Sep 28

What happened

I used to remember things in reference to significant events in my life.  My marriage, the birth of my children, Buckeye’s National Championship.  Times have changed.  Now every day is a new life.  When I wake up and am able to see the alarm clock, I’m happy. Blowing my nose means I’m breathing.  Sneezing is exciting.  Swallowing my food without a feeding tube makes me giddy.  Seeing my children is the greatest activity I know.  My wife is my life.

This all started when I was conceived in the fall of 1966 and born on July 11th of 1967.  I was raised on a tomato farm where I lived a life much different from what my kids have today.  My mom and dad had no idea that their 10th child was born with defects in the middle of his brain stem.  During the course of my adolescence there were definite signs but nothing was diagnosed until 1992 at the University of Chicago Hospital.

That’s when a diagnosis of multiple cavernous malformations was given.  At that point no prognosis or exclusions were given.  I went on living my life with my new bride and raising a family that includes 3 amazing children.  I married Connie Brueggemeier in September of 1990.  She grew up on an egg farm, near Luckey, OH, 10 miles north of Wayne.  My life would be completely different without her.

That life journey brought me to Columbus where our life together flourished.  During that time God put people in my life that have changed me forever.  That includes my friends, people I’ve worked for and sometimes even sold to.  My journey took me to a church council where I even served as president.  I attended Promise Keepers in 1999 and, to this day, still meet with friends for breakfast on Friday.

After being displaced from my job at IBM in 2009 I found employment with a much smaller organization. All of the kids had what they needed. We enjoyed vacations every year and never missed a meal. I felt like I was on auto pilot.

In October of 2010 after seeing double and having eyelids that drooped uncontrollably I was told that the Cavernous Malformations had bled or moved.  However, the doctor was adamant that I “never let anyone operate on my brain stem”.

Life goes on.  My wife, Connie, and I took a trip to Cancun for our 20th anniversary and everything was wonderful.  In February of this year I even bought a new car.  This is the car that I had driven 3 weeks before my last trip as a driver.

That’s when, on March 3rd, I went to Cleveland for sales training.  During the course of the day I noticed that the power point presentations were becoming doubled on the screen.  When the day was over I walked to my car and gingerly left the parking garage.  During the ride home I had to stop several times.  I called home to tell my wife what was going on and that I would try to get some rest.  Maybe the symptoms would go away.  They never did.  Several hours later I arrived home safely where I flopped on the couch.  At 3:00 in the morning I woke up and went to go to bed.  On the way I stopped for a look in the bathroom mirror.  For the first time, I saw what you see today.

After the kids were off to school we went to the ER. When the testing was over the doctor came in and said, “You’re going to want to consider someone operating on your brain stem. Your conditions will only get worse as the bleeds of the cavernous malformation become more frequent. We have 3 options for surgeons in this field. The best option is in AZ.” That evening Connie and the kids came to visit me in the hospital. I think they were much more nervous than me. At that point I heard a clock start ticking. It was a clock that I heard day and night.

While Connie filled out the necessary forms and gathered the medical records, I waited and grew increasingly worried about further bleeding.  Connie sent the records to the “rock star” doctor in AZ with money for processing and a commitment that we weren’t using him for a second opinion. The doctor and staff in AZ had to review my case and determine if I was a candidate for surgery.  I didn’t know what I would do if he didn’t accept me, so we went to the third choice at the Cleveland Clinic.  The doctor seemed very knowledgeable and indicated that they perform a couple of these surgeries a year.  However, he told us that he knew of the doctor in AZ and said that if he were in my shoes, he would want Dr. Spetzler (aka rock star) to operate.

Most of my days during those first two weeks included sleeping or listening to my daughter’s iPod. My oldest son was nice enough to put his Beetles, Pink Floyd and Hendrix songs on it so I could listen in solitude. When I wanted to see clearly I would have to lift my eyelid with one of my hands. Lifting both at the same time would mean serious double vision. For the first week I was afraid to drink anything but water. For the next few weeks I took comfort in a few glasses of Maker’s Mark or beer at the end of the day. It seemed to help me cope with the situation that became annoyingly constant. I thought my eyes would go back to normal like they did in November. During the next few months I woke up after having the dream that I could see with two good eyes. No such luck.

Lifting my eyelids by hand meant that my fingernails needed to be trimmed regularly. I couldn’t see well enough to use the fingernail clippers so i tried to use Connie’s fingernail file. The first time I tried this my nails were long so I used the coarse side. Not knowing how far to go, I ended up removing some skin. I wasn’t sure how bad it was so I showed them to Connie. She gasped, “what did you do?!?”. She tried to hide the file from me. Once she even clipped my nails for me. That was humbling.

On March 8th I met with one of my customers.  He indicated how sorry he was to hear about my situation.  He said, “I’ve never met anyone that was going blind.”  That one stuck with me.

In the morning, when I was lucky enough to forget about the “ticking” clock, I was reminded when I couldn’t open my eyes enough to see the alarm clock.  For the next month I was forced to tilt my head back and look out of the slit from the bottom of my eyes.  Maybe, if the surgeon in AZ accepted me as a candidate for surgery, I would be able to see again.  Finally, the call came from Barbara at Dr. Spetzler’s office in the Barrow Neurosurgical Institute at St. Joseph’s Hospital.

Our conversation was predicated by having read a letter indicating that the surgery is intended to keep the symptoms from getting worse. Only in certain cases did they get better and 25% of the patients ended up worse than before the surgery. Once our conversation was over I went downstairs to reserve flights for March 28th returning on April 5th.  As I went through the reward miles process, I inadvertently ordered 2 first class round trip tickets for Connie and myself. This proved to be a very fortunate mistake.

Before my surgery, Connie sent another “update” to my email list of friends and family.  That note was sent to many different people that have played a role in shaping my life.  Some of them were my friends from IBM.  They ended up taking me to lunch and showed how much they cared.  One of those ways was when they bought me an iPad.  Bill Brown, the leader of these friends, noticed how the screen lit of my face and collected donations from Perry Carfagna, Ken Brenneman, Mike Sapp, Ted Sapp, Bill Brown, Jane Schneider and Brent Heuser.

My mom and dad, age 81 and 85 respectively came from Wood County to spend the week with the kids.  Grant was still not driving but had to be at rehearsals for the “pit” band of the play “Hello Dolly”, Jess was playing 7th grade softball and club volleyball and Colin was playing baseball.  All while still in their schoolwork.  The night before we left Grant informed us of his struggles.  Life goes on.

We left from home at about noon the next day.  That was after a special call to my old friend Pastor Reichert.  He’s one of those special people placed in my life.  Prior to that call, there was a brief conversation with the kids that was as positive as it could be under the circumstances.  I remember telling Jess that I should be her only boyfriend for a long time.  The door bell rang.  It was my good friend Pete Miller.  He had come to take us to the airport.  Before that I had to say goodbye to my mom.  She was crying with concern about her baby.

Our flight to AZ was uneventful.  I had the pasta in first class.  Connie made the mistake of getting the chicken and it was dry.  We found our hotel and relaxed.  The next day my brother Neil and his wife Carol drove in from Wayne.  They met us after my MRI and initial doctor visit.  That’s when we met Dr. Spetzler and his assistant Dr. Schneider.  They looked at me, opened my eyes and said that they probably couldn’t help me with the right eye which had a damaged third nerve.

Our niece, Lindsay Stamper, and her newly ordained husband, Aaron, had friends in Tempe from his recent internship.  One of the friends, Pastor Steve, met and prayed with us the day before surgery and the day after my release.  Good friends of my mom and dad, Frank and Marilyn Boucher, spent time with Connie on “surgery day” as well.  On Sunday, our friends Jim and Nancy Chadwick with their kids Peyton and Conner brought us lunch from Honey Bear BBQ.

When my brother and sister-in-law arrived we went to The Old Town Tortilla Factory in Scottsdale.  That’s where my friend Eric Gowans met us once his flight had landed.  The next morning, Eric took Connie and me to the hospital and waited with Connie during the surgery.  He had stayed at the same Fairfield Inn next to – one of my favorite places – IHOP.  The surgery was successful.  I was walking the same day and discharged the next.  Before getting discharged I noticed that my leg had fallen asleep.  Upon further review it appears as though my entire right side was numb.  That continues even to this day.  The doctors believe that this is due to swelling in the brain causing pressure on a nerve.  I hope it goes away soon.  I’ve heard that after any sort of surgery or brain trauma it takes 6-12 months for the swelling to subside.

My checkout was on Saturday, April 2nd.  That afternoon, like many to follow, I napped after lunch and took a leisurely walk with Connie.  That evening Eric left for a business to trip to the Cayman Islands with his work at HP.  In the morning my oldest brother Dan and his wife Susie arrived after an adventurous flight from Detroit.  Just then Neil and Carol set sail back to Ohio.

Before I was discharged, from the hospital, they gave me Extra Strength Tylenol and a prescription for Percocet.  Four thousand mg’s of tylenol in a day was my limit.  The Monday after surgery I began to experience fluid in my ear.  It gave me a headache and I wanted to be sure that I was pain-free for my plane ride home.  We went to the ER and had another MRI.  They told me to buy some Afrin and spray it twice a day because the eustation tubes had moved during surgery.  Nervous about Wednesday, I started taking the Percocet and felt fine.

After repeating the daily cycle of eating, walking and sleeping.  Wednesday morning came and Dan and Susie took us the airport.  The flight home was fine until we reached our cruising altitude.  That’s when they brought us our meal.  I started to eat but soon began to give it back.  For the next 4 hours we were left waiting for the next round.  The barf bag never left my side.  Then our initial descent began.  The bag was filled by the time we hit the ground.  When they said we will be on the ground in 30 minutes, it seemed like 30 days.  Connie had the flight attendant call for a wheel chair once we arrived at the gate.

During the next month one eye started to open.  The other did not.  When the lid is forced open my vision is double.  I tried my best to go to business meetings.  My friend, Eric Vonderhaar, from Mainline took me to my first meeting on April 19th.  I can only imagine how I looked.  Fortunately, the customer is an old friend.  He made it easier for me.  Most of the meeting was spent looking out my little portal to the world.  A little hole with eyelashes…usually being opened by my index finger.  Since that day. I’ve had many drivers.  Sometimes my coworkers or friends are kind enough to pick me up.  Mostly I have the prettiest driver in the world.  She’s actually a lot more than that.  She’s a lot more than my caregiver.  She’s my wife, Connie.

It’s been 6 months and my vision hasn’t changed and neither has my faith.  My impact on people is very noticeable.  My portal on the world cuts out a lot of “noise” and shows people for what they are.  All of my meetings are intentional.  There are no occasions that don’t matter.

Like many of you with children, we said prayers every night before bed when they were little.  Since then our family prayers have been limited to food.  There is one that we say before the meal, there’s on that hangs on the refrigerator and the Prayer of Jabez in the dining room.

Just when you think you know of the impact that you’ve had  – you get surprised.  During my trip to AZ my oldest son told me of how he and his friends were praying for me.  I love you dad.  After my surgery Connie was telling the kids about how I disappointed that the surgery didn’t fully correct my condition  My youngest phone took the phone and said “patience grasshopper”.  Where did he get that?  I forgot to tell you that we a lot of humor in our family.  Then on Father’s Day, my daughter hands me her card.

Dear Dad,

Happy Dad’s Day!  I hope you have a great day because you definitely deserve it.  This font is for you.  It’s called ‘You’re loved’.  I picked it because it describes you perfectly.  All the cards and TV commercials always say, “My dad’s the best!”.  But they’re all lying!  You’re the best ever.  Sure, other people’s dads are great.  They’re younger than you, sportier, funnier.  But you’ve got something they don’t have.  Bravery.  Even after everything you’re going through, you still get out of bed in the morning.  You still joke around.  You still go out and play with us and cook on the grill, even though you only have half of one good eye!  Through all that, you still put a smile on lots of people’s faces.  Especially mine.  But you do more still!!  You inspire me.  You teach me that even if you go through everything, believe that everything turns out okay in the end, believe that sometimes, that the only thing that you can do is hope beyond hope, then maybe, just maybe, you’ll make it out alive.  Not always unscathed, but alive.  And giving me that hope, that sense of belief, well, I’d take that over a dad with two good eyes anyway.

Love, love, love, love, love, love

Jess

Regardless of my condition I am blessed to be here today.  There are many of you that would give anything to have a loved one back in most any condition.  While it’s true that I’ve become more of a burden to many people, I hope that my positive attitude and impact out-weighs that burden.

After all, I am alive.

Sep 28

I’m thinkin, I’m thinkin…

I’m thinkin’ that since this is my maiden voyage with a blog, I’d better have something to write.

Where should I begin?  Most of you know my story or at least part of it.  What you don’t know is why I wanted to start blogging about it.  My hope is that something good will come from others hearing about my struggles.  Hearing and reading about everything that’s been going on, while maintaining my attitude and personality.  I’ve always said that my wife married me for “better or worse” but she never thought I would stay the same.   There’s nothing wrong with being who you are.

Maybe that’s it.  How do you not let your current situation become who you are?  This life goes by too fast to change with every economic, political or personal mood swing.  People like us for who we are, not who we used to be or could be.  Just ask my kids or any child about their parents.

I hope that you find a nugget of hope in my coming posts.  A little something that you can put in the back of your mind for one of those days that you think may change who you are.