I had thought I had pretty well come to terms with the fact that I have a life threatening immune deficiency.  I was diagnosed three years ago, and spent the first two years dealing with the fact that I might die in the near future, rather than several decades from now.  I know that any one of us could die at any moment due to an automobile accident or a natural disaster.  But when you are told that you are immune deficient and are going to be dependent on gamma globulin treatments to keep you alive, your perspective changes. Radically.  It took me two years to get my head around that fact.

Done, right?  Ummm… unfortunately, no.  Not done.  Not done at all.  As I move into my tenth month of medical leave, I realize that I can no longer be sure how long this leave will last.  I am still definitely improving.  I now have several good days a week,  which will enable me to return to work two days a week starting in the middle of May.  I’m a teacher.  I miss it.  I keep thinking that I want to be in my classroom with the kids.  So being able to go back two days a week for the last month of the school year is great!

But then I start thinking of all the changes I will have to make to my approach to teaching if I want to continue to teach.  I will need to be less nit-picky in my grading. Not stay at school for hours after the students leave conferring with other staff, planning, cleaning my room, designing tests and projects, and all the multitudinous details that go into making a classroom run well and smoothly.  Or at least the details that I think are necessary to make a classroom run well and smoothly.  The changes feel overwhelming, but I know that if I don’t make them, or at least some of them, then my teaching days are numbered; I will have to retire long before either my finances or my emotions are ready to do so.

So here is the new part of the grief that is biting me in the back.  My head had come to terms (of sorts), with dying. None of me had come to terms with living with the disease, and all of the life changes that it would necessitate.  I really truly did think, that if I got the gamma globulin infusions on schedule, and just kept doing the things I was used to doing, that everything would be OK.  I had thought that the infusions would give me a normal life.  And they don’t.  They enable me to hold on to life for far, far longer.  And they enable me to do many things that I care deeply about. But I can’t seem to get my old life back, even though I thought I could.  And that is so, so, hard.

Spectacular Fashion

I am a fifth grade teacher and we teachers are a weird lot.  Both because of training and temperament, we often put our classroom students first.  It’s probably not the best profession for us immune deficient zebras, with the kids coughing and sneezing all day in an enclosed classroom.  But we are what we are.  For most of us, we have difficulty even imagining ourselves in a different profession.  Thus we often ignore illnesses as it gets close to the end of the school year. Let me just say that if you are immune deficient, that is most definitely not a good idea.  And my denial copping strategy? Yeah, well, that really does complicate things.

The first week of April of last year, I developed bronchitis.  That’s not unusual; I usually have a case of bronchitis at least once a year.  But the bronchitis that my students and fellow teachers had the winter and spring of 2009 was particularly tenacious. So when I developed bronchitis and it hung on, I didn’t think anything of it. The course of the illness seemed no different for me than for anyone else.  I did what I normally do; I took the antibiotic, I used my nebulizer for the albuterol treatments, and I kept going to work.  It was the ‘kept going to work’ part that was, shall I say, not the smartest thing I’ve ever done.

By the last two weeks of school, I was really struggling.  But it was the end of the year, and I was sure I could make it through the last two weeks.  I would deal with the prolonged bronchitis after that.  Then Tuesday evening of the last week, I noticed that my legs were swelling.  But I had been put on a steroidal drug to help clear my lungs, I had been taking it for several weeks, and edema was a common side effect. The last day of school was Friday; I would go in to be seen by a doctor on Saturday.  There were only 3 days left in the year.  I could certainly make it through 3 days.  Then there were only 2 days. Then one day.  Tomorrow I would see the doctor.

On Friday my fifth graders left our elementary campus for the last time.  It was 12:25.  I left at 5:00 and headed for home. I looked at my legs.  They were worse.  We ate dinner.  By 7:00 I noticed that my legs weren’t working correctly and I could barely see my ankles. And I was having trouble breathing. We headed to the hospital, and that’s when things began to change in a spectacular fashion. They started giving me breathing treatments every 4 hours and pumping huge amounts of steroids into my veins.

I was there for 3 days.  And my life hasn’t been the same since.  We thought I’d be back up to full speed by our daughter’s wedding in August, no problem.  After all, it was two months away. But by August I still had problems standing up for more than about 10 minutes at a time.  And I could only do things for about 1-2 hours a day, total.  Wonderful. Spectacular.  (Irony intended.)  This healing was going to take a very long time. And it was clear by then that I wasn’t going to be able to start the school year in September. Or, it turns out, for quite awhile.  I have improved significantly, but here it is almost April, and I’m still on medical leave.

Things learned?  Probably that I’m not invincible.  I know that sounds absolutely crazy, coming from someone who is immune deficient. But that has been one of the ways I’ve insulated my emotions from the knowledge of my immune deficiency.  If my emotions don’t need to come to terms with my illness, then it is a way of avoiding it. Would this be the little matter of my denial coping strategy?  Ummm…… yeah, I guess it would.  But there is nothing simple about this. It is, I suppose, the bargaining stage of grief.  The “I will make this accommodation for my illness, if, in turn, I can still continue to do that” stage.  It takes awhile, or perhaps something spectacular, to make us realize that bargaining isn’t the way into acceptance of our illness.  But what is?

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.