Thursday, November 16, 2017


He swoops me up
Like a stork with a newborn baby.
We go through our early morning routine
In silence
And mostly darkness
With the stench of bed
And morning breath on me,
The scent of deodorant
And toothpaste
And soap on him.
When he stands me up
I pretend that I can stand on my own
And I whisper "let go"
And he says "ok"
Even though he still holds on.
I try to remember what it feels like
To stand
With my body straight and tall -
Maybe my feet bare
With grass between my toes.
Or two inches taller
In my favorite black patent-leather heels.
He flips me back into bed.
The sun just starting to rise,
He kisses my neck and face
And I breathe him in
To say goodbye for the day.
As I drift off again
I think about how my great aunt
Has the same needs as me.
And the tears come,
Stinging my eyes,
Dripping down into my ears.
I listen to the tv drone on
With the flamboyant news guy
Talking about
Or the other.
My eyes close.
I make the decision not to think -
To rest
And focus on
My family gathering together,
Hugging my daughter,
And the lingering scent of him.

Wednesday, November 15, 2017

purpose and such

I can't sing anymore. Not that I was ever a good singer, but I could carry a tune and keep up with the words on the radio. Now I sound like a sick hyena, and my mouth muscles move way too slow. I still love to listen to music - mostly contemporary country (no judging Dad) and '70s and '80s rock. In my head I am in my childhood bedroom with my friend Lisa and sister/cousins Alice and Marian, with hairbrushes in our hands, singing to my eight-track, Meatloaf's Bat Out of Hell, while standing in front of the dresser mirror. There are posters of Jim Morrison on my ceiling and multiple cans of Aqua-net on my nightstand.

I had a HUGE ostomy bag blow out the other morning. Honestly, I thought about NOT sharing this on my blog for all the world to see because it's really like me writing about shitting myself. But fuck it,  I have gone this far, I might as well go all the way.  So, I woke knowing that my bag was leaking, called out to Adam, and then I heard a pop. The last time that happened was over a year ago and I could still get myself in the shower and change everything myself. Now, not so much. All I can say is thank G-d for Adam, and we got through it with minimal arguments.

I was informed at my most recent ALS clinic appointment that I lost nine pounds. I have to up my intake through my feeding tube and try to ingest high calorie snacks. The goal is not to gain weight , but to maintain my weight. This time when I asked my doctor 'how long do I have to live' she had an answer...sort of. She explained that maintaining my weight correlates to how well my breathing muscles work. We definitely want my breathing muscles to work!

On the lighter fur baby Jackson is ALWAYS in my lap. Yesterday he jumped in my lap and within 20 seconds I hear "hello...hello?"  The voice is coming from my crotch. I begin to laugh, realizing Jackson has paw dialed my phone. Jackson's ears go up every time we hear "hello", and all I can do is laugh. I can't get to the phone because Jackson is sitting on it and hands don't work. We waited until the mysterious person hung up, with giggles and kisses and some whining (Jackson, not me).

To keep you giggling...I went bra shopping with my Mom (and Dad - but he just drove) today. For me. And I tried them on. In the big dressing room with the double mirrors. With my Mom's help. Women (and some men) know that bra shopping is tedious work. But this was actually quite funny, because my Mom and I laughed through the whole experience. My Mom has a way of making the most uncomfortable of situations memorable, comical, and fun.

I have mentioned this before - I don't believe that everything happens for a reason. But I do believe that when bad things happen to you - illness, an accident, the death of a loved one - it can redefine your purpose. Prior to ALS I had a pretty clear cut purpose(s) - mom, wife, teacher. After ALS my purpose has been redefined. Still mom, wife, teacher, but also advocate, and information giver, and writer.

Most of my friends have seen this picture, but it is worth another look. My work/soul family all dressed as Wonder Woman and Superman for Halloween to support me. I have NEVER felt such love. They are absolutely the most wonderful people in the world.

Live to love. Love to live.

Sunday, November 5, 2017

bits and pieces 2

I imagine that when you die, metallic silver confetti ejects from your soul - like the poppers that people snap on New Year's Eve. I can see it float down upon all the people I have touched, and loved, and have loved me. As it floats it shimmers, reflecting light and color from all that is around it. And as it touches others it melts, becoming a part of them and their soul.

I have struggled with death. I'm not particularly keen on the whole afterlife concept. It doesn't really jive with my upbringing or beliefs. But I do believe that how you live your life has implications on your passing. This particular vision I have of death has brought me peace.

This week I go back to the ALS Clinic. I'll meet with my doctor, get my breathing strength measured, discuss issues such as clammy hands, disjointed fingers, and range of motion. I'll ask her, as I usually do, "how long do I have left", and as she always does, won't answer that question. Every person with ALS is different, yada, yada, yada... I wonder if I would do something differently if she answered me. And I wonder if I really want to know...

I'll also meet with the speech therapist to discuss the next step in communication technology. Maybe an eye gaze device, but I'm not sure I am there yet. I did talk to Adam about letting people know that I am choosing not to talk in a large crowd or a loud location anymore. It makes me anxious when I can't be heard. And when I see people I don't see very often the expectation is that I can speak and they will be able to understand me, which is not the case. So, I'll listen, and nod, and shake my head. That I can do.

I have a white bucket that holds the things I need transferred from upstairs to downstairs and back again. It holds pills and lotion, my iPad and cell phone. Marie brings it down in the morning; Adam brings it up in the evening. In the bucket sits Little Nutbrown Hare from Guess How Much I Love You by Sam Bratney. He is always peeking out the top. I keep him there because when I come to the point of silence I can nod in his direction and still get my message across.

Live to Love. Love to Live.

Tuesday, October 31, 2017

I can (for Abby who reminded me)

I can breathe.
I can sleep.
I can burp, hiccup, stick out my tongue, wink, and raise my eyebrows.

I can kiss.

I can raise my left foot.
I can eat...some food.
I can drink...some liquids.
I can appreciate art, music, movies, literature, a good joke.

I can laugh.

I can cry.
I can blow snot bubbles.
I can get scared.
I can daydream about the future, the past, and the present.

I can listen.

I can push buttons with my knuckles.
I can be embarrassed.
I can pet Jackson.
I can laugh at myself - often.

I can love.

I can roll.
I can type.
I can write.
I can help, commiserate, offer advice, have insight.

I can teach.

I can crash.
I can break things.
I can roll over toes.
I can bump into people, walls, furniture, and dogs.

I can be sorry.

I can be introspective.
I can be loud.
I can be opinionated.
I can be too much, not enough, just right, and a burden.

I can.

Wednesday, October 25, 2017


I am sitting naked on the toilet.
Naked except for
My feeding tube with its clamp,
A gauze pad flush against my skin,
My ostomy bag,
And my sandals.
Always my sandals.
For traction.
And transfers.
I'm never really naked
But always exposed.
My arms hang down by my side
In the hopes that gravity will
Be able to straighten out my arms
And elbows
And fingers.
First knuckle.
Second knuckle.
All I can feel
Is blood rushing to the tips
And my arms getting tired
From the weight of having no muscles.
I slowly bring them back
Where they normally rest
On my inner thighs
Evidenced by scratches
From curled fingers and unfiled nails.
I fluctuate between looking at the sky
Through the small bathroom window,
And his face.
The window shows me wispy clouds
With the possibility of much needed rain.
His face shows me
The stress this disease has put on him,
The love he still has for me,
And worry.
His eyes reveal worry.
I go back to looking out the window.
And then my body gets lifted
The sandals providing traction.

Saturday, October 21, 2017

Bits and Pieces

I just got back from the ALS support group. Is it weird to say that I enjoy going to support group? It kind of goes without saying that I would rather not need such a group, but since I do, this one is awesome. We are a cast of interesting characters - I say fondly - each with their own story to share. Some float in and out; some are there every month. I learn from these brave and inspiring people every time I go.

I use my feeding tube to replace two meals a day. I try to eat two small meals a day - soup; a little pasta; sometimes meatloaf. Lately my meals have included Pringles potato chips. I am obsessed with them. They almost melt in your mouth, and they are ever so tasty. Ironically they were my food craving when I was pregnant with Gillian.

I HATE having to ask Gillian to help me in the bathroom.  HATE it! HATE. IT.

I was strolling through the neighborhood the other day, really enjoying the way the sun was shining through the trees now that the leaves are finally starting to change color. The sky was this incredible blue - almost electric. It was a blustery day, and every time the wind blew, the fallen, dried leaves followed me, almost sounding like clapping or applause as they rolled down the street. "Keep going" they chanted. "You are still moving!", they cheered.

I am very close to giving up my phone. Texting is next to impossible.  If you get a text from me and it doesn't make any sense, please know I tried. More often than not I am sending out whatever my voice recognition software hears me say in hopes that the recipient can interpret it. Pants  = period. Lovely = leaving. Spank = thanks.

I had my eyes checked. Bad news - bifocals. Good news - my eye muscles are strong. If and/or when I need to move to eye gaze technology for my communication needs, my eyes can handle it.

I had a dream last night that I was taking care of a cow. The cow had been in a fire and its face was badly burned. It was missing its right ear and the cow was crying, big tears. The cow and I were holding onto each other, finding comfort from the other's compassion. Maybe it's a sign I should skip the meatloaf.

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.