A journey through genetic testing: Deciding to get tested
Beyond the clouds
First off, sorry for the corny title. Straight out of a Nicholas Sparks novel right? Second, prepare for some sadness. To be honest, I am completely scared to share this, but it is my reality and what I feel like I need to say.
There's a sweetness in not knowing. I remember driving through Alaska from Anchorage to Seward; it was rainy and the mountain tops were indecipherable beyond the fog. One could only imagine their height and grandeur, and there was something so beautifully mysterious about that. As if the world was my blank canvas and it was entirely up to me to paint the rest of it. What would I put up there? A jagged edge rock face or a rolling green meadow? As the windshield wipers swayed back and forth I couldn't peel my eyes away. So much beauty. It felt like a surreal world cloaked in mystery.
The quietness and solitude reminded me of the game Mist my father played on our computer when I was growing up. I myself could never get past the piano. You had to play some sort of song to open up another portal? I forget. But I still to this day try to find that old desktop computer...what was it? A macintosh (definitely before a macintosh was called an apple or mac). Every time I go home I'm looking for it (consciously or subconsciously). Actually to be perfectly honest I'm desperate to find it. Apparently, my dad wrote a journal on that computer before he got diagnosed. I would give anything to read his words right now. Did he share my same worries and panic-ridden nights?
I feel like, unlike most people who have lost their parents, I carry a very limited amount of mementos from him. One of the few items I do have is this red and blue striped polo shirt I keep folded in one of my dresser drawers. I stole it out of his closet after he passed. That was still when my mother had his things hanging up in their closet in the bedroom. After he died, I remember just laying on the floor in that closet underneath his pants and shirts. Every once in a while I'd sit up and grab a bundle of sleeves and just inhale them as deeply as I could. As if this was some magical spell that would bring him back. Oh how I miss that smell. It was what I always imagined all dads smelled like. Musty with hints of old spice, pine needles, and aftershave...and cherry chapstick. Always cherry chapstick. Anyway, I stole that shirt and never told anyone. I guess I thought it would always keep his smell and thus I'd always keep him. It would be my time warp straight back into his big arms again. The shirt made quite a journey...10 moves (including a transatlantic move to Europe) later I still have it. But unlike its original intention, all it does is bring me pain and a reminder that like his smell, he is gone. After the old spice was gone, I realized nothing was bringing me back in his arms...especially not a stupid shirt. I can't get rid of it though. The pain is sometimes the only thing that reminds me that he is gone. And despite it, that's better than emptiness. Sometimes I'll still pull it to my nose and breathe it in deeply. Desperate for even the tiniest hint of a note...but nothing. It's like that computer...I'm grappling for something that isn't there.
Why is it that we believe by just reading those words, touching things that were theirs, tracing over their signatures on birthday cards...will help. Even after 8 years my heart still yearns for him. Like he was there yesterday. Oh how I would love to talk to him. To tell him all my deepest darkest thoughts and the overwhelmingly crippling decisions I have to make because of this disease. I think he tried to keep my childhood protected and that's why we never talked about it. He wanted us to have normalcy and for that I am forever grateful to him. But oh how unprepared I was for what would come next.
Like I said there is beauty in not knowing what your future will hold. Like those shrouded mountain tops sometimes the imagination is more beautiful than reality. I remember driving back up that same mountainous and curvy road a week later. This time the sun was out and the clouds had melted away. I could see the mountains for what they really were. Faced with reality, they were not as grandiose as I had imagined, there were no craggy exposed granite faces...no incandescently blue glaciers up the saddle...no rolling green meadows. They were beautiful, but in no way I had dreamed.
Is it better to know or not to know? If the life that you imagine for yourself is full of wonderment and love, amazing trips and laughter to no end; if you can forget about this disease and just live your life in the beautiful unknown then I think yes choosing not to know is better. My father provided this life for me during my childhood, but with his disease and his death the clouds were lifted. I see before me now what is in store (or at least a 50% chance of what is in store). And my mind can't wrap itself around knowing or not knowing. Will an expiration date give me strength and empowerment or will it send me whirling down into deep and unending depression?