Monday, October 16, 2017


There are times when the ALS brings me to these overwhelming dark places of despair where I can only focus on being a burden, and death and dying, and my family being better off. It is a place of sorrow and sadness, bruising desperation. I can only see black and blue, and there never seems to be an end. It is difficult for me to dig myself out of the darkness without uncontrollable tears; heaving sobs; snot dripping down my face; the inability to catch my breath; copious amounts of phlegm building up in my throat; thoughts of what I'll miss, what my children will miss, what my parents are already missing, the future Adam and I will definitely miss.

I don't visit this place often, nor do I let many people come there with me.

I visit.

I leave.

Sometimes the leaving is like the "Jewish goodbye". You have to makes the rounds and kiss everyone goodbye two or three times before you can finally get out. I touch on all the dark and sad places until they are all thoroughly mulled over and explored.

I finally leave.

And I can stay away for a pretty long time.

There are times when ALS brings me to a place of deep gratitude where I can focus on being thankful and appreciate the small moments and really be present for my kids. I allow myself to be vulnerable, which has historically been difficult for me, and this vulnerability has shown me how caring people can be. I can see bright, vibrant colors - almost like looking through my polarized sunglasses - and I don't want this feeling to end. I am able to see past disease and despair, and be happy.

Wednesday, October 11, 2017


I put my head back
To face the warmth
And rolled through
Piles of wet leaves
And those that crunched
From drying out in the sun.

I was encouraged
To venture off
To go fast
"Keep going"
"Don't look back"
And I wondered
How can I not?

The clouds
Looked like rows of mini-marshmallows
On Aunt Gail's
Thanksgiving sweet potato pie,
Some dark and roasted
Others just melted.

I was filled with gratitude
And giving
And joyous reconnections
Feeling like myself
In a place
Where I was my best me.

I wondered
How I will continue
To be me
To voice
To do
And my village told me
Like the safety net
I reach for
Over and over again.

I tried to say
Thank you
For the unconditional love
For giving up their life
So I will not want
And it comes out weak
And insufficient.

I pretended to sleep
As I listened
To kitchen conversation
Catching up on the day
Prepping dinner
What to expect
From the rest of the week
And I smiled
From the comfort
Of knowing it will be alright.

Friday, October 6, 2017

My comforter is my nemesis and other thoughts

My comforter is my nemesis.

I fight with it every night. Struggling to get it up; struggling to pull it down. It weighs heavily on my body as I try to straighten my arms under its hefty size. Sometimes I swear I can hear it taunting me. "No way man! I will forever weigh you down."

I used to be able to kick it off. One leg under, one leg over. The perfect body temperature balance. Now I sweat under it, and shiver without it. My pre-menopausal hormonal system doesn't help.

On especially chilly nights, when even the dogs needed some extra warmth, I would lift it up as Jackson would nuzzle to get under, curling up next to my already warm body.

Now it is just too damn heavy.

I miss intimacy.

I am not talking about sex, but the intimacy of touch.

When Adam would rest his hand on my neck as I drove. Curling up on my side, head on Adam's chest as we watched tv before bed.

Jumping in and snuggling up with the kids in their beds or the big den chair.  The way they used to all climb into bed with me.

Crawling on the floor to cuddle with the dogs. Sitting side by side, four smushed in on a loveseat meant for two.

I am being followed by the number eleven (11).

I see it everywhere. Whenever I look at a clock, or a sign, magazines, newspapers - it keeps showing up at random times. Consistently. Actually, all the time. Enough for this semi-nonbeliever in the supernatural to look up what it means. According to Wikipedia and other random and questionably reliable sources, seeing the same number over and over again can mean that angels are around you.


Do I believe in angels? And is this something to be frightened of? Don't angels surround you as you are dying? Or are they a reassuring presence?

Who are my angels? Are they people I knew - like my Grandpa Sol, Aunt Liz, or Aunt Sylvia? Or people I never knew? And what is the significance of eleven?

My angels are the people who pray for us - whatever their religion might be. The friends that bring us dinner, cut my nails, take me to the bathroom, send cards and messages, who have donated to our fundraisers, and have just stuck with us.

These are my angels.

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.