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 accept. A disease that continuously takes regardless of anyone or anything. It had not been the first time I lost someone to Mitochondrial Disease and it won't be the final, but nonetheless, it still hurts like hell. If only I could say it gets easier the longer you live with this disease, that you simply somehow get used to the pain, but that isn't the case. Although grief changes, losing a friend never gets easier, particularly 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 many people cannot understand. It is a given that you will eventually die out of your disease and that you will lose friends on the way. I'm aware death is a reality for everyone, but it is drastically different when you're sick with a life-altering disease. You be careful about your friends die before they are ready to go, all while understanding that could be your future.
Being identified as having a disease so rare and heavy changes you deep inside. I am unable to explain or put it into words. When you are first diagnosed, your life involves a halt. It feels as though everything begins to crumble everywhere and you feel scared, lost, and alone. It’s difficult to hear your diagnosis the first time. If I'm being completely honest, it never really becomes easy. It simply becomes part of your new normal. Every day life is never the same after receiving news such as this. Sometimes the only way to keep going is by creating a support system full of 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 by yourself in this messy, disease filled world.
You create strong bonds that you will never 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 cannot escape it because it's such a huge part of your life. To get the support that you need, you need to endure a lot of heartbreak along the way.
But somehow, the amount of love that these people bring to you is so much greater than the pain sensation. Making all the heartache worthwhile.
When you lose someone to the disease that you live with, you consider how they died and ponder whether that will be you. You ponder whether you will die the same age because they did. Will you die at age 27, 33, or 39, or are you going to somehow live to be older? Are you going to 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'll outlive who.
When you lose someone to the disease you live with, you feel angry. It's not fair that they died so young and they had to endure so much suffering throughout their life. How is it that somebody can fight to overcome so much, but still don't get the time nowadays that they deserve?
When you lose anyone to the disease you live with, you think about their family and the heartbreak they are experiencing. You think about how their parents won't ever feel whole again. Also, about how the world will always be a little dimmer without one. All while you grieve for the friend and the family they left out, you think about how that will someday become your family grieving you.
For me, this is actually the most heartbreaking part of this disease; understanding that I might one day leave our planet not only before I am ready, but before my family is. That is the thing about this disease that kills me the most.
