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Tuesday, June 28, 2011

The Simple Things

The guests at this party probably thought I was the one with some sort of medical problem.

“Did he just go to the restroom again?” they must have been thinking.  “Something must be wrong with him.”

Something was wrong with me.  I had to keep going to the restroom, not to use the facilities, but to dry my eyes and compose myself every time I became overwhelmed – which seemed like every ten minutes.  I’ve never left a party where I had to pull my sunglasses over my eyes in order to hide the fact that I was bawling crying as I pulled out of the parking lot.  Let’s just say it was one of the most difficult celebrations I had ever been a part of, and it was a tough, tough day.

What a Stache!
My cousin Matt and I are not what I would call extremely close.  He is my third cousin.  He and I went to different schools as we were growing up.  He is two years older than me.  Sure, we saw each other and talked at family reunions, certain holidays and other family gatherings, but we had our own lives and friends that were mostly separate from each other.  However, he and I do have a lot in common, and although Matt probably does not know this,  I always looked up to him growing up.  He was older than me - a successful athlete, good football player, made good grades, dated pretty girls – everything I wanted to be!  Plus he was going to be a doctor, just like his dad.  I admired the strength he showed when he lost his mother at a relatively young age.  And man, could that guy grow a great ‘stache! 

Being the oldest in my family, and lacking many older male family members that shared my common interests, it was a given that I would gravitate towards him.  Despite not seeing each other often, our age difference, and attending different schools, Matt always showed a genuine interest in what I was doing.  He always talked football with me, told me about how tough college was going to be, and wanted to know what was going on in my life.  He’d give me little bits of advice as we played soccer with the little kids at Easter or played cards with our Great Aunts as they cursed, drank and gambled the day away.  After college, when I was living in Destrehan and he was living in nearby River Ridge, he would play basketball with us at the high school when he wasn’t studying his medicine.  When I later moved into medical sales, he would often have lunch with me to discuss product and basically shoot the shit at his dad’s office.   I was seeing him more often than I ever did when I was growing up, and I was excited about having him around so much.  Unfortunately, that excitement wouldn’t last long enough.

Matt did what he always said he was going to do.  He went to college at LSU where he graduated with good marks, and despite initially not getting into his first choice of Medical Schools in the U.S. (and being chased out of another Med School in the Caribbean by a Hurricane), he eventually landed at LSU Medical School in New Orleans.  He went on to marry a wonderful woman, Amy, and finish his M.D. at LSU.  Dr. Matherne had it all in front of him. He and his lovely wife were living in suburban New Orleans.  He was doing rounds with his dad at his office and working on his residency placements.  Everything seemed to be progressing just the way it was supposed to be.  Little did we all know what was really going on, and it hit us all like a ton of bricks.

About three years ago, just as he was finishing up his M.D., Matt started exhibiting some strange behavior.  He would forget people’s names that he’d known his whole life, say and do inappropriate things, and he seemed to be losing his wonderful sense of humor.  After countless tests, doctor visits, interstate trips to different specialists around the country, Matt was diagnosed with Frontotemporal Dementia (FTD), a very rare progressive neurodegenerative disorder where damage to neurons occurs in the frontal and temporal lobes of the brain.  So rare is this disorder, in fact, that Matt is believed to be one of, if not the youngest people to ever be diagnosed with it.  The disease destroys the cognitive ability that produces personality, abstract thought, language comprehension, perception, memory and hearing.  There is no known cause.  There is no known cure.  Matt’s disease was progressing quickly, and a not-so-firm prediction of about five years was given.  Eventually Matt would lose all of his cognitive abilities, and his brain would shut down completely.  It was unfathomable to think that Matt – football player Matt, Frat guy Matt, DR. MATT - was going to pass away from this disorder at such a young age.  It couldn’t be, we all said, but unfortunately there is no denying that this is the case.

One thing that cannot be denied about my cousin is that he knows how to pick a woman.  His wife, Amy, has dealt with this tragic situation with more compassion, strength, and grace than I can even imagine.  As far as I’m concerned, she’s a combination of Jackie Kennedy and Mother Theresa.  At a time in her life where she should be decorating houses, progressing in her career, and thinking about babies, she is instead taking care of her ailing husband and writing a blog to keep all of us updated on his condition.  She has truly taken the phrase, “in sickness and in health” to a different level.  Between Amy and his parents, Matt was taken care of as long as possible at home until they were forced to place him into a care facility last year.  It had to be hard for her to take this step, seeing as he had been a daily influence in her life for almost 10 years, but that is what he needed.  Dr. Matt Matherne, who grew up dreaming of helping others, needed more help than his family could provide on their own.  Matt was unbelievably lucky to choose such a wonderful person to share his life with, and I know that despite this terrible journey she has been on for the last few years that Amy would not do anything differently.  

If there is any kind of silver lining to this darkest of clouds, it is that Matt doesn’t understand what is happening to him.  For the most part he is happy, although he does get frustrated from time to time.  He loves to eat, smoke cigarettes, and dance to rap music.  He has very little attention span, however, and usually cannot concentrate on one thing for more than a few seconds.  Recently, as his disorder has progressed, Matt has begun to speak less and less.  Usually his speech is now relegated to a whisper and only short phrases such as “I love you.”  He still proudly refers to himself as “Dr. Matt Matherne,” as he well should.  This disorder is very similar to Alzheimer’s, and sometimes patients with these neurological diseases become angry and aggressive.  Thankfully (since Matt is physically very healthy, big, and strong) this hasn’t happened with Matt.  I believe this is because the Matt we all knew and loved is still in there, trying to show through.  These are circumstances that we have to feel thankful for, because it would be so much harder if he understood what we all know is happening.

Matt turned 30 years old two weeks ago.  Last Sunday, his family threw a birthday party for him.  There were family members and great friends.  There was a D.J. blaring festive music, and food and drinks everywhere.  Matt was excited, walking around in circles with Amy in his hip pocket, shaking people’s hands (most of which he didn’t recognize), eating lots of brownies and every now and then running outside to shoot some hoops.  Everybody at the party had smiles on, but everyone also knew that they were half-hearted smiles, because while we all were happy to see Matt we knew that the person we all loved and cherished was leaving us by the day; the hour; the minute.  

When I really started to lose it was when I saw his room for the first time.  His nameplate read “Dr. Mathew Matherne,” complete with a picture of him in his white coat in the hospital.  Inside, his Medical Diploma hung above his TV.  He had hundreds of pictures  - Pictures with his frat buddies, with his high school friends, football pictures, pictures of his late mother, and wedding pictures of he and Amy.  Seeing these pictures, some taken no more than three years prior, made me realize something:  We cannot take anything for granted in this life.  Three years ago, Matt was playing basketball, sewing injured people’s fingers back on, and could recite the atomic weight of Boron from memory.  Today, he speaks in one word sentences and has trouble recognizing his friends’ faces.  We can learn from Matt that every day is a gift, and we need to treat it as such.  I am as guilty as anyone – always looking forward to the next weekend, the next vacation, the next promotion – but I am reminded that I should slow down and just take this thing one day at a time and, like Matt now has no choice but to do, find joy in the simple things in life.

As I was leaving the party, Matt circled to me a fourth time and shook my hand.  I looked him in the eyes and told him I loved him and he responded by looking me in the face for a few seconds, glancing at my name tag, giving me a hug while whispering “I love you” back, and giving me a quick punch to chest as he grabbed for another brownie and walked away happy as could be.  

The Simple Things.

****You can follow Matt's progress at or like his support page on facebook.

Please donate to "The Matthew Sanderson Matherne Trust" to help support his 24/7 care, and support of FTD education and research fund.

All donations can be mailed to:
The Matthew Sanderson Matherne Trust
6717 W. Magnolia Drive
River Ridge, LA 70123

1 comment:

  1. I couldn't finish reading this due to the tears in my eyes & I'm at work in the middle of payroll....Prayers for Matt, his lovely wife...his family and friends. Prayers for each of you to have strength and peace during this difficult time....I agree it's a blessing he doesn't realize what is actually happening. Since becoming a mother 2 short years ago, I just cannot fathem the thought of something like this happening to me, my husband or our child....sadly I know it can. I hope this makes sense. I felt I needed to say something-not just stop reading b/c Matth's story deserves more than that.