Book Review - Twelve Months

Twelve Months by Steven Manchester (The Story Plant - 2012) - I honestly had no idea what I was getting into when I opened this book.  When I realized it was the story of a man just my age facing the sudden end of his life long before he was prepared I almost put the book down.  My own stroke is less than two years in the past and is still a pain filled, fearful memory.  I know EXACTLY the feelings Don DiMarco goes through.  The stunning pain of realizing that you must leave those you love the most behind long before you want.  DiMarco is diagnosed with a cancer that is beyond curing.  He's given 12 months to live and has to decide how to live it.  The story is inspiring even as it's fairly predictable.  It's a love story and a story of self discovery.  It's a story that lives every second of the present while taking long rambles through the past.  It's a story about trying to do the things you've always wanted to do and wondering why you didn't do them before.

The book isn't without it's short comings.  Manchester fills far too many pages using out takes from newspaper stories and tourist brochures to move the story forward rather than sticking with his strength - the bond between his characters.  The worst moments in the book are when DiMarco lives out a life long goal of doing stand up comedy.  In all of his other "bucket list" events he does it once and moves on.  DiMarco not only gets up on stage THREE times, he is awful all three times and Manchester makes us live through all three of them.  It's painful reading, more painful than any of the emotional content elsewhere.  To be honest I'm not sure that it really adds to the story.

In the end Manchester weaves together a story well worth reading.  It's touching and emotional and was very hard for me to read at times.  I read the book during breaks at a convention and several times had people inquire if I was all right.  The story came too close to my own in several places.  The book won't be for everybody but for some it could easily be their favorite book of the year.

Twelve Months is set to hit book shelves August 14.

Rating - *** Good Read.

Anniversary and coda

One year ago.

5.40 PM

I had a stroke.

Today I am a stroke survivor.  It still feels weird to say that.

Today is that anniversary.  It is also the last day of my "Lost Year".  A year that has been challenging, frightening and hectic.  My recovery put me MONTHS behind in my work and I spent most of the year scrambling to catch up.  I did.  Mostly.  Nothing ever fell through the cracks but a couple things came entirely too close.

It felt like I would never fully recovered.  As soon as I thought I was I'd realize that I was wrong.  The physical frailty was bad.  The first time I went out of the house after the stroke I needed to lean on my lady wife's arm at times.  I wore down in a very short while.  Hard to accept when I had been training for a 5k just weeks before.  But it was the mental frailty that was really the hardest.  The lurking fear of "What if it happens again?".  Am I pushing too hard?  The weight gain and loss of conditioning made it worse.  Just weeks before the stroke I had run up hill for a block in downtown Jamestown and hadn't been breathing hard at the top.  When I walked up that hill a month or two later it was slow, labored and I was breathing very hard at the top.

I've spent a lot of time this year talking about the stroke.  It's begun to sound like excuse making to me and I hate excuse making.  At the same time the reality is that I was sick  That's not an excuse.  I'm tired of talking about it and I'm tired of feeling guilty about it.

It all ends today.

The stroke is part of my history.  It always will be.  So is when I broke my arm, and when I broke my ribs and when I got married and when my daughter was born.   I don't talk about them all the time.  They don't control my life.  I celebrate the anniversary of good things in my life.  I note several less happy events each year in memoriam.  This will be one of them.  I will remember and give thanks that I survived.

Every day since then has been a gift.  Every day from now on will be a gift.

It's time to move on.

Peace

Stroke stories - The Virtue I Lack

Patience.

Everyone keeps reminding me.  Healing, particularly of a serious problem, takes time.  Take the time you need to heal, take it easy, don't push too hard, too soon, too fast.  Be patient.

Yeah, well...

Every day is different.  One day I feel good, the next day I'm wiped out.  Is the overall trend towards getting better?  Without a doubt.  Is it less than three weeks since the bomb went off in my head?  Yep, it'll be three weeks tomorrow.

So where am I?  I still have a very light headache every day.  Could be the last remnants of the stroke or could be side effect of the drugs.  I still take two pills every four hours.  That will end tomorrow at 11 PM.  Which means I might actually get a full night's sleep tomorrow night.  That would be a first since the stroke.  Not surprisingly I'm tired to one degree or another all the time.  Some days are better than others.  On the good days I try to do a little more and the next day I'm wiped out again.

The cumulative effect is that I don't feel like I really want to do much of anything about half the time.  The other half is spent trying to do things that won't totally wipe me out.  I did four things this past weekend - went to a two hour meeting where I could just sit quietly, went to church where I could just sit quietly, walked the local mall and went to a youth event where I mostly just sat quietly.  Woke up this morning feeling like I'd spent the weekend working out.

Sigh.

Patience.  Taking things slow.  Not expecting too much too soon.  My hope now is that I'll be closer to my "usual" self by the new year.  That would be about 2.5 months.  I have to be honest and say that even that might be optimistic.  So now I'm trying to learn patience.  A little bit each day.

In the end I have no choice.  I can only go as far and as fast as my body allows.  The goal is not to get well fast but to get well.  Doing it right means taking the time I need.

Patience.

Stroke stories - Fear

I've picked up a new companion on my journey back to health.

Fear.

Not a debilitating, paralyzing kind of fear.  Just a nagging irritant that colors everything I do.  The good news on my stroke was that there was no obvious physical frailty that led to it.  The bad news in that is that I have no idea what "caused" it. 

And a tiny little voice from the darkest regions of my mind whispers "Or what might make it happen again".

There's nothing rational in this but then that's the nature of fear, isn't it?

Fear of the undiscovered deficit.  Every time I try something new the question lingers - is this what I can't do?  So far, so good.  And the fear is forced back a little bit each time.

Fear of the simple things.  Coughs, sneezes, bending over too far, standing up too quickly, laughing, the list is endless.  So far, so good.  And the fear is forced back a little more.

Fear of what people might think.  The downside of coming through the stroke as well as I have is that I'm not obviously "recovering".  I look  a little tired but that's it.  Inside I know I'm still only about 70-75%.  The headaches continue.  I know I'm still healing.  It might be easier to deal with other folks expectations if I just didn't look quite so damn healthy, lol.  And laughter helps push the fear back a little further.

Fear that a full recovery might not mean a "full recovery".  Which means what?  That I won't be able to return to the activities I enjoyed before at the level I could do them before.  My relative youth and good health before the stroke are big plusses for me in this.

In the end I can let the fears control me or I can control them.  There is an old American Indian tale about the two wolves that battle inside us all.  One is fear and envy and anger.  The other is joy, peace, love and hope.  The one that wins is the one that gets fed.

I chose not to feed my fears.

Stroke stories - At Home

To be honest I wasn't going to do one on being home.

Mostly because being at home is BORING!

But it part of the process.  Trying to find some kind of normal again.  Simply trying to find some kind of comfortable position.  Sitting, standing and lying down are all uncomfortable for one reason or another.

I think I wanted to avoid it because it's also uncomfortable mentally.  I have to go back to where "it" happened.  There was a certain fear and trepidation when I first went back into my office at home and sat down in front of the computer.  There, in that chair, facing that monitor.  And nothing happened.  It's a desk in a room with a computer.

In those moments I think a little more of me healed.

Home heals me in other ways.  I can catch up with the world a little bit.  I came home to a stack of get well cards from family and friends.  It was a wonderful gift.  I get great support from the comments on Facebook and  here on the blog as well.  I'm trying not to overdo anything but I've had a couple visitors and talked to a couple folks on the phone.  And a little more of me is healed.

I can begin to do things for myself slowly.  Make a meal, get up and down to get things for myself.  Each day a little more.  Today's victory was vacuuming the carpets on the first floor.  Another step towards normal, another step towards healing.

It's also a time of humility.  Being taken care of at the hospital is one thing.  To realize that you can't do certain things yet and will need help at home is different, at least for me.  My lady wife has suffered through a great many illnesses over the last almost 30 years.  It was my role to care for her in my own fumbling way.  I was the healthy one.  Now I had to ask her to come and dry my feet after a shower.  To help me dry my hair, to dress myself in part because I couldn't lean down far enough to get my pants started.  Her great  love of me has shown through in the sacrifices she's made over the last 10 days.  My ego has had to humble itself to accept those acts of  love.  They are freely offered gifts.  The impact of them has been greater than I expected.  I have been blessed with a true partner and soul mate.  

So the pills every four hours routine continues.  The body feels a little stronger every day.  I've been given leave to "take as much time as I need to heal" from my job but part of me is itching to get back at it.  The compromise is that I'll work just a couple hours a day, from home, for a week then look at going back full time.  It's the compromise position between my feeling that I'm slacking and others feeling that I'm in too big a rush.  If it wears me out too quickly I swear here publicly that I will slow down again.

I promise.

Every day I heal a little more.

Stroke stories - in the Hospital

When they saw the bleed in my brain at Westfield they decided to send me to St. Vincent's in Erie which is the closest stroke center.  Normally they would put me on a chopper and life flight me.  Because of the tornado watch everything was grounded.  So I got my first ever ride in the back of ambulance (two!) but missed out on my first helicopter flight.  Ah well, I wouldn't have been able to enjoy it anyway.

Donna and Rachel tell me that the ambulance told them NOT to try and follow them.  It then promptly took off like a bat out of hell.  That's fine with me.

Entry to the Intensive Care Unit at St. Vincent's is a bit of blur.  I remember lots of good nurses and folks helping to get as comfortable as they could.  It was also the beginning of what became a series of surprises for them.

I was a stroke patient so they were going to put in a catheter.

Oh no they weren't.

Those who know me well will probably not be surprised that even in the middle of a stroke I was not only willing to argue with the staff but that I could convince them to give me a chance to do it my way.  My ongoing success with the urinal bottle was something of head shaker for them for the rest of my stay.  Apparently most guys have trouble with this process.  If anyone's interested I can send any guy facing hospitalization with simple clear instructions.  LOL.

The other surprise was my lack of "deficits", all those problems we normally associate with stroke.  No weakness, no blackouts, no verbal problems, no memory loss.  There's no real explanation for it.  Was it a miracle?  I can't argue with that.  The mortality rate for this kind of stroke is actually pretty high so just the fact that I'm sitting typing this out is a miracle.  Divine intervention or "winning the lottery"?  Don't know.  I'm thankful for whatever grace has come my way.

There was, of course, the constant routine of pills and blood draws including all night long.  It's exhausting.

Beyond that my biggest problem was boredom.  I felt pretty good (drugs help).  In fact I was thinking about going right back to work the following Monday.  Today I know how foolish that really was.  If I'm lucky I'll be doing some light office work NEXT week.  One day at a time.

The best news was from the CT angiogram where they run a catheter up into my head and release dye to take a look at the various blood vessels looking for any other problems.  The test takes about 30-45 minutes but you have to lay flat afterwards for 6 hours.  And you can't move your right leg much at all.  Fun.  The good news was that the initial test was all good.  Even better was that since the test is basically a complete survey of the blood vessels.  I now know that I have no abnormalities, no obvious potential future problems hiding up there.  And that there's no greater likelihood that I would have another event like this than there was that I had this one.  Statistically insignificant.  I can live with that.

What comes next?  I'll share my thoughts soon.

So That's What A Stroke Feels Like

That's been one of my favorite lines over the last couple years. When things would get a little crazy I'd just put my hand to my forehead and say “So this is what a stroke feels like”. Always gets a laugh.

I won't be saying that ever again.

On Tuesday October 26 around 5:40 PM I was sitting at my computer in my home office.
Everything was perfectly normal.

Then someone threw a switch. And it felt like the monster from “Alien” was trying to come out of the middle of my skull. I later found out that a small vein near the center of my brain broke open and blood pumped into my my brain. It was the worst pain I've ever experienced.

At that moment we were actually under a tornado watch and I thought it might be related to a sudden drop in air pressure near the storm. I went down stairs to look around and grab a couple aspirin. Then I lay down. Within minutes it became apparent that something was WRONG. The pain actually got worse. Then the nausea. I grabbed my phones and ran to the bathroom. I called 911, then called my wife and waited slumped over the toilet. That's where they found me, curled up in a ball on the floor.

(Yes, I know I'm pretty deep into TMI territory here. Bear with me)

By the time the ambulance arrived (thank you Mayville Fire Rescue, you are the best!). They got my information, got me on the gurney, left a note for my family and got me rolling to the hospital in Westfield.

By this time I'm terrified in addition to being in great pain. Hell, terrified doesn't even come close.  I know a stroke has to be high on the list of answers to the question “What the hell is going on?”. A few years ago my mother died of a stroke. And I don't want to die. And it hurts so much. Just beyond terror is insanity and I got closer than I care to ever be again.

We arrive at the hospital. The lights had been giving me trouble in the ambulance so we had a towel draped across my eyes. They wheeled me in and I heard the ambulance crew tell the ED staff the basics of the case. The next words I remember were some of the best I'd hear that day.

“Jay, it's Dena”

Dena is a long time friend who just happened to be on duty that night. She took my hand and suddenly I had a small stable place to hang on to in the midst of the nightmare. It's what I needed.

(A moment to thank all the folks who helped during this. I was too far gone to remember much of the ambulance crew but I think it was Joyce and Josh riding in back with me. Then Cathy and Dena and Michael Woltz the PA, when I got to St. Vincent's the list of nurses became incredibly long. I know I've forgotten some, especially when I first arrived, but special blessings on Jackie, the two Kims, Patty, Diane, Shauna and Kelly who were with through my time in Intensive Care. Also Drs. Romero (Neuro) and Zeto(internist I think) who were also great)

Things changed once I got to the hospital. And that was good. I still have more to this story I want to share but that comes later.