Friday, December 15, 2017


I want to converse not just communicate. I want to ask questions and share stories and give opinions. I want the ebb and flow of conversation. I want the words to come freely from my lips. I want to make snarky comments and witty, timely jokes. The drunken sailor has been replaced with occasionally opening my mouth and silence - no sound coming out. I can feel the vibration in my throat where the words should be emerging from. But nothing. And it scares me.

I want to take big satisfying bites of cheeseburgers and chocolate cake. Overstuff my mouth with rolled up spaghetti. I want to gulp a glass of ice water down to the very last drop. Instead I take small, deliberate bites of specific foods. I have gotten into the habit of eating a Dove chocolate a couple of times a day. Before ALS I would have popped the whole thing in my mouth and rushed through the experience. Now, because I am forced to, that small piece of milk chocolate is eaten in at least three bites; each portion savored and slowly melting in my mouth. A small blessing indeed.

I have been cautiously approaching some of the things on my bucket list. I hesitate to even call it that because I think that phrase signifies "the end", and I am not ready for that.  And the things on my list are not big or bold or full of exhilaration. They are softer and quiet and more personal. Yet as they reveal themselves I am no longer putting them off until next time.

I wish that everyone could feel loved and cared for in the way I do. The love and care I receive makes me feel peaceful and light. It feels like a hot chocolate by the fire after a full day of playing in the snow; your cheeks and thighs and hands defrosting and tingling as they go from cold to room temperature to warm. I no longer hesitate to express my feelings, to say "I love you" as I feel it, to express gratitude, in order that others hopefully can feel that light and warmth.

My days are filled with quiet moments, dogs barking, sleep, laughing with those I love, visiting with friends, reading on my iPad, music, watching television, social media, and writing. Though Marie is willing, I don't go strolling as much as I used to. It's cold and my driving hand stiffens up more than it used to.   I go to swim meets and school concerts, restaurants and to the movies. I can be seen often at Panera and Target and Wegmans. Sometimes people are surprised to see me out. I am not sure why. I refuse to be a recluse. An acquaintance who works with chronically ill people recently told me she likes to visit with me because I am still living my life to the best of my ability. I'll take that as a compliment.

Live to Love. Love to Live.

Sunday, December 10, 2017


Before I was diagnosed with ALS - when we were trying to figure out what was happening to my body - I would get these intense and excruciating leg cramps in my calves. The kind that jolt you out of a deep sleep. I would even feel their effects the next day - almost like my legs were sore from working out. I dreaded falling asleep because I knew the pain would come. Now that my calf muscles are depleted, I don't get those Charlie-horses anymore. I occasionally get cramps in other parts of my body - my side, my bicep, my left thigh - places where the ALS hasn't completely robbed me of my muscles. Now I relish in the uncomfortableness of it all. In an odd way it makes me feel alive. Perspective...

When I look at my very thin calves, or my spindly forearms, or the loose skin around my knuckles, I am amazed at how much I don't recognize myself. I feel like me on the inside, why don't I look like me or for that matter, sound like me?  I feel ugly, not really on an attractiveness scale, but in a way that my body does not match my brain. It is doing things like drooling, coughing, spitting, getting scrawny, and I don't have any control over it.  The ugliness comes from my brain screaming NO and my body doing otherwise. Perspective...

I have a love/hate relationship with my Facebook memories.  On one hand I love seeing old pictures of my kids and their friends - concerts, swim meets, birthday parties, dances. I love reading my impressions of holiday gatherings and school days. What stings are the memories that come up where I regaled my community with what I accomplished in a day. They go something like this...'I made brisket, wrote six days of lesson plans, cleaned all the bathrooms, read War and Peace, and built a bookshelf.' (Not really, but equally self-indulgent) Now my heavy accomplishment days would read 'Wiped my own nose AND threw the tissues in the garbage can myself.' Perspective...

I watched a Saturday Night Live repeat from 2005 last night. Jack Black was the host, Tina Fey and Amy Poehler were on the desk for Weekend Update (best pairing), and George W. was the President.  The news items discussed at the desk by Tina and Amy in 2005 seemed like small potatoes compared to what the SNL cast is talking about in 2017. I wasn't a fan of George W. but I would take his administration over our current administration in a heartbeat. Perspective...

Saturday, December 2, 2017

The lightness of laughter

My ostomy "Consuela" makes really funny fart-like sounds in the morning as I am doing my first tube feeding of the day. I guess the tube feeding is pushing all the gas out of my stomach. It makes such a racket! It makes me laugh. Farts are funny! There is a reason I taught first grade.

When I was sitting on the toilet the other day, Jackson tried to jump in my lap. Really! I laughed so hard I nearly fell off.

Often times, when Sonky sleeps, she sticks her tongue out just a bit. It is so damn cute. Then when she wakes up she doesn't realize her tongue is out and she walks around like that for a little while. It gives me the giggles and makes my heart swell from the cuteness and the love I have for her.

It is difficult for everyone to understand me. I try to speak clearly, but it comes out...well...not like I planned. Conversations go a variety of ways:

  1. The person I am speaking to pretends to understand me, and then doesn't respond when a response is warranted. Awkward silence.
  2. The person I am speaking to pretends to understand me, and then responds by bringing up a new topic to avoid the elephant in the room which is 'I have no fuckin idea what you just said'.
  3. The person I am speaking to attempts to understand me, and then responds with the appropriate response to what they think I said. For example,  I might say "your daughter is a nice girl." They might respond with "I like pineapple too."  (That really happened - my friend and I laughed for hours.)
  4. The person I am speaking with repeats back what they think I said (best way to approach a conversation with me). It is so off that we laugh so hard it is difficult for me to repeat myself. I might say "did you watch the game last night?" They repeat what they think I said, "did you go down to the barn last night?" (That also really happened.)
  5. The conversations that make me laugh the most usually happen between me and Adam or me and the kids. They start with me saying something and my family responding with 'I have NO idea what you just said.' This always makes me giggle because it is so real, and it is just the way we talk to each other. It is normal.
I curse a lot. I always did, so that is nothing new. But now when I curse it comes out slurred, slow - almost methodical, and childlike. This inevitably makes Adam laugh, which makes me laugh. On top of that, Adam and I have gotten into the habit of calling each other by our new pet names - Asshat and Fuckface. I know it seems weird - offensive really - but it is a great way to alleviate the tension and just laugh.

There is an expression we use often, 'if I didn't laugh I would cry.' And I do cry. But laughing does make my heart lighter. I hope you can find something to laugh about today.

 Live to Love. Love to Live.

Saturday, November 25, 2017

On a day I was angry

On the day I was angry I had a dream that my hands got pulled off and they regenerated like the tails of those little lizards found all over Florida. They worked again and did constructive jobs like make vegetarian split pea soup, and sew missing buttons on work shirts. Instead the reality is that my hands are now good-for-nothing, merely a pile of skin, bone, and wasted away muscle. It takes hours - HOURS - just to type this blog. I hate them.

On the day I was angry, I made a list of all the reasons I am angry at my body:
  • My hands smell and are both clammy and dry at the same time
  • My body smells like sour milk
  • I can't move anything 
  • My voice is almost gone
  • I drool. Yes, I drool.
  • It feels like there is an ash at the back of my throat all the time
  • I cannot cough up said ash because it is really difficult to cough
  • When I gag on my own saliva or something else my throat spasms and tricks me into thinking I can't breath but I can but it is still scary
  • ...and I could go on, but not going to
On the day I was angry, every time I saw a tv commercial for a cancer drug, or one for crohns/uc, I would get jealous or just generally pissed off. I would think I am glad that they found that drug or worked on that drug, but what about me? What about ALS? I was jealous of a cancer patient. What kind of horrible person am I? 

On the day I was angry I didn't want to explain to one more person how to transfer me; or live by a schedule of tube feedings, pill taking, bathroom trips, and ostomy bag emptying.

On the day I was angry I was finding it very difficult to see the positive, and at night as I was laying in bed I would pray to find strength and not give up.

On the day I was angry, my anger got interrupted. I received a picture in the mail, and every time I see those clown noses I laugh. My anger was interrupted by joy.

My anger was interrupted by kindness. I received a supportive email from a support group friend who noticed I wasn't my usual self at our last meeting.

My anger was interrupted by family. We had an extra large Thanksgiving with delicious food, lots of hugs and laughter, and time together.

My anger got interrupted by hope and deep gratitude. Ean's friend Devon came over with a donation for our family; money he collected by running the Philly half-marathon in our honor. It included a note he wrote that gives me goosebumps every time I read it.

My anger got interrupted by longing. Longing to hear about Sarah's year so far; longing to see swim meets, baseball games, concerts, and graduations.

My anger got interrupted by living. I am still angry. But I am still living.

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.