OrganizeFISH

My 23rd Birthday

On my 23rd birthday last month, I prepared an Italian dinner for my high school friends.

Our “weekly dinner” this summer ensures we see one another on a regular basis during possibly the last time we all reside in Fort Wayne.  I made one of my favorite dishes:  manicotti.  It’s one of those “family” recipes that you’ll often find on the back of a box.  This one we refer to as “Sheila’s Manicotti”.

For this meal however, both the tiny Scott’s near my house and the big Scott’s on Clinton had no manicotti noodles.  I had an employee check, and even he was perplexed why there was different pasta taking up manicotti’s space on the shelf.  I resorted to big shells.  Turns out, they’re much easier to fill.

It took me much longer than it should have to prepare the food. Two of my friends were distractingly vocal about their hunger, until I pointed out they could eat the French bread while they waited.  They demolished it.  Dinner was prepared with little time to spare for the friend who had to leave for a rehearsal.  Of all our dinners, this was possibly the calmest.

After dinner, the three girls chilled in my parents’ bedroom, which currently houses my recliner.  We discussed whatever.  Random dating stuff.

Eventually my dad called, and while I was on the phone, my friends quietly left.  My house felt really empty after their departure, even though my boyfriend was still there.

The day prior my family had received word that my aunt Sheila had 24-48 hours left to live.  Some time between finishing our manicotti dinner and going upstairs, Sheila had gone quietly surrounded by her three sisters and two brother-in-laws.

DePauw President Casey’s Inauguration

The day President Brian Casey was inaugurated at my university is another day I’ll remember vividly, but with much more abrupt emotion.

The whole affair was insane.  The party tent on the lawn, for special guests, had real doors!  The procession rivals commencement, if not surpasses it, since it’s for just one person.  I arrived late, so I stood in back for the ceremony.  Afterward, I was hanging with one of my professors and Ed when my mom called.

“Sheila has ALS.”

It was like getting hit by a truck.  I briskly stepped away from Ed and our prof.  It took everything I had to muster together a coherent response.  I think I asked what the next steps were.  Something to acknowledge I had received the message.  The important thing was I managed to hang up the phone before reacting.  Ed stopped mid-sentence after I hung up, came over, and wrapped me in a hug, with no clue what had happened.  I broke down.  We were in the middle of the academic quad.  There was still remnants of the large crowd.  My prof told me after I shared the news I had received that hoped she’d be better soon.  Ed’s retort explaining it’s a terminal illness calmed me.  I can handle logic, and Ed’s protectiveness was comforting.

My strong reaction was in part, easiest way for me to explain, due to selfish reasons.  ”Not again, not again, not again,” ran through my head more as a feeling than a fully formed thought.  This threw mortality in my face.  Twenty-four years prior, on another memorable day, my mother’s father also passed away due to ALS.

He Smiled Until The End

With Sheila’s diagnosis, what we feared true was confirmed.  These two cases of ALS, along with the probable case of my mother’s grandmother, were outside the 90-95% of all other cases in their classification as Familial ALS.  It’s a disease that in over fifty years has seen essentially no progress.  There has been no significant change in prognosis.  While some DNA markers have been identified, they haven’t unlocked any secrets.  Sheila did DNA testing and had no such markers.

However, the emotional ripple this disease has left in my family is strong.  This disease takes away your muscle function, but leaves your brain completely in tact.  The majority of patients die from respiratory failure.  Imagine sitting in your body completely aware and unable to make yourself breathe.  Or having your family visit you, listen to them talk, but be unable to respond.

I never met my grandfather.  He died three years before I was born.  Yet, I know how much my nana loved him.  Loves him.  Oh, the way she would every once in a while talk about some man her age attempting to hit on her.  With such disdain.  No one else was good enough.

Losing The Love Of Her Life

Choosing a charity has always been an impossibility to me.  There are just so many causes.  This year changed that for me.  There are just five cousins in this section of my family.  And my mother is fifteen years younger than her sister.  Any one of us could be the next victim.

The audio in this post were excerpts from my StoryCorps interview of my mother in which I asked her to remember her father and her recently deceased sister, Sheila Edmund.  Sheila requested contributions be made to the ALS Association, 1810 Mackenzie Drive, Columbus, OH 43220 or HomeReach Hospice, 3595 Olentangy River Road, Columbus, OH 43214-4034.

This entry was posted on Wednesday, July 21st, 2010 at 9:55 am and is filed under Uncategorized. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.