Open thoughts

As Riley’s birthday came and went I began to think about my own birthday, not my last one or my next one but the one that supposed to be monumental the one that celebrates another decade of life. Of course for me that would be my fortieth. I sat there day dreaming about the grand adventure I would plan for that celebration, back to Antarctica to see more penguins? Australia to scuba dive or a motorcycle trip around New Zealand? So many places I still have to see and so much still to do! A pain in my side tore me from that daydream and I realized I was being foolish, how can I possibly look that far ahead? Six years!! I don’t have the luxury of looking that far ahead, oh the adventures I would have if I wasn’t sick. Don’t get me wrong, I’m super fortunate and grateful that even in sickness, I’ve been able to travel with my girls and I will continue to do so until I can’t anymore. But I can’t be so presumptuous to think that I can plan my fortieth birthday let alone make it to that point and still be in any condition to carry out those plans. I can have hope because without hope, there is nothing.  So for now, I look to tomorrow, my grand adventure of the day to come, opening my eyes in the morning (what a gift!), walking to the park with Riley, Sadie and Rachel (an excursion in itself), being with the people I love(the greatest gift of all). Those are my grand adventures now and if I make it to forty, that will be enough.

There’s a joke in Curb Your Enthusiasm about stage four wisdom and it’s sad but true because no matter your age or circumstance, when you’re given this type of diagnosis, it’s like your brain jumps into overdrive and matures at ten times the speed and suddenly you have the perspective of someone whose lived a very long life. More often than not, that perspective is that nothing really matter other than love and health. You’ll find that people in their eighties or nineties aren’t wasting their time being upset about things they can’t control. They don’t care as much about making new friends, instead they just want to nurture the friendships they do have. There’s no wasted energy, emotion or time on things that aren’t filling their cup at any given moment and me at thirty four years young have been forced to that level of perspective. Growing up, my parents always referred to me as an old soul and I’ve always felt like one, but I didn’t want what was a cute thing to say to a kid to become his forced reality.  But I’m grateful for it either way because it’s amplified the characteristics I had before my diagnosis. whether I want it or not, this is my life now and as my friend so eloquently put it, I’ve been cursed with the greatest perspective.

Since I got diagnosed, I’ve met many people in a similar situation and the second thing that we all have in common is that regardless of any physical pain that we may be in at any given moment, the mental struggle is always much more difficult. Trying to cope every single day with the fact that you’re dying so much faster than everyone around you really takes a toll. Your friends and family and people you meet will all be here long after you’ve gone. One of the hardest parts being that no one can possibly understand what it’s like to look at your partner, your children, siblings or parents and know that you will die before them. There’s nothing I can write or say that would make anyone understand what I feel when I look into Riley’s eyes and know that I won’t be here to watch her grow. That’s why connecting with people who do understand what that’s like is a tragic and beautiful thing to be able to bond over. Watching your friends go about their “normal” lives and knowing that will never be you again is painful because you can’t help but feel like you’re being left behind when the reality is it’s you that’s leaving them behind. 

2 thoughts on “Open thoughts

  1. Annette Shaffer says:

    Oh Dearest Child, without hope you still have today. Never nothing. Thank you for sharing your on-going experience grappling with Death. It is noble and good of you to create this record of your journey, shedding light on such a dark topic.

    Please eat pomegranates.


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