parkinsons

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Mama is Preparing to Leave this World

Published September 12, 2012 by megdedwards

Every time I return from Toronto I know that these trips will be over soon.

After my Dad and his wife died I never went back to Victoria. The home, the chairs sitting in the sun, the desk with the photos, the box of tea, the couch where I crashed, was gone.

Those very things exist somewhere but they are gone to me.  What made them mine is gone.

I have lived in Cabbagetown at my mom’s apartment so many times this year it feels like my second home.

I fall into the dusty feather couch at night in pure exhaustion and I sleep deeply with the city noises on the periphery; fighting raccoons rummaging in the garbage cans outside my window, men yelling at their partners, the incredibly dull, loud talking neighbors who enjoy their balcony so much.

Every visit things change perceptibly. Mom can no longer walk up the stairs by herself. She no longer makes tea or feeds her cat. The sweet caregivers have become her arms and legs. Our conversations are getting shorter and shorter. She is out of breath, exhausted; often we sit in silence with me holding her hand. Then she might rouse herself to say something random to me, such as, “Did you get through a press agent to attend this event?”

When I am feeling claustrophobic I head out to Parliament Street. It is a city amalgam of rich and poor. I can nod at homeless who rave just like my sister, I can smile at gay guys with their adored dogs, and I can hit my favorite spots. There is a small warmly lit greasy spoon run by a collection of older Asian men and women where classical music plays constantly and everyone is treated with respect and courtesy. Their good reliable food and cheap prices draw in some of the poorest of the neighborhood and each customer is treated like a good person.

There are cool second hand stores, a run-down library and further north on Parliament is a small area full of Indian stores that breathe their exotic spices and foods into my receiving sensory system. In the early morning the streets have that dusty busy feeling of an Indian city, so many people moving together in a hustle of humanity. Ground coffee, spices, the dust from construction, and the scents of perfume as people head to the buses to get to work are an orchestral sensory experience.

It has already occurred to me that this place will not be mine when my Mom dies. There will be no reason to go there and no reason to be there. So the place is seeping into my body.  As the real world diminishes for my Mom, it is increasing for me. I am a receptor of smells, sounds and sights that she no longer needs, her mind a rich enough tapestry.

My Mom is in her head, dreaming and thinking. Sometime she is worried about the motherly duties, and the thought of Christmas puts a frown on her face. How will she have the energy to organize it all!  We can’t insist that she no longer has to do anything, she does not pay attention. Years of looking after our desires are a habit that she cannot let go.

Conversations with my mom have become surreal and poetic, mind blowing. For example, “This book shelf is what it looks like, but not what it seems”. I repeat that back to her to see if that is what she said. She nods, “Yes, because there is another book shelf like this in another identical house in Toronto, and if I move a book here it will move there, and (pause) that would be magic”.  A look of disapproval and disbelief at the word, magic.

She looks towards a window, where for me nothing stands out at all. She smiles, “Do you see that man out there with wings; do you see the small children?”  She acknowledges that we cannot see what she is seeing, but her apparitions are so strong and detailed she cannot quite question their reality.

She says, “I can see Kate smiling and laughing and laughing” and she knows that it is something conjured by her mind and follows with, “Well, that is a nice image for me”.

And the odd images: “Look at the rats all jumping ship, with their feet scurrying as rat’s feet do when they run”.

Other times though she will say something that shows that she was paying attention when that last person was visiting. She will have noticed their health and habits and have a critical remark about one of their foibles.

And every day in my last visit she talked about dying. “Now please don’t get upset but we need you and Rhys and the others, to talk about my death “.  When I tell her that Liz will be visiting in a week she says, “I don’t know if I will make it, but I don’t know if that matters.”

I look at my Mom, lie beside her. Her body is smaller, her skin hangs from her bones, but her stomach stays round and firm, holding all her pain and seeming to symbolize the pain and love of life. The stomach, the womb, all desire:  the center of creation and destruction. Her desires from that center both created her marriage and destroyed it.  Everything is appetite.

And now her desires abate and her appetite for life is less. I gently press the frown on her forehead, but it is permanent. Her eyes are unseeing, half lidded, and skeptical. If I tell her that I don’t see what she sees, she says, “But how do I prove that, I just have to believe that.  You don’t see those boys, that large woman on the corner of the couch?”

I lie on the bed beside her; the bedroom is stuffy and smells permanently of urine. I rest my head on her pillows and hold her hand.  Her eyes are closed and she sleeps deeply for a moment, her breath becoming urgent and painful, deep and racking.

Then she opens a green eye and says to me, “Well, it was odd getting into bed with my husband and his girlfriend”.  I don’t say anything, what is there to say? Then she says after a long pause, “And where are they putting them, in the attic? And are they stacking them up”?

But amidst this random dream talk she is trying to prepare in her organized way, “How much time is left, what am I supposed to do?” and more poetically, “I feel as if I have just finished a book”.

I respond sympathetically, knowing that that feeling when something ends before you want it to,  I say, “And you don’t have another good book to read” and she says, “ Oh no, I have lots”.

On the day of her birthday, in which I am about to throw a small tea party, she rises from the couch under her own strength, which is unusual, and says, standing as tall as she can, “I am not sure if I am up to this, I am much weaker than I used to be” and I realize that she thinks we are going on a plane. Pretty much every day she thinks she is going someplace, and I guess she is.

Seeing her standing on her own, I see her through her own eyes. She is young again and ready for any adventure. I remember watching her prepare herself when I was a teenager. Putting on her makeup, picking jewelry, brushing her hair.

Her bags packed, neatly organized, a skirt that both matches her jacket and her pants so that she can pack lightly but have many options, her ticket and passport neatly in an outside pocket of her purse, which does not have old gum wrappers in it or crumbs like mine.

She has brushed her long soft blond hair and put on red lipstick. I am sitting in her bedroom watching her prepare.

Writing about Writing

Published February 1, 2012 by megdedwards

  I wrote this post three years ago. Now I live without my Mom’s voice and I am doing what I promised. I am working on a big project, writing a novel and my mind is playing on a big canvas.

My blog posts arrive quietly in my mind while I am cleaning, sorting or putzing around.

Thoughts develop, themes appear, and I want to talk about them. Sometimes I need to just sit quietly for a while and then my ideas arrive and start bubbling.

I thought I was going to write about love yesterday, but today I find myself writing about writing.

Writing is something that my Poor Mom misses.  Her thoughts bubble about and are delicious, metaphoric and deeply insightful, but she can’t write them down anymore.

I call her My Poor Mom now that Parkinson’s has taken over her life and fogged her hard working mind with apparitions and paralysis. All her life she was a woman with ideas and creative outlets; now she struggles to have a conversation.

We talk about blogging and writing a lot and she remembers her days when she wrote for an internet writing group called NerdNosh.   She wrote episodic memoirs of her life with the caveat that it would be good for her family to have those stories written down.  This was a very happy time for her; she had her own writing room where she would work on her albums and write her Nerdnosh remembrances.

This was as close to being an artist as my Mom got, and believe me, she could have been an artist. During one of our recent poetic, speculative and superbly honest conversations I told my Mom that she could have been a novelist (or painter or filmmaker).  Even now, her imagination and her ability to analyze her imagination are incredible.  When she woke from her weeks of semi-consciousness after her heart operation she told us all about the novels she had been writing while she was resting.

Recently her mind has been creating stories to accompany the hallucinations that crowd into her life. She told me that it is tiring living in the middle of a film set as people are always moving things and putting labels on things.  Even after I confirmed that this was just her own personal apparitions, she went on to tell me that the theme of the film was quite interesting, as if she was writing a film review. “It is all about the dark spaces of nothingness between the frames” she said. I said, “Mom, you are blowing my mind”, and she laughed.

And we went on to talk about why women find it so hard to take themselves seriously as writers or artists.  She told me that her life as she was living it right now would be a good premise for a novel. “I’d make an interesting character”, she said.  As a busy mom she told stories, painted, drew, and played the piano. She surrounded her children with creativity, worked as a journalist, an administrator and an agent. But she never created a story that was parallel and separate from her.

We wondered together what type of personality it took to sacrifice time and energy to a novel. We know that men and women do it all the time, even women with children, (which is truly remarkable) but we wondered what it is that drives them to produce purely fictional material.

What stops so many of us from grasping the full title, or aiming for the highest achievement? Can I create more than patches on a quilt of my life stories, or ‘mere light nothings’ as my Mom calls it? I feel that being a fiction writer may require a bigger ego than I have, or possibly, more mental discipline and stamina. But as I near the age of fifty I know that I not only have a perfectly good ego, but stamina and discipline.

I am fascinated by women’s writing and why they write and how they write. I am interested in the entire debate of a ‘woman’s voice’ and whether you can say there is one.  An old text book on Feminist Literary Theory, my conversations with my lapsed writer mom, and my blog are all leading me irrevocably down a path.

In respect of my Mom, and with love to my Mom, I feel that I have to take the creative process one step further.  Women are often content to create as we go; our story telling, our art work, our sewing and knitting adorn our lives and others, but are washed away in the current of life.

Maybe that is best. I don’t know. I don’t think that ‘fine art’ is better than craft; it is just defined and valued that way. But sometimes we hold back from creating something big because of a lack of confidence, and that is not a good reason.

In our latest conversation I told Mom I would attempt to take writing to the next level.  My mom has always said you are not a writer unless you have a manuscript hiding at the bottom of your files.  I have those, a pile of them, and they are very old and dusty or in ‘word’ files that can no longer be opened by any proper computer.

I told her I would try. It is a big commitment, promising a dying woman that you will write stories for her sake, but my only saving grace is that Mom may forget what I said.

So I have a project I am handing myself,  I am going to take all my lost children, my unfinished stories, and work on them with the same upbeat, sensible wordsmith practicality I take to my journalism or public ‘journaling’ (blog).  No self-loathing or recriminations, no high expectations or fear of failure, just a person who is happy to have her mind and fingers still working together.

And I better work quickly so my Mom has enough vigor to be able to criticize what I create; I don’t mind, I can take it.

My Mom and Parkinson’s

Published August 30, 2011 by megdedwards

Parkinsons

I sent a letter to my mom the other week, on some pretty note paper that I found at a garage sale, with a nice stamp. In it I wrote of my childhood and how I remember her as a blur of movement, laughter, and storytelling. She was high spirited in her domesticity: we had fantastic birthday parties and fun-filled summers and holidays. She was frugal and creative, loving but not suffocating, and always ready for the next adventure; new jobs, new relationships, and new places to live.

She sent the letter back to me the next week.  I found this to be a remarkable, if bizarre, feat, as she is suffering from advanced Parkinson’s.  Even though she is losing her mind to the progressive disease, she can still pull off a letter. And we all know that most people with all their faculties cannot manage to get a letter in the mail.

I know she enjoyed the letter, she told me it gave her much pleasure, and I think she sent it back so that I could enjoy it too.  Her note, which she wrote on the back of the envelope  in the small tight hand writing typical of Parkinson’s , started, “Darling – What a wonderful letter! Shall I keep it for an album or send it back to you to enjoy?”

She knows that she is no longer capable of making photo albums, an art form in her case, long before it became popular to ‘scrap book’.  She would have lovingly taped that letter in place, added a broad bar of color with a marker, and posted a few good shots of the kids and me.  But I think she is worried it will just get lost and that it is best in the hands of an organized mother like me.

She has at least 20 massive photo albums, each one a work of art, with her good eye for color and design and her journalist’s mind for keeping newspaper articles or cards from interesting theater shows.  The album that also contains the year of my birth, her fourth child, includes the front page of The Toronto Star announcing the first steps on the moon.  They are archival treasures even if you are not a family member.

I think she sent the letter back to me so that I would put it in my album. And I don’t keep up with the energy of my mom; by the third child I had a box of photos I couldn’t get through.  But I do try to keep up to her nutty level of energy. So I will keep that letter in my most recent album, strangely devoid of photos now that we have digital photography, and the note that she wrote on the envelope.

In a recent phone call she said, “I just smiled at a potted plant as if it was you,” and I laughed, because it was so absurd and funny. And she laughed too. But as I now know, the medication for Parkinson’s causes hallucinations and delusions.

The last time my older brother took her to the cottage she kept seeing crowds of people. She even approached the dock on her own, very slowly, hunched in pain with scoliosis and shuffling her feet in the Parkinsons’s style. When she got to the dock, she told me she approached a young boy but could not get his attention.

I am making myself cry as I write this, and Mom would appreciate that. I remember being somewhat embarrassed as a child by her rising emotions , her cracking voice or wobbling chin, if she made herself sad by telling us an emotional story.

She might not remember that now. She tells me that she is “losing her memory in great big chunks.” She feels she is unorganized and a bad cook so I remind her of all the wonderful meals she made, and her incredible organizational abilities that still make me feel inadequate.

The hallucinations are something my mom can handle; open to possibilities and experiences, she even wonders in the back of her scientific mind whether she saw ghosts at the cottage.  Delusions might be harder.  But my mom’s ability to see the world as an interesting experiment is helping us all.

On the back of the envelope in which she returned my loving letter of memories, she wrote,

“Peculiar world for me now: A Strange one. When I have a speedier pen or we’re on the phone I’ll tell you. But wait, Haven’t I already?”

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