Wednesday, April 4, 2018

Live To Love. Love To Live.

With immense sadness:
LAWRENCEVILLE…Deborah Rose (Nahmias) Dauer (previously of Roosevelt, New Jersey) passed away on Wednesday (April 4) at her residence from complications due to ALS. Deb is survived by her wonderful and adoring husband, Adam, and her three amazing and loving kids, Sarah, Gillian, and Ean; her parents Judy and Norman; her brother, Michael Brett; her three cousin/sisters, Marian (Rob), Alice (Steve), and Deb; Aunt Gail; brother-in-law and sister-in-law, Lew and Kathleen; Uncle Rick and Christina; her best childhood friends, Lisa and Abby; her “beasties” Danielle and Sharon; cousins Bonnie and Shelly; and her nieces and nephews, Erin, Jessica, Sam, Michael, Jason, Jordan, Ben, Tyler, Jake, Matthew, and Daniel.
Deb is a 1985 graduate from Hightstown High School. She received her BA from Washington College in 1989 where she was very active in the Theatre Department, a ZTA sister, and fell in love with the Eastern Shore of Maryland. Through the support of her husband, Deb later went on and earned her MAT from Trenton State College.
Deb dedicated her life to her family, her community, and to the students she taught at Sharon Elementary School in Robbinsville, New Jersey, and previously at Do and Learn Nursery School in Hamilton Square, New Jersey. She found teaching later in life and nothing gave her more joy than connecting with her students through learning. Deb was a teacher to her soul and made sure that her students were learning the academics as well as learning to be kind people. She made connections to her colleagues and the families of her students that lasted a lifetime. She was Sharon School Teacher of the Year in 2011-2012.
Deb learned from her parents the importance of giving back to the community. She volunteered as the President of the Lawrenceville MOMS Club when she was home with her young children; she was the President of the Lawrence Lightning Swim Parent organization; participated and raised money for the Take Steps Walk / Crohn’s and Colitis Foundation of America; participated and raised money for the Walk to Defeat ALS / ALS Association of Greater Philadelphia; supported Planned Parenthood; held numerous food drives for local food pantries; and spent many hours teaching her philosophy of teaching to others, specifically at her religious home, Har Sinai Temple in Pennington. Deb and her family were animal advocates and had adopted many dogs over the years, most recently Sonky and Jackson. She loved her dogs like they were part of the family.
When Deb was diagnosed with ALS she decided to live her life according to the philosophy - Live to Love, Love to Live. She was able to see the beauty in the mundane and appreciate and be grateful for the small things life has to offer. When she could no longer teach in the classroom, Deb spent countless hours writing, both a blog and children’s fiction.
Nothing in her life gave her more pride than her family - her husband, Adam, and her three children, Sarah, Gillian, and Ean. They were the center of her world and she will always be exceptionally proud of them and the kind and generous human beings they have become. Deb believed in practicing random acts of kindness, and nothing would honor her memory more if her friends and family did the same.
Deb and her entire family are beyond grateful for the generosity and thoughtfulness of their village.
Funeral services are Sunday 2:00 pm (April 8) at Congregation Beth Chaim, 329 Village Road, Princeton Junction. Burial will follow at Ewing Cemetery.
The period of mourning will be observed Sunday 7:00 pm at Har Sinai Temple, 2421 Pennington Road (Rt 31), Pennington, Monday & Tuesday 7:00 pm at the Dauer residence in Lawrenceville.
The family respectfully requested memorial contributions to the ALS Association of Greater Philadelphia.
Funeral arrangements by Orland’s Ewing Memorial Chapel,1534 Pennington Road, Ewing Township.

Tuesday, April 3, 2018

Gumball

My words are stuffed into a supermarket gumball machine, each piece of gum imprinted with my words.  In order to get them out, I have to stick a nickel in the slot and turn the rusted old crank half way to the right. Most of the time, one gumball drops down the chute.  Sometimes I get lucky and I get a double.  The words are significant, often making sense to me but just gibberish to others.  I don't know why I keep wasting my nickels when there is little chance of understanding and clarity.  I keep hoping that with each gumball dropping down the chute, something will be different.  I keep getting the same stale gumball.

I retreat to my board where I can create words and language and discussion and conversation and communication.  When it is working, the board is a thing of beauty:  letters mixed with phrases mixed with names, all creating prose and poetry.  Conversation flows and I can be witty and sarcastic.  When the board does not work, it is just another rusted gumball machine.

In order to use my board, my neck flows left to right, up and down. The red laser flows to and fro, creating arcs of light which is a thing of beauty in itself.  I often wonder what will happen when I can not control the last of my muscles, no longer creating arcs of light.

For now, I am able to talk, converse, discuss, communicate, be witty and sarcastic.  I am appreciative for what I have.

Live to love.  Love to live.

Saturday, March 24, 2018

That was Then, This is Now

I can't remember the first time I watched the documentary Gleason. I think it was when I was first diagnosed with ALS. I know it was early on because I remember thinking that the feelings that Steve Gleason was having were somewhat foreign to me. His body did not look like mine, and his emotions were not recognizable to me. If you are not familiar with Gleason, the film tracks his life with ALS as well as his making of a video diary for his unborn son.

I watched Gleason for a second time this past week. It hit me like a ton of bricks. I have caught up to Steve. His gait was my gait. His transfers looked like my transfers. I could relate to everything he was feeling, how his body was betraying him, and the frustration that comes with losing his voice. I was able to see Adam reflected in Steve's wife, and the toll ALS takes on the caregiver. The first time I watched it I cried out of sympathy. The second time I watched it I cried out of empathy.

There are eight muscles in your tongue. Many of the muscles in my tongue are dancing and twitching. It feels like there is a mouse in my mouth trying to escape. That is only one of the strange things my body is doing lately. I am now wearing a small disc-like patch behind my ear to dry up the excess saliva. I also take a liquid drug to dry up the excess saliva. So my mouth goes from Niagara Falls to the Sahara Desert in a matter of minutes. It is great fun.

My friends Lisa and Marcie came to visit for a few days. I have not laughed or cried that hard in a long time. They came a long way. I have to admit I was initially reluctant to have them here. I love them so intensely that I did not want them to come for their last goodbye. I somehow convinced myself that if they did not come I would live forever. But eventually I was able to get a grip on my emotional demon.

A long time ago, a doctor suggested to me that I stop using a straw. In fact, I think I wrote a whole blog post about it. The doctor was wrong. I spent the last year defiantly using straws. I am so glad I did. Now my mouth muscles are weak and I have trouble sucking up liquids from the straw. I have a love/hate relationship with my straw.

I now appreciate, more than ever, the big and little things that my loved ones do for me. Little things like adjusting the blanket on my feet, and wiping my tears. Big things like preparing my plethora of meds, and writing down my words as I dictate my blog using my laser and my letter board.

Live to Love. Love to Live.

Tuesday, March 20, 2018

Breathe

The birds have returned
Blue jays
Grackles
Goldfinches
And the Morning Dove

Breathe
Breathe
Breathe

The Robins are back as well
But they congregate in the frontyard
Where they can peck at the wet spring soil
Gathering insects for their babies
Newly hatched from their powder blue eggs

Breathe
Breathe
Breathe

I see butterflies on my walls
Reminiscent of the blanket from my childhood
I hear a familiar masculine voice
Telling me to wake up
I do
There is no one there

Breathe
Breathe
Breathe

The gurgling in my throat
Requires yet another medication
They all make me feel fuzzy
Like there is cotton in my brain
I try to pull it out
But it just stretches into long cotton candy strands

Breathe
Breathe
Breathe

I am afraid of being alone
Yet sometimes I want my privacy
I fear taking my last breath
Without the comfort of those who love me

Breathe
Breathe
Breathe

The flowers are inside now
Decorating my space
With beauty and vibrant colors
They give a sense of hope
Like good things are to come

Breathe
Breathe
Breathe

Friday, March 16, 2018

The Truth

I can no longer multi-task. Gone are the days when I could put a baby on my hip, cook dinner, and listen to Gillian and Sarah sing all the songs from the Sound of Music. I can no longer put smelly stickers on math tests, while petting dogs, and watching American Idol with the family. Multi-tasking is no longer physically possible. One thing at a time. When I cry, that is all I can do. When Adam lifts me up, I have trouble answering his questions. All of my energy is in my legs. I don't have any to spare.

Though my body can not multi-task, my brain does it all the time. I have contradictory thoughts every minute of every day. I ask myself questions such as "can I still be a positive person and be ready to die?" Is there room in my soul for the dark thoughts and the bright moments?

This past weekend was a typical example. Sarah came home with her partner. I felt such joy at seeing Sarah and meeting Em and having time with everyone in the same house and in the same room. Yet I felt pretty shitty. My breathing was compromised and I could not stop coughing and spitting up saliva. And of course the demon was in the back of my head telling me that this might be the last time I see Sarah. You see how my brain can multi-task.

I am now officially on Hospice. Right after the nurse and the social worker left I was feeling pretty positive about the whole experience. They were both so kind and answered all of my questions. I woke up at 2:30 in the morning (poor Adam, not only does he have a wife with ALS but also premenopausal who can not kick off her own blanket when she is having a hot flash). When my body finally cooled off I was fully awake. I then began to question my decision about hospice. Was this really the best next step? I kept thinking about my original question. Can I be a positive person and be ready to die? The answer is a resounding yes! Being ready to die does not change who I am, just like ALS does not change who I am. I am still me! I take control of what I can and run with it. Hospice is merely a tool that I will use to make what I have left of my life comfortable.

Friday, March 9, 2018

Time

It is always 5:02 in the living room. PM. The Grandfather clock in the living room that we inherited from Adam's parents after they passed away tells me so. The clock was a gift from Adam and his brother Lew to their mom on her 50th birthday. I know it is PM because the arc above the clock face shows me a night sky. I like that no time passes when I am in that room. It is comforting in a way. I know that the clock cannot stop time, but it is nice to pretend. We once had the clock man come and adjust it so the clock would tell accurate time. It required a lot of work on our part to keep the clock running. Ironically we did not have the time for that. The clock eventually just stopped. At 5:02 PM.

Between the times of 6:30 and 8:00 I sit in the den and, while I do my last fueling of the day, I watch the national news, Jeopardy, and Wheel of Fortune. (I am not a senior citizen but sometimes I feel like it.) I often feel like this is a waste of time. But I catch up on what is going on in the world, and Jeopardy keeps my mind sharp. Wheel of Fortune is just an indulgence.

I spend much of my time sleeping. I am so tired all the time. If I understand this correctly, I believe I am so tired because my body does not have the muscle strength to rid itself of the CO2. Some days are better than others and I can stay awake for hours. I always feel good on those days because it is time well spent.

This weekend I will have time with Sarah as she is home for her spring break. Time with all my kids home. The five of us can spend some time together. It is precious time.

Monday, March 5, 2018

I am Still Laughing

I have been mindful of my breathing lately. It is shallow and my body compensates by taking a deep breath every few hours or so.  It almost sounds like a sigh; my lungs saying 'okay, I'll help you out if I must.'

I am still laughing.

My body feels like it is melting. Loose skin, no muscles, leaning to the right. After being in bed all night I become one with the mattress. It holds my shape long after I am lifted out of bed and poured into my wheelchair.  

I am still laughing.

MY wheelchair.  I still have moments of disbelief that this is the path our family is taking.  MY shower chair. MY feeding tube. MY typing tool.

I am still laughing.

How I wish I could feel with the palms of my hands. Spread my fingers out like sea stars and dig into the cool wet sand. Or run my fingers through my daughter's curls. Or simply run warm water over them when they are cold.

I am still laughing.

Adam: It smells like shit in here.
Me: Maybe it is me.
Adam: You don't smell like dog shit.
Me: I take that as a compliment.

I am still laughing.

Recently I was outside doing circles in my driveway, and I noticed that the warm weather brought up the tips of the bulbs - tulips, daffodils, and hyacinth. Adam had planted them while they were in full bloom last spring. I was sure I would not see them bloom again, but here I am enjoying their rebirth.

I am still laughing.

Ean suggested to me that it would be easier to get around in a manual wheelchair now that my hands and arms are too stiff to adequately steer by myself. I resist such change. I am stubborn as a mule. Maybe that is what has kept me alive this long.

I am still laughing.

The natural resting position of my arms is such that my hands lay in my crotch. So lovely.

I am still laughing.

Adam never makes me feel "less than". Never "less than" a woman. Never "less than" his wife. Never "less than" his partner.

I am still laughing.

I still cry when friends leave my home. Sometimes I can hold it in until they walk out the door. It comes from a place of love and a fear that I will not see them again.

I am still laughing.

I laugh at myself. I laugh at the way people misinterpret what I say. I laugh as my mom counts to two as she puts the drops in my ostomy bag. I laugh when my Dad pretends to be annoyed with my dogs and then he carries Jackson around like a baby. I laugh when Adam and I have the most serious conversations when I am on the toilet.

I am still laughing.