February 26, 2020

I didn’t get selected to run the NYC Marathon. A couple of months ago that wouldn’t have mattered because I’ve been planning to run with the Alzheimer’s Association anyway. They have a bib for me – all I have to do is commit to fundraise. No big deal. I mean it is a disease that has rocked my life & that of my family for the last decade. It’s a story I openly share here on Facebook. It’s a cause I feel passionate about.

So why am I upset by not being selected in the lottery? Why do I now feel hesitant to run with the Alzheimer’s Association? I’ve been trying to figure this out tonight.

I’m feeling a lot of emotions but at the root I think it’s anger towards the disease. You see, I can still choose to fundraise & run with the Alzheimer’s Association with a bib of my own. But now I feel like I am forced to do it – if I want to run NY this year. I feel like it’s another choice this god damn disease is stealing away from me. And that makes me really angry.

I also have to say, when Jane & I originally talked about me running NY in her honor, I assumed she would be dead by then. I assumed it would be a great way for me to pay tribute to her & that her death would be far enough before the race that it wouldn’t be painful. Yet here we are, 8 months away from the marathon & no indication Jane will be dead. And that brings up so many other emotions.

I’ve been visiting Jane every week for 4 years. We’ve been battling this disease for over a decade. There is so much of the story I have not yet openly shared. I am tired. So fucking tired. I feel I need to show up & be present for each visit with my stepmom. I want to be strong for her. I want to appreciate each visit because I never know when it will be my last. But god do I miss her. I miss our talks. I miss the way I could tell her things without worry of judgement & how she’d give it to me straight. I miss the way she’d see things in my life so plain & clear yet I never saw it that way myself. She didn’t care if I wanted to hear it or not – it just was. I miss shopping with her, baking with her or working on some project with her. I miss how fearless she could be.

And I fucking hate how I can’t ever just have a moment alone with my stepmom.

Tonight as Jane & I watched the sunset, I talked to her about my feelings of the lottery results & running the NYC Marathon. Like I always do, I talked openly with her – about everything. I asked her if I should run NY this year with the Alzheimer’s Association & of course she said yes. She can barely communicate but she can get a clear yes out to me. I don’t know if I was frustrated or sad or some combination but I couldn’t help myself – I bawled like a baby. I told her everything on my heart, including how I wished she would die. I hate watching her suffer. I begged her to stop fighting to hold on. As much as we all love her, there is nothing left for her in this life – dementia has ensured that. And I believe there is so much for her beyond this world. I don’t say these words easy because I know I will miss her deeply when she’s gone. But the strong, feisty woman I knew has long left. So I reminded Jane of her strength & I reminded her she can choose to go out on her terms – instead of allowing this fucking disease to dictate the terms.

I held her hands tight, I looked in her eyes & the tears flowed. I didn’t hold anything back. Jane held my hands & stared deeply into my eyes as I cried. And yet one of the caregivers chose to walk up & interrupt this deeply intimate moment between a mother & daughter. And she stood there trying to get Jane to look at her & respond to her. Excuse me but WTF?!?! I appreciate how much everyone cares for my stepmom but were you really that clueless to the moment you were so rudely interrupting? My tears didn’t tell you to stay away? And what about Jane’s intense stare into my eyes? She rarely looks that intensely anymore. Yet again – I feel robbed. I don’t blame the caregiver – I blame the disease. Why can’t I have a real moment with my stepmom?

I don’t know what I’ll choose to do about NY. I need to sleep on it. I don’t have long to decide, yet tonight I feel completely incapable of deciding. Perhaps 2020 is not the right year. Or perhaps it is exactly what I need. I hate that I have so many emotions tied to this! And I hate that I can’t just trust Jane knows best & follow her advice to run with the charity.