My Journey with MG, Myasthenia Gravis

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By Caryl Loper

Everyone has a story. Each and every one of us has lived such a different journey.

We all can give a chronicled account of our life, a reflection of what we have encountered, how we have embraced those experiences and what we have learned.  If we merely view it in a simplistic manner, then we unknowingly get stuck in the story and never fully embrace what the journey is all about.

Here is my story, my narrative account:

This September it will be exactly 32 years since my first encounter with Myasthenia Gravis, MG.  I was awakened one morning to the most unusual world, a total shift in my visual reality.  I awoke one day with a major shift in my vision, a visual discrepancy that in a blink of an eye never changed. At first I thought I would literally go mad, as it was so arduous and intrusive to my life.  But, as life teaches us, we can choose to resist it and fight it, or go with the flow and accept it. I chose to accept it.

Helen Keller, one of my most admired and awe-inspiring authors, led me from a dark place to the light. Her spiritual engagement with life, her uplifting and inspiring attitude taught me so many lessons about embracing the unknown, moving beyond any circumstance with strength and perseverance.  We can choose to sit in darkness, or we can move to the light and embrace those shadows. I chose the light.

From there, I noticed many symptoms that would move in and out of my daily life like the ebb and flow of the ocean. I was affected by many outside changes to my body from my eye drooping, severe and unrelenting fatigue, chronic muscle weakness, difficulty standing and walking, loss of balance, difficulty swallowing and breathing, choking in my sleep, memory and cognitive issues and more. With the initial onset of these symptoms I was diagnosed with Multiple Sclerosis, later to be retracted. Even though I went to various neurologists, I was only diagnosed 3 years ago with MG. Myasthenia Gravis awakened me to how to appreciate life.

Within every situation there is a seed of good, no matter what the circumstance is.  Our minds are powerful creators, and when we continually focus on the compounding aspects of any challenge we become overwhelmed with the adversity.  With that, we now take the never ending cycle of the physical, emotional, psychological and spiritual pain and we compound it and create a place of being a victim. That place creates suffering. Do you really want to suffer? So, how does one learn to deal with the many aspects of any adversity?

I am fortunate that my husband, Gary, is a life and mindset coach. With his mentoring and my ongoing studies, I have been able to see the ‘seed of good.’ That is not to say that I never go to a place of sadness or concern, I simply choose not to stay there. The best analogy I can describe in this circumstance is to think of a ladder and its rungs.  You cannot go from depression or sadness to happiness and joy in one step. It is one step at a time. So, how do I get there?  I pay attention to all the subtle nuances in life. I open up my journal and write down what I noticed for the day, the light streaming through my living room or a butterfly flittering about my garden. Often it is the simple things in life that bring us such peace, harmony and joy.

Also, I have found that when I am busy giving to others, the lightheartedness of giving unconditionally, purely from the heart, lightens my pathway with joy and my burdens feel so much smaller. Be so busy giving that your troubles become small and your love for others transcend everywhere, a reflection right back to you. Every time you touch someone’s soul you have enlivened yours and awakened love everywhere.

Gary has been a source of inspiration, a guiding light to show me the advantages of using effective listening tools. Over time I have learned the difference between being an active listener and wound bonding. In wound bonding the other person shares their story. We may think we are showing empathy, but in reality we are simply comparing our stories, a very ineffective way to listen, to show compassion and empathy.

To be an active listener simply be available, be quiet, listen, reflect back what you heard and validate. Be sure to ask them if there is more. It is not about fixing the situation. It is not about you. It’s about the other person.

This tool is so important for the person dealing with MG or any situation and for their friends, family members, and caregivers to actively use it.  Taking it a step further, it is vital that the person who is dealing with the fluctuations of MG, or any adversity, allow the other person to open up about their feelings. It is so critical. We often forget that our caregivers are hurting too, and the compounding affects any condition or disease will have on others. To receive understanding, compassion, empathy and love, you have to give it too!

During the times I fall down emotionally and spiritually, through the grace of my beliefs and relationship with God, I feel renewed again. Without hope, we yearn for things we desire, perhaps to recapture the place we once were totally healthy and fall short in our faith and create that victim mentality. If we lead with hope, then we have a sense of wholeness that all things are possible. I am a hopeful romantic about life, all aspects of life. I believe that all things are possible. Even if I never go in remission, I am led to create the best possible life with whatever my day may bring. Here’s to celebrating life!

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Occasional contributors to Bellesprit Magazine between 2011 – 2013.

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