A One-Year Anniversary

One year ago today, April 1, 2014, I got out of the hospital after spending a long time there, a little over 70 days, I think.  There was a lot wrong with me while I was there, we were so happy to beat the doctor’s predictions about how long a rehab stay I would need after coming out of the coma.

It’s quiet in our house tonight.  Everyone is sleeping.  I just got home from rehearsal.  I checked in on the kids – both teenagers needed blankets pulled up.  I sat just watching each of them sleep for a minute, and then checked on Jeanne, who fell asleep with a book and wearing her glasses, as usual.

It’s been an amazing year.  Spending time with my wonderful family, and friends.  Getting back to work at a job I love with people I love.  Learning to celebrate everything and savor everything.  Watching my family sleep, tucking them in,  that’s such a gift.  

So much has happened.  The amount of support my family and I received during the hospital adventure was, is, overwhelming and humbling and incredible. I spent months on dialysis – an amazing process that cleans your blood when your kidneys can’t, but it also takes 4 hours, 3 days per week… and leaves you feeling pretty miserable for an entire day each time you have it.  We were amazed and so grateful when my kidneys healed enough to stop needing dialysis.  There’s no guarantee they’ll stay that way, but I’m grateful for every day I don’t need it.

It’s funny to think that it was a year ago that I came home.  It feels both like yesterday, and a hundred years ago at the same time.   A couple of months ago, Jeanne and I were asked to speak to the Michigan Health Association of ICU Workers at their Keynote Conference.  They wanted to hear our story, as people who had been through a long illness in the ICU.  It was an honor to speak with them, to share the good things that happened and the bad.  They asked lots of questions, and wanted to know how to help people going through what we went through (even more than they already did).    It was wonderful to participate, there was a feeling of “giving back” to these people who had made such a difference in our lives.  At some points they cheered, and clapped – at others they gasped, and afterwards Jeanne and I got many hugs.  We’ve been asked to speak to another group in the Fall of this year, and I can’t wait!  

I say often that I’m still processing everything that happened, and that’s still the case.  I still have the occasional hospital nightmare.  Jeanne and I are still evaluating our lives, our paths, and working to simplify and purge, and who knows what that means for the future?  My health is better, but still not perfect.  The experts have diagnosed the reason behind the whole series of illnesses that led me to the hospital as CVID, or Common Variable Immuno Deficiency.  Short translation: my immune system stopped making immunoglobulins to fight off infections or illness.  Why?  They don’t know, as is the case in a LOT of CVID diagnoses.  My doctor said it occurs in about 1 of 50,000 people, and can just appear or can be brought on by a strong shock to the immune system.  The bad case of shingles I got in mid-2012 is being considered as a possible culprit.  

Now, to counteract the CVID, I have a weekly treatment.  It’s an infusion of immunoglobulins that have been harvested from donated blood.  A 90 minute procedure with almost no ill effects that I can do at home.  Again, I’m amazed at modern medicine, and how incredible our world is. 

So. 1 year ago tonight.  And here we are, one day away from the Opening Night of the first play I’ve directed in about a year and a half!  Crazy.  Life is crazy.  And beautiful.  My kids are amazing, and I get to be with them.  My wife is the strongest most beautiful woman ever.  I’m incredibly lucky to have the life with them that I have, and I’m determined to find ways to give back to that life.  As challenging as the last year was, and as much as I don’t want any of that to happen to anyone, I’m grateful that I had a wake up call to remind me of what is so easy to forget: If we pay attention, Amazingness is everywhere.  And now I get to direct a play all about a guy who learns how to fall in love with his life again, and it feels just right.  Falling in love with our lives over and over again is something we have to remind ourselves to do …and it’s worth it. 

You know, when I left the hospital, I spent the next 6 months walking with a cane, re-learning how to walk without falling over, without stumbling.  I still have several of those canes, in a corner of the living room by our front door.  Jeanne doesn’t like them there, she says they remind her of everything that happened… But that’s why I like them there.  I *want* to be reminded.  I don’t ever want to forget how hard it was for me to walk, and how much help I needed…and how much help I got.  Every day is a gift, and they help me remember that.

Now, I’m going to check in on my kids one more time before I go to sleep.  Because I can.

I’m so grateful that I can.

4 thoughts on “A One-Year Anniversary

  1. Sigrid Harris April 2, 2015 / 1:27 am

    You know, I realize our lives intersected over twenty years ago, and that I suck at doing much more than lurking most of the time, but I have to tell you, I read every post you make, I marvel each time at what an amazing person you are (and pretty much always have been), and I am so grateful that this world still gets to have you in it.

  2. Tony Caselli April 2, 2015 / 2:54 pm

    Aw, thanks a ton, Sigrid. That’s awfully sweet. You’re pretty terrific, too! And I’ve never thought of you as a “lurker”! lol BUT – if you feel that way, cut it out and chime in more – I’d love to hear from you! 🙂

  3. Barb Ball April 2, 2015 / 5:57 pm

    Thank you, Tony for your posts. Thanks be to God you are still here to make them!

    Barb Ball (David Wolber’s mom).

  4. Tony Caselli June 16, 2015 / 1:22 pm

    Thank you, Barb! It’s wonderful to hear from you!

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