OrganizeFISH

Between being realistic about grief and being primed to expect more bad things to happen, I am wary to say I’m doing better. But last week was fairly solid. And this week I would even venture to state I felt almost back to normal.

I’ve been going to counseling since returning, and I am so glad I dove into that without even thinking not to. I hadn’t realized how much I had clammed up about my life until I had the dedicated time to talk about it.

It’s slightly fascinating looking back. At the end of second session, I fell to pieces. Not while I was sharing the stress of my uncle Rick needing a new heart. Nor while I shared striking Penny situations that I found in past personal writings since the funeral. But during what I meant to be a passing admission that I had needed to take a sick day not for a physical ailment, but because I was overwhelmed.

My counselor rightly told me to cut myself some slack.

Things have gotten easier. I’m closer to being back in that calm state where I can casually reference these things while to others this is BIG STUFF. To my family, it’s the (not even new) new normal.

It’s twistedly grounding to call home to receive a family drama update. It’s when I’m not plugged into the grapeline that I begin to lose my grip. Once I have exhausted the latest news, I can return to my life and tackle the less important things.

We can never really be prepared for that which is wholly new. We have to adjust ourselves, and every radical adjustment is a crisis in self-esteem: we undergo a test, we have to prove ourselves. It needs subordinate self-confidence to face drastic change without inner trembling. — Eric Hoffer

My intense but weak grasp on being able to enjoy just being had the footing ripped from under it in the last two weeks of July.

In the last five years, my family has gone from quirky but ideal to something that has had me experience what it means to love not just intensely, but with an aching heart.

Last month, my aunt — my father’s and uncles’ only sister, my grandparents’ only daughter — lost her life to suicide as a result of suffering yet undiagnosed Borderline Personality Disorder.

During my senior year of high school, we were only just beginning to get a taste of this mental illness. At the time we thought we were simply dealing with our first, but to the world was yet another, messy divorce. Congruently, Penny was suffering from acute physical ailments.

So little of the behavior during the divorce made sense. For the time, it was this fire forever on the verge of flare up that burned in the background of every family interaction. It was unpredictable and illogical. During my last family birthday party over the summer before I went to college, I remember hoping to god we could make it through with no drama and enjoy just hanging out. Penny left at one point in a flurry; she thought one of my aunt’s had said something derogatory about her.

As much as I hated what my cousins were being put through, I boxed up dealing with this part of my life when I left for school. My grandparents and dad were doing all that they could and things continuously spun out of control. When I first got to school, I received regular updates of what was going on. (My family is a living example of news traveling through the grapeline.) At some point I realized the flare ups had not gone away, but they had become so normal they no longer were being reported.

At the end of this spring, my family finally hit a true breaking point and began the process of revoking Penny’s full custodial rights. The only thing in the last five years that was constant was Penny’s unwavering love for her children. That she made it through the last five years was because of this. But knowing how close her past suicide attempts had been, I recognized this likely would become Penny’s breaking point.

Facing this Reality

As expected, going home and playing a very different role than in past visitations and funerals I’ve attended was partly surreal. However, for the first time in years, there was a comfortable underlying feeling to the event. As Penny’s eldest commented after the visitation: “This is the first time we’ve all been together in a long time.”

After having boxed up this part of my life for so long, it’s been quite the lovely mess during the unpacking dumping of the box. This has also in turn been my breaking point. After everything that has happened in the last year, having this box upended laid out more items than I was able to keep control.

And so I’m working on dealing. I consider it a broken work in progress. This was one drastic change that inner (and outer!) trembling pretty much had to occur in order to do such.

There are twenty-five incomplete blog posts in my drafts folder.  I posted more often before I started making plans.

It’s pitch black outside my plane.  I’m on my way back from a week home.  I scarfed down McDonald’s before my final plane left Chicago:  I’m regretting the drink.  My favorite seat is by the window; I hate having to get up.

While home, I almost had a conversation with someone who assumed I agreed with their dislike of Fort Wayne since I choose to move away.  If this becomes a normal thing for me to experience, I’m going to have to get a sign:  Don’t bitch to me.

Can a grocery store not survive downtown?  There isn’t one.  I would think with West Central there would be a market for a small niche place.  Plenty of hungry hipsters that love riding their bikes around there.

Granted, after reading Nicolette Hahn Niman’s article Avoiding Factory Farms, I suppose there are farmers’ markets during the warmer months.  Regardless, a normal grocery would be nice.

I wish I was more interested in cooking.  It comes in spurts.  With long breaks in between.

My favorite part of night flights:  seeing the civilization below.  (Of course, this intensely conflicts with my dislike of light pollution.)

If we’re thirty minutes out from landing, what city are we above that has such a concentration of lights?  According to the route maps in the airline magazine, could be a place in Canada.  Not that the map is likely to be accurate.

I’m not 100% thrilled about lugging two suitcases home via public transit.  Mostly because it’s going to be dark while I’m dealing with this.  It’s somewhat relieving that I’ve done this route before.

My new carry-on rules!  I feel like such a pro pushing my four-wheeled bag.  (It’s also going to make life so much easier dealing with that AND my checked bag.)

I’m curious if I were to actually use 750words.com, if my writing on my blog would improve.  Or maybe I would just run out of things to say.  (Okay, not likely.  I talk too much for that.)

The new year is coming up next weekend.  I don’t like resolutions; I’m excited about it being a holiday to celebrate.  Are midnight movies normal?  It doesn’t actually have to begin at midnight, I’d just like to be in the theater as it switches over.

Alrighty.  Time to return to where the sun sets at 4 PM.  Good night sun.  (Ode to a book that I didn’t actually read as a child.)

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.

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.

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.