Category Archives: optimism

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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NEW CANE (an aid for Ocular Myasthenia Gravis)

I shopped online for a cane to help me deal with the double vision and altered depth perception that I experience as a symptom of Myasthenia Gravis (MG). I was thrilled to find a metallic purple one. PURPLE CANE, PURPLE CANE! When told my husband about my find, he said “Didn’t Prince use that for the title of a song?”.  Now I cannot get the tune out of my head when I refer to the cane. But I will try, so that I can move on with this article.

Here is a reminder: The nickname for MG is Snowflake Disease. This is because symptoms vary from person to person. Symptoms can also change quickly within the same person. If you or the person that you care for has this disease, you may find yourself nodding with recognition of my experience. Perhaps your journey with MG is different than mine. My purpose in writing these articles is to help fellow snowflakes cope with challenges.

IMG_7755 (2)

The above photo shows what I experience as I approach a single step or curb.  I have been coping by tapping the back of my heel to the structure to determine where it is. One day I had the thought of how handy it would be to tap with a stick. Then I burst out laughing. They call that a cane! I was not inventing a new contraption. My neuro opthamologist absolutely agreed with the cane decision. He said, “The last thing you need is a fall”.

The medical term for double vision is diplopia. Diplopia and ptosis (drooping eyelids) are often the early signs of Myasthenia Gravis.  This was my situation for two years before my other muscles were effected.  I experience multiple vision. I see several images rather than simply double. Usually my multiple images are vertical (side by side). Sometimes they are horizontal (on top of each other). When this happens together my brain gets so jumbled. Our eyes are simply the camera lens. Vision happens in our brains. The jumbling causes anxiety. I have learned that daily meditation, mindfulness, and other relaxation habits can help ward off the anxiety caused by the visual disturbance. I need to do this on a regular basis, rather than wait for the anxiety to arrive.

My eye Doc is wise. He schedules his MG patients for late afternoons and early evenings. Double vision is worse after using one’s eyes for a while. MG vision problems are least apparent early in the day. May I suggest that patients find a neuro opthamologist if they have MG. This is a specialist with experience in treating this rare disease.

This impairment interferes with socialization. During a recent visit with friends, three people on a sofa suddenly became six people on a sofa. Rather than talking about my illness, I try to compensate. It becomes difficult to know where to look. I find myself feeling embarrassed and inferior. I am learning that when I do share my experience, I find that most people understand. Some do not, but that is about them and not about me.

I believe my new amazing purple cane will boost my confidence.  When I loose my depth perception, I will tap my beautiful purple stick, rather than turning back in terror and feeling embarrassed.

I am so fortunate that my double vision begins at four feet and further. I am able to write, use digital devices, read, and make art. I have recently started to have some close up diplopia. Closing my eyes for a while helps. Closing one eye or wearing a patch always helps. My Doc feels confident that he will be able to treat this with added prisms in my glasses if it progresses.

In the mean time, I am joyfully and gratefully bopping around with my purple cane. By the way, yes, I do have that Prince song amidst my music.

 

 

OPTIMISM OR DENIAL?

FullSizeRender (2)I have worn the rose colored glasses throughout my life. My childhood role in the family deemed the glasses as necessary.  I flashed that smile and said, “I can do this”.  Most of the time I could.  I grew into a multitasking adult who was always fine.  I pushed through tasks when I was tired or ill.  I did not accept limits.

For the past two years, I have been struggling with the chronic illness, Myasthenia Gravis.  My pattern was to use my optimistic coping skills to deal with my MG.  During the first year of this illness, I made the mistake of exerting myself whenever I felt the least amount of increased strength.  This did not work.  My illness and weakness increased with exercise.  My neurologist said, “Exertion will make you sicker and rest will make you stronger”.  During a ten day stay in ICU, I told my doctor that I was “O.K.”  He told me to stop lying to him because we both knew that I was not “O.K.”.  He pointed out that optimism is a good approach to many parts of life, but not this illness.  I learned so much during the conversation that pursued.

During this second year of this illness, I am learning how to be realistic without being pessimistic.  I have learned how to break my minimal activities into small parts.  I move slowly, for the first time in my life.  I have learned plan to rest completely the day before and after an appointment.  I say “no” sometimes.  I can ask for help.

I continue to wear the rose colored glasses quite a bit.  Things are not going as I had planned, but the glasses now help me see the way things are.  The glasses help me see that I do not have to be a productivity number.  The glasses help me not feel guilty when I can see that some friends want and expect me to be the way I once was.  The glasses help me choose people and experiences that fill me up rather than drain me.

I am learning how to be honest about my weakness and limits.  At the same time I feel happy most of the time.  With a few changes in technique,  I can make art.  I hear and enjoy music.  I meditate.  In spite of double vision, I read.  Digital devices  help me increase my font. Prisms change double and triple images to a single image.  I have a  big TV and I like movies.  It is difficult for me to speak and for others to understand me.  No, I don’t like my speech limits, but when I put the rose colored glasses on, I feel so grateful to be living in the world of social media.  I have decided to keep the rosy glasses nearby at all times.