Uncle Tommy, My Patron Saint Of Sick Children

With Rebecca dying so quickly, I talk to dead people and wish they would respond.

Mostly, I talk to my Uncle Tommy.

Tommy would have understood.  Tommy had hemophilia, which meant that his blood clotted terribly slowly, which meant he could bleed to death from almost trivial wounds.

Back in the 1950s, hemophilia was pretty much a death sentence.  So Tommy spent literally a third of his life in hospitals – if he fell off his tricycle, he got sent straight to the Emergency Ward for transfusions.  He got so many needles stuck into him, and got so used to being on the children’s ward, that eventually the nurses brought him in when other kids got hysterical about the needles.  Tommy showed them it was no big deal, calmed them, this six-year-old kid with the big bruises everywhere.

When he got older, being something of a self-taught expert in phlebotomy, the nurses would actually let him give the other kids the shots.  This would never fly in these days of lawsuits, of course, but I’m told that the kids started requesting Tommy because even at eight, his hands were so certain and gentle that the shots never hurt.  And having had the privilege of Tommy’s hugs, I believe that.

And he was surrounded by dying children.

Tommy didn’t talk about it much.  Almost all the direct evidence I have of this is one drunken night with Tommy, when we went to New York on a weekend trip (as we often did) and got hammered, and Tommy talked about his childhood.  He didn’t consider it weird.  He had no other comparison, really.  He knew, objectively, that other kids didn’t spend ten days out of every month laid up in a hospital bed, but that was just like reading about kids in foreign lands.

And I remember him crying.  Tommy didn’t cry all that often, so it was a terrible thing, to see Tommy’s tears.  But he talked about his best friend on the ward, a kid he loved, who died.  I think it was leukemia that took his friend, but that could just be me filling in the details, and in the shadow of Rebecca that feels like a sickening gap.  Somewhere, in a hospital, there were two best friends and one of them died, and only Tommy lived to carry on this boy’s memory.  Then Tommy died.  And I don’t really know how I’d research that these days – the only person who might know is my mother, and she doesn’t recall – but Tommy’s best friend is lost in time, and even Tommy only survives, really, because he was lucky enough to have a writer-nephew who picked up his tale.

I think of that bobbing river of time, carrying us all like flotsam out to the sea, our memories sinking to the bottom of something dark and unseen.  Our lives, weighted and ultimately forgotten.  And I tremble.

And I think of how comforting it would be to talk to Tommy now, to ask what’s going through Rebecca’s head. Rebecca’s always been stubborn, slow to explain; you always got the idea she had a richly-imagined interior, but only allowed you tiny glimpses of it.  We thought we’d have time to work through that.  As it turns out, we won’t, and sometimes I just wish I knew what to say to Rebecca to help her, but I know that hammering on a kid until she shares is rarely helpful.

But Tommy would be my patron saint of sick children.  He’d know what dying children think.  He was one, once, and they were his companions.  He’d be able to tell me what he felt at five, knowing that he wouldn’t live until next year, how he processed it back then.

Tommy was forever warped by that experience.  Medicine caught up with him, every year brought a new life-saving technique that gave him another two years to live, and he surfed that all the way to his mid-fifties.  When transfusions and platelets became standard enough that Tommy could relax, he got HIV from a transfusion.  When he survived HIV for long enough that the first waves of good drugs finally hit, Tommy got hepatitis.  It was pancreatic cancer that finally took him down, and I’m still stunned that it did.  He seemed invulnerable – not untouchable, as he was frail and wheelchair-bound and groaned whenever he moved, but there was something implacable about his will to live.

But the time changed him.  He never really could make long-term plans.  Anything more than eighteen months out might as well not have existed to him.  That was glorious for a teenager, of course – he’d take me on shopping trips, pile music CDs and books in the cart, pay for it all with a credit card that he never thought he’d be around to pay off.  He focused on me in a way that a man with a future might not have, dropping everything to call in sick to work so we could go on surprise trips, bringing me into New York, and God how I loved him for that.

I look back on what he did with a man’s eyes, the eyes of someone who has a career and a mortgage and a job, and see how terribly irresponsible Tommy was.  But he was good for me.  He lived only for me, some times.  I was the last person he called before he died, literally an hour before he gave up the ghost, and we talked of books and how I was coming out there to stay with him until this was all over, and I suspect that part of the reason Tommy died that night is that he didn’t want me to go to all that trouble.

He died an hour later, in the hospital, alone.

But I was with him.

I know I was.

And I talk to Tommy, and I ask, So what’s Rebecca going through? and I don’t get a good answer.  My memories of Tommy didn’t hold that wisdom – he passed onto me everything he thought was valuable, but he didn’t think I’d ever need this and neither did I.  And hanging with my Tommy-ghost is still comforting, but with that the barrier between life and death is thick, cloying – Tommy could tell me, there’s advice he forgot to give, and what I wouldn’t give to sit by his couch one more time and help him set up his needles and watch Star Trek and ask, “So what happens when you’re young and know you’re about to die?”

I can picture him nodding.  I can picture him opening his mouth.  But I cannot picture the words he’d say, and I know he’d say something good, and it’s not there.

It’s not there like Rebecca won’t be there.

This world is gaps.  Full of empty spaces where we can’t quite connect to each other, which we bridge with assumptions and misunderstandings and forgivenesses, but there are still times when even my wife of fifteen years still does something and I have no idea why she did that.  I can ask her, of course, but it’s just a reminder that we never really truly know someone else – we know them in percentages, a little download bar filling up that never quite finishes.

Rebecca has an emptiness.  I want to ask her what she’s thinking.  But she was never a sharing child, and now she’s lethargic because the cancer is sapping her energy, and frankly dredging up those concepts would only help me and not her.  She’s already a kid in a fishbowl – you can see how she kind of misses the days when she was overlooked, when she could eat without a hundred nervous eyes watching her every move, searching for new symptoms – and pressing harder would be an unkindness.

But I could ask Tommy.

Oh, Tommy, I know I could ask you if only you were around, but you’re not, and so I ask you something else: please shelter her.  She will be alone and scared when she gets to Heaven, and yes she’ll have her grandparents, but she won’t have Uncle Ferrett and I’m egotistical enough to think that her Heaven won’t be quite complete without me.  You’ve been there, with all the other dead, and maybe this is a lie I tell myself to feel better like all religion is, but please.

When Rebecca gets to Heaven, take her hand.

4 Comments

  1. Leslie
    Jun 5, 2014

    Oh, that last line. I held it together until then.
    We just had Memorial Day weekend, which is the anniversary of my niece’s death. It’s always a time of remembrance for me, and this year I also thought about Rebecca – strange how easily we take kids we don’t know into our hearts. She is the same age as Kristin was when she passed on.
    When she died, it was like an explosion, sudden and shocking. I imagine what you are going through as similar, but worse – it’s as if you are watching the bomber from the start of the plot, knowing the inevitable ending but hoping against hope something foils it.
    I am so sorry.

  2. Lyn Belzer-Tonnessen
    Jun 5, 2014

    This is one of the most beautiful things you’ve ever written, and I wish to God that you could have not had to write it.

  3. Sandra
    Jun 5, 2014

    These gaps are one reason why I cannot fathom why, after all these thousands of years of evolving, we still injure each other, often so needlessly. The thought that some idiot politician could declare a war that could kill my son, my sister, you, out of hubris or lust for power or stupidity, is so terrifying that I cannot dwell on it for long. The fabric of so many peoples’ lives are so rent and torn by violence. And yet, people willingly do it, in masses, every day, and for so little gain.

  4. Katherine
    Jun 7, 2014

    You all might be right there waiting for her. Physicists say that time is not linear – it’s our perceptions of it that are limited that way. I like to think that once we die that constraint, along with all the others, will be removed. I don’t know if it’s true but it’s the best thing I can imagine: a big reunion of everyone we’ve ever loved – still living or not – waiting for us as we arrive. Nothing bad that happened in this life would be worth remembering. Pure joy.

    That said, this has still reduced me to quivering tears. My middle girl is very much like Rebecca in spirit – the attitude, the spunk, the sass. I’m going to go straight from this site to the CureSearch site to make a donation. It’s not fair and I’m so very, very sorry.

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