…in a sea of grief. I have had a lot on my mind since my grandfather passed away, last year. Every day I wake up with the realization I can never pick up the phone and hear his voice. Willie had such a significant impact on my life I feel this loss. I’m not an emotional person, on the outside, so I find myself alone a lot shutting down and shutting everything out.
I’ve begun to re-evaluate my stance on a cure. God. I hate that term. Cure. As if to imply there is something broken that needs to be fixed. I hate the perpetuation that disability makes us not normal. What is normal, anyway? I guess I have held the same position I’ve always had, but have not vocalized it until now. I want there to be a treatment to improve the lives of those of us with neuromuscular disabilities. I do not want us to worry about dying before we live out our lives. There has to be a way to balance accepting treatment with being proud to have a disability. I feel both.
I have felt too many losses. I’ve felt too many deaths. Above all, Ronnie. My best friend. Not a day goes by I don’t think of him. I loved that kid. Few understood the bond we shared – a deep friendship of understanding. I didn’t have many friends, but I always had Ronnie. We never had to say things because we understood what each other meant. I know he talked to me about things none of us would share with others, though. Crazy Dom, always tagging behind Ronnie. The sight of us together was a fixture in our town. He took my Coolio CD and never gave it back. That still makes me laugh, to this day. Ronnie, Dom, and Bobby, always terrorizing the locals of Walbridge, OH and sometimes Mikey, Ron’s little brother. Ron would always yell at Mikey and he and I would share a smile because I always found it funny. I saw Mikey as my little brother, too.
Ron could be quiet around others, but always spoke to me. He was sweet to most people, especially the ladies. Then I abandoned him, to save myself from my home, and go to college. I didn’t want to leave him, but I did. I was always afraid to tell him the truth about me. I couldn’t lose Ronnie, that way. I had just got up the courage to tell Mikey I was Dominick now and I missed Ron. He told Ron, who said he didn’t care. We just got back in touch and he died a week later. My heart broke into a million pieces. Not Ronnie.
How many others have there been?
Brian. Brandi. Adam. Billy. Dustin. Lisa. Cristi. Matt. Catherine. Stephanie. Terry. Mark. Caleb. James. Jordan. Donnie. Tony. Daniel.
The list goes on and on of all the kids I know who have passed away from complications exacerbated by their neuromuscular condition. These were all kids in their late teens or 20s. One made it past 30. Just barely. How can I ignore the fact that many of us do face a higher rate of death before 30?
Then there is those of us with the milder neuromuscular diseases. SMA III. LGMD. CMT. We may or may not die early. Who knows? Probably not. We are the ones who must bear silent witness to the deaths. We are the survivors who must face each loss. We feel guilt that we are left behind. Why us? Why not them? Why have we been spared? That is survivor’s guilt, which feels the twist of the knife a little further due to each death. We must carry the burden of remembering and hope we do the memories of our NMD brothers and sisters the justice they deserve.
Yes. I want this treatment, so more do not die. So those of us alive have more mobility and less chance of illness. We are not broken, though. At least not by our disability and to treat us as such is a slap in the face. We are people who have endured more than multiple lifetimes for others and we are okay with that. We should be respected as human beings are, and treated just like everyone else.
As the losses pile up, I recall all of the dead I wish I could talk to again. Not just those I’ve lost to NMDs.
Noonie. My Dad, Davey Boy. Max. Jack. I miss them all. It seems like too much. I begin to question life. Why are we here? Where do the dead go? Do we have souls? What happens if I’m not ready to die?
Because I’m not. I have much more life to live. Every death brings the questions. The uncertainty in Ash’s eyes. The asking me not to die. The lump in our throats at the thought of losing one another. How can I promise her when I do not know? I have no idea how long I will be a physical presence in this Earthly plane. I do not want to die, but I am drowning from all the loss.
I love you, Ronnie. Happy Birthday. You would be 32 tomorrow. I live for you. I go on, knowing you would want me to, but carry you with me, in my heart. Always.