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I’m writing this on Ash Wednesday.  This is important to know.

It’s the pause in my day between my services and I’m taking a chance to eat something and work on my vestry agenda for tomorrow.  Season 2 of The West Wing is playing in the background because I love Aaron Sorkin and I know it well enough that I can work and listen.  And in the middle of all of this I’m still bothered by my sermon.

It’s a good sermon.  I make good points.  Gospel points.  I believe everything I say.  Still, it’s under my skin.  And then a character on the show, a one-off character so I don’t know his name, says, “My entire life doesn’t have to be about this one thing.”  And I think but “sometimes it is.”

Sometimes my entire life is about being a priest.  (Try dating me, being my friend for very long and you’ll learn this lesson.)  Sometimes my entire life is about having had brain surgery and my health issues.  Listen to my sermon.  (Except, of course, you can’t.  I’m sorry.)  Hear me talk about mortality and death.  I learned those lessons the hard way.  The way of pain and suffering and blood work and tests.  Of having looked into the certain knowledge that death was close.  Sometimes my life is informed by one aspect of my life so completely it is as if my entire life is about that one thing.

All of that often makes me a better person and a better priest.  But this week, this week between MRI #17 and the doctor’s appointment, this week when my mortality is a little closer to me, I wonder if my knowledge of my mortality has bleed too close to my priesthood.  Because if my schedule were different, my sermon would be different.  It’s a good sermon.  I just wonder.  I wonder what other words I would have found, would have said.  What other part of the Gospel I would have proclaimed.

“Remember that you are dust and to dust you shall return.”

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Or why my migraines took forever to diagnose.

I have migraines.  I have officially had migraines for about 8 months.  I have had migraines unofficially at least since my second surgery.  Which was 8 years ago.

That’s some difference.  8 months and 8 years.

The reason?  Is simple.  I’d already had surgery twice to remove two brain tumors.  One of the first signs of a brain tumor are headaches.  To be clear, my tumors tend to asymptomatic.  Further, headaches have never been a symptom of my tumors.

Still, when I walked into many different doctors offices and said, “I’ve been having these headaches.  What’s up?”  The response from many different doctors, most of whom I have respected and liked, has been, “When was your last MRI?”  And it was never that long ago.

So that was pretty much the end of that conversation.

And the headaches never really ended.  And because surgery had always been so recent and because they were never ‘typical’ migraines and because my life was so unsettled and because I don’t like doctor’s offices….

I just never really fought to get anything diagnosed.  Because it was so hard.  Because I didn’t know how to fight that fight.  Until it got too bad.

Because my other diagnosis, my past got in the way.

Last time it took three years.  Three years to feel like I had my body, my energy, my life back.

This time, it’s been two, mostly.  Two years and a couple of months since my last surgery, which is the date I celebrate, and will continue to celebrate.  But for the marking of how much longer it will be until I might feel like I have my body back, it hasn’t been two years.  After surgery there was the radiation.  And after that there was The Headache.  And recently I’ve discovered that the headaches never really stopped.  So the amount of time since my body has been dealing with a significant health issue?  Well, I’m not really sure.

Two years since surgery.  A year and three quarters since radiation.  A year and a half since The Headache ended.  A quarter year or so since the migraines have been under control.

I don’t know how long it will take this time.  I don’t even know when to start the clock.

Last time it took three years.

8 years ago I was a college freshman. I spent time going to classes, doing the reading for classes, hanging out with my friends, and going to Church meetings. (So, I was a little odd.) I remember having a particularly good semester 8 years ago. But mostly what I remember about 8 years ago is that I had brain surgery that summer.  And again 6 years ago when I had just finished my junior year of  college.  And then again two years ago during my last semester of seminary.

Over those 8 years, I have earned two degrees, moved across the country three times, been ordained in the Episcopal Church, had four different neurosurgeons, had 16 MRIs, made friends, kept friends, seen friends drift away, and started my first job as a priest.  I have taken one pill a day, 8 pills a day, and am currently on about 5 pills a day.  I have lost weight, gained weight, lost weight, gained weight, lost weight, gained weight, and lost weight, with a net of having gained weight due to medications.  I have been depressed and I have been healthier than I may have been since I was in high school.  I have suffered from unbearable insomnia and slept like crazy (although that is usually after surgery when I literally can’t do anything else).

8 years ago I could not imagine surviving most of what is in that paragraph.

I’m mentioning it more often.  It’s not that I ever insist on not talking about my surgeries, it’s just that I also don’t insist on taking about it.  And in the last few weeks I have taken opportunities that I usually would have passed on.  At the slightest opening, I’ve mentioned my surgeries.

It isn’t a mystery to me.  The second anniversary of my third surgery is next week.

My surgeries are on my mind.  I’m trying to figure out what this means.  I’ve survived two years since my last surgery.  And it doesn’t feel like two years.  It feels like one year.  Which, in some ways, it has been.  A month or so ago was the one year anniversary of the end of The Headache.  Which means that it’s only been a year since there wasn’t something significant and negative going on in my body.

Today this is what I know.  Every surgery is different.  Every recovery is different.  And I’m not done talking, speaking, writing about that.

It changes me.  The surgeries, the radiation, The Headache, any significant aspect of this whole health muddle.  It changes me.

It’s always small or subtle.  My hair will be straighter or curlier.  My normal body temperature will be slightly, ever so very slightly, warmer or cooler. I’ll get tired differently.  Pain will feel sharper, more present.  My vision will be different, blurrier.  My hearing will be clearer (and who measures that). My body will take a little more to do the same things I’ve always done.  Small things.  Things even I will only notice gradually.  Subtly intricate things that will affect large parts of my body and life.

It changes me but I’ll still smile the same.  My laugh will be no different. I’ll joke and laugh with you.  I may cry more, but you probably never saw that anyway.  The changes will probably never come up.  Because how do you tell someone that your nails are softer now?

It changes me. And I’m the only one to notice.

This was not the night for pious kneeling, or for pouring warm water over another’s feet, or for feeling the gentle wipe of a towel on my own.  I don’t know why.  Maundy Thursday has always been one of my favorite services in Holy Week.  I like the story, the exchange between Peter and Jesus.  I like the washing of feet.  I like caring for friends that proceeds the agony and betrayal that come later.  I like the connection between that meal and the stylized version we still share.  But this year, I couldn’t go.  There are a lot of parts to the reason why.

Last year, Maundy Thursday fell about two weeks after my surgery.  So, this brought back more memories about the slow pace of recovery–of the pain, of the long hours spent on couches and in bed, of calculating how much I could do in any hour or day.  I remember sitting in that pew, surrounded by people who knew me, who knew what the last weeks had been.  I was surrounded by friends and peers.  I remember sitting there, so far from the water and the towels.

So this was not the night to sit in a pew surrounded by people who love me, whose expectations and hopes I sometimes find stifling.  To move and pour the water and feel the towel.  It was a night too close to another night, another state of being.  This was not the night.

Not all that long ago, I talked about recovery being the process of moving from changes that came rapidly to changes that come far apart.  This is true.  At least physically, this is true for me.  Everything else about this after surgery process seems more convoluted.

If you were to meet me today and in the course of discussion I mentioned that I had brain surgery a year ago, somewhere in your head, probably mostly unconsciously, you would think, “It was a long time ago.”  When I think about being a year away from surgery, I think about how much longer it will take for me to understand the body I now live in.  The process of being past surgery has just begun.  Now that my body is unlikely to create sudden differences, I get to feel out all of the little ways in which it is now different.  This will be everything from what my hair is doing to how my body is feeling pain.  It is in these hundreds of little things, things other people assume, that I am lost.  But how do I explain this to someone?  “I’m sorry I’m having a bad day because my hair is seems to be straighter/curlier now and I don’t know how to deal with that yet.”  “Don’t worry, this cold is just taking longer to go away because my immune system got scrambled a couple of times last year and is still working on the kinks.”  And even when I do find ways to talk about this, it is like I can see in their eyes the thought, “But it’s been a year, shouldn’t you know this now?”  And I simply cannot answer the question they don’t know how to ask.  For the record the answer is that most of that time was spent becoming healthy enough to notice this issue.   

Between surgery #2 and #3, I spent a summer working away from people who knew me.  It was a good experience, but the week when I came across my surgery anniversary, I was lonely.  I was surrounded by nice people, but no one I really wanted to call and say, “Hey, three years ago there was this surgery and I’d like to go celebrate.  Want to come?”  My boss at the time noted that that must be isolating, and I replied, “Yes, but the entire experience is isolating.”  Think about it.  How many people out there can say they’ve had surgery three times?  Brain surgery three times?  Who are under 30?  Throw in some other life factors (family history, my chosen career field, etc) and I’m a pretty small group.  This is hard.  Not because there aren’t people who love me and listen and seek understanding–I am blessed to have many of those people in my life.  This is hard because there aren’t many people who listen and know, people who I can talk to without seeking to express all of the intricasies of my emotional responses.  This is one area where I miss what I’ve never had.

I keep finding that there are still more things I want to think about.  But I don’t know when they  might show up here.

[After I wrote this I realized that I have a few other things to say about the past year, but they don’t really fit with this. So look for another post later today or tomorrow.]

“It’s going to take a couple of months before my doctors will be willing to tell me that my body is close to something considered normal and it will be months, if not years, before I really understand what that means.”

I was reading through old posts and I ran into this sentence.  It still seems to be so true.  My doctors are mostly willing to say that I survived surgery very well, all of my tests seem to indicate that my body is existing in that range considered normal.  The  biggest steps of recovery are behind me.  If you were to meet me in person, you would be shocked to learn that I had brain surgery a year ago.  I look normal and healthy.

What I know is that my body still has fewer amounts of reserve energy than I did a little over a year ago.  If I have a long day or a hard day, I feel it sooner and more intensely than I once did.   I think some of this is a loss of reserve energy because of how much surgery and recovery take.  I think some of this is that even though I can live a “normal” life, that still takes a little bit more than it used to.  This will pass.  Slowly.  As I am careful and listen, my body will rebuild some endurance and relearn how to conduct life with less effort. 

The headaches will pass too.  Although The Headache finally ended (after eleven long weeks), I still get rather frequent headaches.  These headaches don’t last for weeks on end and many of them respond well to over-the-counter medications.  (Excedrin Migraine and I have a solid relationship.)  At least my hope is that the headaches will pass.  They did after surgery #2.  It is possible that I will always be more prone to headaches now than I was before several surgical teams poked around the insides of my head and other doctors shot radiation beams through my skull.  But they should become less.

My leg (which I’ve mentioned before) is doing well.  Occasionally, usually when the weather’s changing a lot, it gets sore and stiff for a couple of days.  I will feel it if I ask it to do too much, but ‘too much’ is no longer walking to the kitchen or down the block.  ‘Too much’ is more like a two mile uphill climb.  This will get better.  And eventually the soreness and stiffness will turn into my own personal barometer–minor itchy-like aching when the weather changes. 

 It has been 12 months, 1 year, and I still miss knowing what things would lead to pain, what I could do, what I shouldn’t do.  I would be okay without the seemingly random days when I am slow or tired or sick or in pain.  I still don’t understand what having surgery a year ago means for me.  I didn’t think I would by today though.  This recovery business is longer and harder and slower than people tell you to expect.  And this is the third time I’ve asked these parts of my body to heal.  

This week I was hiking with friends.  It was a beautiful autumn day, cool but warming up, with leaves just beginning to change colors.  The people I was with are great people, each of whom I enjoy spending time with and the conversation was delightful.  It was a nearly perfect time.

It was about 12 months ago that I realized that my legs had equaled out.   They had begun to respond equally to exercise or exertion.  And one of the things I knew about having surgery again is that this would no longer be true.  (I talk more about this here.)  But sometimes I forget.  

I forgot when I agreed to go hiking.  Inclines, you see, are one of those things that are particularly challenging for my leg.  Moving up and down an incline creates a level of demand for the muscles around the graft site that my muscles don’t happily do right now.  But I forgot this.  So it was about half-way through the hike, or at least my portion of it, when I finally had to turn to my companions and say, “I can’t do much more of this.”  They were gracious and I rested at our picnic spot while they made it up to the top.  

I was right.  On the way down, my leg was definitely at its limits.  And it has reminded me of this excursion for several days now.  I’m glad I went.  I’m glad I recognized my limits and lived within them.  I miss how I felt last year.  I miss that freedom.  I miss living without this pain.

It happened before.  It can and will happen again.  That doesn’t mean I’m going to like what is right now.

It was a nearly perfect day.

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