Foot Soldiers

Tom, Laurel, and Tom Nealon

For us, the Boston Marathon started on Sunday, April 14^th.  As has been the pattern in the last four years, we were invited to a brunch for the ALF’s Run for Research Marathon Team. It’s always a cool event. This year was the 25^th anniversary of the formation of the RFR Team. They put together a clever video which consisted of interviewing other team members about their most bizarre chafing areas, how to spell cirrhosis, and to show their “finish line faces”.

Tom and Courtney at the brunch

There was also a wonderful speaker, Laurel, who told the story of her illness, transplant and recovery.

And then the ‘drumroll’ while they announced the current funds raised – which was a wonderful 1.1 (and more) million dollars.

We left the runners with our good wishes, and promises to see everyone after the race back at the Westin Hotel to celebrate.

The next morning we arrived somewhere around 10 or 10:30 at the “Liver Mile” (mile 16.8) in front of the Newton-Wellesley Hospital. We greeted old friends, mostly liver patients and their families, the ALF staff, and of course, the New England Organ Bank who sets up their table next to us.

Elizabeth, Diana, Celinda

The weather was fantastic, the music from the NHW ERG spot was loud and energetic, and the free BBQ lunch was delish. We planned to leave around 1:00 to head to Boston. I was tracking several runners on my phone, and we realized that Courtney, who was one of Tom’s transplant nurses, was going to be coming by our location soon, so we decided to wait for her.

After she went by, we headed to the subway, clutching our VIP finish line passes. The next plan was for us to meet Courtney at the finish. It took a while for us to stow our chairs in the truck, and then hike back down the hill to the MBTA stop. It took even longer for the Green Line train to get to the Hynes stop.

Finally, along with many excited Red Sox fans (the game had ended by now), we made our way to Boylston street and began working our way to the finish. And I had just received a text alert that Courtney crossed the finish line at 2:48.

BANG. Smoke.

“What was that? A bomb?”

“No, maybe not, maybe just a loud musket/canon for the Marathon. Or maybe a restaurant stove exploded.”

Another BANG and more smoke. Now the bomb question seemed more apt.

 

The crowd was pretty thick where we were, and everyone started asking each other what had happened. We saw a good amount of smoke up the street, and no one really knew what to do. Some started towards the smoke, and some retreated. Very soon there were cops telling us to move back, get off the street, NOW. 

We moved back and got on the sidewalk. Still there was that state of unease and confusion. After a few minutes of questions and wondering, we realized that we should just head for the Westin Hotel. We had to divert our travel a few blocks out of the way to get there, but that was OK. Cell phone service slowed down to non-existent.

So many ambulances

Now, we saw no carnage, no damage. We would never get close enough to see anything, (which is just as well). But what we did see was unsettling just the same. We saw runners with their space blankets wrapped around them. They looked displaced. We kept seeing the confusion on everyone’s faces, but we also started to see tears. Tears and comforting. So now we knew something big and bad had happened. 

As we got a little closer to Huntington Ave, we saw Donna, a woman whose son, Scott was a very active member of the RFR. We asked her to come with us to the Westin, and as we moved along, she told us that she’d heard from family members at home who were watching the news, and that there were reports of fatalities and lost limbs. She had not heard from Scott yet, but was pretty sure he had not reached the finish line, and therefore was safe.

And right before we got to the hotel, we saw another RFR volunteer, Alice. Alice’s significant other Jim (who ran for Tom last year), was still out on the course, somewhere, but she too was pretty confident he was safe.

Finally, we got up to the fourth floor where the ALF had the post-race headquarters set up. Right away we were hugged pretty tight by Lauren and Helen from the ALF. All they knew was that we had left Newton quite a while before, and were supposed to be at the finish line when the bombs went off.

No one had heard from Courtney yet, she had not checked in.

So we waited. We made small talk with a few runners who had already come back, compared notes with them and other family members waiting for their runners. Slowly phones were working OK again. I had voice mails, Facebook messages, and texts waiting. All asked the same thing, “Are you guys OK?? Call as soon as you get this!!”

After a while, only a very small number of RFR runners were coming back. By now, someone found a radio and a group formed around it, listening for whatever news updates were available. MBTA service was down. There was a reported fire or some disturbance at the JFK library, and the airport was closed.

Blurry photo of SWAT officers

And soon we learned that the hotel itself was on lockdown. No one in or out. And then we also realized that the floor below us was being used as a command center for the Boston Fire, Police, FBI, the Governor, and more. The escalators were shut down.

It was waay too much like 9/11. Too many conflicting reports, too much confusion, way too much fear.

We were safe enough, but the uncertainty was not easy to take.

FINALLY, Tom spoke to Courtney on his cell. She was fine. But – the explosion happened right near her. I can’t imagine the chaos she witnessed. She told Tom that she was SO glad he was not there with her. 

I’ve been hearing and reading on Facebook how this act will not deter us Bostonians (either by real estate or by heart) from being strong. Some of my “liver friends” are vowing to run next year. My Tom was already planning on it before this happened, now he is even more inspired. Or folks are planning to go ahead and attend big sporting events in town. And our other son Mike is full speed ahead with his plans to attend Comic-Con on Saturday. 

There was a great interview on WBZ TV yesterday. I’ve had these same thought swirling in my head before I heard Dan Soleau, a manager at Marathon Sports speak.  (Please take a minute to check it out - I'll wait.) I love it. Individual foot soldiers.

We’ve all got to handle this in our own way though. Humans can only handle so much, and then there’s a tipping point of saying, “No. I’m done. I can’t do any more, at least not now.” There are those who will shake and sweat at the thought of being in any large group, especially if they were at the blast site on Monday. That’s OK. We’ve got your back. We’ll go to the events, large and small, and we’ll think of you.

Others will never get on a plane again. We get it. Next time we fly, we’ll think of you too.

If someone else feels they must hang up their running shoes, then that’s OK too. Someone else will run for you in their hearts. Rest easy now. 

Being human is hard. Even if physical ailments don’t strike you, emotional struggles always will. I believe in trying a little harder when you can. I also believe sometimes you just need a break.

There was some kind of email/internet meme that was popular several years ago. It was about being a mom. Something like this:

“God bless the moms who wake up at 5:00am to bake cookies for the 4^th grade party. And bless the moms who could not.” I loved that. It’s wonderful to celebrate those who do a little extra. Like marathoners, who ran to give blood. Awesome! But sometimes a person can only run the other way. And that’s OK too. 

We'll be your foot soldiers

A Day in the Life...

A tense ride on 93-S to Boston. Why at 10:00 am is there such a backup? Tom alternates between vomiting, moaning, and falling asleep. We try to hold his hand while he vomits. We try to make sure he’s breathing, that it’s genuine dozing, not unconsciousness. Not that he’s ever slipped into unconsciousness on our watch, but you never know.

It all started a couple days ago with a peculiar headache. Localized to above the left eye, this came on out of nowhere. While it was uncomfortable, Tom was able to go to school and also get to a couple of appointments including physical therapy. But by Friday morning, the pain became intense, the intensity brought nausea, and then vomiting. Early morning call to Boston, they say to bring him in to the clinic office (as opposed to the ED, where he’d sit for too long).

High blood pressure was suspect. Now Tom has never had problems with either a headaches or high BP until this week, so this is all new, and frankly, quite scary. One of the first things Tom whispered to me in the early morning was, “do you think I’m having an aneurism?”

Dear God, I flippin’ hope not.

Hours later, Tom is resting in a room on 10 South, his usual floor. And to think that just three days previous, he and I were visiting a friend recovering from surgery on the Northwest wing of this same floor. I know Tom was enjoying being a visitor for a change, instead of a patient. Now he’s the one in the bed. Again.

Oh look, a uniformed officer stands guard at a patient’s doorway in the room across the hall. It’s not the first time I’ve seen a cop or hospital security standing in the doorway of a room, either on a floor or in the ED, you know, big city hospital and all that. (It’s never clear though, exactly who is being guarded, the patient, or everyone else and darn-it, I’m too polite to stare.)

I’ve been in this place many times, to paraphrase Leonard Cohen, “I know these rooms, I’ve walked these floors”. My moods are variable, and yesterday I was more depressed and on edge. I am taking a lunch break in the lobby, and I stare with half-focus at the constant stream of people walking in all directions, to and from elevators, main doors, the CVS, etc. 

I guess they all fall into different categories, but there are certain visitors that cause me to drop my gaze, avoiding eye contact. These are the moms and dads with paper name labels stuck to their shirts. These labels have just a last name, and it means that they have a child undergoing surgery upstairs on the third floor. Sometimes these parents look nervous; actually they almost always look nervous at some level. But there’s another look I sometimes see, something I read as their whole body shuffles along in slow motion. They are shell-shocked. These are the people I can’t bear to watch, because I see myself reflected in their disorientation, in their fear, in their exhaustion. I don’t want to be reminded of my own pain. 

I definitely have no problem reaching out to someone who needs help. I’ve joined in the 60 second elevator commiseration thing with random people. I’ve had long conversations with other parents in the surgical waiting room. I’ve compared notes with a dad in the common kitchen while we were searching for the last grape Popsicle – 

Me: “yeah, my kid has a nasty GI infection”

Him: “my kid has no stomach” (said with no anger, just matter-of-fact grace).

"Watching the Machine" Sculpture by George Rhoads. Manhattan, NY. - Beyond My Ken.

But when I’m really in the tense frame of mind, I have to be selfish and turn inwards. As I side-step the stroller-bound kidlets staring up with mouths agape at the somewhat annoying perpetual motion machine, as it clanks and chimes, clacks and dings, I get weary of the sameness of the routine. As this huge sculpture perpetually entertains new crop of patients and their families – I just want it to be all over with – I want at least a diagnosis, and at most – to not be here at all.

I feel trapped inside that huge 12 x 6 x 14 cage of wires, balls and brightly colored shapes. I’m moving on a path not of my own design, and there’s no natural conclusion, just the same thing, over and over. Or maybe another way to look at it, the path is NOT clearly laid out, the way it is in George Rhoads’ sculptures. Sometimes it feels more like Disney World’s Space Mountain. Huge dips and swirls, but it’s all in the dark. I don’t know that’s ahead.

I don’t know which is worse.

The Kindness of Strangers

I'm amazed really, at how much it hurts. Each time that Tom goes through something, and after he's getting better, and the care-giver adrenaline subsides, I'm left with a wound. It hurts, and each time it surprises me at the severity and at the recurrence. 

Oh, and the timing. 

That's the kicker. It's been a little over a year since Tom had his transplant, and I think we all thought that most of these sorts of days and worries would be behind us. Yes, we expected some new worries; the rejection question, and his susceptibility to illness would be the big ones. But this other stuff, the CVS* type of sickness, or whatever it was that plagued Tom from November to March and caused him to lose over 30 days of school this year, no one quite expected that.


Yet, here it is, back again, for a brief stop or an extended run,  or something new is going on.


He's fine now, sort of. The Make-A-Wish trip/getting ill thing was horrible (and the Memorial Day weekend illness was a bit scary), but he made the best of it and at least got in the last day of E3. Fine for the rest of the time, and for the trip home. And he was fine for his last week of school/finals, and fine for his first week of summer vacay, but last night -  he vomited.


It's makes me sound a bit mad - getting all dramatic about a puke session. But when this has happened again, and again, and again, and again, and again, and then wethoughtitwasoverbuthegotdreadfullysickinLA - the drama is already built in.


Last night was hopefully a one-off. It could have been anything. Food at Chunky's didn't sit well? He was overtired from two sleepovers this week? Who knows. And he felt better after that one vomit. Been OK today, just a little tired.


And we've mostly recovered from the LA thing, that wound is healing. 


But I am covered in bruises. Not the cool kind I used to get at the dojo, although I feel like I must have earned some sort of new rank by now.  


These bruises are quite invisible, but just as real. These ones though, I didn't expect. I'm really sucker-punched, each time.


However...


I'm also hugely and amazingly amazed at the "kindness of strangers" Did I say amazing? I'm having a hard time processing it still.


Now I would imagine that an organization that knows they are dealing with a Make-A-Wish recipient is going go out of their way to please the kid. That makes sense. But what happened with Tom - I still don't know how to describe it.


Well, he's been getting stuff. Lots of stuff. I was putting pictures on Facebook, but I'm not going to do that anymore, I don't think. I don't appreciate these gifts any less, but I'm thinking it will look "showy". We pretty much expected these items, because all the gaming folk showed Tom stuff and then promised to ship these items out, but it's almost too much.


Don't misunderstand. This isn't a criticism of the gamers. It's incredibly cool. And we are receiving things in the same spirit, we get why they are doing this. 


But when I consider all this generosity, I'm still at a loss to describe how surreal it all feels at times.

This Reads: "We'd like to thank Tom Williams and his family for supporting our family. Bethesda Softworks" Yes, really.

But for now, I'll leave it with "humbling."


*Cyclic Vomiting Syndrome

Love and Loss

I read something today that was sublime. The most rational yet dreamy treatise on love and loss and acceptance - by horror author Dean Koontz.

From Odd Hours:

"Grief can destroy you - or focus you. You can decide a relationship was all for nothing if it had to end in death, and you alone. Or you can realize that every moment of it had more meaning that you dared to recognize at the time, so much meaning it scared you, and you just lived, just took for granted the love and laughter of each day, and didn't allow yourself to consider the sacredness of it. But when it's over, and you're alone, you begin to see it wasn't just a movie and a dinner together, not just watching sunsets together, not just scrubbing a floor or worrying over a high electric bill. It was everything, it was the why of life, every event and precious moment of it. The answer to the mystery of existence is the love you shared sometimes so imperfectly, and when the loss wakes you to the deeper beauty of it, to the sanctity of it, you can't get off your knees for a long time, you're driven to your knees not by the weight of the loss but by gratitude for what preceded the loss. And the ache is always there, but one day not the emptiness, because to nurture the emptiness, to take solace in it, is to disrespect the gift of life."

The Landscape of Grief

Writing has always been a cathartic exercise, and a look around bookstore shelves or right here on the blogosphere will testify to that.

So, on this day of September 11, the gorgeous weather gives us the same incongruity as it did seven years ago, how can we reconcile such beauty with such horror? Many years ago, I attended the funeral one of my husband's best friends. He had killed himself, so this was such an uneasy tragedy. I also remember the sunny day felt like a slap in the face. How can nature dare be pleasant, when so many were in pain?

Of course, there is no answer to that. But I'd like to think that when the sun is shining so beautifully, it'll give comfort, and guide us through the murky grief landscape we all must travel.

I wrote the following piece, which was published yesterday at Blogcritics Magazine.

A Wednesday Afternoon Listen
Dropkick Murphys – The Meanest of Times

With respect and homage of sorts to my friend Mark Saleski – I am borrowing his well-done column idea for my own today. It just seemed the right thing to do.

Tomorrow being September 11, my thoughts naturally drift back in time. I was talking to my older son, discussing why 9/11 was not a national holiday. I said that we need to send a message that we are not cowering, not whimpering. Memorializing and praying, yes. But we are surviving. Maybe even business as usual. We are defiant in the face of terror, however muted with time it might be.

It’s that quiet, somber reflective feeling that gives me the strength to feel that defiance. Seven years of healing helps. But on this same day, my husband prepares to help and support his friend and colleague Jim, by attending the wake of his son Joseph.

Joey Larracey, 16, collapsed after a football scrimmage last Friday night, Sept 5^th and died later that evening. And his parents, family, and the whole community are lost on the most treacherous grief terrain. They don’t have the sedating comfort of time that smoothes the rough footing of this savage landscape.

The Dropkick Murphys have felt all of that. I don’t even have to know them personally to know that they suffered. It’s in their songs. You hear it in their adaptation of “Green Fields of France” (Warrior’s Code), a poignant anti war song. You can’t miss it “Last Letter Home” (also from Warrior’s Code), a collection of real letters to and from Andrew Farrar, a Marine who died in Fallujah in 2005. DKM sounded absolutely pissed off in that song. Damn straight.

But today as I drive through the beautiful September sunshine, I listen to “Never Forget” from Meanest of Times. And I play it full blast.

“When you got love and we got family
Keep 'em close and don't forget
To hold them right there in your heart
When you got love and family”

May all the strength of God, friends, family and Love support the Larracey family in these very meanest of times.