Sunday, September 10, 2017

more than

I am more than
Sweetie
Dear
Darlin'
Honey
Milk-in-a-kid-cup
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.
ACT NORMAL
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
Big
Thirst quenching
Gulps.

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
Guilt-ridden
For not answering
Texts
Emails
Letters
Writing thank you notes
Because it is just so fuckin' hard.

I am more than
Naps
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. Lately...do 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.

Friday, August 25, 2017

Spunk

I park myself under the pine cone tree, just in front of the hydrangea bushes that are not really ours, their flowers mostly pale compared to the bright blues, purples, and pinks they were only a month ago. I manipulate my joystick to stretch out my body and my achy joints. First putting the whole chair back, and then straightening the legs and back until I am laying flat. My flexed feet push against the foot pedals as I look up to the top of the enormous tree. Immature, tightly wrapped, green pine cones drip from the boughs. The one right above me, if it fell, would hit me straight in the heart. I imagine the headline: New Jersey teacher and blog writer killed by piercing pine cone, NOT ALS.

I turned 50 yesterday. 50. I am not sure when I first got diagnosed eleven months ago that I thought I would reach 50. I can't really remember what I felt when I was first diagnosed. The feelings are jumbled together.

My grandmother died yesterday. She was 101 years old. A little over double my 50 years. I imagined that she would die on my birthday. Adam and I had discussed it. My Dad told me she died at 11:07 am. At 11:07 am the home health aide was painting my toenails a light pink. I thought about how Grandma would approve of this color. I turned on my pwc to check the time. I remember it said 11:07.

My grandmother was a complicated person. One day I will blog about her life and the nature of her relationships. Now it is too soon. I know that she loved me with all her heart; she was very proud of the family Adam and I created (she told me as often as she could); she was full of spunk; she lived a full life and was ready to go; and I loved her.

Today my birthday card came...from my grandmother. I knew it would. Adam opened the card for me. Adam had trouble deciphering her handwriting. It was always a bit difficult to understand due to the fact that she wrote with a Hungarian accent, the same way she spoke. Over the past few years it became more difficult but I always was able to decipher it - maybe because I understood the way she thought. It starts "My darling" the way her letters always start. I cried.

It took me a while to compose myself, but I did finish reading the letter. What a gift.

Live to Love. Love to Live. With spunk.

Wednesday, August 23, 2017

Helen Mirren

In my head, right before I speak, I imagine that my voice will come out sounding like Helen Mirren. Cool, sophisticated, and yes, British. It is part of this fantasy I build for myself in which I don't have ALS, we are independently wealthy, and I volunteer my time teaching reading to underprivileged first graders while fostering dogs at home with Adam. Sometimes I imagine my voice is that of Glenn Close or Meryl Streep. Same fantasy, different voice.

And then I talk and it comes out this nasal, slurred, quiet jumble of sounds. Sometimes I can laugh about it. Like just two minutes ago when I asked Gillian if she knew if Glenn Close had two "n"s or one.  The look on her face was that of lack of understanding and we giggled as I tried to repeat it. It didn't help that she didn't remember who Glenn Close was (what did I do wrong?!), but it was comical all the same.

My voice was always nasal and high-pitched, and I was never a big fan. Now, of course, I miss it. So when my video came up in my Facebook memories of me doing the ice bucket challenge a few years back, I was happy. There is my voice, in all its nasal high-pitched glory. And I am standing. I am thrilled to have that video.

I think there should be some ALS rule which doesn't allow you to lose your hands and voice at the same time. Some PALS don't, but I am.

Sometimes when I talk people pretend to understand me. I know they are trying to be kind, but I can tell right away that they didn't get the message, usually by a lack of response. My friend Stacey, who is a speech therapist and has been sending me speech tips, recommended that people repeat the part they understood so I can just fill in the blanks. Very helpful.

It is most difficult for me to talk to people where there is a lot of background noise, like in a bar or large restaurant. My voice does not project. Danielle and I went out to The Cheesecake Factory last weekend, and though the food was delicious, the restaurant was not suitable for me to have conversation. We did alright but next time a quiet, more intimate location. Of course for my birthday tomorrow I asked people to stop by Amalfi's (a bar) to have a drink with me. So don't mind me if I don't talk much. I will nod, and of course hug and kiss. Hugging and kissing is more fun anyway.

Monday, August 21, 2017

Unopposable thumb

Unopposable
My right thumb has become

Unacceptable

Unwavering and Unconditional
Love

Understanding 

Unhappy and Understandable
Moods

Unattractive

Undesirable and Unkempt
Body

Unable

Unjaded and Unaffected
Trying

Unbalanced 
and 
Unbearable 
and 
Unbelievable 
and 
Unbenign

Unchangeable 
and
Uncivil 
and
Uncommon 
and
Uncompleted

Unopposable 
My right thumb has become

Friday, August 18, 2017

A happy list

I have been focused on "woe is me". The feeding tube - Regina - has got me down. ""45"'s reaction to neo-Nazis and white supremists rallying in Charlottesville has been far less than presidential. I am sad and frustrated and angry about the larger issues facing our world. When I feel this way I have to remind myself to focus on the things that bring me joy. So, in response to the evil, morally deficient things going on in the world, I bring you my HAPPINESS LIST (in no particular order):

1. Croaking frogs
2. Eating Taco Bell with Sarah
3. Laughing with Ean
4. Snakes - little ones
5. Black cherry jello with fresh blueberries and whipped cream
6. The smell outside after it rains
7. The way the creek runs after a heavy rain
8. Podcasts
9. Babies
10. Seeing pictures of kids going off to college
11. Jimmy Fallon
12. People who check in on me
13. Laughing with Adam about the silly things people say - someone told me to "use the new bathroom in good health" - it cracked us up!
14. OUR NEW BEAUTIFUL ACCESSIBLE BATHROOM
15. Seeing the people I love happy
16. A straightened up living room
17. The feeling you get when you go through "stuff" that has been sitting around for a long time and you give most of it away
18. My Wonder Woman blanket
19. The sound my pwc makes as it rolls through crunchy leaves
20. Adam washing my face
21. Cold milk
22. Forgiveness
23. My birthday
24. The giant decorative grass in our front landscaping
25. Stretching
26. Soft kisses
27. Our new cup that keeps drinks cold for hours
28. Hibiscus flowers

What would be on your list?

Monday, August 14, 2017

change


Looking out my bedroom window I can see the leaves changing colors at the very top of the cherry trees. Turning bright orange and yellow from summer green. It always surprises me when this change begins to happen, especially in mid-August, as it seems to soon. I know it is coming, but when the weather is still warm, and the air is still sticky with humidity, one does not expect to witness such obvious signs of Fall.

I anticipate that this Fall, and the changes that September brings, will be more trying than most. I used to look forward to September. - a new class list, setting up my classroom, purchasing supplies, reconnecting with colleagues. None of that will happen this year, and I will mourn that loss when the time comes. I am trying to find a way to help my teacher friends set up their rooms so I am still a part of the process - this positive change - but my limited mobility is restrictive.

Gillian reminded me that September is my one year anniversary with ALS.  I told her that I think about it all the time. She said, at least this year didn''t bring many casualties (I believe she was referring to traumatic falls). We laughed as I said just the use of my hands, legs, and voice. It is good to laugh about it.

I wish I had appreciated my twenty-something year old body when I was twenty-something. It was not perfect but it was strong and it was mine. My belly was never flat, but I remember being able to lie on my back and rub my hand over my naked, smooth, scarless stomach. I remember when I was pregnant with both girls being able to do the same. Feeling my skin stretch and swell, the baby kicking underneath. By the time I was pregnant with Ean, my stomach had c-section scars, but I still it was mine, and those scars were a reminder of the strength inside me. This was all welcome change.

Now I can no longer run my hands over my stomach. And if I could they would run over many scars and get caught on tubing and bags. I am aware that these items can be indications of my strength but I also know that they don't feel like a part of me. They puff up and stick out from underneath my clothes, sometimes taunting me - "you are sick".

I know that there are more changes on the horizon. Some will get me down, like my feeding tube does. Other changes will be exciting, like Sarah starting her second year at Mount Holyoke and Gillian applying to college. I will continue to write through it.