July 6, 2019

July 6- Not Your Typical International Kissing Day

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Today, July 6, marks the fourth anniversary of the day that Ben had a respiratory crisis and we ended up in the Emergency Room at Mount Sinai Medical Center.  For me, this is simply the date when everything changed. I have learned not to have expectations about how I will feel on these milestone dates, but it has remained a particularly difficult day. I woke up this morning, as I have each year, thinking about how I woke up on this date four years ago and Ben said he could not breathe. I think of how we waited for the ambulance, not knowing what would happen. How ironic it is that today is International Kissing Day, because on that day he was connected to a ventilator and his mouth was covered with a  Bipap mask. For the next few weeks, before he agreed to a tracheostomy, our way of kissing was to blink our eyes tight and then I would throw him a kiss- he couldn’t use his arms or hands to throw one back.

I remember that in the midst of the frenzy of an Emergency Room, it did not occur to me that I could lose Ben at that time. I was kept very busy as the health care proxy and the only family member present. I emailed and texted his family and our friends and answered a lot of questions. I tried to stifle resentments towards his family, a few of whom had lots of questions, absurd suggestions and judgments but had never been there for him as his ALS was progressing. I was surrounded by people but felt very alone. I talked to Ben but had difficulty reading his lips through the mask. And, he slept a lot, leaving me to my own thoughts about what would happen next. I shared all of this in a previous year’s post.

I did not make any plans for today, not knowing how I would feel, but allowing myself to be okay with anything I chose to do. I have not shared anything with anyone today, keeping my feelings and memories to myself. I don’t want to hear that I should keep living, or I should make plans to distract myself, or that Ben would want me to be happy. Sure, it’s all true, but it doesn’t matter. Today, I just want to think about Ben, and that day.  It’s an odd feeling that nobody else would even remember this date, and I wouldn’t expect them to. That does, however, underscore that when this crisis hit, it was just Ben and me. And, as awful as it was, I was there for Ben, he knew he could rely on me, and there was a lot of love and trust. We may not have been a real Disney prince and princess, but the profound love and caring that we expressed throughout his experience with ALS gave special meaning to the song title So This is Love, from Disney’s original, animated Cinderella. I have been listening to a lot of our favorite Disney love song albums and remembering how he loved to listen to them. Music was so important to Ben, so it feels right to do this. One Dance remains a song that brings tears to my eyes, and yet, I still like to listen to it because it captures so perfectly how I was feeling during those days in the hospital. Click here to read about it.

Summer has never been my favorite season because I dislike warm weather, and now summer is filled with the memories of Ben’s last summer. It’s an odd contrast to my being a teacher and eagerly awaiting summer break. I have, however, come to cherish my frequent summer walks in Central Park. I do look for signs that Ben is with me, and finding turtles there is an important sign that he is present and watching over me. I always bring some coins to toss into the fountain and make wishes (see my post on wishes), often shedding a few tears. I try my Disney best to be optimistic even when I’m sad.

This date may always be a difficult day. In my mind, it will always be thought of as the beginning of the end. I see all kinds of social media posts about International Kissing Day and I think that it was the first day when I couldn’t kiss Ben.

I find myself wondering if I will always struggle on this day, though I do notice that the intense and debilitating grief has shifted. I have learned that today’s fog will lift, and that I will also have many days where I remember days in the hospital that, despite the devastation and horrible decisions, were filled with kisses and with love, music and even laughter. Today is just not one of those days.