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How Having Rare Neurological Conditions Opened My Eyes.

Turn struggles and limitations into opportunities to make a difference.

Sometime in 2010, as I was walking to the store, I felt a sudden weakness on my left leg, it took me by surprise and fell on the ground. I immediately stood back up, dusted myself off, and went about my way. I attributed it to a simple spasm- no big deal, I thought. A few months later, the same thing happened, this time, my calf was solid as a rock. I told myself that perhaps my body needed more potassium, or maybe I was dehydrated. I ignored it once again until one day; both legs gave out on me.

The Stress of the Unknown

I knew something was amiss. I decided to see my primary Doctor, and after a few tests, I was sent to the neurologist, I started to get nervous. The initial diagnosis was multiple sclerosis, a potentially disabling disease of the brain and spinal cord. My nervousness turned into panic, as you can imagine. I can handle pain, my pain threshold is high, but I am not as tough emotionally and mentally. I started thinking of the worse possible scenarios. I thought about how this illness will change my life, how my family will be affected, and how it could stop me from doing the things I love.

Though some of the tests said it was indeed MS, some said; otherwise, I was a bit relieved, but we were back to square one. I was sent to different specialists for years, and as the years went by, my symptoms progressed, and my stress level skyrocketed, making my symptoms worse. The spasms had gone from my legs to my torso to my vocal cords, making it hard to speak at times. My body would twist involuntarily, and my ankles would twist like pretzels, bringing tears to my eyes. My family did not know what to do or how to help.

I am not certain when it all started, but one day, unusual symptoms manifested. The left side of my face drooped. I was confused, I had difficult time concentrating, retrieving words, and when I was finally able to speak, nothing made sense. It was a petrifying experience. Though I was only in my thirties, stroke most likely was the culprit my neurologist told me, but it started to happen quite often. Things we not making sense.

After years of frustration in seeking answers and given a different diagnosis, I was finally diagnosed with Dystonia, a rare neurological movement disorder that causes muscle contractions. Added to the diagnosis was Hemiplegic migraine, another rare type of neurological condition where a headache is accompanied by muscle weakness and other symptoms that mimic stroke. Both symptoms overlapped with each other, one triggering the other at times. Everything finally made sense. 

Though medication controls both conditions, there is no cure for Dystonia, and when I go through dystonia storm, there’s nothing I can do, but to ride it ‘til it passes. Sometimes I could not help but fall in the pit of desolation; I, more than most, know full well how self – pity can affect one’s life. The negative thoughts and feelings added to my stress and in return, made my symptoms worse.

Pride Took Over

“My illness is not going to stop me,” at least that’s what I repeatedly told myself, but my condition had something else in mind. I could not keep scheduled meetings, my job was affected, and I lost clients. My husband took over most of my responsibilities as a mother and a housewife; it made me feel useless and inadequate. My condition prevented me from living a normal life.

I kept pushing through despite the struggle, ignoring the desperate call of my own body to stop and rest, whether I was physically, mentally or, emotionally beat down; I paid no attention to them. I tried to continue to be who I am, a strong person! I planned projects at home and work. I refused help from family, showing them nothing has changed; I can still do things on my own; I repeatedly reminded myself. I continue to smile and put a grand façade, carried on with my obligations until my body could not handle it any longer, and I received a wake-up call.

Despite all the warning signs of impending doom, I went about my days like nothing was wrong, and before I could stop and think, I was on top of the staircase seizing, putting my whole family in panic mode. The last thing I remembered before losing consciousness was my youngest daughter’s voice screaming in terror, she was traumatized. I placed myself in danger of falling and hitting my head on the ground, perhaps not waking up again. Yes, I was unconscious for a while, but the moment I opened my eyes, it woke me up with a worthy realization. Something needed to change.

Realization Leads to Acceptance and Opportunity: 

I guess I was afraid that my condition would change everything. I was worried that my illness would define me. I was scared to look weak. It wasn’t easy for me, and it took time for me to see the positive side of my situation. I turned things around. I started to find ways to feel useful, to feel complete despite my limitations. My weakness had given me a new perspective in life, and this is to acknowledge the little things presented to me, to see the beauty each day brings, and to savor the limited time I am given each day.

I decided to join a soccer league. I never played any sports before, let alone soccer where there’s a lot of running involved. Still, because I knew I might never be given a chance again, I took advantage of the opportunity to do something I’ve never done before.

I decided to write! Some count sheep to help them fall asleep, I create stories in my head. I decided to write them down and thus my first book, “Believe” was born! “Believe” never made it to the bestselling category, far from it, but the process was a part of my healing process, a story to tell, and there were no regrets.

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I started to add value to myself. I decided to serve and add value to the people in my community. I started sharing my experiences in the hopes for someone to realize that struggles don’t mean defeat; it is an opportunity to find the real beauty in life that we may take for granted. It is an opportunity to find one’s strength; a strength they can share with the world.

I may be limited in what I can do, but I am not limited in power, passion, or opportunity to make a difference in myself and my community no matter where I am or how I feel. I now live with the mantra of doing what you can, when you can, while you can and enjoy every minute of it! Life’s struggles only stop you if you allow it.

Revelation

I was wrong when I thought I lost my identity. I was crazy when I thought my condition defined me. I was being foolish when I thought strength was being able to do everything whenever you want to; I was wrong about a lot of things. However, I realized that I am still the same person; I am still all the things I was before my condition, perhaps even a little bit stronger and more inspired.

I needed a little waking up to understand that I am, somehow, a better version of myself now. Someone who can say, it’s OK to take a break and ask for help. Someone who found strength from weakness. Someone who looks for opportunities to be great despite hardship. I needed to see myself as somebody who can take a moment, enjoy the sound of raindrops, and expects the sun to shine again after the storm. 

Originally posted at www.jennifersenne.com

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