Echo of Hope

(Ari and Lexi)

On September 9, 1965 Commander James Bond Stockdale took off from the air carrier USS Oriskany in his A-4 Skyhawk jet and was shot down over North Vietnam. He remained a Viet Cong prisoner of war at the Hanoi Hilton until February 12, 1973.

During his seven and a half year imprisonment, he was regularly tortured and denied medical care. Four years into his captivity, he was shackled in a shower stall where he was subjected to incessant torture. When he was told that he and his fellow POWs were to be paraded in public for North Vietnamese propaganda, he slit his head with a razor and beat his face to a bloody pulp with stool so they could not use him.

For years he and 11 of his fellow POWs were kept in solitary confinement locked in leg irons in 3 by 9 foot concrete windowless cells with lights on 24 hours a day. While several of his colleagues didn’t fare as well—some dying in captivity—Commander Stockdale was able to cope and survive. He later became the president of the Naval War College, the President of the Citadel, a fellow at the Hoover Institution at Stanford, and Ross Perot’s vice presidential running mate in 1992.

In the book Good to Great, Stockdale had the following to say about how he survived not only physically, but mentally:

I never lost faith in the end of the story, I never doubted not only that I would get out, but also that I would prevail in the end and turn the experience into the defining event of my life, which, in retrospect, I would not trade.

Describing which of his colleagues didn’t make it out, he had this to say:

Oh, that’s easy, the optimists. Oh, they were the ones who said, ‘We’re going to be out by Christmas.’ And Christmas would come, and Christmas would go. Then they’d say, ‘We’re going to be out by Easter.’ And Easter would come, and Easter would go. And then Thanksgiving, and then it would be Christmas again. And they died of a broken heart.

He also said:

This is a very important lesson. You must never confuse faith that you will prevail in the end—which you can never afford to lose—with the discipline to confront the most brutal facts of your current reality, whatever they might be.

Knowing he was going to make it out someday, yet facing the brutal reality of the situation in all its pain, uncertainty, and misery, has come to be known as the Stockdale Paradox.

Everyone always asks how we get through the days, knowing we’re in a war filled with pain with no end date, our lives on hold, and uncertain outcomes. With inspiration from Admiral Stockdale, I know we’re going to get through the other side, just not how, when, or in what shape. We will assuredly bear the scars and feel the pain, but have this particular war in the rear view mirror.

Also, we’re not exactly happy with what’s going on, but I’m not so sure that matters so much. There are a lot of happy moments, but every moment is meaningful. I believe this matters more.

As for the war, here’s what’s up:

• Ari’s cath in the summer showed he was in congestive heart failure.
• After a challenging 2 weeks at the hospital, he was placed on the heart transplant list. (During this stay, we welcomed our son Eli into the world).
• We were told Ari had an 80% chance of surviving the wait, and an 70% chance of surviving the first year. That’s 56% from here to the other side.
• We went home on a direct infusion medication called milrinone which was delivered 24 hours a day from a pump Ari wore on a backpack through a peripherally inserted central catheter (PICC) line.
• We had a nice fall playing soccer, baseball basketball, golf, and more. He enjoyed pre-school, now with Lexi.
• His PICC line fell out 2 times requiring surgery each time, eventually being replaced by a central venous line (CVL).

(Ari signs with the Assumption College Baseball Team. Members of the team have been by regularly to hang out and play games with Ari at the hospital. Thanks guys.)

We took him to Boston Children’s Hospital late in the afternoon on December 10 after he threw up and spiked a fever around lunchtime. By the time we got in it was a full on emergency. He went straight up to the cardiac intensive care unit where we stayed for 5 days. His medical team was “impressed” with how he came in, and not in a good way. After just several hours of being sick his kidneys were close to shutting down.

You can’t get a heart transplant unless your kidneys (and everything else) are healthy.

Meanwhile, his sickness was due to an MSSA infection in his CVL. It was pulled immediately, and a day later his blood cultures were clear of infection.

(Ari golfing with his doctors, raising money for the Ethan M. Lindberg Foundation)

However, because he has replacement valves and at high risk for endocarditis, he needs to be treated for 6 weeks(!) of IV antibiotics at the hospital. He’s been on vancomycin, oxacillin, gentamicin, rifampin, and Zithromax at varying times since. Imagine if you’re on amoxicillin your system is getting pelted with a BB gun. Ari is currently getting shelled like the beaches at Normandy on D-day.

He slowly got better, got a new CVL, and moved to the floor. Last week he got sick again, though, and it’s been pretty awful. Fevers of 103 through round-the-clock IV Tylenol. Blood draws to test for endocarditis. Constant nasal swabs for many viral studies. Nights have been miserable. Needed Ativan to break the cycle of coughing fits and to get some rest. De-satted once prompting a nice crash on the room. (He recovered quickly.)

Neither one of us got any sleep for two nights. Last night he was better, though Erica and I weren’t as fortunate as Eli had a little ambulance trip to Emerson Hospital for what turned out to be BRUE. He’s fine and was peachy happy the whole time, but long night into the morning for Erica and me.

The idea for Ari from here is to get over this virus, or drug fevers and side effects, or endocarditis, or whatever it is, and get back on his feet.

(Ari and Eli)

The big news we haven’t yet shared broadly is that it is unlikely we are going to get discharged. Consensus is Ari is too fragile to go home until transplant. If he gets sick and his kidneys, liver, or anything else can’t recover fully, he won’t be a transplant candidate. This is not something we are keen to risk, so it’s likely we are in the hospital for the duration until a call comes with a new heart.

This can take days, weeks, months, or even more than a year (though that isn’t likely). Meanwhile, I’ve moved in with Ari at the hospital and will work from there until this is over. Erica will stay at home with Lexi and Eli, and we’ll switch it up here and there, and do lots of visits, so we can all see each other.

(Ari and his baseball teammates)

Before I close up, wanted to say a huge thanks to everyone that has helped us. It’s difficult to ask for help, but we need it. So many of you have jumped in to support us. I can’t express enough the gratitude we have. It’s amazing what a village can do, and how inspiring people can be when you give them the chance.

Special recognition must go to family member and third parent Katie who is there for us and the kids day and night, Uncle Dave whose sleepover parties give me a chance to go home and see Lexi and Eli, Grammie Linda who does everything and more, and Stan, my amazing dad, who comes to the hospital 7 a.m. every morning to help watch and care for Ari while Erica (who is amazing and awe inspiring) and I try to keep all the plates spinning. Thanks for everything almost 43 years and counting, dad.

In the meantime, for me, I’m not losing faith in the end of the story. I know Ari will prevail, I just don’t know how or when. Meanwhile, we face the stark and brutal reality, the defining moment of our lives.

Still in the midst of the battle, I would not trade it.