His genetic story was already written.

A couple of years ago, when I was generating ideas for stories for an assignment (shout out to cohort 22),  I would go to my local antique store for inspiration. I was instantly  drawn to a Pyrex Baster and bought it.  A story very loosely forming in head but not fully realized.  I have been carrying it around with me for the last two years, until I unpacked and knew immediately how I was going to use it.

Six months after my husband and I married in an abrupt ceremony in 1998. We were back in the US from Germany, where my husband's family was. He was in the US Army, and we were 'home' for Christmas. One evening, his father sat us down in the kitchen and explained to us that my husband's mother had Huntington's Disease.  The reason for telling us this, then, they thought I could be pregnant - why else would we have done something so foolish?

I will probably never get over the fear in my husbands eyes that night as he left the room, leaving me standing there confused, lost and scared.  I had never heard of Huntington's Disease. I did not know it was an incurable brain disease, it was fatal and that people who have the mutation have a significantly reduced life span with their quality of life rapidly declining often starting in the prime of their lives.  Any child born to someone with the HD mutation, as my husband was, has a 50/50 chance of inheriting it, and so would any children they had (if they had the gene).

Several years later we would be sitting in a waiting room watching the clock tick  as we waited for the result of his genetic fate. Distractedly I looked at magazines and the images on the wall, all I could see were babies and happy smiling families. When we were called into the office, we sat down directly from a large window, staring out onto a sunny beautiful day full of light.  Looking at both of us, the Dr opened the envelope and asked my husband "Do you really want to know?". My world went black. My husband vowed that we were never having children, he had the gene that causes Huntington's Disease.

(if you want to find out about our journey you can see it here- Do You Really Want to Know?)

*It has a happy-ish ending-I make this sound really dire, and it was, part of me crumpled that day and I put the thought of children in box, locked away- I started crying, and my husband asked for a job! Literally asked for a job in a lab researching HD. We then went out that night to an extraordinary meal and got very drunk. When the waiter asked us what were were celebrating and we told him. We were comped very expensive champagne.

**In 2005 there would be an opportunity to do a process called IVF/PGD where they could test each fertilized eggs at an 8 cell stage for the mutation. We were the first couple in Canada to do it for a genetic disease! There were two gene negative embryos and they implanted both. Yay for science! My husband who is only now beginning to show telltale symptoms,  still researches HD, something that he is committed to until he gets too sick to work.

The Purple Shore Crab.

For my MFA we were asked to write an auto-ethnography. A piece of writing that situates oneself within the context of our area of interest. I have been talking a lot of how the BODY REMEMBERS and using that idea I explored more of my own personal stories and how they are apart of me. I wrote about memories that I had from the time I was 4yrs old until I was about 15. Some are sweet nostalgic stories and others verge on troubling and uncomfortable. As I wrote them, I relived them. This writing was very hard on my physically. It cause my heart rate to increase, I got anxious and sweaty. I would have to go for walks to release energy and process the emotions that were arising. It became clear that I needed to get the stories off of the page and into the world. In a way the stories have become alive to me. Each one is a few paragraphs long, ending with a food pairing. In almost all of them I had a visceral food memory and at times I could taste and smell the food I was describing even if I hadn’t eaten it in years.

The Purple Shore Crab 2020. Fabric, Drift Wood, Twine 36”x48” My dad had a boat, he loved to go fishing. Originally from Saskatchewan, he was a prairie boy with a hankering for travel and the open water. When I was 4 or 5 he would wake me up early …

The Purple Shore Crab 2020.
Fabric, Drift Wood, Twine
36”x48”

My dad had a boat, he loved to go fishing. Originally from Saskatchewan, he was a prairie boy with a hankering for travel and the open water. When I was 4 or 5 he would wake me up early to go fishing with him, before it was even light out. We lived in Maple Ridge just outside of Vancouver but still an hour plus from marinas that he could launch his boat from- Ever so faint is the memory- those were in Port Moody. I am still in love with jagged coastlines, rocky coves and seaweed slicked stones. After one of our trips, back in our yard, my dad was cleaning out his boat and flushing the outboard motor, and a wee little purple crab came tumbling off. I tried to save it and keep it as a pet.
(Food Pairing- Fish and Chips)

I started off with a fond memory, that brings a little sadness to me, as my father passed away several years ago. After all the writing I was a bit worn out and I needed a simple entry point. I created it on a massive loom that I built using a furniture pallet, nails, hammer and a saw- it was so big at first it did not fit into my studio. The pink and blue fabrics are ones that my father bought me. We share the same maker gene so whenever he saw fabrics for sale in his local thrift store he would buy them. I’ve been holding on to them for years. The flannel I bought at a thrift store local to me and is similar to something he would have worn, being a heavy duty mechanic and a constant tinkerer. I have written the story of the crab onto the fibres that I have woven and created into the tapestry. I used my whole body to make this, the loom stands as tall as me. I would get up and down off the ground, walk and weave back and forth. I sweated, had body aches, headaches and gave myself blisters!

As I continue with my MFA, I really want to incorporate this process- writing, researching, building, weaving, sewing etc into my thesis. I see it evolving and growing.

Detail

Detail