I did it
I’m about to speak…to say the words that I have kept locked away. Never have I dared typing them out, not even allowing them to grace the tip of my tongue. Never even silently whispered them to myself. No I could never let them past my lips…that was unsafe.
I’m about to tell you something. Something that I have kept secret from my mother, my brother, never could I imagine uttering these words to the coworker who I sit next to for 8 hours every day, 5 days a week over the last 3 years. Not even to the best friend who I exchanged embarrassingly intimate details about the men I loved over the years.
And yet here I am about to tell you, a stranger I met a few years ago and yet my closest confidant. Last week I took a Q-tip and rubbed it against the sides of my two cheeks and sent that Q-tip to get tested for the presence of a PSEN1 mutation. I have decided to get tested.
I am terrified. I am terrified. I am terrified.
This is something I have been thinking about and contemplating my whole life. IT is what keeps me up late at night.
Over the years the back and forth has changed. In my early 20s I distracted myself with concerts and drinking. In my mid 20s I was convinced I had it and was determined to live my life to the fullest…travel, see the world, get the dress. In my late 20s I met my partner who made me believe in hope and for a few years was enveloped by the hope that I would be spared. Now in my 30s the debate has grown louder, and the back and forth send me on a daily rollercoaster ride. Rides that used to only come once a month.
I’ve decided that I have had enough. I can no longer live in this fear. A fear that I don’t even know where it truly lies. I need truth. I need my truth. The truth will set you free I hear. I need to know my fear. I want to greet it as an equal, or an equal playing field so I can welcome it and learn to live in peace with it.
I am terrified, but I know that I can no longer live in the unknown.
To keep the promise that I whispered to myself at 18 years old “this ends with me,” I am going to find out my status.
I am going to find out so I can make plans. Make plans to either drop the long-term care insurance and pursue a challenging career or make plans to have a baby that is free of the disease. Generation after generation we have watched as our loved ones were taken by this horrible disease. Well I say no more. I will not sit quietly as plaques slowly deposit themselves in my brain or the brains of my loved ones. I will fight. And to fight well, one must know one’s opponent.
Right now I am praying that this isn’t some sort of affirmation or self-fulfilling prophecy. I don’t want to have the PSEN1 mutation. I don’t want to get sick. I don’t want to lose myself. I want the genetic counselor to open the envelope and say are negative for the mutation.
I’ll take my dad’s brown eyes, but please not the mutation.
Why I’m getting tested:
1) It has become a daily burden – the back and forth in my head - do I have it – “I have a weird headache, is this amyloid building up” – then – “don’t think like that, think that you are negative, or it could be self-fulfilling destiny, but don’t believe it too much or then you won’t be prepared if you’re positive.” It’s dizzying. And in previous years it seemed to only rear its head a couple of times a year, then it was monthly, and now slowly weekly, and daily.
2) I want to have a baby and I feel like knowing my status is an important factor in family planning. Not only because I can’t join or participate in research if I’m pregnant, but I also feel like you should go into parenthood knowing what your future looks like. Most people plan financially and socially, I need to prepare genetically. I know that I could adopt and that may be an option still open to us, but there’s something about having a piece of my dad back. New life always seems to bring about a fresh perspective to things and a continuance of something greater than yourself. There is something astounding at looking at a family tree and realizing that if one person had not been there, how different it would look. I want to have a child that has my dad’s smile, my mom’s eyes, my partner’s hair…a child that grows in my belly. I may not fully understand this intense desire that I have, but I can’t ignore it.
When I was 18 I thought naively that I could figure this disease out. Maybe some researchers weren’t willing to stay up until 2 am every day to catalogue every pathway convergence, that once I had a PhD or joined a certain lab that the flood gates would open and everything would be crystal clear. That I would find by whatever means necessary a way to save my family. I would know the right people, sneak the drug under veil of night if need be. Well this is my chance. And despite the many ethical debates within myself and religious family members and complete strangers telling me that it won’t matter once I hold that baby in my arms. I know that life is still just as important even if it has a mutation. I wouldn’t exist if my grandmother had had that option. But I know myself. And I know that I do have a chance. A chance to stop a disease that has haunted each member and generation of my family since 1917.
3) Finally, and this combines aspects of both 1) and 2) but I want to plan for and imagine a future that I can be at peace with. Do I go for a challenging career – which will mean sacrificing weekends and free time? Do I really start something else? Do I take that a year off and travel? Do I take a year off to write a book? I know I should live my life like I have no tomorrow and do what makes me the happiest, but timeframe is important thing to consider when it comes to filling one’s life with things that make one happy. If I had a week left, I would spend every day with my family. If I had a month, I would probably plan a trip to somewhere I always wanted to go. If I had a year, I would quit my job and write and book. But what if you have 15 years? You can’t exactly quit your job, especially if it’s a job you are passionate about. But despite that passion, do you commit yourself to a career that you know will be grueling and that you’ve been told will take 10 years to pay off?
I’m glad that I’ve waited until now to get tested. Each decade of my life has revealed a different layer of this disease and my life and relation to it. I wasn’t prepared before this. If it wasn’t for the almost hourly worry and sleepless nights, I would still hold off. A part of me keeps thinking, almost constantly, “this is your only life – are you sure you want to know. You can’t ‘unknow’ it. You can’t rely on the hope of not having it after you find out.”
Yes, I am scared. But it seems ridiculous to be scared of the unknown. How can I truly face my fears and come to terms and peace with it if I don’t know what I am facing. The answer is I can’t. I’m sure it will take a lot of daily work on my part to be ‘okay’ and let whatever wave that is already coming towards, wash over me already.
At night though I pray. I pray to God that I will be negative. I pray that I have been a good enough individual to not deserve this. I know this is stupid, but this is what comes to me late at night. I make ridiculous promises in exchange for being negative. It’s already an example of the work I need to do. I need to tell myself that whatever is in me (be that amyloid or not) it is already there and there’s nothing I can do or not do to make me not have it. I should be a good person no matter what, like my dad, who in the end still got it, despite his unworthiness of it.
I’ve tried to use this time to imagine what my life would be like if I was negative. Because after this there will be a definitive reason why that future would be impossible. Thus, I’ve been trying. And to be honest I haven’t come far. For some reason I feel like there is some sort of mental barrier for imagining this. From imagining what I’ll look like with white hair, where I’ll retire. It scares me to think that some place deep inside me already knows, and is protecting me from getting caught up in something that can never be.
Sometimes I think, just stop it all. Stop the worrying, stop the planning and just life your life like any normal person. Just have a baby. After all, wasn’t I the happiest when I was living a ‘normal’ life? When none of us thought about or even realized what AD was? Or am I just romanticizing that normalcy? Is it only because what I’ve been thru now that I know how good I had it? Do I forget that living a normal life also comes with its upsets that now just seem so small, but at the time felt big?
I’m thinking a lot about this quote lately:
“Normal day, let me be aware of the treasure you are. Let me learn from you, love you, bless you before you depart. Let me not pass you by in quest of some rare and perfect tomorrow. Let me hold you while I may, for it may not always be so. One day I shall dig my nails into the earth, or bury my face in the pillow, or stretch myself taut, or raise my hands to the sky and want, more than all the world, your return.” ― poem by Mary Jean Irion