Tuesday, January 25, 2011

Where's My Wallet?

In my 15+ years working in the fast food business, I can ensure you I've seen some crazy things at the drive up window.  I can only imagine what the girl at Sonic was thinking this morning when a car with three people laughing hysterically pulled up to her window at 7:30 in the morning.
You see, what had happened was...I rode in to work with Gina and Ryan on my way to breakfast with Brigid.  They stopped at Sonic for breakfast, and for some reason wouldn't get me the new Red Velvet Cake Blast for a starter, something about too much sugar??  Anyway as we waited in line, Ryan pulled out some crisp clean ones to pay the bill (WG? friends can feel my pain) and G saw my reaction. That led to Ryan saying," He can use his own money." To which I replied, " I haven't even seen my wallet in like two years (slight exaggeration there for melodramatic effect)."  Ryan "well, what do YOU need a wallet for, you can't even pull up your own pants! and I'm pretty sure that's a qualification for having a wallet."  BAHAHAHA, that started the laughter...then "Let's see, what do you keep in a wallet? Business cards, you don't have a job so no wallet.  Driver's license, you don't drive so no wallet. Money, well no job, no money, no wallet. Condoms, oh hell, I don't even want to think about that."  It was at this point that the three crazy people reached the window, laughing uncontrollably with red faces and tears running down the cheeks. The cashier just smiled politely; I'd like to thing we made her day, at least we didn't just grunt "coffee" at her.
For the record, I can pull up my own pants...sometimes, most of the way.  ALS takes away some of my most basic functions and it's not fun to have to ask for help with things like getting up from the couch, buttoning a shirt or even getting my pants on correctly.  I miss the ability to chop seasonings for dinner, to pick up my granddaughter and hold her while she feeds the horses, or even to take the trash can out front, but I still have my ability to maintain that "quirky" sense of humor and to laugh at myself.  If it's true that "Laughter really is the best medicine", I think I may have overdosed this morning.  Thanks Ryan and Gina for not treating me any differently than before this disease entered our lives, ALS still sucks but I choose to laugh in the face of the monster.  

Wednesday, January 19, 2011

Looking Up

Everybody loves a good story, right? Whether a children's fairy tale, a classic novel, the year's best movie or sitting with friends and reminiscing, a good story reaches into our souls and grips our emotions. Joy, tears, laughter and passion can all be evoked from the great stories we hear.  Think about what emotions you felt as you heard the stories of Capt. Sully landing that plane, Hurricane Katrina's devastation or the recent shooting in Tuscon.  What we sometimes overlook, however, are the simple stories of our lives and the power they have to stir up those same emotions; to transport us to another time and place, and just maybe, to teach us a lesson we'll need one day. 

So this story is for my five amazing children - Ryan, Brigid, Sean, Kyle and Nolan - because your love for each other and family is the story of my life.  We moved to Jacksonville Florida in 1990 when the kids were all under ten years of age (yep, five under 10).  On a trip to the beach and down to St Augustine, we stopped for a group photo of the kids as they sat on and around an old cannon and the stack of cannon balls outside of Fort Mantanzas.   If you've ever tried to get a good shot of the kids while they were much more interested in something else, you know what was going on. So in an attempt to get the picture, Gina says "Hey, look up!"  Well our little ones promptly looked straight up, not at the camera, but into the sky and it was forever caught on film.  Not only did we laugh that day, but we now have a family tradition of the famous "Look Up" picture.  Just browse through our family photos, time after time you'll find a group shot of the kids looking up - birthdays, graduations, weddings - no occasion goes by without one.
                      Ryan, Kyle and Nolan at Kyle's boot camp graduation

Living with ALS brings its share of distractions, hardships and the temptation to get down in the dumps about life.  But, to you my family, I say this, no matter what ALS brings to my life, I'll always be looking up because that's who we are and that's what we do.   What's your story?


Wednesday, January 12, 2011

A Matter of Faith

As my new life returned to normal this week after all the wonderful holiday visits with the kids and Princess Hayden, head of Big Poppiland, I've settled into a routine that works well for now.  This means I spend a lot of quiet time alone during the day while my beautiful bride is at work, and during this time I've read blogs and books and have been formulating what I want to share this week.  Since Sunday, a day of mourning for Saints fans, I knew I wanted to discuss the commitments I mentioned last time; but how?

ALS takes a devastating physical toll as it reeks havoc on our bodies, it plays mind games using fear and depression, and it challenges even the most faithful in their beliefs. The questions come fast and furious : Why me?  What did I do wrong?  Doesn't God care about me?  How can a loving God allow so much hurt and pain in the world? Does God really exist? If so, why doesn't He do something?

Normally, I'd pull out a whole bunch of Bible quotes and scripture references in answer to these questions and they'd be good answers.  Last night, however, I was reminded that we overcome by the word of our testimonies and I knew that's what I needed to share here.  You see it's very easy for me to have faith in God and Jesus Christ because I KNOW Him; that's right KC and JC are tight!

I was raised in a church going family, my great uncle a priest and I was an altar boy; I knew a lot about religion, still know the prayers by heart and Gina and the kids and I went to church fairly regularly as a family. We were the picture of a good young couple - hard working Dad climbing the corporate ladder, devoted wife and stay at home Mom and five really cute  kids- sure we drank a little too much sometimes and I knew where the best "gentlemen's clubs" were but all in all we were doing OK.  Then through sheer selfish stupidity I almost blew it! A move across country and two miserable years later we were on the path to divorce and the end of this awesome family.  When a longtime(almost said old) friend invited us to dinner, we went and ended up hearing all about her awesome church, and while I thought who cares?, a few things did peak my curiosity.  A group of men who met at 6am each week for prayer and a football stadium of just men attending spiritual rallies led by former coach McCartney - that didn't sound like any church I'd ever been to. So we go to this church in Texas with a pastor from New Orleans, and the second week IT happens -yep, right there in the back row in front of everybody; He shows up, Jesus Christ walked into my life up close and personal!  It felt like I was being pressure washed from inside out and when He was finished I was changed forever.  That was almost 16 years ago and as I've gotten to know Him better, I'm amazed that He knows me so individually and intimately and He has earned my complete trust. When we get together each morning, we talk about anything I want and somehow those questions don't seem so important when I'm with Him.

So that's it, I am strong in my faith not because of the religion, but because I could never turn my back on my friend,  Jesus.  Whether you have heard about him or not, if YOU haven't met Him, I'd like to introduce you; it's easy, say this out loud, follow me:

Jesus, I want to know you for myself, I know that I have sinned and made a lot of mistakes, but I also know that You are the Son of God, His Lamb, who died on the cross to so I wouldn't have to.  Forgive me and come into my life, be my Lord and Savior and be my friend.

If this was your first time meeting Jesus, please leave a comment so that I can thank Him, welcome you to the family and join the party celebrating you in heaven today!

Thursday, January 6, 2011

Warrior for Life

"Today I consider myself the luckiest man on the face of this earth..." Lou Gehrig

Like Lou, I got a bad break when on September 28, 2010 my neurologist confirmed that I have ALS, also known as Lou Gehrig's Disease.  My hope is that in sharing my life with ALS, friends, family and others will be able to keep up with my health updates and maybe someone will learn something new or be encouraged or, dare I say, even be inspired. 

One of the things that I've learned already is that most people know very little about ALS (Amyotrophic Lateral Sclerosis), heck all I knew was that I didn't want to have it. Amytrophic Lateral Sclerosis (ALS) also known as Lou Gehrig's Disease, is a progressive and fatal neuromuscular disease marked by gradual degeneration of the nerve cells in the central nervous system that control voluntary muscle movement. Eventually, all muscles under voluntary control are affected, and patients lose their strength and the ability to move their arms, legs, and body. When muscles in the diaphragm and chest wall fail, patients lose the ability to breathe without the support of a ventilator. Most people with ALS die from respiratory failure, usually within 3 to 5 years from the onset of symptoms. See, now you know why I didn't want to have it and why ALSucks!

WOW! After recovering from the stunning reality that the diagnosis brings with it, I decided to commit to two things: 1) I would remain strong in my Christian faith; 2) I would retain my sense of humor.  Hopefully, you will experience both of these in the stories I share with you,but be warned, the aforementioned sense of humor can be a little "quirky", just ask my family. 

So about a year after what I now know were the first symptoms, and three months after diagnosis my life is already very different from what I ever dreamed it would be.  Physically, I am still able to walk with the use of a cane and AFOs(story for another day); I have no trouble with speaking and swallowing and breathing is still good. Strength in my right arm is minimal but I still have some use of it while adapting to doing a lot of tasks left handed. I made my first public appearance in a wheelchair to go Christmas shopping with my wife at the mall, and it wasn't so bad. I am now retired at age 50 since I can no longer perform my job duties to the standards I hold myself to.  Despite all of these changes, I am looking forward to living the rest of my life to the fullest and have a whole new perspective and set of priorities.   

Thank you to my friends and especially my family who are traveling this path with me, without your love and support I wouldn't be able to embrace the future God has planned for me.  Gina, I appreciate and love you so much, thanks for laughing instead of crying and thanks for your strength, you are the best.