Mitochondrial Disease: a genetic disease that causes the mitochondria to malfunction, eventually leading to cell death and organ failure
Yesterday, I lost a friend to the disease I live with. A disease that continuously takes with no regard for anyone or anything. It wasn’t the first time I lost someone to Mitochondrial Disease and it won’t be the last, but nonetheless, it still hurts like hell. I wish I could say it gets easier the longer you live with this disease, that you somehow get used to the pain, but that isn’t the case. Although grief changes, losing a friend never gets easier, especially when they pass from something that affects you so personally.
When you have an incurable and progressive disease, death is a reality for you in ways most people cannot understand. It is a given that you will eventually die from your disease and that you will lose friends along the way. I’m aware death is a reality for everyone, but it is drastically different when you are sick with a life-altering disease. You watch your friends die before they are ready to go, all while knowing that could be your future.
Being diagnosed with a disease so rare and serious changes you deep inside. I cannot explain or put it into words. When you are first diagnosed, your life comes to a halt. It feels as if everything begins to crumble all around you and you feel scared, lost, and alone. It’s not easy to hear your diagnosis the first time. If I’m being completely honest, it never really becomes easy. It just becomes part of your new normal. Life is never the same after receiving news like this. Sometimes the only way to keep going is by creating a support system filled with people who share and understand your pain, struggles, and biggest fears. These are the people who truly know what you are going through. Who make you feel like you are not alone in this messy, disease filled world.
You create strong bonds that you won’t find elsewhere, so when someone in your support system dies, the pain hits in a very different way.
Even when you think that you are numb from all the loss, grief will break through. You can’t escape it because it’s such a huge part of your life. In order to get the support that you need, you have to endure a lot of heartbreak along the way.
But somehow, the amount of love that these people bring into your life is so much greater than the pain. Making all the heartache worthwhile.
When you lose someone to the disease that you live with, you think about how they died and wonder if that will be you. You wonder if you will die the same age as they did. Will you die at age 27, 33, or 39, or will you somehow live to be older? Will you die peacefully in your sleep or will it be drawn out and painful? You think about all your friends with this disease and wonder who will outlive who.
When you lose someone to the disease you live with, you become angry. It’s not fair that they died so young and that they had to endure so much suffering during their life. How is it that someone can fight to overcome so much, but still don’t get the time in this world that they deserve?
When you lose someone to the disease you live with, you think about their family and the heartbreak they are experiencing. You think about how their parents will never feel whole again. Also, about how the world will always be a little dimmer without them. All while you grieve for your friend and the family they left behind, you think about how that will someday be your family grieving you.
For me, this is the most heartbreaking part of this disease; knowing that I might one day leave this world not only before I am ready, but before my family is. That is the part of this disease that kills me the most.