The Beautiful Struggle
This is for anyone who has ever felt alone.
It seems people don’t understand your plight. But I do. Your face is the only one I truly recognize in a crowd of strangers. I know that walk. I identify with that blank stare. I see your sharp decline after sitting in the sun.
You are a member of a unique community of people. Having intimate discussions with your physician. Learning the hard way, you are human. You've got to be a special person to endure in this group. Rise above lesser mortals and inhale the rarefied air.
When times get hard
Fatigued. Exhausted. Stumbling and trying not to fall. Attempting to figure out the day of the week. Every day feels the same.
Symptoms are red hot. A cure is lukewarm. The world is so cold. And no one seems to care. They all look right at you. But their third eye is closed. Invisible symptoms shroud the truth.
When times get hard, behold how you tend to disappear. Protecting yourself. Hiding in your own mind. Inadvertently getting trapped in a looped meditation. Thinking about your past. Trying to overcome obstacles where the devil resides. Scared of being stabbed in the back. So, you never turn around. Always going forward. Looking the demon in his face.
Clueless like Alicia Silverstone. Not understanding how to navigate your new life. Confident on the outside. But afraid and naïve on the inside. Tired all day long. Blame it on the leg spasms that continually strike. Making you stay up all evening. So, you chew bottles of melatonin at dusk. In a quest for a good night sleep.
Feeling alone. Sitting in the corner. Shedding tears over nothing at all. Pseudobulbar affect. Not talking much. Not because you can’t. But because you are so afraid. Scared to speak the words of your neurologist into existence.
Relating to each other
Searching for the wizard. Wishing you had a new brain, less lesions. Clicking your ruby slipper heels together three times.
There’s no place like remission.
There’s no place like remission.
There’s no place like remission.
Constantly seeking help. Platitudes and broken promises are all you may find. Healthy people make you green with envy. Nothing wicked. Just a little jealousy. Friends and family ask if you want to talk. But their words have no effect. You only relate to people who have gone through what you have experienced. Someone who has walked down your same yellow brick road. Someone who respects your feelings. Someone like myself.
We are in this together
You can feel safe when in conversation with me. Sending encouraging words during exacerbations. Holding hands through this strange new journey.
Together we will look beyond the half empty hourglass. Counting the moments until relief. Focusing our loving stares on the half-full cup of opportunity. Smiling and making new memories.
Let’s break the mold and never sit at home alone. Learn from our mistakes and missteps. Remember we are fighting the same revolution. Colleagues in a campaign for a happy life. Breathing the same air in the beautiful struggle we share.
This or That
Choose your affirmation for today
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