Ride of Silence

8.03.2013

 

#17, Crooked Tan Lines, Aug 3, 2013: MOM. SAYING GOOD BYE


Today’s my mom’s birthday. She turns 80. Only she doesn’t know it. She is severely hampered by Alzheimer’s. While I was pedaling from Powell to Sheridan, WY, she had a seizure.
 
I’ve written about my mom before in The Phast Times News. As Patricia Phelan, she’s the one who, while serving up spaghetti for a carbo load dinner the night before The Boston Marathon, famously asked, “Why are you running? You know you can’t win.”
It was a laughable memory that became a teaching moment, and later, family lore. After that, I referenced her again a couple of months later in a column entitled, “THE LOOK.” Below is an excerpt.

 

The look on my mom’s face when she first heard Jimi Hendrix’ live version of the “Star Spangled Banner” from the Woodstock concert, set the template for years to come during my athletic career. I just didn’t know it at the time.

This was the pinnacle of the late 60’s; music and culture, with a political statement. The sounds, style, and guitar playing of Hendrix was never seen before. (Though left handed, Hendrix played a right handed guitar upside down, and restrung backwards. Imagine driving your car from the backseat, facing out the back window, during rush hour.)

It was during the second listen that I called my mom to join my dad and me. Once in the living room, there she stood as a statue with her hands on her hips, staring.

No doubt she was hoping for Glen Miller or Patsy Cline when the first obscene and stabbing notes of Hendrix’s high pitched squeal and feedback pierced the speakers.

No doubt she was insulted and thought there should be a constitutional amendment against such music.

With her son leading the charge, no doubt my mom envisioned the end of western civilization, when Hendrix intoned jets dive bombing and strafing the jungles of Vietnam with napalm, during an otherwise patriotic instrumental solo tribute.

At the end of the three minute and 46 second recording, before Hendrix launched into the first distinctive drug drenched chords of “Purple Haze,” I couldn’t wait to ask my mom what she thought, what was her opinion? I was thrilled, and couldn’t imagine how anyone else couldn’t be, too. I expected words of affirmation of what I heard and felt, of a fresh sound full of possibility and giving new perspective.

That didn’t happen. Instead, I got, “The Look.”

My parents only saw me compete in running twice while I was growing up. They attended two of my high school meets. Mom had the same look on her face, then.

I ran in the mile and two mile. In her defense, it was boring. The mile was 23 and ¾ laps of a gym.

The next time she saw me run was 15 years later doing my second marathon, running 2:35 at Boston, and barely missing the Top 100. She met me at the finish line. She didn’t have a clue why anyone would run 26.2 miles. While mom cast “The Look” again, secretly I think she hoped I was done with this silly sport. “What was the point?” she seemed to silently ask.

A few years later, my folks stood at the line of my first Ironman triathlon. If they thought running 26.2 miles was crazy, this really blew them away. Again, what was the point? Slow suicide? And again, there was “The Look,” even though I finished 21st overall with a 10:00:52. Maybe it was of concern. “Why, son, are you beating the tar out of yourself? Why don’t you just stop?”

 

That was “The Look” from my mom. This is the lady who grew up Patricia Coleman in abject poverty during the depression on the poor side of a poor factory town in 1930’s, where there was no food at times or Christmas presents. Where one was happy to get a pair of hand-me-down shoes. It doesn’t get too much bleaker.
 
She, whose parents couldn’t afford to have two children but had 10, was always picked first for neighborhood pick-up games for her athleticism. But they didn’t call it athleticism back then, and they didn’t have “leagues,” especially for women. Everyone just knew she could run, throw, and catch a ball better than most of the guys. Stories are told she could also be just as physical at inflicting pain, and absorbing it, too.
 
As athletic as she was, she never ever worked on it. Training didn’t really exist then. People had to work, and worked hard to earn what little they had. Since there weren’t child labor laws (Thank you, unions!), she went to work at an early age to add to the household income.
 
As she aged, my mom got married and had three kids, as most women of her generation. But, she continued to walk. I mean…WALK! She could hoof it, and for long unheard of distances, too. The next day, she was back at the factory standing at her post making keys and locks for 8-hr shifts, not including overtime.
 
The other parents were skeptical of her when she would mount a bike and tool around Fitchburg. No other parent did that. But as kids, we all loved it, and fought to ride with her. If we didn’t have a bike, we’d run for as long as possible just to share in the excitement of mom being a kid.
 
She was also very good at roller skating, continuing that skill well into adulthood. And there is the time she tried her hand at snowmobiling, doing well until she ran the machine off a wall and into a tree. She hiked for many years over the New England countryside as a scout leader, a position she enjoyed.
 
Yup, mom was one active person. That’s what makes watching her body grow weak so hard. Those close to her knew and experienced what she was capable of with a healthy body. Unfortunately, Alzheimer's has ravaged her brain, and thereby greatly affected her quality of life (something most of us not only enjoy, but relish freely).
 
This past Christmas, it was quiet in the car as my dad, my wife Janalou, and I drove under gloomy skies to what was once my parent’s house. The drive was over lonely country roads where rain continued to fall, and the windshield wipers became the metronome to our thoughts.
 
We moved mom, that vivacious and spunky spirit of laughter and passion, to what will probably be her final resting place: Mountain Home Rest Home.
 
Mom had been slipping mentally due to the devastation of Alzheimer’s, otherwise known under the larger term of “Dementia.” But this past year, and especially in the past month, she slipped further than any of us could have predicted. Her eyes were vacant, and her soul appeared gone. All that was left of a full life that included 57 years of marriage, three children, four grandchildren, and two great grandchildren, horseback riding, and 5K’s, were the strands of past conversations and people long since gone.
 
She couldn’t tell what day, month, or year it was. She no longer recognized her children or her husband.
 
Admittedly, looking back on it all now, it was, and continues to be, a losing battle. As if her brain is on ice, she slides away, and no one can help her. The drugs helped temporarily and only a little, delaying the onset of what was eventually to be, much like watching a train pull away from the station. But more times than not, it appeared to be over-medication that sent her down a mental hallway to a stupor, a warm fuzzy place for her brain to reside for a while, and maybe even doze off right in the middle of a conversation that was too much work to follow and concentrate on. Yes, it was easier to drift off…off…off into the blue skies.
 
And we were left standing there, holding on to the strands of her conversations that became increasingly more and more important, as if she was going to yield the secret of life from a dimension beyond our own. But, alas, that never happened. She slid further away. The pull was too powerful for her. The drugs made it too comfortable, too easy for her to step through a door in her brain where she can’t be overwhelmed by the daily patterns most of us take for granted. She was, in fact, giving in. This was not mom’s personality.
 
~~~~
If ever there was a fighter, it was her. She liked to say her Irish would get the best of her. Not that she sought out an argument or even liked to argue. She was not one to argue at the drop of a hat. That wasn’t her, either.
 
But those things she felt passionate about, usually centering around human rights and indignities, David and Goliath fights involving the city, government, or corporations, she would fly into the fray with no thought of herself being hurt or embarrassed. Though she might not speak with the education of a lawyer or doctor, she would let them know they had a tangle on their hands and that they were on the wrong side of right and wrong.
 
At its zenith, her zeal and passion were unmatched. The woman would cut her nose off to spite her face, starve herself if it meant getting justice, go sleepless for days writing letters, or picketing to draw attention to a cause. She exemplified the phrase, “It’s not the size of the dog in the fight, but the size of the fight in the dog.” In a fight, debate, or argument, you definitely wanted her on your side.
 
But that passion also transferred to happiness. Her laugh was loud and full. Her face would turn red while laughing to the point her sides ached and she couldn’t breathe. She laughed heartily. Her smile, broad and toothy, was indicative of her joy le vie.
 
She loved being active with people. That meant physically doing a sport, art project, or mentally, in a discussion. If there was a gathering of folks, she wanted to be part of it, and support what the group was doing, as long as it was ethical.
 
Yes, she liked a good party, but she wasn’t going to purposely break the law…unless the law had gotten turned around. More than once she had to be held back from confronting officers of the law after an overzealous policeman wanted to prove a point or make her an example. That didn’t always go well for mom. But for showing courage and a willingness to stand up, she always earned even more pride from those around her.
 
Her stubbornness paid off as she was the first to graduate high school in her family and set a standard for the rest of her nine siblings. Staying true to her character, she then made a move that was thought of controversial at the time. She joined the Navy. ...After her parents tried to stop her by not signing the release papers.
 
“You’ll sign them now,” she commanded, “or the day I turn 19 [legal age for a woman to enlist at the time], or I’ll leave on my own and never come back.” They signed the papers.
 
She was far from arrogant given her surroundings growing up. The standard of poverty she lived in was beyond comprehension by today’s standards. Her parents had many kids beyond what their income could afford. This was outside of Boston. Everyone did that back then.
 
There were three girls, and seven boys. Correspondingly, there were three bed rooms: one for the girls with one bed, one for all the boys with one bed, and one bedroom for the parents. Oh, and only one bathroom for all, even after they got indoor plumbing. (Ever use an outhouse in the middle of a January night in Massachusetts? BRRR!)
 
Her parents were second generation Irish immigrants who lived in shanties. My mom and her family lived among the Italians. It was here my mom learned to make an authentic Italian tomato sauce that rivaled others at neighborhood get-togethers. It was a shame in later years she never wrote down the recipe because, among many other things, it became so lost to the hallways and rooms of her mind, that she was unable to remember any of it.
 
Over time, her body began to atrophy, along with her mind. The athletic young girl, who was once picked first for events, could no longer pick up a lamp to help my dad move things around a room. She kept up her walking, going in excess of four miles per day. She no longer entered 5Ks, though she still got the correct shoes, or rode her bike around (it was always accessible). In later years, her bike became very rusty, a sign of time passing.
 
~~~~
I was feeling claustrophobic in our car being passed on the highway home. I couldn’t breathe. I needed patience and space to process all that was going on. I was overwhelmed with both the information dealing with her new life away from us at Mountain Home Rest Home, and about who she is now, the person she’s become.
 
Mom is not the same person she was. She’s more closed off and isolated in her mind, probably wondering just who are these people who keep coming by to visit? Gone is the girl in the woman’s body who had spunk, or as the Fitchburg locals would say, “Moxie” after the regional bitter soft drink. “She’s got Moxie,” I’d hear people say of her.
 
Of all the people I’ve coached or given talks to, my mom is the only person I ever told, trying to calm fears of finishing last at her first 5K, “Don’t worry. There’s always someone behind you.  You won’t be last.” Lo, and behold, she finished her first race directly in front of the police car escorting the last runners. Yup, that’s my mom.
 
~~~
Dementia is the umbrella term under which Alzheimer’s falls. It ranks sixth on the all-time leading causes of death, right behind heart disease, cancer, respiratory diseases, stroke, and accidents. Completing the Top 10 behind Alzheimer’s is diabetes (which Alzheimer’s recently passed), the flu/pneumonia, kidney disease, and suicide.
 
Think you’ll out run the Grim Reaper and the possibility you’ll not end up the same way? Think you’re different? Let me know how this works out for you.
 
Over 5.2 million Americans (including one in eight people over the age of 64) have the degenerative brain disease, according to the Alzheimer’s Association, with 16 million expected by the year 2050 (costing $1.1 trillion.). It’s been called “The Silver Tsunami.” There is no cure or coming back to any degree normalcy from Alzheimer’s, unlike the other Top 10 leading causes of death. Medications only alleviate some symptoms temporarily, similar to taking Advil for a brain tumor.
 
Alzheimer’s starts off with mild forgetfulness that becomes much worse. When one used to only forget his wallet or purse, he soon forgets conversations, and then where he lives. It’s like watching someone descend a staircase as his mind falls apart right before everyone’s eyes. Except for the person involved, who usually sees no problems at all. Everyone else cowers at the toll the disease takes, without apology or reason.
 
During the stair steps down, there are periods where the person levels off, and his loved ones breathe a sigh of relief to catch up and adjust to the new norm. But that, too, is only temporary, as the person’s reasoning abilities and even small tasks become monumental. Soon, they can’t dress or feed themselves. By this point, the person is forgetting who loved one’s are.
 
The last step is when the brain falls into such a ravaged mess it can no longer keep up body functions. Digestion stops, and appetite wanes. It’s only a matter of time before death, as the body can no longer keep itself alive without sustenance. Loved ones watch in dismay as they see the person they used to know change personality, watching a brain crumble before them without any chance of a cure or of slowing the process. It’s like watching a person die while they’re still alive.
 
This whole process has taken about two years for my mom, which is normal.
 
Alzheimer’s disease and other related dementias are becoming important public health problems. Jarett Berry, MD, of UT Southwestern Medical Center, and a co-author on a study of the disease, says, “The fear of dementia in later life is real, and the possibility that exercise earlier in life can lower that risk is an important public health message.”
 
Dr. Kenneth Cooper of The Cooper Institute says Berry’s study, “shows that the most cost-effective ways to prevent dementia are through lifestyle changes that require minimal medical intervention.”
 
~~~
My dad re-lived the little personality differences that had occurred over the past couple of years as the disease set in. He recalled minor things, but significant in the face of breaking what were 79 year old patterns for her life.
 
For example, she had always worn her hair long her entire life. Suddenly he said, she had it cut short, for no reason. Secondly, she never ate breakfast, always opting for a cup of coffee in the morning instead. This changed not too long ago. She began eating an entire breakfast every morning. The third quirky thing was she began wearing a hat every day, everywhere, usually a Boston Red Sox hat, indoors and out. The odd thing is she never wore a hat before. In fact, she disliked them. It was as if she had metamorphosed into another person who was forgetful, unable to finish a sentence, and had unusual behavior.
 
There are things that you think are forever, will be forever, or will always be. Things that you think will never change. That the person you’ve known for a lifetime will always be that person. But, as we all eventually learn, everything changes as one changes. The mature soul learns that, as the days pass, very few things are, in fact, forever. People change.
 
As simple as this sounds, it is astounding in its truth and subsequent ramifications. Decisions once set in stone, and stances or ways of thinking that might have been made of immature pride, take on a shade of grey, far away from the high contrast of a simple black and white world. Nothing is all right or all wrong any longer.
 
Very few things, that is, except love. And love must be worked at every single day if it is to endure that change all around it. Just about everything else known to man can change, but love, if it has been cultivated, can not only rescue those things that change, but also find the true meaning of grace and mercy, to understanding another person, and the changes they have gone through.
 
Over the years, I have fallen in to the same stories that I’ve heard for years from older runners, about their aches and pains, and of yester-year. “Ah,” I’d think to myself while they babbled on, “that will never happen to me. I’ll keep active and always be a runner.”
 
Yeah, right! I’ve watched my running times fall like the stock market in a free fall plunge, unable to give any sort of explanation other than just shrug my shoulders, and wonder, “What just happened? I’ve run training runs faster than that race.”
 
Now, I lean in closer and listen with much more interest to the older runners. I have a whole new appreciation for JAN RICHARDS, DEWEY FAMBRY, BETTY and MURRY FORSVAL, JAMES THURSTON, DAN GREY, NANCY LOWDEN, NANCY COLE and RICHARD CUNNINGHAM, who recently passed away (see page 5), and others.
 
My mom was one of them, in another state, far away. She trudged and fought against her body’s screams to give in. But she wouldn’t have any of it. Yes, she slowed, eventually not able to run at all after both knees were operated on. But she maintained her walking, as much as she could withstand, sometimes collapsing.
 
Here’s an open letter to anyone reading this that if you’re still around if I come under the same spell as my mom, please keep writing material accessible, allow me to listen to my music collection, and allow me to be as active as possible. This will allow me to hold to my memories and dreams, and maybe make new ones. These will allow me to keep a portion of my sanity intact.
 
~~~~
As we drove to my parent’s home to celebrate our own Christmas without mom, the roads rocked the car gently, allowing our thoughts to surface in the quiet. The rain had eased up.
 
If I knew what future laid ahead for my mom, what fate belied her, I wondered what I’d do differently. Spend more time doing... what? Talking, probably. Talking with her with a tape recorder to get her voice, her laugh, her thoughts.
 
Oh, what I wouldn’t give to walk around inside her brain right now, to have a look around, from the simple to the complex, the mundane to the elaborate. Can she taste the difference between a banana and an apple? In her faraway look, does she talk with God and see the universe? Does she know the difference from the imaginary string she constantly plays with between her fingers and the mismatched clothes she’s wearing?
 
Her athleticism is gone because of her brain. This once lively, feisty, and coordinated body is now almost entirely confined to a wheelchair. Her left hand has a tremor. Her body is still able and willing, but her brain is rapidly deteriorating. She can barely handle a spoon to feed herself.
 
“Mom, where are you today? Who are you talking to and what do you see? Can you sit and talk with me anymore?” Probably not. …Probably not.
 
Is this what’s going to happen to even us who exercise several hours a day, who swim, bike, run, do weights, and eat kale? What has age in store for me? The ugly ravages and debris of a brain and body that has no function, left behind by this unremorseful and undiscriminating disease, when I have finally gained the pinnacle of experience to live a full life?
 
What do you do when the road hits you with a curve? When life gives you more than you can run with? Knowing we are all different, it is never easy to determine what the right answer to every question should be.  Mom has the time to ponder the secrets of the sea, and even the answers, but has no way to communicate what she finds.

 

Blue, blue skies, staring into space

A missing soul on an empty face.

Where are you today? Where did you go?

What have you got to say? Tell us what you know.

 

Blue, blue skies, rolling down the road

Listening to the sighs, another slice a la mode

I feel I can’t breathe, but the window’s down

I feel I can’t leave, though I can move around

 

Blue, blue skies, she flies away

Without goodbyes; visit another day

I’d like her to know me, but she’s, oh, so gone

In her world without me she’s moving on

 

Blue, blue skies, I was thinking too much

A hollow voice cries I wanted her touch

Promised never to leave me.

But you’ve got to go anyway

There is no way of stopping you.

But I hope to see you again, someday,…someway.

 

Blue, blue skies, floating on the breeze

January in her eyes and a handful of leaves

Everyone’s got to go, what’s it all mean?

This I know, it’s the time in between.

Heading home, such a long, long way

Heading  home, such a long, long time

 

Blue, blue eyes, looking into nothing

Listening to our sighs, is there something…we can do or sing?

Blue, blue skies, blue, blue eyes
Blue, blue skies…someday.