Jenny here.
By the time
I post this, it will be THE day. For
now, as I write, I am anxiously counting down the hours until midnight. Like so many nights in the last 5 years, I am
trying to be patient and focused, but I am also longing to just see his face
again.
The days have certainly changed over the last half decade with him. From long shifts at work followed immediately by long watches at the hospital as he slept, staring at him, my heart racing to the steady beat of the monitors, my whole goal of each day was just to make it back to him…These days racing home to a guy, often in front of dual computer monitors, awake, studying away. A mere 7 months until he graduates and we celebrate our 20th anniversary.
The days have certainly changed over the last half decade with him. From long shifts at work followed immediately by long watches at the hospital as he slept, staring at him, my heart racing to the steady beat of the monitors, my whole goal of each day was just to make it back to him…These days racing home to a guy, often in front of dual computer monitors, awake, studying away. A mere 7 months until he graduates and we celebrate our 20th anniversary.
But midnight
tonight marks the 5th anniversary of the stem cell transplant that
took; Day +1826. Probably day +1800 of
holding my breath (I’ve breathed a few times along the way, but just a few). We will have our *hopeful* last oncology
appointment next week, more a formality this year than a major event. For us though, this visit will mean hellos
and goodbyes and the end of a crazy chapter.
This time of
year I wander through a range of feelings, hearing lyrics from my favorite
Leonard Cohen ballad about broken hallelujah’s, each day getting closer to this date.
I put my Fight the Big Fight Spotify playlist on and listen, in order,
paying respect to all the emotions. Recently,
the word that has been on my heart, on repeat, about where we stand at this
moment --Indelible.
As much as I have tried to
wash the marks of sleepless nights, anxiety, grief, loss, and so many other
things away, this isn’t a job that can be accomplished, it’s bone deep. Not just in the science marrow kind of way, but in how it’s forever created a new Wil. A
new Jenny. And a new marriage. A new life that is barely recognizable at
times. A life I both cherish and admonish, sometimes during the same day. Standing on this side of things, I have started to wear these indelible marks with pride, with admiration, and as the true sign of all my human-ness in this life. It's powerful Humbling. But I would still categorize my relationship to this cancer thing as #complicated.
You all have watched the
cancer specific changes. Cried when he
was kept alive by blood transfusions.
Prayed he would not end up with an infection when he had no bodily
defenses. Supported. Yelled Fuck Cancer. Sent legos. It’s unfortunate that the more treacherous
part of the healing was post hospital and post clinic days when life quieted
for him, and opened up a new world of sorrow for me to wade through alone, when I
could no longer write about the feelings that didn’t match the victory march I
felt pressured to lead.
The last few years have truly
been difficult in so many ways, so deeply personal that I sheltered them away from
most people. Yet, this period, would be the
most helpful to others on a similar path; The uncharted aftermath seems to be
the forgotten part of the stories I hear in general. Even though it’s those miles that tell the
tale of how someone makes it out of the canyon, against impossible inclines, we barely hear the echo of
their existence, satisfied to see them at the top eventually.
2018 ended with us wondering
what we were even doing anymore, not so much individually, but together. While our commitment had never changed, some
of the reasons for staying together had faded through patient/caregiver roles and
trying to move back to a partnership.
Attempting to find ourselves, getting so lost along the unknown trail,
we couldn’t quite envision goals and dreams together anymore. We started having the hard conversation that
if we couldn’t figure it out, we had no idea if forever meant together. We were a strong team going into cancer, we
slayed treatment and every complication, but when the dust started to settle,
we realized it was no longer about getting back to our life…we had to build an
entirely new existence and we knew each other so deeply, so raw, we didn’t even know how
to make the new life work with all the new found vulnerability.
Side note: I joke that you don't really know your spouse until you've helped them with an enema. There is so little mystery left after major medical issues. Somehow you still need a little magic to keep things going.
Side note: I joke that you don't really know your spouse until you've helped them with an enema. There is so little mystery left after major medical issues. Somehow you still need a little magic to keep things going.
2019 started out with us deciding
to focus on ourselves while we also re-entered courtship with each other. I fed my soul on a steady diet of concerts
and trips, of loud music in the car and kitchen, dancing in the living
room. Wil focused on school and his new
part time job. We started to find the
bottoms of our souls again and worked to fill them up. We ate lots of tacos with friends. Moved to a new space. Started taking guitar lessons.
At some point we got our
groove back. And I know I am speaking
for only me in this post, but I think we fell in love with each other again too. And finally started figuring out this life
3.0. Past treatment. Past the canyon of doubt after
treatment. Past looking at each other
like strangers. To the very north rim, the less traveled but, more beautiful overlook.
Side note: I don’t think we ever stopped loving each
other, but love and being love and being in love are 3 different states of
being to me. The trifecta? Damn near impossible with most people, but it’s
what I feel when I am with him now. And
how I am starting to fall in love with life again too.
So tonight, it seems only
appropriate that we enter into the last day of Yom Kippur, Day of Atonement, and
holiest day of the year in Judaism. While
we do not observe ourselves, the lessons of these holy days from my time
working at a Jewish school are still etched in my mind. A day
where there is fasting, introspection, prayer, rest--followed by celebration,
shouting, and dance. Through the solemnness
of observance there is the “undercurrent of joy; it is the joy of being
immersed in the spirituality of the day and expresses confidence that G‑d will
accept our repentance, forgive our sins, and seal our verdict for a year of
life, health and happiness.” (www.chabad.org).
Cognitively, I have understood
this before. This year, I feel its
message at my core. Tomorrow we will rest.
Reflect. Love. And shout about all the marks we will continue to carry with us.
Year 5. Time hasn't flown, but it's still hard to believe.
Year 5. Time hasn't flown, but it's still hard to believe.
There are no guarantees about
anything. There never were, and never will be. But I can’t wait to leave this desk so I can
see his face…again…for as long as I can. Apparently, our love, his face, both indelible too.
Much love.
(And if you are one of the few
who have followed all along, even into the canyon, a special thank you for your
healing, all seeing, love).
I love your contant keep it up ...
ReplyDelete