Zebra’s Child

I am a zebra.  Not a horse, although for years my doctors thought I was.  Nope.  I’m a zebra. You know what doctors are told in med school;  “When you hear hoof beats, think horses, not zebras.”  In other words, if something is wrong, don’t think of all the unusual things it might be. It almost always is the obvious one.  Well, let me tell you, a zebra’s whuffle is not at all like a horse’s neigh. But a lot of times doctors think it is.  For those of us with rare forms of immune deficiency, our doctors slowly learn that with us, they do need to think “zebras.”

Disclosure: I am a perfectionist.  I am also, not surprisingly, moderately OCD and have an anxiety disorder.  That means I try to control lots of aspects of my life and environment in order to lower my anxiety.  Oh, and the little matter of my immune deficiency?  That means that there is a huge aspect of my life over which I have very little control.  Which drives me crazy.  And which is why I sometimes feel not only like a zebra, but a zebra’s child as well; there are times when, just like a child, I have so little control over what happens to me.

Further disclosure:  My biggest coping strategy is denial. I’m not kidding.  Not watching movies, or reading books or eating chocolate, although those do all have their place in my bag of tricks. But I truly think that if I just ignore a problem, and keep living my life the way I’ve been living it, the problem will go away.  Thinking that way is not a little problem, it’s a big problem if you have a Primary Immune Deficiency. Living the way I used to live, with all the activities, working too long and too hard, not enough sleep, etc. only makes me more and more seriously ill.  And, unfortunately, my health won’t improve unless I think about it and deal with it, which is the last thing I want to do.  Dealing with it is admitting that there is a problem.

So.  I have Common Variable Immune Deficiency (CVID), which affects only 1 in 25,000 – 50,000 people, and is life threatening. The gamma globulin treatments that keep me alive involve my getting hooked up to an IV for a day and a half once every three weeks. (I don’t have to spend the night, I just go back the next day.)  Now, ask me how I can regularly get those treatments and still be in denial? A day and a half every three weeks?????  Well…… ummmm….. That’s a really good question.  All I can say is that you have no idea how truly great my powers of denial are.  I could probably enter a competition titled something like  “How far has denial carried you in your life?” and have a good chance of winning.  Or at least making it to the finals.

Unfortunately, as those of you with an immune deficiency know, denial can only carry you so far before you crash and burn. In my case, somewhat spectacularly.

18 thoughts on “Zebra’s Child”

  1. Thank you for this fabulous site!

    I loved reading your story, and of course I can relate! There are so few of us and that can be painful in itself.

    I love the face of your blog page, but I was a little confused. I honestly thought it was a Zebra fan site.
    Also, I work at the LA Zoo, so I see many animal sites.

    If one is searching for a blog about CVID, do they get directed to your via the net?
    How does that work? I just don’t want people to get confused and think they’ve reached a taxonomist’s blog!
    I hope that makes sense.
    Keep up the good work. I look forward to more posts!

    Martha

  2. Martha, thanks for leaving a comment! Yes, I had thought about the face of the site and the possible confusion of it being a site about animals. I am hoping that any confusion will resolve itself over time. Though if any of you guys out there have some suggestions, I’m all ears.

    In regard to being directed to my site via the net, the answer is not yet. Google ranks its sites according to the number of hits. Since my site is brand new, it doesn’t have enough hits yet to even register on Google. The solution to this is to spread the word to all your friends and relations and encourage them to check out the site. The more, the merrier. Also, subscribing to to my RSS feed will help. It costs nothing, you are notified when there is a new post, or comment, or both, and it also helps my Google rank.

    So if you like the site, spread the word. And be well.

  3. I come from a family of panic merchants; the slightest thing goes wrong and everyone went into full battle mode. Kind of the opposite of denial — completely over-the-top over-reaction. Part of me still does that. Then I met (and ended up spending the last 28 years of my life with) a man whose whole family not only live in denial, I think they own it (at least the main street). I’ve not only begun to understand how he can do it, I’ve begun to reside a bit there too. I think it’s because sometimes things are just so truly awful that denial is a kind of necessary refuge — even when it’s counter-productive. Not sure if this totally makes sense, but I think I can understand what you’re saying. 🙂

  4. Su, I love reading your writing! I often get ideas for a post just from the way you word things. In this comment I love the phrase “panic merchants,” and the phrase, “…a man whose family not only live in denial, I think they own it (at lease the main street).” Your writing often tickles my funny bone.

    Indeed, many of us for whom denial is a coping mechanism develop it unconsciously because it became necessary to survive. The bad news is that our environments made it necessary. The good news is, thank god our brains and psyches are hard wired to survive in the face trauma. Of course, we do have to come to terms with it all later, in one way or another, or it can destroy us. And once we have developed that comping mechanism, we often use it instinctively to shield ourselves, even when it’s not necessary. When we do that, it is often counter-productive. But I’m grateful that somehow inside we can pack everything away in a box when circumstances require it, and later, often with help, we can unpack it piece by piece as we work our way back to wholeness.

  5. I can understand the world of denial despite never having lived there. I think it is a perfect coping strategy for life when it gets too rough around the edges and starts to invade the peace and control we seek. Not having control is a scary thing (OCD or no OCD) and that is one thing I tend to “fight” when I realize… much to my loss each and every time. I love your tittle to your blog. Makes complete sense to me now. Those who need to find you will…take care and have a happy day, I hope. Cheryl

    1. Thanks so much, Cheryl. Yep, I’m learning that fighting things I have no control over usually makes things worse. I’m in a very different place on that than I was when I started the blog. Probably because I’ve had a lot more experience with things I can’t control. 😉 Thanks for the encouragement – it’s always welcomed!

  6. I think I can totally relate with that denial mechanism, Hannah. And even though psychologists and what not try to tell us that it’s not good for us, I rather think it does has its advantages, and our brains wouldn’t come up with it, if we didn’t need it in order to literally survive.
    I’m truly sorry to her about your life-threatening disease, and I think it’s wonderful that you try to build a community like this via blogging. Finding like-minded people is so important, because even if some of us prefer being alone at times, we are in the end social beings and need contact.
    And I hear you about being a perfectionist – it’s so exhausting, isn’t it? And only other perfectionists know how that feels.
    I’m really looking forward to get to know you more via your blogs! 😀

    1. I’m definitely looking forward to getting to know you better as well! btw, l read through a lot of your blog last night, but for some reason some WordPress sites don’t let me “like” a post on the actual blog – the only way I can do it is to click the “like” button in my reader. I haven’t been able to figure out why that is, but it seems to happen when bloggers are blogging from other countries. I’m puzzled as to why that would be, and I’m not even sure that my theory is correct, but it’s the best I’ve been able to come up with. So I didn’t seem able to leave “likes” on your various pages. At least that’s my memory. I was reading your blog very late at night, so my memory might actually be flawed! Maybe now that I’m “following” your blog the “like” will work. Are you in the UK perhaps?
      I’m relieved to say that I’ve gotten more relaxed about my perfectionism since we have moved back to Northern California. Maybe it’s because I no longer have to be responsible for all the repairs of a house and all the finances involved, and everything else that I needed to stay on top of. Maybe it’s also because we moved up here to not only come back to the Bay Area, but to be near our older daughter, son-in-law, and grandchildren. Having family very nearby and knowing that they are there to help out relieves me from feeling that I have to keep absolutely all the balls in the air. (My husband had gotten more and more ill over the last 5-8 years before he died 9 month ago.) And I’d also like to think that 30+ years of therapy has had some effect!!
      And yes, denial is definitely a defense mechanism. I’m sure I would have had an even harder time making it through my childhood without a huge dose of daily denial. So it does have a purpose.
      And that brings the conversation around to how both perfectionism and denial can work together to help us through awful situations. I think the denial is actually more functional in that respect than the perfectionism, but in my experience they often go hand in hand in terms of denying how bad your situation is, and also the instinctive desire to “just get it right” the next time so the situation with improve. That doesn’t happen, of course, when the situation is completely beyond our control, but our brains are wired to try to do everything to improve our chances of survival. Thank goodness we are hard wired to survive!

      1. That’s weird what with the problems of leaving “likes” on my blog, I haven’t heard that before. And since I’m so not tech savvy, I really don’t know what might be the cause for it. I actually wasn’t informed of any of them, but it’s so lovely to know that you were enjoying browsing through it! 😀 I sometimes can’t leave likes via my reader and have to visit the proper sites but don’t ask me why! 😂
        I’m blogging from Germany (Berlin) by the way. 🙂
        It must have been a relief to notice that you could handle the perfectionism better when you moved back to California. And I’m so very sorry to hear about your husband. I’m glad your children and grandchildren are living close to you, that must be a great comfort. Family is the most important thing there is.
        I think you might be right about denial and perfectionism going hand in hand most of the time. And I would add depression too, because failing to be perfect – which we simply can’t be but let’s give it a try anyway, right? – often triggers that as well. We’re a funny bunch us human beings, aren’t we? 😉

      2. Indeed we are. Yes, depression goes along with it. I think the 3 of them are often the “chicken and egg” syndrome. Which one came first? I’m not sure that can be figured out, since they all are a response to life events/the chemistry of out individual brains. I now realize that depression runs in my family, so I was predisposed to it. On the other hand, the depression wouldn’t have been nearly as severe if I hadn’t had traumatic events in childhood.
        Berlin! That’s wonderful. Your English is perfect. My college German was not even remotely, and I mean REMOTELY as good as your English. I was studying it because one of my grandfathers spoke some German to me as a child occasionally, and I needed some basic German in order to study Schubert lieder. My husband and I took a trip to France 4 years ago so he could finally show me the country and city (Paris) that he had fallen in love with when he was 9 and 10 years old. (We both had a nomadic childhood as each of us was raised in the service.) I really hope to get back to continental Europe – I haven’t been anywhere other than France. 😃

      3. “Chicken and egg” syndrome is a very adequate way to put it. Maybe if/when they – whoever they may be 😉 – figure out which of these three is to blame first, they can come up for a solution/cure/remedy. The funny thing is depression also runs in my family, only they never really knew what to call it! They were often called melancholic instead.
        Aw – thanks! I really love English, always have and always will – I mean, it’s what The Bard spoke, right? 😉 Blogging has helped me a lot improving it since none of my WP friends speak any German at all. 😀
        And how awesome that you gave German a try at college! Most people wouldn’t even consider learning it, seeing as it doesn’t bring many advantages if you’re not living in Germany, Switzerland or Austria. But of course it made sense for you when you wanted to sing Schubert – whom I love by the way. 🙂
        Ah – France! Never been there but really, really want to! I’ve been learning French for a couple of years now – teaching it myself with books, CDs and whatnot – and hope that it will suffice to order croissants and coffee when I get there. 😉 Let me know when you find yourself in continental Europe, we certainly have to meet! 😀

      4. It’s going to take awhile for me to work out travel to Europe. Traveling to other countries gets complicated because it takes a day to get there and a day to get back, and I loose at least 2 days once I’m there adjusting to the time difference and my body recovering from the long flight. I have to time the trip to be between the infusions I get every 3 weeks for my Primary Immune Deficiency. My medical insurance doesn’t cover it out of country. I’m also a little hesitant to travel by myself due to my health condition. I’m looking into tours, which would give me the advantage of some back up if I got sick, and then maybe extending my stay to have some time on my own. That’s what my husband and I did when we went to France 4 years ago. Although I have family in Britain, so if I got sick, I could always pop over there. But traveling abroad where I don’t speak the language fluently is a lot more complicated than in my youth when I was pretty fearless. I think I’m just a little afraid to go ahead with it. However, knowing someone in Europe might make all the difference psychologically!😀

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