Comfortably Uncomfortable

I stopped writing. I stopped blogging. Edging into blindness filled me with a sadness I pretended to smile through, and a rage I pretended not to have. When you are struggling with a serious, life-altering situation/issue nearly everyone wants you to be "ok" and to tell them you're "ok". In the 8 years since I was diagnosed exactly 3 people have asked me how I feel about it. My father, my brilliant cousin Amy, and my ever-amazing and supportive girlfriend (whom I affectingly refer to as Ninja - because she truly is.).

Diseases make people uncomfortable. It makes them even more uncomfortable if you're uncomfortable. Thus, everyone is in a hurry for you to be comfortable with your discomfort, so they can go back to being comfortable.

Be it degenerative like mine, or cancerous like my courageous little cousin James, or some other horror; people often struggle to know what to say. They are uncomfortable being reminded of their own mortality, and even more uncomfortable with the mortality of someone that they care about and love. It's an interesting dichotomy. They wish to comfort you, and themselves, without really discussing the matter at hand and making themselves uncomfortable. This usually results in a great amount of discomfort, avoiding said uncomfortable topic. After all, it is so much better to be comfortably uncomfortable with your own discomfort, then uncomfortably uncomfortable outright (*Sarcasm*).

For me, and my inherit weakness at acknowledging my own unhappiness or anger (until it gets to a point where it overwhelms me and crashes down everywhere) creates this need (or perhaps bad habit) to pretend I'm fine, I'm great, both to myself and to others. Pretend I don't mind going blind. It could be worse. At least I have people who love me. At least I have technology to help me. At least I have Uber to drive me. It's fine. I'm fine. Everything is Fine. Said me 1,000 times over. And it's bullshit. Total and utter bullshit. I am not fine. I am not okay. I appreciate the love, the support, the technology, and the help. But we live in a sighted world. And I am, somehow, expected to make my peace with the fact that one day I will most likely live in complete darkness, use a cane, and have an assistance dog. Never witness another sunset. Never see the smile on loved ones face. Never watch my beloved ocean crash and roll over itself. No, I am not fine with that. I am not at all. And, more to the point why should I be? 

 Why does it seem more acceptable to sell discomfort to ourselves as something we should be comfortable with, than acknowledge it exists and that we are not in fact comfortable with it..(yet?). To be fair, I would like to be comfortable with it. I would also like for it to be okay that I'm not comfortable with it. If I could find that space.. somewhere between comfortable and uncomfortable, fine and not-so-fine, that would be fine by me. I think perhaps there I may find serenity.

So this is me not trying to convince myself I'm fine with my MD/RCD. This is me having good days when I am able to live with it, and even forget about the giant clock screaming bloody murder in the back of my mind; and accept the bad days when I cannot live with it, and cannot accept the giant screaming clock in the back of my mind (on those days the clock is usually right square in the center of my mind).

I have no choice in whether or not I have MD. I have no choice in how it will progress or where it will go. But I can choose what I will do with it. How I will react (a constant work in progress). Somewhere in the space between not-really-ok-with-it and accepting it, I may find peace with my MD and that bitch of a clock I just cannot seem to get along with. Until then I live to see another day.


Happy Trails,
Kristin