Fear of Losing My Father

"Your father has Peripheral Neuropathy."

That’s what my mother said. “P-e-r-i-p-h-e-r-a-l N-e-u-r-o-p-a-t-h-y.”  She said it slowly so that I could comprehend her words.  I didn’t.

“Oh” I said.  “I’m sure good doctors can help him with that.”

The words she spoke were something I could barely pronounce, much less understand. In hindsight, I was naively indifferent.

Several years before, my parents picked me up at the Anchorage International Airport.  I had flown in from California and was with a friend when I saw them both, excitedly waving me down as they spotted me through the crowds of people.

I was equally happy to be home.  My mother was walking quickly toward me, the way she does when she wants to come up and throw her arms around me and give me a big tight hug while saying “Oooohhhhhh, let me look at you!” and then gives me this great big tearful smile as if she is in disbelief that her daughter is standing right there in front of her, and then she hugs me tightly again.

I am lucky because I still have my parents.  Many of my friends have had to suffer the unimaginable loss of their parents’ arms around them, and through their grief and loss I have realized how fortunate I still am.

But as my mother came up to hug me, I noticed my father was walking with a peculiar imbalance to his gait, like he had one celebratory drink too many before my arrival.  Undoubtedly my dad likes his V.O., especially in the evening after a good day while sitting in his Archie Bunker chair.

But, with the exception of one night many moons ago when my tequila drinking uncle “Nacho” persuaded my innocent father to share a bottle so they could get to the worm on the bottom, my father has never been one to drink to excess, much less in public.  I was eager to see him, but a little embarrassed too.  Couldn’t he have waited until after I got home to celebrate?

I am ashamed to say that I was wrong.  Not only was I wrong, but there is nothing I wouldn’t give now to have been right. If I could go back in time I would pray to the gods that my father’s lack of balance was nothing more than having had one drink too many, and then I would go home and offer to make him another one, and we would toast, and everything would be right with the world and we could laugh about it later.  But I was wrong, oh so very wrong.

May dad, my stubborn, strong, “bring your car into the garage and I’ll look under the hood” father has a neurological disorder that affects primarily his arms and his legs and has gradually taken over his physical abilities, his muscle movement and his sense of balance, aside from a laundry list of other symptoms.

Other than the loss of a child, I wonder if there is anything as heartbreaking as watching the physical demise of our parents, who once carried us and tossed us in the air, tucked us into bed at night, and fought off the monsters that threatened our imaginations.  I have not been prepared for the emotional turmoil I have experienced while watching my dad fight this battle, but because of his courage in facing his own very real monster, he has never made me more proud.

My father was “that” guy, you know the one; the guy that could build, create, restore, invent, and do anything.

Many of our dads were cut from that same cloth, especially in Alaska before the 1960s when men had to be hardy and resourceful just to survive the winters. We called my dad the “tent pole” of our family; the glue that held us together; the self-made idea man.

He started out as a sheet metal mechanic, became a foreman in his teens, and built his first house himself, at the age of 18.  By 21 he ran the first and only Montgomery Wards in Anchorage, only to realize that he wanted more than to punch a clock.

He wasn’t cut out to be a company guy, and so he eventually started (with my mother) a successful pest control business, against the odds of all the advice from others that there were “no pests in Alaska.”  He proved them wrong.

His success afforded us the luxury of travel for three solid years, the first of which we traveled to Mexico in a luxury motor home that he restored with his own hands from an old Navy bus.  As he got older he cross-country skied, took square dance lessons with my mother and did a zillion other things.

One memory I have was of my dad hanging the old fashioned Christmas lights (before they were old fashioned) from tree to tree in the front yard, and every year when the frost covered the branches and the lights twinkled he would exclaim “They look just like the Northern Lights!”

I will, however, never forgive him for the year he went a little crazy and decided to build this magnanimous Chevy Chase Christmas tree out of pipes and wire and lights and stand it upright on top of our house for the world to see.  Oh, that was fine, but making my brother and I stand in the snow in sub-zero temperatures for over an hour while he hoisted it on top of the roof, not okay!

Granted, he can be a little overzealous at times, but somehow my mother, brother, and I often became the unwitting victims of his eccentric schemes.

But now this ugly disease, this deterioration of his nerves is slowly trying to take over his body, and because his type of neuropathy has no source, there is no cure.

It has been a painful journey for all of us, but I have earned respect for the dignity and courage that he has worn like a soldier in spite of the slow demise of his balance, his constant pain, his inability to pick things up with his hands, and even his struggle to type when he loves nothing more than spending hours in front of his computer. What is easy for you and I is extremely difficult for him. 

Unfortunately, he was told several years ago that it was time for a wheelchair.  Not that a wheelchair is a bad thing, but you don’t know my dad, no one, and I mean no one, tells him what he needs.

Instead of losing his temper, he went into his very manly garage (which he has all set up with walkers and chairs and handles and things) and built a walker. Not just any walker, but one that wouldn’t tip over with his loss of balance; that stood high enough that he wouldn’t hunch, that has bicycle wheels so he can push it rain or shine, ice or snow, with a seat so he can relax when he’s tired, inclusive of brakes for going down the smallest of hills and hand warmers made out of battery operated curling irons, for freezing temperatures.

Now granted, he has store bought walkers for inside the house, but this very special walker is for the two mile walks he has taken outside regularly for the past several years since he was threatened with the wheelchair. He can’t tip over with this one.

I won’t even go into detail of how he has equipped the house to accommodate his need for mobility, but let’s just say the inventor within him has surfaced now more than ever before.

Fortunately for my dad, he has my mother. She has been his pill counter, his cook, his nurse, his ambulance driver for emergency visits, made more runs to Home Depot for nuts and bolts for his inventions than most people make in a lifetime, and still mixes him a VO when the occasional desire arises.

I can’t pass up the opportunity to say how absolutely amazing my mother is and how lucky he has been to grow old with a woman that has stood by his side for 55-plus years, through thick and thin, illness, and peripheral neuropathy.  At this point in his life, she is his everything (and admittedly, he is hers).  If my mother wasn’t a non-practicing Catholic, I would say she deserved the status of a patron saint.

As far as my dad, he’s still that guy.  He is still the tent pole in between his visits to the emergency room and his mind is sharper than ever.

Thanks to his love of research and the Internet, his interest in anything and everything he can read about, the dirty jokes that he finds and shares, even though he is the only one laughing, his passion for political debate even when no one is listening, and his lifetime interest in science, he is never bored.

Peripheral Neuropathy invaded my father's nervous system, and although I am left with the overwhelming fear of losing him, true to form my dad has looked this disease fearlessly in the face, stood his ground firmly and said “bring it on.”