Friday, September 29, 2017

Thanks Jay

September 29, 2016 was one of my worst days ever. It is up there with September 11, 2001 (obvious), and December 25, 1996 (the day I lost my first child due to a miscarriage). It is the day I was diagnosed with ALS.

On that day I thought my life was over. Immediately. Within a week's time I had letters written to my kids, the outline of my own obituary, and a list to Adam of who gets what. I was mostly putting on a brave face but I wasn't necessarily feeling it inside. And then I began to realize that I was living, not dying.

But in recent weeks I began to dread the diagnosis-versary of September 29. It was looming large,, bringing up all those feelings of disease, death, and dying. Until I read this:

Written by fellow blog writer, colleague, and friend, Jay gave me the gift of changing my perspective about "my worst day ever".  He made me realize that I am still here, and even though I am different in so many ways, I am kicking ALS's ass! I can face ALS, stick out my tongue, say FUCK YOU, and get on with living.

Don't be fooled. I still spent a large portion of this week overthinking, crying, crying, and crying. But when I woke up this morning and the cool Autumn air was blowing through my windows, and the sky and clouds were crisp with color, the dread of this day left my soul.

Today I will follow Jay's example, bake a cake, and celebrate that I am still here. I plan to keep up this tradition for many years to come. Thanks Jay.

Friday, September 22, 2017

Folded In

My body is folded in like a Chinese fortune cookie or a polyester napkin found at fine dining establishments.  I am on my back ready for bed. The comforter is pulled up to my chin, but my feet are peeking out of the bottom. They have become arcs, no distinguishing bones, smooth and shiny skin, pressing in, big toe touching big toe.

I am warm. I struggle to release my folded arms from the weight of the blanket. Adam sees me struggle and instinctively knows what I need. He brings the comforter down to my waist. My folded arms are exposed. Knuckles bent, I can see the tan line that was created between the part of my fingers that are seen by the sun and the part that typically lies on my abdomen. Arms now crossed over my chest as if I am in a casket. I wonder if the funeral home crosses your arms if the casket is closed... I wonder if Jews cross their arms...

I am watching TV but I am not really watching. It is merely background noise to my thinking. Then THE commercial catches my eye - the one that is indicative of much of what is wrong in this world. It is a luxury car commercial. The "professionals" in the commercial are bumping their heads, tripping up the stairs, until one man drops all of his papers as he is getting into his non-luxury car. The man driving the highlighted car has an emergency brake system that automatically stops the vehicle. Camera pans to the driver's face. He has a look of annoyance and disgust. Almost like "what the f*&k"! Then the driver zooms away, running over the man's papers. Really?! I would be more likely to even consider purchasing this car if the driver got out and helped the poor soul pick up his papers.

I go back to thinking about my day. It wasn't bad or good. Just regular. I had a regular day. Marie, my caregiver is very nice to me and we have fallen into a routine. She likes to walk and I like to be outside, so we are a good match. Marie has encouraged me to explore different walking routes, so we are seeing a lot of people out and about. We mostly walk silent. Sometimes Marie hums or sings softly. She has a pleasant voice. We went to CVS last week and as I was introducing my "friend" Marie to my friend Marilyn, another woman walked by and smirked. I keep thinking about that smirk. Was it because she thought Marie can't be my friend because she dresses in scrubs and takes care of me? Or because what I said struck her as "cute"? I want to go back in time and ask her.  But the reality is she wouldn't be able to understand me.

I think about the ALS walk. It was a memorable day. I giggle a little about how Kay and I both cried as we hugged each other goodbye. It's not like we won't see each other - we live around the corner! I guess the emotions of the day caught up with us. Most of the walk teams were in Memory of teams. That was a slap in the face - a reality check. I am going to die from ALS.

I go to my nightly routine of moving all the muscles I still can. My eyes; my tongue; my lips; my arms; my thighs. There are some others. The movement becomes less over time. I notice it. I am not sure anyone else would. I wish for dreams in which I can move all my muscles. Like the dream I had last week where I was teaching and running with my students and a bunch of them turned into black jellybeans.

Most of my recent dreams revolve around school or teaching. I am walking in all of them, but I am always experiencing some sort of problem, like the black jellybeans, or I have 100 students in my class and not enough desks. In one dream all my co-workers kept coming into my classroom and asking me phonics questions and I did not know the answers. I don't think about school during the day, so I guess it comes to me in my dreams.

There is a boy in my neighborhood who can often be found at the creek. He carries a bright yellow fishing net. He told me he likes to catch minnows. He stands on the road above the creek, I assume because his parents told him he is not allowed to go near the water. His child-size net does not reach the water. The first time I saw him he had attached his net to a large stick. It still didn't reach. Every time I have seen him since he has come up with another way to try to catch the minnows. He refuses to give up.

I am folded in but I refuse to give up.

Sunday, September 10, 2017

more than

I am more than
Make eye contact with my husband because you don't know how to act towards me.

I am more than
Tube feedings
Small bites
If I eat that I'll have a blowout
A bloated, gas filled bag
Messy hair
Swollen feet
Poorly done toe nail polish.

I am more than
The awkward smile the stranger gives me which is more he gives the able person
      Because he has to do something because how do you react to a middle aged woman
      Who is riding around in a bright pink wheelchair
      When it is obvious she shouldn't be there.
I scream
But then I feel bad because he is just trying to be nice.

I am more than
Crumbled concrete
Acting like curbcuts
Back door rickety wooden ramps
That take you through the kitchen
Meeting eyes with the kind soul who washes dishes.

I am more than
Things to get done
A checklist
Small sips
But rather
Thirst quenching

I am more than
Dropping relationship
Because it is too hard
And you don't know how
I don't either
But at least I am trying
While I am questioning
Why is it so important to me.

I am more than
For not answering
Writing thank you notes
Because it is just so fuckin' hard.

I am more than
Talking about naps
Doctor appointments
Talking about doctor appointments
Breathing levels
Dry ashy skin
Disfigured feet.

More than.

Tuesday, September 5, 2017

Change and Do I Get to be Mad at G-d??

Rolling around the neighborhood early yesterday afternoon, Mama deer and the smaller of her two babies greeted me as I approached the creek. They were sipping from the water, and as I approached them they immediately lifted their heads and came forward a few steps. Their ears up, tails twitching, they checked me out, and went back to drinking. A few moments later, the second baby crossed the street and joined his family in partaking of the cool water. The fur on Mama's back has started to change - going from a rust to a deeper brown - in order to camouflage with the changing leaves of Autumn.

Though I am not going back to school, change - a lot of it - still happened in my home over the past few days. Adam and I took Sarah back to college to start her second year. Though there was some anxiety, she was met with familiarity and friends. The whole experience was so different than last year, and for that I am thankful.Ean (my baby) has started back to high school as a sophomore, more interested in seeing friends than getting back to learning.  I think he enjoyed his last summer of "freedom" - no job - in spite of the chaos ALS has brought to our lives. He did take on some responsibility - transferring me, feeding me - and I am sure the nature of these responsibilities has changed him.

Gillian, the five pound, premature, late to walk and talk, middle child, has begun her senior year in high school. Unlike her brother, she is in it more for the learning but I believe she has learned how to balance it all. I rely heavily on Gillian - both this summer and always - because I believe she thinks most like me. When I want the "dead" food cleaned out of the fridge or the kitchen table cleared off, I have a tendency to ask Gillian. I know it will be done the way I would do it. I worry that it is too much. And with all the change, Gillian is the person who treats me most the same.

Adam started today working full time school hours. Welcome change for him (us!) as he starts a new career, something he has wanted for a long time. He spent the majority of his summer caring for me, figuring out the logistics of having a disabled wife, while maintaining as much normalcy as possible for him and our family. With his change of job comes change for me - having a five day a week caretaker in my life. Her name is Marie and she is lovely and kind and respectful. And it will be fine, but getting used to someone caring for me in all personal matters will take some time. Change. It's a big one.

Then there is also change in my hands - my fingers are so weak and gnarled that pushing the buttons on my pwc to alter settings has become frustrating and time consuming. Picking up drinking cups, cell phones, and the half egg salad sandwich I like to eat for lunch has become Herculean tasks. And typing is an all day event.

Then there is the change in my thinking. I am a Jewish woman, raised by Jewish parents, raising a Jewish family. I believe in G-d. I pray to G-d. I dare say it?...I am mad at G-d. It has taken me almost a year, but I am pissed off in a quizzical kind of way. A like-minded PALS who I met online who is about six months ahead of me told me I would get to this point. I wonder, "did I do something to make G-d angry?" Was it the unkind words I said to Sharon in second grade? Or kissing too many boys in seventh grade? Or maybe it was when I told my Mom I was going back to college but I really went to my boyfriend's house and she caught me. I feel that G-d MUST have a reason, and making him/her angry seems logical. And, if this is the reason, do I get to be mad? And if there is another reason, do I get to be mad about that? Do I get to be mad at G-d?

A couple of months back my Mom and I were walking/rolling into a bookstore and a title caught our eyes - EVERYTHING HAPPENS FOR A REASON (I might have told you this). We both declared "Bullshit!", and went on our merry way. But now my thinking has changed - maybe the hokey self-help book got it right. Maybe G-d has decided this is my fate. I am not sure.