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by Marcie Vallette

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Life with Parkinson's

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LIFE AS A CAREGIVER

So I slept

My husband is now in a fairly advanced stage of Parkinson’s Disease and the journey has been rough. My emotional experiences have ranged from deep despair, to being cosmically connected and loving; at home with all beings. I have felt deeply and homicidally jealous of friends going on trips and enjoying their lives. Then on the same day, I could laugh uproariously at a shared joke with my husband and cherish my time with him. Many times I have felt I was also going to die from the unrelenting stress of this disease day after day, year after year.

Even the simplest of tasks are difficult and slowly accomplished. There were many nights when I had no sleep. I have spent hours in the ER with him after he fell. I didn’t want to face another medical bill. Or heating bifalling apartll or any bill. Going to the mailbox and seeing the bills literally made me gasp for breath and my heart hurt.

Parkinson’s is more than just a movement disorder. It can effect behavior and personality in some people. Not only can your loved one not move well, but they may be hallucinating, up all night, and making bad judgments that affect your future. They may be verbally cruel, and may hide important things. And then there’s the falling falling falling, day after day, night after night.

Sooner or later most of us will have problems that seem to defeat us, changing what we assumed was the course of our life, and challenging our idea that we are in control of anything. It is my intent to crwhile I slepteate a graphic novel about care giving. This will be for CAREGIVERS ONLY. That may even be the title. But I vow to tell the truth about my experience of care giving, because it is a lonely and truly crushing existence at times. I want you all to know you are not alone in this.

The graphics above, with the crows and blood, depict the time when I went to bed and did not get up for 2 weeks. The medical bills were piling up, my husband was clearly not ok, he was not himself, at all, after his brain surgery. I quit my job to stay home and take care of him. I had no choice. But instead of taking care of him, I went to bed. Yep. I did it. I felt like forces were holding me down. It was ok, and I was not scared. My husband could still more or less walk and talk and do stuff at that time but he was being bizarre. I left him alone to fend for himself downstairs while I stayed between dreaming and waking in the upstairs bedroom. Yep. For about two weeks.

Here are some pages and ideas I've started on. If you know anyone who might be interested please share.Toilet

Here’s the toilet bowl drawing, where, during a phase of his illness, he was making bad judgments and becoming a danger to himself and to my own safety. I used to yell and scream. A lot. And I used to say “You want me to go down into the toilet with you?”

 

 

You worry too much

About the paper-doll (Marcie-Doll) - I felt keenly that my own identity was in flux, and that my own identity in the world really had absolutely nothing to do with me.

Am I really a nurse, an artist, a caregiver, a seeker? The feedback I was getting back from the world did not match what I saw in myself. I felt shock waves sometimes running through me when people spoke to me, upon hearing the underlying messages of their definitions of who I was.

When I did finally get out of bed on a regular schedule, I would look at my clothes in the morning and dress myself, knowing I had to put a costume together that would be judged. It would matter. We are visual apes. I would get dressed and the critiques of my appearance made their way into my consciousness. Some of them were memories of what people had said to me in the past, some were said aloud that day, and some are internalized and coming from my own mind!

What
To wear

About the brain scan drawing: My husband had had an fMRI years before, to rule out a stroke. I remembered looking at his brain scans and feeling afraid and vulnerable. Was his essence really located his brain? Would this change? Now, these years later, some days I felt like I was actually crazy and maybe I should get an fMRI to see if there was something wrong physiologically. It was at this time that I applied for and qualified to be one of the subjects in a brain study on how experienced meditators process pain. I have had a strong meditation practice for years. When I sit with my teacher, Shinzen, and the sangha, and just sit, opening my senses, it is one of the most true and honest experiences. It is like coming home, or like being alone in nature, in a way. But that is a whole other story.

So, I got a free fMRI, and the neuro-scientists sent me pictures of my own brain as a reward for doing it. They found nothing unusual about my brain, or my responses, I was told. I felt good and I felt bad. So there was nothing wrong with my brain. Good. But, then again, how could they not see that my brain was special? What could account for my own strangeness?

My own brain

Marcie Vallette

mvallette@hotmail.com