Cryptogenic

At this time of year, I’ve usually got a list an arm’s length long of projects I need to work on around the house. Eight years ago, Rachel and I bought a house that hadn’t been occupied for over a dozen years. While we got a great deal on the property, we also got seven summer’s worth of projects. This isn’t a bad thing – my favorite weekend passtimes involve hammers, paintbrushes and wheelbarrows, and I have been half-considering buying a Greek Revival farmhouse in Cheshire just so I could have more home renovation projects to work on.

But our house is in pretty good shape these days. Last year, I repaired a large section of roof, and with help from a contractor friend, replaced two large windows and 30′ x 20′ wall covered in clapboard. This year, there’s little more than cracks to fill in the driveway, a coat of paint on the chimney, the lawn to mow…

Except.

There’s one beam in the kitchen that looks on the verge of falling from the ceiling. It’s the victim of a pernicious roof leak that I haven’t been able to eliminate, despite dozens of hours of work, the intervention of several skilled professionals, and thousands of dollars in abortive roof repairs by a charming but ineffectual Irish carpenter. The problem, ultimately, is that no one seems to be able to determine where the leak is coming from. Three rooflines could be causing the leak. Or it could be one of two walls, or an internal plumbing leak. Or gremlins. Basically, all we know is that it shouldn’t be happening and that we don’t know why it’s happening.

It’s cryptogenic.

Because we don’t know what’s causing the leak, it’s very hard to eliminate it. I’ve caulked roof seams, replaced siding, used expansion foam and silicone to close holes that might allow water into the skin of the house. Nothing works, and I’m running short on theories to test next.

On the whiteboard in my office, where I list the projects I need to complete, there’s a year-old entry: “replaster kitchen beam”. But why replaster when I know that the next major rainstorm is going to cause another leak, dropping my carefully-applied spackle onto the kitchen floor? The ragged, unplastered beam is a constant reminder that, contrary to all other indications, everything is not okay here. There’s an unsolved problem here, one that ultimately is going to damage this part of the house if I don’t figure out how to solve it.

This is not a post about home repair.

Last Christmas, Rachel had a stroke. While we sat on the couch watching “Little Miss Sunshine”, the left side of her field of vision disappeared. A month later, most of her vision returned, and since then, she’s been in apparent good health. But the more we’ve looked, the more mysterious the Christmas stroke gets.

For one thing, it’s one of three strokes that she’s apparently experienced. Those strokes were all in different parts of the brain, and all the likely explanations for stroke in a young women (like patent foramen ovale) have been eliminated. As we’ve moved from local medical experts to nationally-recognized stroke experts to the experts those nationally-recognized stroke experts consult with, we’re starting to see a difference of opinion in doctors. Our family doctor, a dear friend for many years, has been urging us to accept that we’ll never know why the strokes occurred. The stroke experts, on the other hand, are tracking down different genetic factors, trading theories and eliminating conventional wisdom.

We went to see a new stroke specialist yesterday, hoping he’d tell us the stroke was cryptogenic and that we should focus on staying healthy in the future. Instead, he explained why all the possible explanations offered by other doctors don’t make sense. Long term use of birth control pills? Nope – associated with strokes in the veins, not in the arteries. Sudafed use? Again, a loose correlation to strokes in the veins, but not a good explanation for arterial stroke. A staph infection inside the heart? We’d see scarring on the mitral valve.

In other words, the explanations we’ve been getting our heads around – high blood pressure + birth control pills + sudafed = stroke – isn’t accurate, if this expert is to be believed. Which means the mystery is still open. Which in turn means that there may be some underlying condition that causes the strokes, which we might or might not be able to treat. Or that the next round of tests leaves us where we were before yesterday: cryptogenic stroke.

I’m a strong, smart, hard-working guy. If I know what needs to be done, I will get it done. Not knowing what to do? That’s hard.

There are moments in life where you’re facing enough similar challenges that it’s easy to conclude that God / the universe / chance / higher-power-of-your-choice is trying to teach you a specific lesson. This lesson seems to be about living with uncertainty. As I’ve mentioned before, I’m going through a series of laser treatments and drug injections to preserve my vision from damage due to diabetic retinopathy. Those treatments aren’t working as well as we’d like. Why? No one knows. What should we do next? No one knows. Why am I, a reasonably healthy guy who takes care of his diabetes, dealing with these complications? No one knows.

Over the past four months, Rachel’s had several MRIs, two TEEs, a contrast MRA and endless bloodwork. I’ve had three laser treatments and an avastin injection. We’ve both had more than a few sleepless nights. For the most part, I think we’re holding up okay – we’re both getting up and going to work every day, making it to meetings and conferences, seeing friends, watching bad TV.

But the unplastered beam is visible, too. We haven’t sat down to pay the bills for two months, and I haven’t sent any of the invoices I need to send so we can pay those bills. We haven’t folded the laundry in months. And I’ve got a steady low-grade panic about an upcoming trip to Tanzania and South Africa. If something happens and Rachel needs to go to the hospital, it would require 24 to 36 hours for me to get back. I can tell myself that nothing’s going to happen… but nothing was supposed to happen when we sat down on the couch to watch a movie five months ago.

I can’t fix the roof leak, but I can plaster the beam. That’s the first project for tomorrow. It won’t solve the underlying problem, but it lets me get through the day without worrying about it. Sometimes that’s all you can do.

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15 Responses to Cryptogenic

  1. Kris B says:

    Wow, what a poignant way of putting what you’re going through. I sympathize, since I am terrible at dealing with uncertainty. A few years ago, when my family was told my mom had MS (which turned out to be an inaccurate diagnosis), I had a really hard time with it, since the progression of the disease is so unpredictable, and there aren’t many good treatments.

    Good luck plastering the beam and coping with the health issues. Goes to show, I guess, that the world is good at showing us how much we still don’t know. *hug*

  2. Kate says:

    Yeah. *hug*
    You have backup. We’ll hang out and pass you the spackle and the putty knives too.

  3. Kirsten says:

    *hug*

    I don’t have much else to add to that, but we’re here for you both.

  4. sean coon says:

    thanks for sharing, man. i’ve been dealing with a potential heart problem for the past 6 years with no clear explanation or diagnosis. i could just have low blood pressure which causes me to pass out from time to time, or i could have a degenerative heart condition that isn’t showing up in tests yet… the unknown affects me every day. hang in there.

  5. Henok says:

    EZ thank for sharing this history. I know you are smart strong to handle this problem. As a refuge coming to United State with out a family, I had a lot of question but never got answer. Life is living to answer an answer questions. Be happy and strong EZ.

  6. oso says:

    Really beautiful post Ethan. I know I can’t offer any glimpse of wisdom that you haven’t already reflected on scores of times before, but I am glad to see that you’re dealing with the adversity in the best way you can: making an effort to stay optimistic, focusing on your passions, taking enough time out to watch that bad TV, and being mindful about physical and emotional health as much as possible. A hug to you both.

  7. Jamie Uhrig says:

    Know that others are thinking of you and Rachel in this time of uncertainty.

    Jamie

  8. ndesanjo says:

    Ethan,
    It is hard when you dont find the right words to tell a friend in times like these.
    You can simply do what you can do and hope for the best. And, I gather from your post, that’s what you are doing. We are all thinking of you. I hope that people who have been in the same situation before may be able to share their thoughts and experiences with you.

  9. Josh Glenn says:

    Ethan, I’m sorry to hear about your vision and the Velveteen Rabbi’s mysterious strokes! That is no fun at all…

  10. My wishes are with you, Ethan. I can barely imagine how frustrating this time must be.

  11. Ethan,
    I’ve been reading your blog, asking your advice, following your lead on various campaigns, even meet you a couple of times in that the past couple of years and that brought with it a comforting sense of familiarity. Yet insights like this post show how many of us who count on you in different ways do not know you at all. This is a powerful post. Thank you for sharing it. Rachel and you will remain in my thoughts. I too am glad that you have found a way to deal with your challenges. That is great strength. Be and remain encouraged.

  12. Sheila Weeks says:

    Ethan,
    I came across your blog after I googled cryptogenic strokes. I am 37 years old and I had my stroke July of 2006 and a TIA April of 2007. I can seriously sympathize with you and Rachel. No answers for me yet, I had a transcranial Doppler study done and it was positive but when they went to do the angiogram they cold not find the hole. Now I have to have a CT of the lungs because my clot had to get there some kind of way. If I find out something new, I will be sure to post it to you. It is such a sad place to be the town of “not knowing”. But prayer will help. good luck to you and Rachel, what else can you do but live each day as it comes and try to make the best of it. I know its easier said than done. But try because you both need each other to lean on. :-)

  13. Ethan says:

    Shelia, thanks for sharing your story. I’ll look forward to researching the transcranial Doppler study – that’s not something anyone has mentioned for Rachel. I wish you the best of luck with your next round of tests and hope you’re getting the support you need as you work through these challenges. Please do post here and let us know the developments in your situation, if you feel inclined – Rachel and I would both love to hear. Take good care.

  14. Steve says:

    Ethan,

    My prayers go out to the Lord for the health of your wife, father and yourself.

    God bless,
    Steve

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