My brother Michael died on July 4, 2003. It was five days after his 26th birthday. He died of pneumonia and heart failure caused by the weakening of his heart by Duchenne Muscular Dystrophy. The same disease I have. Our Perfect Enemy.
We didn't always get along because there was only two years between us. I must admit that being the older one did have its privileges. Primarily picking on the younger one is the biggest privilege. I really, really pushed that privilege. Mike had cognitive delay issues as well as a plethora of learning disabilities. His temper was thermonuclear, but it was easy to find his "big red button" and push it. I caused quite a few meltdowns. His brown eyes turned darker brown, his Italian complexion shaded red, his voice became tight and he stuttered. The relationship we had in our youth was natural, but like all things in nature our relationship evolved. When we entered our twenties, we fought no more. We realized that we were the only brothers we had. From there, he became my best friend. I could tell him anything and he could count on me to listen to anything. I had a treasure and I knew it.
I don't remember when the conversation with God happened. After high school graduation I'm sure. I had it all figured out and I was laying out the plan. When I used to speak to God, I didn't bow my head with eyes closed. I always looked up and spoke aloud in a quiet place locked away from the world. The plan was simple: I would die first, then Grandma who was our caregiver and Mike would go last. It was fair, straight and statistically likely. It was my only askance.
Michael went to the hospital in June 2003, one year after having an episode of pneumonia that hospitalized him. He recovered then. I knew he would. I knew. In 2003, I knew he would fight and win again. In 2003, I was wrong. He was gone and ooooooooooooohhhhhh God there was pain. Now, hollowness. Then, rending pain. I WAS SUPPOSED TO GO FIRST. ME. Not him. Me. I was older, weaker and sick more often. Didn't matter. None of it mattered. He was GONE. Taken. Taken from me.
I understand survivor's guilt. I understand it wasn't my fault. Yet I still feel betrayed, cheated and even rage sometimes. He should be writing here and I should be in the next place. It is only fair, but life's not fair. So I live. I move along. There is a caveat, however. A vow I made to myself, the universe and Whoever is listening. I live FOR him. I will speak FOR him. He always trusted me without question. He believed in me, believed in goodness, believed in justice. So, as debt to him, I will live to try to create the world he wanted. When I speak of compassion, empathy or what is right, I speak for him and the power of his spirit. I will speak for the dead because they can't speak for themselves. I speak for him. I am proud to do so.
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4 comments:
Mike always looked up to you and loved you. Your words and actions will always do him proud.
Love you
Take care of yourself and keep on speaking out and acting up.
D: I never knew your brother,but I am sure glad I have met you.I know that you are on a jouney which at times must be totally amazing ,yet sometimes totally exhausting and draining too. I know that we have only usually talked via computer or seen each other at Symposium or in the halls of Helena.This one thing I know to be True: You are You!! You speak your mind not only for yourself, but also for Mike,and all of us.Be gentle on yourself because people leave legacies not only after death but in life as well. Your entry was timely because I needed to ask the same questions. Am I wheeling in the best possible direction? Am I denying my true self for the sake of others?Thanks Shyla
I'm so sorry you lost your brother. 2 months ago my fiance died from heart failure due to DMD. I totally relate to that hallow feeling of losing your best friend, the person you went to for everything. It's so hard to go w/out the support you always had right there. I'll always love Eric and he will live in my heart like your brother does in yours.
Kimi
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