Wednesday, May 31, 2017

Adam's list (guest blogger)

I can do a list.....
I get a hug, if I want, every time I transfer my honey from one spot to another. 
I have gotten good with our pivot discs. 
I feel needed. It's a nice feeling. 
Deb has wanted a garden for a few years. She got one.
I put bird feeders in the back yard and we have enjoyed them. I hate squirrels.
We shower together. It's pretty awesome. 
I give Deb her pills twice a day. She is like cute little bird, if she doesn't choke on one.
I've redone our front landscaping and it's been hard work but fun. Almost done.
We take walks around the neighborhood sometimes with and sometimes without the dogs. I think I may need to start going to the bike. Deb is fast.
It's been nice having all the kids home, when they're not fighting.
Why the fuck, do the clasp things on a bra, have to be that small?!
We are lucky to live here surrounded by amazing people.
I'm still President of the pool. I don't know why.
I still enjoy coaching youth baseball. I was told over and over we would repeat last seasons allstars run. Talk is cheap. I got dissed.
I let guilt cause me to miss a new friends party yesterday. Pissed me off. I did however enjoy where I was.

Done. Not going back to edit. Fuck it.

I am

I am a toddler.

Fist grabbing
Awkward grasp
Messy eater

"Help me"
"Hold me"
"Don't let go"

Dress me
Wash me
Put me on the toilet

I am a woman.

Fist determined
Confident smile

Please help me
Hold me
Don't ever let go

Dress up
Wash up
Clean up

I am a warrior!

Fist clenched
Confident smile
Ravenous eater

I will help you
I will hold you
I will never let go

Dress others
Wash away pain
Scour away dirt

Friday, May 26, 2017

So, here's how its going

Went into a restaurant today and every person already seated turned around to look at me. I am not exaggerating.
I think some people are surprised to see me out and about, but I REFUSE to become a recluse.
I am looking a little scary lately.
Doing my hair is very difficult.
It is really hard for me to wash my own hands.
I am going to be fifty in August.
I am losing the use of my mouth muscles - regularly biting the inside of my mouth as I swallow the extra saliva that I am producing for reasons that I don't understand.
I bite my tongue when I sneeze.
I am having more trouble swallowing my food.
I am eating less because I can barely hold a fork or my food.
Soon people will have to start feeding me.
Will I go out if people have to feed me? Probably.
Then people will really stare at me!
I have regrets about mistakes I have made.
However if I didn't make those mistakes I wouldn't be the person I am today.
I am still making mistakes.
Raising kids is really hard. Really. Hard.
I miss walking barefoot.
I miss being able to straighten up the house by myself.
My stomach muscles and some of my joints hurt.
Advil is not helping.
I can't talk when I cry.
I sound drunk when I talk.
I am sleeping with my arms and hands all scrunched up even though I make a conscious effort to go to sleep with them straight.
Both of my pointer fingers are gnarled.
Adam is planting a vegetable garden.
We also have a few bird feeders in our backyard.
We get blue jays, cardinals, a few different kinds of woodpeckers, and many squirrels.
Adam is getting very pissed at the squirrels.
Yesterday I saw a red-winged blackbird. It's my favorite bird.
The days are running together.

Tuesday, May 23, 2017

My Library

Yesterday I went back to my classroom. I went after school hours. I went without telling a lot of school friends I was going. I went with Sarah and my Mom and my Dad. I went to bring home some books.
I own a lot of children's books. Not just a lot, but A LOT! I started collecting them prior to becoming a teacher, which was prior to having my own kids. I just always liked the way they felt in my hands, the artistry of the illustrations, the simple yet complex messages that they conveyed. And so occasionally I would pick one up here or there - new at a bookstore or used at a yard sale. The first two I bought new were The Giving Tree and Caps For Sale. I had memories of reading them with my mother. I remember the feeling of rediscovering them in the bookstore, their covers all shiny, the words familiar like a song you had heard on the radio a hundred times. I was hooked.
I went back to my books yesterday to collect them for my children and for my future grandchildren. I want my children to be able to hold these books and remember. Remember sweet moments of snuggling in bed with hair wet from their bath and freshly washed pajamas. Remember laughing and loving. Remember me. And if they choose to have kids of their own one day, maybe these books will be the tools they use to tell stories of their own, from their childhood .
As we sat in the classroom late yesterday afternoon - in the room that was once mine but now just holds elements of me and that is the way it should be - sorting through books, piles of yes and piles of no, I was struck by how vivid the memories were. Seeing the cover of each book was like looking at a photograph, and I could see an image of reading them to my own kids or reading them to my class. I remembered where in the school year that book fit, if it was part of a lesson, or we read it to appreciate its beauty which I would call a "just because". The memories stirred up such deep emotions. And then Sarah came over with Lily's Purple Plastic Purse, with a smile on her face and a familiarity in her eyes, and I knew I had done something right if she loved this book.
I didn't take all the books. We filled up five bags. Most of the books will be donated to a new teacher or get immersed into the other first grade collections. I will go back another afternoon to sort through the rest of my teacher things - bins and bookcases, reference materials and posters. And it will be emotional and difficult.
As I was wheeling out of the classroom yesterday it was hard to believe that I wouldn't ever be back in that space as a teacher.

Saturday, May 20, 2017

Putting it all out there

In two weeks Adam and I head to Chestertown, Maryland for my colllege reunion. Twenty-eight years. We will drive the open, rural roads of the Eastern Shore that always hold the same breathtaking views. We will pass the landmarks, go over the bridges, breath in the air, feel the breezes until we drive into the town that was my second home for four very important and impressionable years. Chestertown and the campus has changed in the past twenty eight years. Rightly so. Growth of this type is important and necessary. However, when I take this drive, and I go into town, and walk the campus I am more focused on what is the same rather than what is different.
Though it as been twenty-eight years since I walked in my cap and gown, it has only been two years since I have been back to C-town. It was a weekend with glorious weather, good friends, great food and drink. One evening as the sun was setting, I sat in the boathouse with old friends, drinking ice cold white wine, eating crabs and laughing so much that my side hurt. Later on that night we trekked through the open fields adjacent to the home that friends had rented for the weekend. And with the first flash of lights and booms we stopped right there in the land that seemed to go on forever and watched the fireworks. Though I try to hold on to the glory of those moments I also remember that between the oohs and ahs and the bursts of light, I was concerned and confused as to why I was having trouble keeping up with my friends as we slugged through the fields. In true Deb fashion I chose to ignore it or chalk it up to being in my late forties.
In two weeks I will be back, catching up and making memories with many of the same old friends that I saw two years ago. Last I saw them I didn't have to worry about whether I could get my wheelchair into a building or whether a bathroom is accessible. I was able to hold a fork and reaching for a tissue didn't require effort. My voice was clear and my feet weren't swollen. And that familiar fear of losing "me" in the symptoms of the disease begins to rear its ugly head. Will these friends be able to see "me"?
I will go forth. Instead of looking at what is different I will choose to look for the things that are the same. Memories from our college days are the same. Our connections are the same. The love I have for these incredible friends is the same. And if my fear creeps up and I begin to lose my faith in "me", I will do my best to push those fears to the side and live in the moment. I will make new memories, connect maybe in different ways, and definitely continue to love deeply.

Thursday, May 18, 2017

The Dragonfly

It was late Autumn. The time of the year when you are unsure if the winter coat or the hooded sweatshirt will do. I had been teaching first grade at Sharon School for two or three years. This year I had the pleasure and honor of co-teaching part of my day with a Special Education teacher. We would share the responsibility of teaching nineteen kids that year, four who needed some extra help. One of those boys was "John". On top of needing some extra help, John was medically fragile. He also started the school year afraid of bugs. He would fixate on any bug that he would see in the classroom - a single crawling ant, a fly zipping around. They all were a distraction.
By late Autumn, the windows in the classroom were mostly shut and the presence of bugs became less of an issue. John actually began to show an interest in looking at them through the window, especially when they got stuck between the screen and the glass. He seemed to be getting over his fear. That is what was on my mind one morning as I stepped out of my house with my son on our way to school. There, on my welcome mat lay a dragonfly. It had beautiful iridescent purple wings and a body that stretched at least four inches. As my son and I admired it, it lay perfectly still. Ean gave it a little poke with his shoe, and still no movement. We agreed that it had died now that the weather had turned cold. I went inside and got a clear plastic container. If John was able to look through the windows at bugs, maybe he would be ready to see one in a sealed container. Ean and I cautiously picked up the dragonfly - still no movement - dropped it into the container, sealed it up, and went off to school.
That morning started just like all other mornings with my kids. As they came into the classroom my colleague and I greeted each one, and listened to them chatter with us and each other about events that happened either that morning or the night before. They unpacked their backpacks, and right after the Pledge of Allegiance everyone settled on the carpet for Morning Meeting. I casually pulled John aside and told him what I was going to share with the class. He seemed comfortable and curious, however I did tell him that during our share if he wanted to leave the circle he was more than welcome. My colleague and I were both pleasantly surprised at John's reaction to this activity. It was a big step for him to face some of his fears.
After we greeted around the circle, I explained to the kids what my son and I had found that morning. John was happy that he had a heads up to the story and told his friends that the dragonfly was dead. As we passed the sealed container we discussed why the dragonfly might have died, what they eat, and a myriad of other questions and "supposes". I could see that the kids were having a bit of trouble seeing the dragonfly as some condensation built up in the container. One girl suggested we take the lid off so we could see better. I looked at John and he seemed apprehensive. I agreed to that idea but I told the group if they felt scared at any point, they could say "no thank you" to looking at the dragonfly and/or step away. Everyone agreed. John smiled.
I opened the container and handed it to the boy seated three kids to the right of John.
And that is when time stood still.
As the boy peered inside the container I could see the dragonfly wings start to vibrate. I looked at my colleague, we both looked at John, and before I had the chance to lean forward and grab the container, the dragonfly began to fly. It flew out of the container, three kids to its left and landed on John's arm.
John screamed, the boy who was holding the container screamed - actually all the kids screamed. All nineteen kids went running in different directions, and in the midst of the chaos, the dragonfly flew out the classroom door.
It took about ten minutes to get everyone settled again. There were tears, some laughter, and a lot of disbelief. My colleague took John to the nurse's office to calm down and get checked out. We began talking about what happened and the kids became worried about the dragonfly. So we set out into the hallway with our container, the lid, and some new guidelines. We were going to try to catch the dragonfly in order to release it outside. It was scared and screaming at it would scare it more. Plus screaming in the hallway would definitely disturb the other learners in our school. We practiced holding our hands over our mouths to keep the screams in. By the time we got lined up, and silently into the hallway, John had rejoined our group. He eagerly went to the end of the line in order to have limited participation in catching the dragonfly. Luckily our insect friend was sitting on a piece of artwork just outside our door. Very quietly and carefully I was able to coax the dragonfly into the container, and of course I shut the lid - tightly.
After some whispered discussion, we decided to release our dragonfly onto the playground. We went outside and sat in a big circle, similar to what we had done for Morning Meeting only a few minutes earlier. This time I placed the container in the middle of the circle, took off the lid, and joined my kids and my colleague on the grass. We waited. We watched. And then, slowly as if we were regaining its trust, the dragonfly lifted itself up, and flew away.
We were quiet for a moment. I instinctively knew that the math lesson that I had so meticulously planned for that day was just going to have to wait. We trudged back to our classroom and wrote a story about the time a dragonfly got loose in our classroom. John volunteered the first sentence. "One time Mrs. Dauer brought a dead dragonfly to school to share with us."...

Wednesday, May 17, 2017


I am enjoying the Spring. Things look different this Spring than last. Though I was home last Spring as well, most of my "free" time was spent on the toilet, or figuring out when I could eat, in order to then have the time to be sick, and then hopefully be able to go out. By this time last Spring my UC was in full flare, I was wearing my mofo/brace Phoebe, and I still didn't know I had ALS. I am pretty sure my colectomy had already been scheduled.
Fast forward to this Spring. I no longer have a colon, but I have no pain. I still worry about using the toilet but only because I can't get on and off myself, and all toilets are NOT created equal. Phoebe has been replaced by a hot pink power wheelchair who still remains to be unnamed. I am anticipating the scheduling of a feeding tube insertion. And the big one - now I have ALS.
I often think about how each experience I have is beautiful in its own way if only I didn't have ALS. Today is a perfect example. Kim (my home health aide and friend) came over this morning. We prepared one of my family's favorite meals (I supervised)),  she shaved my legs, we talked and laughed, she made me lunch, and I ate while she folded clean towels. What a great morning if only I didn''t have ALS.  Or when I get this gift of free time to write and think and meditate. All of that would never be if I didn't have ALS. And as I reread this paragraph I just wrote I realize that I am not sure if I am angry or thankful for the ALS. What is my perspective? I know that ALS has caused me to love more and harder, never take things for granted, and stop sweating the small stuff. I have met some amazing people because of ALS. So, in some twisted and bizzare way am I happy I am living with ALS? No.  Definitely not. But I guess perspective is not black or white.
Now that the weather is a bit more cooperative, I am often sitting my backyard on the deck. I tilt my wheelchair back to be able to see the very tops of the trees.  The tall, strong limbs touching the blue sky. The breeze just strong enough to make the leaves move and turn so you can see multi shades of green. It is peaceful and majestic. If my wheelchair had been in its regular seated position I would never have seen such beauty.
Last night I had the privilege of attending the Lawrence High School's Spring instrumental concert.  Greeting friends after the show, sitting in my wheelchair in the regularly seated position is awkward and it hurts my neck. I am really only seeing their midsection and it is not conducive to hugging.So I tilted my wheelchair back and changed my perspective. I got to see smiles instead of belly buttons, my neck didn't hurt, and the hugs were greatt!

Sunday, May 14, 2017

A "hokey" non-poem / my voice

I am not sure what I expected.
Maybe that I would be different than the others.
Or I would have more time.
I am not sure I actually thought about it clearly or consciously.
But last night...
this whole losing my voice thing
hit me like a brick.

I still have a voice.
It is weak and strained
but still audible.
It is slurred and high pitched
but still understandable.
But it is leaving me
just like my legs
and my arms
and my stomach muscles.
I can't feel the twitches
as I did in my limbs
as the muscles waste away.
But I can measure the length of time I can talk
before I get tired.
I prepared with
and app downloading
but I guess I didn't really "prepare".
So when I needed my voice last night
it failed me
and I grieved.

Today napping
in my chair
leaning back
facing the sun.
The rain came suddenly.
Big, cold drops on my face
It took me by surprise
as Adam came running
to help me get inside.
Then it stopped.
And we went out front
to try to catch a rainbow
and I wheeled through warm puddles
just like I used to stomp.
It made me feel young
and I laughed watching my boy
take pictures of his crazy mama.
The gray clouds were pushed aside
by clear blue skies.
The steam rising from the earth
brought worms
and the smell of earth and Spring.
It didn't bring my voice back
or strengthen my limbs.
It brought me a bit of happiness
and hope
and helped me remember that
I am still me.

Thursday, May 11, 2017

I'm Rambling On

I can still clean my own ears with a Q-tip. I can barely hold a fork, can no longer print my name, and typing takes me hours longer than it used to - but cleaning the ears I can still do. For some reason, the powers that be have decided that cleaning my ears is what I should be left to do, so damn-it I will do it! I clean my ears every morning. I have the cleanest ears this side of the Mason Dixon line!

I'm not alone in the house very often, but sometimes when I am I pull Jackson up on my lap and we go riding around the circle in my house. Through the living room, into the dining room, through the kitchen and around again. Sometimes I sing along to my Alexa playing country music. Sometimes I talk to Jackson, and he looks back at me with understanding. Sometimes I just ride around quietly thinking about a new blog post I want to write, or where my first graders would be right now, or what I can still do to help around the house (not much). I often laugh at the thought of my kids or Adam walking in at that moment and what they would think of me.

I had a dream last night about falling. I haven't dreamt about falling in a very long time. In my dream we had to call the EMTs to get me up. I wonder why that came to me last night. It is no longer a significant fear.  Adam and I use this pivot disc to turn and transfer me into my reclining chair, or my wheelchair, or the toilet. We fondly refer to it as the "lazy debbie disc". It is a very secure process. My parents have a hard time using it so they got me a Beezee board (I think that is what it is called). It is just another way to transfer mostly immobile people. And then there is the Hoyer lift, which we have standing in our living room, calling out to me "one day you won't be able to move at all". I won't describe it here. Trust me when I say it is obnoxious and ominous.

My voice is so child like. Not just my pitch and the fact that the words come out at the speed of molasses, but also what I am now choosing to say. When I speak like an adult, in longer, more complicated sentences, I get winded. Well, sort of. It's kind of like losing my breath, but more about my mouth/tongue muscles get tired. So I am trying to keep it short - short sentences, one or two word answers. But I really like to talk, so keeping it short is not easy for me. There are also some words that are easier to say than others. For example, it is easier to say "yeah" than "yes". And I am noticing that some people are losing patience with pacing, or how slow I am speaking, so I have had to say "please let me finish". I don't know if I am paranoid or this is real, but as my voice becomes more child like it seems that strangers are speaking to me like I have a mental disability or a delay. But in reality everyone should be spoken to the same way - with respect.

I am getting out a lot. Kim is my home health aide, but also my friend. She comes a few times a week, and even when she is here we try to go for a stroll around the neighborhood. She is very encouraging - encouraging me to keep going out, and to not be afraid. So I have been going out. This week we went to the State of Robbinsville dinner, where our family was the recipient of the Pay It Forward initiative. The dinner was lovely and I wore a dress and Lisa did my make up. I felt like the old me. And because of the dinner a bunch of old friends were in town. So we went out, and reminisced and laughed about the silly things we did when we were young and naive. And this time when David left to go home to Paris, Lisa left to go home to Florida, and Sander left to go home to California I didn't cry. I am pretty sure I will see them again. And if I don't it is okay because I hold them in my heart, and they know that I love them. Damn - now I am crying.

Wednesday, May 10, 2017

Speech from the State of Robbinsville / Pay It Forward dinner

Home. Growing up my home was Roosevelt, a town of two square miles just east of here. Us Rooseveltians say if you drive through and blink you will miss it.

Home. When Adam and I married we settled in Lawrenceville, a house on Princeton Pike where we continue to raise our children, volunteer in our community, and have developed loving and deep friendships.

Home. Ten years ago, early in August, then assistant principal Janet Sinkewicz walked me into room b4 of Sharon School. The walls were bare and unpainted, the carpet desperately needed to be cleaned yet I was ecstatic because I knew I was home.

Home. Teaching hundreds of kids. How to read, how to add and subtract, how to ask questions, the importance of being kind. The pride and love you feel for these kids makes your heart swell and catches your breath.

Home. Sticky first grade hands reaching for yours. High fives in the halls. Waist high hugs in September turn into chest high hugs by June. Wiping tears, tying shoes, kneeling down for deep conversations, belly laughing.

Home. Reassuring parents that their kids will read, learn, write, make friends. Teaching the siblings - sometimes three or four! Feeling like you have become one of the family. Getting invited to birthday parties, communions, bnei mitzvahs, baseball games.

Home. Your co-workers become family - your soul family. Teachers and administrators, administrative assistants and custodians. The pride and love you feel for these people makes your heart swell and catches your breath. Celebrating together. Sometimes mourning together.

Home. You develop a debilitating disease. You get a diagnosis that rocks you and your family to its core. And you wonder how you will make it - through the year, month, week, and even the next day. And the soul family holds you up.

Home. Flowers and loving notes from past students. First grade drawings of me in hot pink wheelchairs. Notes from past parents. Visits from entire families that you have taught.

Home. Your soul family and the community you have become a part of reaches out in immeasurable ways. You get notes, and prayers and love. They let you cry and hold your hand.

Home. Robbinsville. There are fundraisers and donations. There is this reassurance that I am a part of this community and I will be taken care of. I am home.

Thank you to the entire community of Robbinsville. A special shout out to fellow Hightstown high school alum and Robbinsville mayor David Fried; Jodi Stephens, Joy Tozzi (pron Tazzi), Dino Colarocco, and Roger Fort. From Robbinsville schools - Janet Sinkewicz, Nicole Bootier, Kathie Foster, Steve Mayer (may his memory be a blessing), and my beasties.

I would never wish ALS on anyone. However, I hope you all have the experience of feeling the love that I have felt here in Robbinsville. For that I am truly blessed. Thank you.

Tuesday, May 2, 2017

Benjamin Button

I take comfort from knowing the exact age of this tree.

It was late fall. Sarah was barely a year old. We were toddling through our front yard one day and under the crunchy brown leaves we found a maple tree sapling. It was standing straight and as tall as it could under the weight of the propeller seed pods still attached to its stem. We dug it up, careful to get all the roots, and replanted it in the "just right" space in our backyard. We nurtured it and watered it and from then on it became the Sarah tree.

At first we measured the growth of Sarah against that of the tree. Sarah was taller than the tree for a few years, yet both stretching upward and growing strong. But trees grow differently than children. I was focused on the growth of three children by the time I noticed the size of the Sarah tree. It was healthy, with a thick trunk. In the summer, with its full bouquet of bright green leaves, it would provide shade for the kids as they played on the swing set.

Now the Sarah tree is eighteen years old. It doesn't visually stick out as something unique in our backyard. It blends in with the other trees - some of which Adam planted, some of which were provided to us by the wind. I was telling someone about the Sarah tree recently and I said I thought its height was about fifteen feet. Adam clarified and said it was closer to thirty. When I got home I leaned my wheelchair all the way back and tried to see the top of the tree. I couldn't.

The changes in the Sarah tree seemed to happen so quickly. I am trying to take notice of how and when things change. The seasons, the trees, the flowers, and my kids. I take notice of the changes in my body so I can be one step ahead of ALS.

In speaking to a fellow PALS online, they suggested I watch the movie The Curious Incident of Benjamin Button (originally a short story by F. Scott Fitzgerald). They said it gave them a different perspective on growth, change, and what it means to progressively "grow" with ALS. I watched Benjamin age in reverse, and go from an old man to an infant. I watched as the knowledge of this affliction had an impact on the choices he made for himself and others. I was intrigued by his unwillingness to be a burden to those as he grew "younger". There was a scene where the scales were even and Benjamin held the knowledge of a fully grown man but his body was becoming that of a young boy. There was nothing he could do about this reverse growth. This rings true for me. ALS is reversing my body - I struggle with things like feeding myself, dressing, self care - those things that a parent would do for a toddler. My voice has become high pitched and slow. I will only regress more. Yet my mind continues to be that of a full grown woman.

The Sarah tree will continue to grow. My kids will mature and flourish. The seasons will change, the flowers will bloom, and maybe the wind will bring us new growth. I will manage the Benjamin Button within me. Some of it I will notice. Some changes will happen so quickly that it will take me by surprise. Change and growth  - in either direction - will just happen.