It's been a long time since I last said those words. Fifteen years,
today, as a matter of fact. Fifteen years since I sat on your hospital
bed, holding you and crying while one of the nurses who had become
family to us softly braided my sleep-tangled hair. I can still feel her
gentle fingers, but I can't remember who it was. That simple act, so
human and tender, gave me the comfort and strength to stay there
with you, let you know that it was OK to stop fighting for breath and
life, to let you ruined lungs and ravaged body finally, at long last, do
what they hadn't been able to do fully in years - rest, relax, and stop.
I was 25 when you died. I wasn't ready to let you go. I had thought
that if I loved you enough, I could love you well, genetics and the
harsh facts of cystic fibrosis be damned. I could love you well. When
the doctor told me you were dying and that it could take minutes,
hours, or days, but that there was no longer any hope at all of your
recovering, we were standing at the end of that fifth floor hall, and I
was staring out the window, feeling his hand on my shoulder, but not
the true reality of his words. I thought of the wedding we were
planning - I had deposits on two dresses, and shoes being dyed
specially. I thought of the transplant candidacy appointment
we had scheduled in Boston the following week.
And I thought of that window, and the two or three story fall
beyond, and if I could throw myself through it and onto the roof
below before he could stop me. Throw myself out the window
(although I am terrified of falling), and die first, so that I wouldn't
have to face either your death, or my own life without you in it.
But I had promised you, from the time we began our relationship,
that I would keep living after you died. You always knew you
would die. You said you would die before your 33rd birthday
(one week before my 26th). And you were right. On your 33rd
birthday, we buried your ashes.
I'd made a committment to you, and I was determined to keep it.
So I squared my shoulders and went to call my family.
"Tim's dying," I said to my dad, feeling how much effort was going
into your shallow, irregular breaths. You were literally drowning
in carbon dioxide your lungs couldn't release anymore; and each
breath made the problem worse.
"I told you that was what was going to happen," he said, and drove
a huge stake through my already broken heart with his words.
Then I found the nunbers for your family, and gave them to the
nurse, there by your bedside, and sat with you while they were
called. I couldn't bear to leave you, or to speak to any of them.
There I stayed until I was told your family was on their way
(that upset me a little, because I remembered your words,
"I don't want my family there with me when I die. Only you.")
and the nurses said they were going to give you a spongebath
to help you feel more comfortable. So I went numbly to wait in
the nurses' break room. Only halfway up the hall, the nurses
doing your bath came out. "Hurry, Tim needs you now."
And so I ended up on your bed, where we had snuggled, where
you had proposed, and where, once, a nurse had walked in on us
while we were making love (you were often in the hospital for
weeks, and, until the last week or so of that last stay, you had a
very typical male libido!).
It was fitting that you should die there, and I should begin the rest
of my life, maybe. I remember watching your epic struggle for
those last breaths, and how, after i told you it was OK to go now,
to rest, you only drew two more - and then you were still, and I
went immediately from the intensity of "we" to a desolate and
lonely "me."
You'd always told me you couldn't relax, that breathing was too
much work to allow it. Seeing that it was utterly true helped me
through the dulled agony of what followed: Your family coming,
looking at you a bit like some tragic display. Riding to your sister's
house in the back of her car, beside your brother, hugging the teddy
bear I'd bought you for Valentine's Day, and sobbing uncontrollably
when the radio played, "Carry On My Wayward Son". Remember
how you never wanted to play Kansas, because they made me cry,
and then so would you? Well, I don't really listen to them anymore -
I gave your CDs to your friend Mark, because I knew you'd want him
to have them. But when they come on the radio, I smile, and tears
come to my eyes, and I remember you.
I never lived alone, before you died, and at first I felt so utterly
lost in our apartment that I stayed at my parents' for a week.
But then I came home, because I could still feel you there, and
I wanted to be where I could feel your support as I began my
life anew. I made cleaning the place up the way I always wanted
to, for you, my top priority. It was a gift for you, it was something
to fill all those long hours that used to be filled with your therapies,
long lazy talks, lovemaking, and delighting in your company.
I had to reinvent myself. I couldn't stay your fiance; couldn't
marry a ghost. And I had promised you I would live, and travel,
and that if someone found me who could love and take care of me
the way you always wanted to, that I would let him. I made a few
false starts, and learned from some of my mistakes, and, a bit less
than two years after you died, I met Jim. I know beyond a doubt
that you would have liked him. He has a similar gentleness, the
same type of quirky humor (he referred to himself, in our dating
days, as "my large interactive teddy bear". So much like you
saying you'd come back to the hospital because you'd bought it,
and wanted to make sure they were handling your investment
properly.
I resisted at first, but eventually remembered my promise to
you and let this amazing man love me the way he was waiting to.
We were married on August 23, 1997.
Marrying Jim was a very smart move, just as loving you was. I
couldn't have become the partner I have become, for him, without
having loved you first. I was so damaged by my childhood, the lack
of trust, the fear, to really share my thoughts and feelings. You
bore the brunt of that, on top of the numerous effects of having
lived 27 years before your CF was diagnoses and treated. you
were patient, kind, and never ever told me I didn't deserve to feel
as I did. With you, for the first time in my life, I was free to simply
be whoever I was, in every moment. That freed me to begin to
truly discover who I am and what is most important in my life.
Marrying you would've meant giving up the chance at children.
Though I'd always imagined being a mom, I was willing to give up
the abstract concept of children for the reality of our love. And
so the birth of Jeremiah in 2001, and Annalise in 2004, seem so
much more miraculous. Even the 2003 birth of Elijah and his death
12 days later were made more bearable by knowing I had survived
your death, and would survive his, too, no matter how wrenchingly
shattering it was in those first horrible weeks. Parenthood is a
journey like no other, and I think the selfless love I first experienced
from and with you helps tremendously. It lets me, more and more,
see my children as they really are, and love them as-is.
I know I've made some choices you wouldn't have, and that used
to really bother me. Over the last few years, though, I've realized
that you never wanted me to owe you any more of my life than what
we'd shared willingly with each other. I own my life, and I need to
make the choices that work, for myself and my family, now. And
I think you would completely understand that. We live a blissfully
happy life, here, and you have something to do with that.
If I had any regrets about the time we spent together, it would be
that I wasn't nicer to you., I didn't understand, yet, that you were
already preparing to die when we met, that you were too tired to
"rage against the dying of the light". I thought if only you would try
harder.....I was always trying to get you there, to that strong place
where you could live. But I could never provoke you to fight, even
though there were times when I was a complete bitch.
You just kept on loving me, no matter what I said or did in my rages.
You did it in your own quiet, humorous ways, and, when the storm
blew past, you always said there was nothing to forgive. I had never
before felt such unconditional love and acceptance, and I'm still not
as good as I'd like as giving it (although finally, halfway through my
40th year, I am getting better at it.). Before you, I never knew that
I deserved that kind of love, and a lot of my anger was really
poorly-masked fear, that, if you died, I would never have that type
of love again.
Without you, Tim, I would not be who I am. There is a place in
my heart that remains yours - as we used to say, "Always, Only,
Forever". Jim and the children know about you, and have seen
the few pictures I have, and heard stories about you. Because
you are a part of me, and, to understand that part, they need to
know you, too, as much as they can through me.
I don't know if any of this will make any sense to anyone but the
two of us. Maybe, like the delight of a rambling conversation
where there is no destination, only a delicious journey, it just *is*,
and that is OK. Maybe, like all the letters I wrote you just after
you died, when it seemed I could still feel you, smell you, taste
you, and hear you everywhere, where I kept seeing men who
looked so like you that I could not stop staring at them, it's just
a way to reconnect and explore again the gifts I've received from
the time we shared our lives.
You will always be there, within my soul. We never took vows in
fact, but we were faithfully married, in our souls. You gave me the
best of yourself, without hesitation, for the rest of your life. It
truly was "till death do you part." I thank you for that, and for
letting me know that I was worth that to you.
It's time to let you go again, because my family will be home soon,
and this writing has made me a bit too thoughtful and melancholy
for the jubilant spirits who will soon fill up this little house.
I will leave you with the Shakespeare quote I most associate with you.
Doubt thou the stars are fire,
Doubt that the Earth doth move.
Doubt truth to be a liar,
But never doubt I love.
Doubt that the Earth doth move.
Doubt truth to be a liar,
But never doubt I love.
I love you.
Your "Honey Dee"
The Unfettered Life - living, loving, unschooling
www.memismommy.blogspot.com
Beautiful.
ReplyDeleteJust saw this comment...Tim was beautiful, And he made me a much better me. Now it's been very nearly 19 years, and I still tear up when I read this, and remember.
DeleteLovely. Thank you for sharing. I have a couple of cousins with CF.
ReplyDeleteA belated thanks, Frank. CF is a very labor-intensive disease. I think TIM spent, at one point, ten hours a day on them. Maybe it would have been better if he'd been diagnosed as a child.
DeleteI hop your cousins are well.