, she said. Then she pointed out the bone, ‘and that’s your breast bone’. The bone looked around 1 cm from the cancer. I felt relieved.

The biospy hurt and suddenly I experienced a flashback of falling over in the school playground at age 6. I had grazed my knee with gravel under the skin. It was bleeding. ‘We’ve hurt ourself’, said Polly inside, we hurt our knee, it has gravel’. ‘Yes’, I assured her inside, ‘and we will fall over one more time, but its just a sore knee and we’ll clean up the gravel’.

Polly noticed the ceiling was so close to us so we must be in a very short room with very short people. Da asked ‘are we in a short room or did you put the table up higher?’. ‘Yes’, said the doctor, we raised the table. ‘Oh’, said Da, I thought I was in a room of very short people.

The doctor asked the nurse for a ‘short black’. I was perplexed. ‘Does he need a coffee?’, I asked the nurse. The medical team chuckled. No, a short black is a type of biopsy instrument, not a coffee.

Then they took the second biopsy. Again, we had a flashback of falling over, grazing our knee, the dismay at having gravel under our skin. ‘Yes’, I said gently inside to Polly, ‘we had to fall over twice, now we can fix up the grazed knee’.

We had to turn around to the other side of the operating table but couldn’t work out how. Instead we just froze unable to co-ordinate the verbal instruction with the body. ‘I can’t work it out’, I said, ‘can you help?’. They helped get my body started and somehow my brain caught on and followed through with the movement they’d started. They aspirated the cyst in the right breast. Well at least we now knew that only one breast had cancer.

The doctor showed us the biopsy in a jar, two 3cm fleshy threads taken out of my left breast.

Finally, we were dressed and wandering our way back to the waiting room. But we were lost in the corridors. ‘Help, please’, I said, disoriented, to a doctor at a desk in a small open doored office, ‘I’m lost’. The doctor got up and pointed to an exit sign. I headed there but she caught me up and navigated me the way back to the waiting room. Denise (and her own alters) were waiting. ‘Got your pictures’, she said, holding up my scans. And we left, with the results of type, staging, grading and treatment going to be next week.

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.

I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.

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