Doing Art Differently with Myasthenia Gravis

IMG_0587 (2)My neurologist said,  “I wish that you could talk with all of my patients. Most of them give up and insist that they cannot do anything.”  He said this in response to my conversation about needing to be productive and contributing, in spite of physical limits. Well, I am not able to speak to his patients, but perhaps someone will read this.   My words of wisdom are: Find something that you love to do that has nothing to do with your career and do it.  It is important that this be something that you can carry with you into old age.  If you are not in the habit of having fun and caring for yourself, you will probably not begin to do so as an older adult.

My passion is art.  It has added balance and meaning to all stages of my life. My illness is Myasthenia Gravis. This literally  means grave muscle weakness.  MG is a chronic autoimmune neurological disease that is effecting many of my muscle groups.  My hands  and my eyes are effected.  My breathing, speech, and movement are impaired.

I recently spent ten days in ICU due to breathing impairment.  I received  IVIG treatments during this stay.  I brought beading supplies along.  My eyelids droop.  I have double/triple vision. I am able to create by touching and feeling the beads. A nurse exclaimed that she had been watching me through the ICU window.  She said,” You never looked at your beads while you made this necklace.”  I cannot do everything that I once did with art, but this is something  that I can do.  So I do!  This is the necklace that I worked on in ICU.  It carries a special meaning of gratitude for my life.FullSizeRender (2)For years, I used watercolors as my favorite medium.  I am not able to steady my hand and grip the brush to do what I like to do with watercolors. I can play with abstracts.  I have fallen in love with pencils. I make some exciting art with pencils.  I find that I can rest my arm on a surface and use pencils in a way that I cannot use other mediums. I go to a meditative state while rendering art.  I feel joy.  Sometimes I laugh when I think of what I might create in the future by combining my triple vision and fumbling hands.  The peppers are my beloved watercolor. Santa is rendered with colored pencil, my newer love.

It is not easy to just do art differently.  Sometimes general weakness prevents it.  I have had to give up some mediums completely because of my lung muscle weakness.  I cannot keep paint toxins in my environment.  I have experienced disappointment when dropping supplies prevents me from pursuing a project. When I cannot find alternatives, I grieve my losses. Even though it’s not easy, I can often find alternative ways to render art.

Another art adventure that has changed is the way that I display items.  I used to participate in art shows and local PowWows.  I do not have strength or stamina to do this anymore, but I found Etsy.  I can work on my shop in my jammies with my oxygen tank.  I can stop when fatigued.  Another part of me that I have lost due to lung weakness is my speech.  On Etsy,  I communicate online.  It is a place where I talk about art, not illness.  I love my little Etsy shop.  My shop helps fill my  need to be a productive contributor. (JeriAielloartstore on Etsy, that’s me.)

 

 

 

 

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