What is “normal” anyways?

On April 8th of last year I distinctly remember sitting in my hospital room talking with Jennifer (my social worker) about life. She was always good at stopping by just to say “Hi”— to just check-in but then getting more out of you.

That day, my nephew was turning 7 years-old. I was disappointed and sad and angry that I wasn’t there to celebrate with him. I was at NIH and he was 2,500 miles away turning another year older and I wasn’t there. Celebrating his birthday was something I’d done almost every year since he was born (with the exception of when I was in Germany) and now. Now I couldn’t be there. It wasn’t even an option. Jennifer and I talked about this. We talked about the other events that I’d be missing out on – holidays, birthdays, yearly events that I’d grown to look forward to (can you say Bay2Breakers or SantaCon??). Friends would be going out. Posting photos. Having fun. Doing a bunch of stuff that I couldn’t do. I’ve never been one to experience FOMO (the “fear of missing out”) but I asked for her advice on how to deal with this anyways.

She reminded me to look at the big picture.

Yes, I wouldn’t be able to do a lot of things right now — I mean, I was after all having a life altering procedure done but once my body recovered I’d be able to participate in those things once again. She reminded me that this procedure, this time in the hospital was giving me the life to be there for future events that I might not have been there for otherwise. Now, I know I wasn’t on my death bed at the time of transplant. I didn’t even feel that sick. My blood indicated otherwise but in general I felt okay. I was exercising and working and living like any other person, but I truly believe that the NIH saved my life. There’s so many unknowns in life but statistically speaking with GATA2 I would have ended up with Leukemia at some point and likely by the time it would have been diagnosed it probably would have been “too late”. With all that said, Jennifer was right. I may not be at Jasper’s birthday or many other events this one year, but I’d be there for all of them the following years and looking at it that way allowed me to realize that it was okay to miss out just this once.

So this year, as I’ve been getting back to normal I’ve had several pivotal moments. I celebrated Jasper’s 8th birthday with him but my first pivotal moment came the night before May 15th. I was getting excited about going to Bay2Breakers (a massive SF event where people dress up in costumes and race from one side of the city to the other). I was babysitting Jasper and Abby. Jasper’s soccer season was in full swing and the next morning he had a game.

“TT?” (because that is what he calls me), “Are you spending the night and coming to my soccer game tomorrow?” My initial reaction was that of “DO YOU KNOW WHAT TOMORROW IS??!” and then I realized that this little boy that I adored so much had just invited me to his soccer game. Something that he is so incredibly proud of and he wanted to share it with me. I told him I would go realizing that it would mean I wouldn’t be going to Bay2Breakers. I went to the game the next day; not even regretting that I was missing Bay2Breakers for the second year in a row. I don’t even remember if they won or not but I learned something extremely important that day. That day, I was actively making the decision to not go. It was an option but being there for Jasper and actively making that decision was so important to me. I actively decided not to go but the option was mine. I think this is one of the most difficult things when you’re sick. It’s not your choice to get sick and everything just seems so unfair. I’ve thought about this so often and yes, while getting sick wasn’t my choice, having the transplant was. I actively chose to have it done. I chose to take control over my self and my body and go through with the procedure. It was in this interaction with Jasper that I realized so much of life is in your hands even when it might not feel like it.

My second pivotal moment was on  June 25th. Day +421.

I joined BloomReach in March of 2012 and BloomReachers quickly became some of my most favorite people. They’re smart and motivated and inspirational and athletic so I decided to organize a group of us to hike Half Dome. Growing up in the mountains has given me a perspective on nature and people that I think is pretty unique. There’s something truly special about sleeping outside, viewing the stars without the light of the city drowning them out, bonding with people over a campfire, hiking and just being outside and I wanted to share that with some of my favorite BloomReachers. It was such a fun event, that we did it again the next year. I was looking forward to doing it again last year but well, the whole transplant thing happened and I literally wasn’t physically able to do it (remember, I’d get winded just walking up a single flight of stairs). But! This year I decided nothing would stop me from getting BloomReachers on top of Half Dome again. We planned the trip and on June 25th I made it to the top. On Day +421 I hiked ~18 miles with 4 amazing people. For me, this day was the epitome of me getting back to “normal”.

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Yue, Sunny, Riya and Seychelle were by my side the entire time and didn’t complain one bit when I need to take any of my many (many) breaks.

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Left: The obligatory selfie on top with Yosemite Valley in the background
Right: The obligatory “look at me” photo on the diving board (sorry, Mom…)

 

 

 

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6 thoughts on “What is “normal” anyways?

  1. You always remind me that no matter what is happening to you or to the world – you can be determined to keep walking forward – running forward – and in your case climbing forward. Also I love the bit about making a choice to give up what you want (b2b) in favor of what a young person in your life wants in order to show your love and support. I love how you are Ashley V.

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  2. Loved it, Ashley, thanks. and I see that I missed your July post completely, apologies. I love all the pics, and how about that lovely head of hair! 🙂

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  3. I couldn’t have read this at a better time. I’m currently at the NIH post one of those lovely bone marrow biopsies, you know the drill. I have decided to take control and go froward with transplant this winter. I always look forward to your posts and progress. Thanks, Ashley!

    Taylor

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