Riv’s hand mid-spasm: there are nail marks in their hand from the fingers digging into their palm.

What is Dystonia?

Dystonia is a neuromuscular disorder that causes involuntary muscle spasms and contractions.

There are multiple types and variations of Dystonia that affect different areas of the body and have different causes.

I have Early-onset, Generalized Dystonia that is genetic.

Most of my body is affected, including my arms and hands, legs and feet, back and neck, and jaw and tongue.

I have had many therapies and surgeries over the years including 2 brain surgeries.

Most physical activities are difficult and/or painful.

From brushing my teeth or washing my hair, to playing the piano, or even sitting in the same place for too long: everything is exhausting because every movement activates Dystonia to some degree.

Covid, Isolation, and Mental Health

Like many disabled and chronically ill folks, I have lived much of my life in isolation, fighting tooth and nail for access to social and public spaces.

This has been our reality long before Covid ever became a household word.

However, over the last few years, we have been pushed further and further into isolation.

“If you don’t feel comfortable, just stay home”

It’s dehumanizing and lonely enough not being able to participate in cultural, social, and even family events.

Now, as of 2023, medical spaces have also adopted this philosophy.

The very places many of us can’t risk not going to have become dangerous themselves*

*(or more dangerous, as medical racism, transphobia, and fatphobia meant that medical spaces were already unsafe to many communities)

For me, I struggle more and more with each passing week to barely get by and function.

I struggle more and more to find a reason to keep going.

As awful as many of my symptoms are, nothing kicks (and keeps) me down quite like forced isolation.

One of the few things that does propel me forward is this:

I will not be silent about my suffering.

I will make art that reflects my pain.

My hope is that someone will be moved; that my art will somehow expand their understanding of and empathy towards Disabled people (especially those of us living in isolation).

The only “work” I have access to is art.

I want this second chapter of my life to be worth something.

I want to make an impact.

I hope my art accomplishes that.

Riv in 2022

How I Returned to Painting

Towards the end of 2021, I decided to read through Julia Cameron's book 'The Artist's Way'.

At the time, my art was contained to journals where I could sketch, scribble, and create without really taking up space.

I knew I wanted to feel more free with my creative expression, but had no idea what that might look like.

Fast forward to January 2022: the various exercises in 'The Artist's Way' had me itching to buy painting supplies.

I was so nervous the first time I laid out the canvas and paints but with a deep breath, I dove in.. and haven't stopped since!

Painting became a perfect outlet for my emotions; an accessible way to express myself as a disabled person with severe PTSD.

Many of my paintings reflect my intense emotions; they come from pain, anxiety, fury.. especially during those first few months of painting.

These days, my pieces range from wild and chaotic to serene and calming.

I use a number of different techniques and love trying out new ways of putting paint to canvas.

Painting utensils, 2023

  • 2018 Charcoal Sketch

  • Painting Process 2022

  • Close-up of 'Creamsicle' (2022)

  • Close-up of 'Stipple in Red' (2023)