The Last Recording: Tim gets the sound out…and falling down the stairs…

2 09 2011
Often Awesome episode #10

“What a shitty thing to do to a musician. This disease just robbed him of one of his greatest passions and one of the things he’s really talented at and loves to do..really loves to do….”

“…and you have to sit and say its ok…even though its really not…and you..you just hold them…and then you breath….and then you start all over again.” – – Kaylan LaFollette

In the early stages for my family it was confusion and mystery.  There were notes of fear, concern, worry, anxiety…but overall it was figuring out what my mom was dealing with and what we could do to support her.  My mother dealt with it day by day, but there were moments of panic and realization…and outright horror.

One night early in my mom’s diagnosis, my dad was beat from work and stress and decided to lay down for just a second; a very unusual thing for him to do.  My mother, still rigorously defending her right to be herself and be independent, decided to go downstairs to change round the laundry.

Her symptoms were mild at this point. Her voice slurred, she was losing weight (not easy for a woman who was nearly 6’ and weighed about 120lbs) because of her complications with swallowing, and so her muscle was wasting away.  She sometimes used a cane to get around.  She was driving and still doing everything she needed to do, but slowly.  My parents were learning sign language, preparing themselves and being a team looking towards the future.  She was mobile and was defiant about not getting a feeding tube, not as long as she could feed herself; no matter that things she could have eaten in minutes took an half hour or more.

So heading downstairs was not an issue.  Taking care of the house was part of her partnership with my dad.  Giving her husband a chance to rest and taking care of a simple task, was a simple choice.

She stumbled and fell.

Broke her wrist, bruised her head and ribs, twisted her leg, cut her forehead.  The sound shattered my dad’s sleep with a thunderous panic and his guilt for resting and leaving this moment ‘to chance’ haunts him to this day.

The injuries though mostly minor, left a painful reality that would leave a deep fear in my father and a cautiousness in my mother that I had never seen.  It was that first sign of ‘this is going to really suck’, where the suffering of losing what you can physically and confidently do become tangible; weed your garden, play banjo, cook, take a walk alone…and for my mother the ability to be truly alone was gone from that day forward.  For my dad, it was the day that fear of what was coming would never allow him a moments peace and would crush him everyday.

Her damage to her right hand was somewhat determining.  It changed how she could move using the cane, how she could write, drive, do chores…all the little things we take for granted that appear when our primary hand is taken.  With the signs of ALS hiding inside the limitations of loosing a primary hand, so much guessing about what symptom was from what source.  It created speculation about what timeline was present and the preoccupation with that was suffocating to everyone.  My mom probably took it the best; she just dealt with it.  For the rest of us, it was the beginning of a mourning process that we will never be done with.

My parents lost the momentum of signing, because of that hand.  They lost months of holding each other.  She lost weight because of the healing time and pain; muscle mass loss due to the lack of movement, chores, mobility with a cane.

8 fucking stairs.  A simple stumble.  A fucking horrible disease.

When my dad retold this story recently his guilt and despair at losing time with my mom was so painfully obvious.  His racking personal blame, for a moment of relaxing in his own home, within the comfort of his wife’s presence, and where all should be safe, torments him.  He blames himself for dropping his ‘guard’ and  ‘allowing’ her to fall…these feeling are so misplaced, but it is such a cry to wanting that time back…wanting her to never have been hurt…and a deep anger at this fucking disease for killing his wife.

Watching Kaylan’s face…that beautiful, happy, playful, joyous face….tremble with her words…its that feeling all over…knowing that something is coming…taking the days one beautiful and sucky moment at a time, loving as completely and freely as you can and fighting with each other to not let the demon come in the room…to squeeze the suffering in drops and find a way to let them fall without destroying us….watching as a loved one has what they love taken from them by ALS, one step, one word, one kiss at a time…god..there is no way to word it….

its why we have tears and raging screams and why we wring our hands because if we don’t we will destroy not only ourselves….we will lose the time…

‘live life everyday’…..

and never take a kiss for granted.

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2 responses

3 09 2011
Joe S

A fall down the stairs breaking his hip was the start of my grandfathers journey. After a botched hip replacement and a second one to fix the first he was diagnosed with ALS at the Cleveland Clinic. Your story mixed with these old memories.

3 09 2011
alswarriorohio

I’m so sorry to hear that Joe…it was a heart wrenching door to open…but I feel that its time to join voices and make sure that the lives we love aren’t buried in silence and pain…If you ever want to share your story of ALS on here, I would be honored and proud to share it…Thank you for sharing your words!

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