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.

Saturday, August 5, 2017

Sound

I imagine the sound of my muscles twitching
To be like that of a broken pull start mower.
It - pull
Just - pull
Won't - pull
Start.

And the mower
Is like the sputtering sound
Of my body trying desperately to cough
Finally kicking in
A loud, hacking boom.

I imagine the sound
That my wheelchair makes,
The soft click only audible to the dogs,
Will be the sound as I leave the Earth.
Only audible to those that matter
Silent to those that don't.

And the click will be the sound
Of Heaven's gate closing behind me?
Leaving the snakes with me
Or will they slither away?