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Seeing and Naming the Difficulty

Tonight I miss my hammock swings and warm afternoons. Some of this is just regular mid-winter blues. Most of it is the fact that I’ve been nursing sick kids, sick me, sick husband for more than three weeks now. Logically I can see that we’re wending our way toward being well. That has been true ever since last Saturday when a doctor finally listened to me and agreed that we needed antibiotics. We’re getting better, but it is happening slowly. Today we had a set back. Link somehow contracted stomach flu. (Howard’s flu did not have a gastrointestinal component.) No idea how Link did that since he’s not gone anywhere but the doctor’s office for more than two weeks, but he’s got it. We traded post-cough vomit for empty-your-stomach vomit. I just want him to be well. I want him to have his life back. Today is not that day.

I remember reading a section of Cory Doctorow’s Little Brother, where the hero had been through a traumatic experience and was called on to describe that experience to someone else. The hero struggled with what words to use because it had been the hardest experience of his life and yet he knew that there were other people who’d been through even worse things. No one wants to be mid-lament, only to look around and realize that everyone else thinks you’re making a big deal out of a small thing. On the other hand, I’ve also had the experience of telling my story to an audience who then is so aghast at what I’ve been through that they then have their own grieving process because of my words. It is hard to know, in advance, how a difficult story will be received.

So the past few weeks have been very depressing and isolating for me. They could have been far worse. I was always aware that illness arrived with an expiration date. Whooping cough lasts 6-10 weeks, it is just that when you’re on week three of exhausted sickness, “only three to seven weeks to go” just doesn’t feel comforting. With the exception of the quarantined days, we were able to take care of ourselves. But I was far more tired and less focused than is usual for me. Howard suffered from flu and was even worse. I narrowed my focus, then narrowed it some more. During the first week of absences, I tried to contact teachers and collect homework. But then the kids were too sick to do the work anyway and I didn’t have the emotional energy to talk to more teachers. My well of sympathy tapped out to the point where my kids would need it and I had none to give. I let it all slide.

Part of me wants to qualify all of this by saying our lives were never in danger. And they weren’t, not really. Whooping cough is miserable but only dangerous to the very young and very old. Yet in those gasping moments when coughing has emptied my lungs and my throat has spasmed shut, my body was convinced it was going to die. For a minute or three I would alternate between coughing and gasping. Repetition taught me that I wouldn’t die. Logically I knew I wouldn’t, but adrenaline surged anyway, the body’s instinctive reaction to obstructed airways. I was shaky and weepy afterward. So were my kids when it happened to them. I would sit in my house and hear the whooping coughs resound from all over the house. I hated that sound with an adrenaline-driven vehemence. I can’t imagine what it would be like to try to tend a baby or toddler through those coughing fits. It could have been so much worse. That knowledge makes me feel like I’m just whinging.

But I am not. I am trying to record an experience so that I remember. So that when someone I know becomes ill, I can remember how much small kindnesses meant to me. So that I can remember what things I most needed and I can then offer those things. I’m not going to expect me to transform into an angel of mercy quite yet. We’re still recovering. I’ve still got to figure out what things I’m going to attempt next week and which things I will continue to ignore. because I can only do so much.

I’m also recording this, because there is no suffering Olympics. It is not a competition where some suffering is deemed worthy of sympathy and other suffering is not. I’m allowed to complain. I need to remember that, because I’m not very good at letting myself recognize my own negative emotions. I am allowed to complain when things feel hard, even if I think that someone else would be happy to trade for my hard things. It has been hard. It is still hard even though we’re on the way to being better.

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6 comments to Seeing and Naming the Difficulty

  • Ernest Interlocutor

    Vaccine? Isn’t there a vaccine for whooping cough?

    • Yes. The pertussis vaccine is supposed to prevent whooping cough. We’re all vaccinated, which made our having it something of a puzzle. I learned from the county health official assigned to our case that there is a second bacteria which can also cause whooping cough. This bacteria is less common and makes people less sick. It is called parapertussis. However there is some preliminary evidence (http://www.cidd.psu.edu/research/synopses/acellular-vaccine-enhancement-b.-parapertussis) that if one is vaccinated for pertussis and then catches parapertussis the resulting whooping cough is just as bad.

      Most of our vaccinations are 3-6 years old (on schedule). The one kid who had her vaccination update last year was barely sick. The rest of us are still recovering. So I definitely recommend getting the TDaP booster.

  • Joy2b

    I’m glad you’re writing this. To my mind, these moments define parenthood as much as the good ones. We may want nothing more than to lie down, but we keep going when we have to. You’d never look down on a parent for admitting that newborns are hard. If they’re kind and humble enough to talk about how they managed that hard time, they deserve respect for it, right?

    There are other reasons it may be worth writing. In a few days, it may all blur together, and you may be inclined not to share it anyway. Without the families in the Pacific Northwest talking about Pertussis hitting them, I would have assumed that childhood immunizations are enough to prevent it completely. Without you writing about this, I wouldn’t have known that pertussis isn’t the only thing that can cause a whoop, and I would have blithely assumed that boosters are enough. Now, I know to listen for the whoop, what to tell the doctor, and that if it comes, I should stock up on lazy food & cough drops, provide a trash bucket for each sick person, and wash up well before and after doctor visits.

    By the way, I looked into parapertussis (mostly because I find reading medical papers soothing). Unfortunately, I can see why the negative culture doesn’t provide a clear answer. Several germs that can cause pneumonia or bronchitis are capable of causing a whooping cough. However, our research hospitals tend to be the places the US learns about diseases, so anything “mild” enough that it doesn’t usually require hospital care isn’t going to be well documented. http://www.medscape.com/viewarticle/482815_1

  • It seems like immune systems are really genetic, either that or really random. My family almost never gets sick, but other families get sick all the time. There are probably some dietary and environmental variables, but so far as I can tell from reading your blog the past year or so, those things aren’t so far removed from mine that it would make a major difference.

  • Extended illness can be a real trial. In many ways my pregnancies–my first one in particular–have been like this. I was sick for 20-25 weeks, much longer than is typical for pregnancy. I’ve got a friend with a chronic illness and we’ve compared notes about how people understand being sick for a little while–a week or two (or 12 weeks for pregnancy). But when things start extending longer, it’s so outside of their perception of normal that they can cease to be helpful and sympathetic, and often start exhibiting less helpful traits like trying to blame you for still being sick. If you did this or that, you wouldn’t be sick anymore, or you wouldn’t have gotten sick in the first place. The various suggestions vary depending on the illness and symptoms (I got a lot of suggestions about what I should eat), but they all seemed to be coming from a place of not understanding how to deal with extended or chronic illnesses. People want an easy explanation and answer for what is wrong and how to fix it, but the reality is that when you’re sick for a long time, there’s often not any easy answers, particularly to the getting better bit. It also adds layers of complication to things like school work, missing work (especially with limited time off or if you’re an hourly employee) and other realities that don’t like to be put on hold for illness. Being sick for a long time is a challenge, and it’s totally ok that it’s a challenge. It makes life complicated!

    • So far I haven’t had anyone be frustrated with me for being sick, but I’ve definitely felt it with my son. I can see that he’s not well, but the thought still floats through my head “Can’t you just be better now?” It is ultimately a selfish thought because I’m tired of dealing with the sickness. The other trouble is that I’ve lost my basis for comparison. When someone is sick for a week, I can clearly remember last week and tell that they’re obviously suffering in comparison. But if someone is sick for weeks or months, then we all forget what not-sick looks like. I need to remember to be patient and sympathetic. He didn’t choose this.