23 January 2017

Huntington's Disease: A Lesson in Love

        Awhile ago I shared with you my family's genetic vulnerability to Huntington's disease. If you missed it, Huntington's disease is an incurable, hereditary brain disorder. There is no (currently) 'effective' treatment or cure. Nerve cells become damaged, causing various parts of the brain to deteriorate. The disease affects movement, behavior and cognition - the affected individuals' abilities to walk, think, reason and talk are gradually eroded to such a point that they eventually become entirely reliant on other people for their care. Huntington's disease has a major emotional, mental, social and economic impact on the lives of patients, as well as their families. It is an atrocious sickness that no human being deserves. I want to share a positive story with you, but you should also see how powerful the disease is.  Below is another family's story to give you an idea. 


 Huntington's disease (known as HD to those familiar with it) affects both men and women equally and more commonly appears during middle-age. The Huntington's Society of America says 1 in every 10,000 Americans has the disease - that's 30,000 people nationwide. It is estimated that at least 150,000 other Americans have a 50% risk of developing HD, while thousands of their relatives carry a degree of risk too. The "at risk" category is where I fall. 

(Uncle Jimmy Center, surrounded by his siblings)
 This month my Uncle turned 55. He has HD. A celebration was planned by his sister just for him on his special day.  Family members from 4 generations attended. His aunts and uncles all the way down to his great nephew were in attendance. Everything was perfection, joint laughter filled the air. Cake was gulped down, balloons were everywhere. Smiles were contagious. 
     Silents thoughts stop me momentarily. I catch myself wondering if these memories will remain this way for years to come or if they will turn into painful reminders of what used to be. How we all used to be. But that's the kicker isn't it? Love is such a powerful thing. It brings with it happiness, security and peace. But, when the things we love are lost, we tend to feel the opposite. Pleasant memories become laden with jabs of pain. I realized then that maybe that's why love is ours to give. In a family where a disease can obtain more control than yourself, we learn to value the power over the things we could undoubtedly keep just for us. This is what makes our love strong. We can't take one family member's diagnosis and carry the burden for them. We can't stop the decline when it starts. We can't walk for them when they have lost the ability to. We can't force them to remember our name. The game changer is that we CAN love them. We can always love them.  It's a shoulder to lean on. It's days spent on a party that will only last hours. It's the perfect cozy sweater in the perfect wrapping paper. It's the homemade card covered in crayon. It's in an opened car door and a phone call to make sure you made it home. I didn't know all the people at the party but when I looked out all I could see was acts of love. I felt fuzzy and warm. I could tell Uncle Jimmy felt it too! This is huge. I wonder how we overlook these things every day.
(Uncle Jim & I)
               Maybe you can't always hear it but those cookies your grandma made you, the flat tire your dad changed, the impromptu visit from your sister, the rock your son just gave you......all very big acts of love. So even on the days when you feel like you have nothing to offer the world, always try to complete at least ONE selfless task a day. Don't wait for something negative to happen to realize you wish you could do more. Call your grandparents, hug your children twice - just because, hold that door for a stranger, let your sister borrow your car...or maybe even those jeans she really likes that you refuse to share. Bring your co-workers donuts on a rough day. Help the neighbor shovel snow off their steps. Smile at a stranger. 
      We can't control everything and we never will, but if we're here together anyways why not make it easier for each other when we get the chance. You'll never know how much it means to the person you do it for, or how greatly it will touch the people watching you. 

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