Sunday, December 27, 2015


Lately I have been feeling like I don't recognize my life.

I'm having a hard time knowing what day it is; what season it is.  The unseasonably warm Wisconsin winter isn't helping. Christmas has taken a back seat to cancer, so the holiday spirit has been difficult to capture.

My current life does not contain any of the elements that normally give it shape.  I should be getting up each weekday and going to school.  I should be writing lesson plans, teaching children, grading math tests and writing projects. John and I had developed a routine of flying every Saturday morning, then going for bagels after.  (If my landings were good, I got "crunchy munchies" on my bagel.)  John went to work.  He sometimes traveled for work.  We visited Alex about 3 times every two weeks and he came for an overnight visit about once a month.  These things and many more made the routine of our lives.

I don't teach right now, and I don't know what day of the week it is.  I've spent more nights sleeping in hospital beds than in the entirety of my 52 years up to this point, including the nights after giving birth.

My life doesn't feel "right" to me.  And I feel like I'm in limbo, because it also doesn't feel right to keep talking about when my life "returns to normal."  I did that for the first six months of Alex's treatment, but at the end of that, it turns out we weren't done.

I'm afraid to look too far ahead.  The truth is, Alex's prognosis is very scary.  What we're banking on, and hoping for, is that this transplant cures his cancer.  That is possible, but in no way guaranteed. I'm not even sure I can it's likely. The next best thing would be remission, but we don't know how long that could be.  At this moment, the treatment plan includes more chemo after the transplant, probably for another year.

So we can't keep waiting for life to return to "normal."  Normal has changed.  Life has changed.

I don't recognize my life, but the answer isn't trying to get back to the life I had before, but figuring out what this new life means.

Life changes you.  The good, the bad, the in between.

How can you go through cancer and not be changed?

Hiding from, or ignoring, what you're going through is a mistake.  Cancer has changed me in ways I don't like - I have a level of anxiety I'm not used to; I feel physical pain and fatigue from the stress and the fear.  Friends and family comment on our strength.  It is nice to have that support, and I hope we are strong.  We are trying to be.  But make no mistake -it's hard.  We are sad.  We are scared.  We cry, have short tempers.  And seeing your child sick and going through horrific treatment is awful. There aren't words to describe the feeling of fear that your child may die.

But I would miss an opportunity if I ignored the lessons cancer brings.  Empathy.  Many, many people are battling cancer or have family members who are.  We struggle with the uncertainty of Alex's survival, but at least we still have hope.  Others are not so lucky; they know their outcome with not be positive, or they have already lost the fight.

And it doesn't have to be cancer.  Most people have something in their lives that challenges them.  "Everyone is fighting a battle you know nothing about..." states a popular internet meme.

I hope that when I hear about someone else who is sick, or out of a job, or facing the end of a marriage, or whatever it might be, that I listen with empathy and support; I hope I am not so engrossed in my own pain that I forget that I am not alone.  I realize that right now I don't have the emotional reserve or even the time to support others in the way that I would like, but someday things will get easier for me.  I need to use what I've learned to support those around me.

I've learned who I can count on.  Some friends have disappointed me.  Most have amazed and fortified me.  And I know now who can be there when I need them most.

I know I can count on myself.  I don't want to be sitting in a hospital right now.  I wish I could go to work and do other things.  But I can't.  Alex needs me.  This isn't easy, and it isn't for the faint of heart, but I sure hope all of you can do what you need to do when your time comes.

The truth is, I realize I can't go back to my old life.  That life is gone.  And I don't really want to.  I can't pretend that the pain wasn't there, or that this trauma hasn't happened.

I want Alex to get well; I want that more than anything.  But I want to take this experience with me.  I want it to make me a better person.  I want it to make me appreciate my life more.  I want it to make me appreciate my relationships more.

I look at Alex, and I am confident that he knows that his dad and I are there for him, no matter what.  He may have to be scared of cancer, but he doesn't have to be scared of being alone.  He can count on his sister.  He can count on his new brother-in-law.

I do look forward to my life "getting back to normal" in the sense that I go back to school, John is back at work, Alex is at his group home.  For awhile, this new normal will most likely include more cancer treatment.  It will include follow ups and monitoring.  We'll figure out how to do all of that, and have a life.

But right now, this is my life.  This is normal.  I'm spending my days with my son.  I'll try hard to be in the moment.  And when this moment ends and the next one comes, I'll remember this moment and use what I've learned.


  1. Carrie,
    You are able to articulate and express so beautifully the uncertainty of life and the unexpected ways it shapes and changes us in profound ways. Two years ago after losing her parents in a tragic accident, one of my best friends and most driven, grounded person I know said that she was "fundamentally a different person". At the time, it rocked me to my core to see the strongest woman I knew so raw and exposed. She was unrecognizable, vulnerable, and lost. It made me feel wholly unequipped to ever face an adverse life event.
    Today, she is absolutely a fundamentally different person. It was as if all of those raw exposed edges that had not previously seen the light of day were smoothed and shaped to reveal a life not yet fully embraced. She now seizes every moment and redefined what most people think of as "big things" as insignificant.
    I now have a different admiration for her. I admire her ability to live without fear or regret and to empathize on a level most will never achieve. I marvel at the joy that can only come after unimaginable sorrow.
    Alex has always taken pleasure in the "little things". I have never seen anyone work so hard for a Dorito chip! I want to live like that.
    My prayer for your family is that when "normal" returns, you will also be fundamentally changed in ways that only a life changing event can reveal.