Tag Archives: hope

Snowflakes, Catch Them When You Can ( Myasthenia Gravis & art)

Myasthenia Gravis is nicknamed the “snowflake disease” because snowflakes are different from one another.  MG patients are  also different from one another.  All muscle groups can be effected by this neuromuscular disease.  The disease can vary, like snowflakes, within the same person from day to day.  Sometimes changes happen from minute to minute for a snowflake patient.

I am sitting in a room with some of my watercolor paintings, framed and hanging on my wall.  These were painted prior to five years ago.  This is when I began noticing my symptoms of Myasthenia Gravis.  My double vision began to distort what I saw.  I could not grip the paint brush.   I dropped it.  This was a profound loss.  I did not understand what was happening to me.   With diagnosis, treatment, and a support group, I have learned how to manage my illness.  It is frustrating to find that I could do something an hour ago, but cannot do it now.   I am learning that I might be able to do it later, after the muscles have rested.

When I lost my ability to create with watercolors,  I explored different mediums.  I found that I also loved colored pencils.  I began catching new snow flakes.  More recently,  I discovered needle felting.  Creating with wool is new to me and I love it.  Because it involves repetitive motion, I need to limit my time with needle felting or my hand muscles weaken.  Art experiences, even when brief, light up my life.  My past watercolors were detailed.  When I lost my ability to see clearly or to control my paintbrush, I experimented with abstracts.  I surprised myself by selling the original and a print of this abstract at JeriAielloartstore.etsy.com. IMG_3551 (2)I do not know if I would have dabbled in abstracts if I were not pushed in this direction.

After having spent several years,  not being able to hold a paintbrush to try detailed watercolors, I find that I am currently able to do it.  When I found that I could do this, a part of me became afraid. What if I can’t continue to do this?  What if I experience this joy and loose it again?  I do not know.  I imagine that I will grieve the loss again.  For now I am grabbing onto my watercolor snowflake.FullSizeRender (2)This is a current detailed watercolor.

I have been a  slow learner, but my illness has taught me to live for the day. I am more present and am able to be in the moment.  When I say, “I can do this” or “I cannot do this”,  it is not a concrete statement. I change frequently.   I would like things to be predictable, but I am not able to predict.  All that any of us have with certainty is right now. My illness keeps me aware of this.

I continue to hear from other MG patients. These fellow snowflakes tell me that they are helped and encouraged by my experiences.  I know that not everyone reading this is an art enthusiast. I also know that  other MG snowflakes have experienced losses.  Perhaps this will be an inspiration to look for alternatives for other particular losses.  For today, I am a snowflake who can paint with watercolors.

 

 

 






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HOPE

IMG_3943 (2)Hope in itself is healing.  I left my Doctor’s appointment with a smile on my face.  I almost had a spring to my step. My doctor’s parting words to me were “I will help you.”

These past two years I have learned about acceptance.  I have found ways to live within limits.  I have given up many activities.  I have practiced doing things differently.  Muscles throughout my body are weakened by Myasthenia Gravis.  Hopelessness moved in right next to acceptance.

Today I am beginning a new medication regime. My physician’s hope is contagious.  I am hopeful.