Decoration Ghost: Shouting it out any way you can!

28 08 2011

“It’s a part of your life where your sick… and people are taking care of you and people love you and they are hurting for you… and I think you lose a lot of realness…”

It’s a powerful string of words and maybe this was one of the reasons the Often Awesome army and the episodes got to me so intensely.  There is a very real and palpable range of truth and expression in each one of these videos and I don’t think until I saw them that I witnessed articulated all of the possibilities that are felt when you are not only diagnosed with ALS, but also when you’re a person who loves and supports a person fighting ALS.

Its easy to tap into rage, anger, sadness, panic, frustration, anguish….love.  Love is the seed for all of the feelings that follow.  Its because of love that the suffering intensifies and proliferates.

In 2003, my sister, who at that time was a bit of wandering butterfly (think work, rest, land, repeat ~ rather than fickle or flighty).  She was passing through pretty regularly the familial homestead and was catching my mom in her regular daily routine and talking to her pretty regularly.  My dad was working quite a bit, was unhappy at work, and taking the time to run, to defrag after a stressful day (he was an avid runner and had put away a number of marathons), and then it was dinner, snuggles, reading and bed with my mom.  So as much as it sounds like my dad would have picked up on the growing slur in my mom’s speech, it was actually my sister that noted it and starting talking to our mom about it.  My mom didn’t think anything of it really.  I remember my sister approaching  me and my dad and probably not getting a full ear about her growing concern.  It was my own fault for not deeply listening:  I love my sister dearly, but I think it was a combination of our busy lives, catching each other on the fly, and the fact that my sister is very health-conscious intense. I think I had noted it too, but Wendy (my sister) was sure that it was distinct enough it might have indicated a stroke and was pushing to have us join together to push my mom to get it checked it out.  So it was my sister who first noted and started working on getting answers to what was happening; not me, not my dad, not my mom.

It was a year after my sister’s pleas to us all, after my mom had been pin-cushioned, biopsied, prodded, and bled enough, that the medical profession said that her symptoms were consistent with ALS (amyotrophic lateral sclerosis) – Lou Gehrig’s disease.  We were stunned and it was weeks later before any of us had any idea what that meant or what would begin to happen.

Perhaps the most important role that I had during my mom’s illness was one of tireless hope and persistent struggle against letting my mom be treated than anything less than what she was.  I fought for her right to do anything: drive a car, walk down the street, eat ice cream…sometimes just because it was her wish and regardless about what ‘professionals’ or family and friends were cautious or nervous about her doing.  It wasn’t because I was against the reality of what was happening, or was being unrealistic; It was because I wanted my mom to make the decisions on her life adn its quality, come to the realization of what she could and couldn’t do on her own and not be told by others – the same position of respect and self-awareness that we would ask or expect of any child, loved one, friends…or…well…anyone.  The diagnoses of the disease does not take away your life, it doesn’t make you love ice cream any less (my mom had a sweet tooth for this), it doesn’t stop you from wanted to play music, or be treated well or ‘normally’ by those you love any less – it does insert some limitations, logistical, practical, and quite real.  My mom losing her ability to drive, to be independent was huge…but I think really it was her inability to care take others and make other’s lives easier that was the most difficult part; that and letting others take care of her.  She was intensely independent and constantly devoted to helping others, even to the sacrifice of herself.  Its an inherited trait.

So watching such a talented musician like Tim and his friends and family try to find that balance is very powerful and is a potent reminder that this disease doesn’t define us.  ALS might insert unwanted limitations, but it doesn’t tell us when to live or really how to (limitations existentially and physically considered) and it doesn’t make us less than we are: we still love to do what we do and who we chose to love.

My mom kept a journal that no one really knew about; she wasn’t really a journal writer so it was rather unexpected to find.  I had given it to her for mother’s day and told her “I want it to be the place you can put anything” ..the words she couldn’t fit onto a marker erase board or notepad, a thought that was longer than the panic-ridden attention span of a care giver or family member who was trying to figure out what she needed or was asking for.  A place for her to scream and put her thoughts down unlimited by space and time considerations, at her pace, and not the worlds or the diseases.  Nobody saw her ever write in it.  I found it the morning after she died and it is a powerful touch-stone to my family.  Her words illustrate some of what I am attempting to flesh out on her behalf:

I Hate this Chair!

I feel like a baby

bird Your dad runs in

checks to see I’m alive and

runs away   He’s killing

poison ivy

it was growing outside

the front door

got out back yesterday

wanted to cry.  No one had

bullheaded weeds or cut a

shrub tree, all the ras-

berries going to waste

cut grass sets off my

eyes + sinuses

I know I’m boring ===

Live Life Every Day




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