Posts Tagged With: ALS

A Season for Family

I’ve realized from about October to February, is our season of family.  Hunting alone facilitates a great portion of this, and then the holidays manage to cement the rest.  We just don’t have time to spend with many friends, as much as we’d like to.  Family really takes priority.

During the harvest season, I think it is easy to start feeling like you are drowning in the work of a homestead.  I generally feel like I tread water pretty steadily around here, but after a spastic comment on the Apron Stringz blog, when both CJ and Erica of NWEdible reached out to me to make sure that I was alright, I realized my Shiny-Happy exterior was cracking a bit.  While I’m afraid that the comment I left came across way crazier than I intended, the truth is, I have been somewhat overwhelmed.

In April, Rick’s dad was diagnosed with ALS  (aka Lou Gehrig’s disease).  I’ve sort of kept this under my hat, since Rick wasn’t keen on talking about it with anyone, even in person.  He got pretty tetchy when I mentioned it to our neighbor (who is getting to be like family) and to our midwives while I was still pregnant with C.  So I’ve kept it off the blog all this time.  But I started bracing myself.  I’ve seen diseases before.

I’ve had the unfortunate experience of watching my own father pass away.  He was diagnosed with lung cancer when I was fifteen.  Lung cancer has a 15% survival rate and a lot of people treat you as if you deserve to get it.  But my dad hadn’t smoked in over 20 years before he was diagnosed.  The cause of it was more likely asbestos from being a mechanic or possibly having the polio vaccine tested on him while he served in the Air Force.  Or seeing as he had lost a sister to lung cancer, had a brother that got (and beat!) prostate cancer and a father that died of multiple myeloma at 58, maybe cancer was just in his genes.

But my dad was determined to live.  He had surgery, most of one of his lungs removed, chemo and radiation.  He beat the cancer.  He was cancer free for 8 years before his body, racked by the treatments he received, gave up on him.  I was so grateful that my dad lived to walk me down the aisle, to know Rick.  It was hard to watch my dad, superman in my eyes, go from 6 foot tall to 5′-1″.  To see him lose weight.  For me to never sleep in peace, afraid that his oxygen machine would sound an alarm in the next room if my dad quit breathing, even for a moment.  To see his big, strong mechanic’s hands turn soft and thin.  He died at home in 2004, the day before my 23rd birthday.

ALS makes cancer look like the freakin’ flu.

With cancer, there are treatments, even cures for some.  Hope.  With ALS, there is nothing.  Just waiting, watching, making your loved one feel comfortable as they lose the ability to make their muscles work.  The prognosis for ALS is more than bleak.  Stats vary, but we’ve been told that up to 70% of people diagnosed with it die within 18 months.  It is always fatal.  Less than 10% live longer than five years.

Rick’s dad was beginning to show symptoms last October, though we didn’t recognize them.  He’d been feeling weaker for a while longer before that, but just chalked it up to being tired.  He just turned 51 last month.  Because of my experiences with my own dad, I keep expecting to see things plateau with him, but the disease has not slowed at all.  In April, his words were slurred, by May he was hard to understand.  By June or July, he would only answer yes or no questions out loud.  Now it’s even hard to tell the yeses apart from the nos.  His hands and arms are atrophied pretty severely, so he can’t write.  This past weekend, they gave him a feeding tube.

Through this, my, uh… “greenisim” is wavering.  I’m feeling the urge more an more to take the easy way out.  To throw the proverbial grey water down the drain instead of out the window.  (Here’s where the crazy comment on the Apron Stringz blog comes in).  Part of me doesn’t want to care anymore where my food comes from.  I want to turn the heat up to 69° from 67° and not feel any guilt.  Bag the whole Riot for Austerity.  Throwing in the towel looks appealing.  Part of me is wondering why I should care about organically grown green beans when my father-in-law is struggling to swallow.  I’m wondering if  we can sustain our sustainable life style?  And is it worth it?

The truth is, I know in my heart that it is worth it.  But I need to find a way to be ok with what I can do right now.  Maybe the Riot is beyond my reach at this point in our family’s journey.  Maybe CJ’s Quiet Riot, or even just tracking our energy use is good enough for right now.  Maybe I need to be ok with the things we are doing and hold the space while our family gets ready to walk through the coming grief.

I’ve known somewhat more loss than anyone in Rick’s family (all his grandparents are still living), and I know my strengths can be quite helpful in hard times like these.  The loss of his dad is going to be a devastating blow.  And I’m grateful to have this time with family right now.

So here I am, holding the space.  And turning up my thermostat to 68°.

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