The hidden cost of chronic illness, and being a parent, in wartime

We’re fighting this war, my family is: me, a chronically ill and legally disabled 60-something, along with my wife and my two children, ages nine and five. And there are hidden costs, that you might find surprising, that we have to pay in this fight.

I don’t for a moment mean to imply that we’re making as big a contribution as the brave pilots and other soldiers risking their lives on the frontlines. But it’s us, just regular people who refuse to be cowed by Iran’s murderous and indiscriminate bombarding of our cities, that serves as a backbone of our tiny nation’s strength. What I see on the faces of my neighbors in the basement bomb shelter in the middle of the night is mostly not anger or fear, although both of those things are definitely there. Rather, it’s a kind of resignation that maybe is better called resoluteness. We’re not complaining, we’re enduring. Jews down through the ages have had to endure murderous hate. It’s not easy. But we have no other country. We live here, no matter what. We live as fully as we can, no matter what. We’re resolute and determined to live even more than we’re determined to fight. Not everybody understands that about us. But it’s our strength.

My efforts to live as fully as I can amidst this war are harder and more complicated than they are for some other people. Because I’m chronically ill. I’m on dialysis. I am a prostate cancer survivor. I’m a survivor of septic shock.

I’ve never been more grateful than I am now that I’m able to control my kidney failure with a special kind of dialysis that allows me to do my treatments at home, even if, may the Holy One forbid, we should lose electricity because of an Iranian rocket. Three times a day I have to spend 45 minutes or so exchanging a special fluid that sits in my belly, in the peritoneum. There’s no exchange of blood involved, there’s no need to take the risk of traveling amidst this war into a hospital three or four times a week.

But it’s hard. As much as the dialysis helps me, my kidney failure still makes me tired all the time, making climbing the three stories up from the basement bomb shelter back to our apartment especially difficult. And during those 45 minutes when I am hooked up to my dialysis bags with a permanent catheter in my belly, I am constantly conscious that I won’t even be able to get down to the bomb shelter at all if there’s a siren. That makes me have a little bit greater risk of dying during an attack. It’s part of the cost of being chronically ill.

The biggest effect on me so far of this war with Iran is just the exhaustion I feel all the time. Anyone could feel exhausted from having their sleep disrupted so much by nighttime attacks, especially if their health wasn’t so good to start with. But I’m also a person with young children. I didn’t anticipate how much just being around them would add to my exhaustion during a time like this.

It’s not just their usual demands for food and attention and something to do (“I’m bored!”). It’s that their expressions of their anxiety and their acting out (like the crying and whining about whether we have enough bags of Cheetos) serve as a kind of amplifier, an amplifier of all of my own voices of fear and terror and anxiety that are already bouncing around my head. It takes a huge effort to be patient with them amid this amplification of my inner voices. Voices that I would like to tamp down, so I could remain calm. (I definitely remain very grateful for my children and determined to be a good parent to them despite all this.)

Another cost I pay during this war because of my chronic illness is my loss of routine. I depend on my routines to remind me when I need to take medicines, eye drops, blood pressure drugs, etc. Now when I have no set bedtime or wake-up time because of the frequent interruptions at night by sirens, I’m constantly forgetting to take a medicine or finding it hard to remember if I did or not.

And then, there’s the sometimes frequent need to leave the house for my medical appointments. It takes me less than a half hour to walk to the nearby clinic where I get my monthly blood tests, but as I write this, I am dreading being out in the open for that long tomorrow morning. I’d much rather be able to stay at home, close to the bomb shelter. I have a waking nightmare of being caught out in the open and banging on a locked apartment building door, trying to get in as the sirens wail. It’s only because of my chronic illness that I need to leave the house at all.

But I do admit that I had a special kind of feeling when I went to the hospital for an outpatient appointment earlier this week. It reminded me of the feeling I used to get when there was a giant snowstorm in Manhattan when I lived there, and you felt like one of the chosen ones who got to be in a usually super busy place, when it was quiet and calm instead. When I saw this one nurse I deal with a lot, he greeted me like I was a long lost friend. And I was so grateful that my doctors showed up that day for the appointments I’d been waiting many months for. Real committed professionals they are, part of the resoluteness that is Israel. I really felt that resiliency’s presence there — that spirit, that determination to go on with life despite challenges that few people in Western countries can imagine — in the hospital halls. Grateful.