Monday, October 16, 2017

real

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.

Wednesday, October 11, 2017

Yesterday...

Yesterday
I put my head back
To face the warmth
And rolled through
Piles of wet leaves
And those that crunched
From drying out in the sun.

Yesterday
I was encouraged
To venture off
To go fast
"Keep going"
"Don't look back"
And I wondered
How can I not?

Yesterday
The clouds
Looked like rows of mini-marshmallows
On Aunt Gail's
Thanksgiving sweet potato pie,
Some dark and roasted
Others just melted.

Yesterday
I was filled with gratitude
And giving
And joyous reconnections
Feeling like myself
In a place
Where I was my best me.

Yesterday
I wondered
How I will continue
To be me
To voice
To do
And my village told me
Like the safety net
I reach for
Over and over again.

Yesterday
I tried to say
Thank you
For the unconditional love
For giving up their life
So I will not want
And it comes out weak
And insufficient.

Yesterday
I pretended to sleep
As I listened
To kitchen conversation
Catching up on the day
Prepping dinner
What to expect
From the rest of the week
And I smiled
From the comfort
Of knowing it will be alright.

Friday, October 6, 2017

My comforter is my nemesis and other thoughts

My comforter is my nemesis.

I fight with it every night. Struggling to get it up; struggling to pull it down. It weighs heavily on my body as I try to straighten my arms under its hefty size. Sometimes I swear I can hear it taunting me. "No way man! I will forever weigh you down."

I used to be able to kick it off. One leg under, one leg over. The perfect body temperature balance. Now I sweat under it, and shiver without it. My pre-menopausal hormonal system doesn't help.

On especially chilly nights, when even the dogs needed some extra warmth, I would lift it up as Jackson would nuzzle to get under, curling up next to my already warm body.

Now it is just too damn heavy.


I miss intimacy.

I am not talking about sex, but the intimacy of touch.

When Adam would rest his hand on my neck as I drove. Curling up on my side, head on Adam's chest as we watched tv before bed.

Jumping in and snuggling up with the kids in their beds or the big den chair.  The way they used to all climb into bed with me.

Crawling on the floor to cuddle with the dogs. Sitting side by side, four smushed in on a loveseat meant for two.


I am being followed by the number eleven (11).

I see it everywhere. Whenever I look at a clock, or a sign, magazines, newspapers - it keeps showing up at random times. Consistently. Actually, all the time. Enough for this semi-nonbeliever in the supernatural to look up what it means. According to Wikipedia and other random and questionably reliable sources, seeing the same number over and over again can mean that angels are around you.

Angels.

Do I believe in angels? And is this something to be frightened of? Don't angels surround you as you are dying? Or are they a reassuring presence?

Who are my angels? Are they people I knew - like my Grandpa Sol, Aunt Liz, or Aunt Sylvia? Or people I never knew? And what is the significance of eleven?

My angels are the people who pray for us - whatever their religion might be. The friends that bring us dinner, cut my nails, take me to the bathroom, send cards and messages, who have donated to our fundraisers, and have just stuck with us.

These are my angels.

Friday, September 29, 2017

Thanks Jay

September 29, 2016 was one of my worst days ever. It is up there with September 11, 2001 (obvious), and December 25, 1996 (the day I lost my first child due to a miscarriage). It is the day I was diagnosed with ALS.

On that day I thought my life was over. Immediately. Within a week's time I had letters written to my kids, the outline of my own obituary, and a list to Adam of who gets what. I was mostly putting on a brave face but I wasn't necessarily feeling it inside. And then I began to realize that I was living, not dying.

But in recent weeks I began to dread the diagnosis-versary of September 29. It was looming large,, bringing up all those feelings of disease, death, and dying. Until I read this:

http://writeonfighton.org/2017/09/08/celebrated-worst-day/

Written by fellow blog writer, colleague, and friend, Jay gave me the gift of changing my perspective about "my worst day ever".  He made me realize that I am still here, and even though I am different in so many ways, I am kicking ALS's ass! I can face ALS, stick out my tongue, say FUCK YOU, and get on with living.

Don't be fooled. I still spent a large portion of this week overthinking, crying, crying, and crying. But when I woke up this morning and the cool Autumn air was blowing through my windows, and the sky and clouds were crisp with color, the dread of this day left my soul.

Today I will follow Jay's example, bake a cake, and celebrate that I am still here. I plan to keep up this tradition for many years to come. Thanks Jay.





Friday, September 22, 2017

Folded In

My body is folded in like a Chinese fortune cookie or a polyester napkin found at fine dining establishments.  I am on my back ready for bed. The comforter is pulled up to my chin, but my feet are peeking out of the bottom. They have become arcs, no distinguishing bones, smooth and shiny skin, pressing in, big toe touching big toe.

I am warm. I struggle to release my folded arms from the weight of the blanket. Adam sees me struggle and instinctively knows what I need. He brings the comforter down to my waist. My folded arms are exposed. Knuckles bent, I can see the tan line that was created between the part of my fingers that are seen by the sun and the part that typically lies on my abdomen. Arms now crossed over my chest as if I am in a casket. I wonder if the funeral home crosses your arms if the casket is closed... I wonder if Jews cross their arms...

I am watching TV but I am not really watching. It is merely background noise to my thinking. Then THE commercial catches my eye - the one that is indicative of much of what is wrong in this world. It is a luxury car commercial. The "professionals" in the commercial are bumping their heads, tripping up the stairs, until one man drops all of his papers as he is getting into his non-luxury car. The man driving the highlighted car has an emergency brake system that automatically stops the vehicle. Camera pans to the driver's face. He has a look of annoyance and disgust. Almost like "what the f*&k"! Then the driver zooms away, running over the man's papers. Really?! I would be more likely to even consider purchasing this car if the driver got out and helped the poor soul pick up his papers.

I go back to thinking about my day. It wasn't bad or good. Just regular. I had a regular day. Marie, my caregiver is very nice to me and we have fallen into a routine. She likes to walk and I like to be outside, so we are a good match. Marie has encouraged me to explore different walking routes, so we are seeing a lot of people out and about. We mostly walk silent. Sometimes Marie hums or sings softly. She has a pleasant voice. We went to CVS last week and as I was introducing my "friend" Marie to my friend Marilyn, another woman walked by and smirked. I keep thinking about that smirk. Was it because she thought Marie can't be my friend because she dresses in scrubs and takes care of me? Or because what I said struck her as "cute"? I want to go back in time and ask her.  But the reality is she wouldn't be able to understand me.

I think about the ALS walk. It was a memorable day. I giggle a little about how Kay and I both cried as we hugged each other goodbye. It's not like we won't see each other - we live around the corner! I guess the emotions of the day caught up with us. Most of the walk teams were in Memory of teams. That was a slap in the face - a reality check. I am going to die from ALS.

I go to my nightly routine of moving all the muscles I still can. My eyes; my tongue; my lips; my arms; my thighs. There are some others. The movement becomes less over time. I notice it. I am not sure anyone else would. I wish for dreams in which I can move all my muscles. Like the dream I had last week where I was teaching and running with my students and a bunch of them turned into black jellybeans.

Most of my recent dreams revolve around school or teaching. I am walking in all of them, but I am always experiencing some sort of problem, like the black jellybeans, or I have 100 students in my class and not enough desks. In one dream all my co-workers kept coming into my classroom and asking me phonics questions and I did not know the answers. I don't think about school during the day, so I guess it comes to me in my dreams.

There is a boy in my neighborhood who can often be found at the creek. He carries a bright yellow fishing net. He told me he likes to catch minnows. He stands on the road above the creek, I assume because his parents told him he is not allowed to go near the water. His child-size net does not reach the water. The first time I saw him he had attached his net to a large stick. It still didn't reach. Every time I have seen him since he has come up with another way to try to catch the minnows. He refuses to give up.

I am folded in but I refuse to give up.

Sunday, September 10, 2017

more than

I am more than
Sweetie
Dear
Darlin'
Honey
Milk-in-a-kid-cup
Make eye contact with my husband because you don't know how to act towards me.

I am more than
Tube feedings
Small bites
If I eat that I'll have a blowout
A bloated, gas filled bag
Messy hair
Swollen feet
Poorly done toe nail polish.

I am more than
The awkward smile the stranger gives me which is more he gives the able person
      Because he has to do something because how do you react to a middle aged woman
      Who is riding around in a bright pink wheelchair
      When it is obvious she shouldn't be there.
ACT NORMAL
I scream
But then I feel bad because he is just trying to be nice.

I am more than
Crumbled concrete
Acting like curbcuts
Back door rickety wooden ramps
That take you through the kitchen
Meeting eyes with the kind soul who washes dishes.

I am more than
Things to get done
A checklist
Small sips
But rather
Big
Thirst quenching
Gulps.

I am more than
Dropping relationship
Because it is too hard
And you don't know how
I don't either
But at least I am trying
While I am questioning
Why is it so important to me.

I am more than
Guilt-ridden
For not answering
Texts
Emails
Letters
Writing thank you notes
Because it is just so fuckin' hard.

I am more than
Naps
Talking about naps
Doctor appointments
Talking about doctor appointments
Breathing levels
Dry ashy skin
Disfigured feet.

More than.

Tuesday, September 5, 2017

Change and Do I Get to be Mad at G-d??

Rolling around the neighborhood early yesterday afternoon, Mama deer and the smaller of her two babies greeted me as I approached the creek. They were sipping from the water, and as I approached them they immediately lifted their heads and came forward a few steps. Their ears up, tails twitching, they checked me out, and went back to drinking. A few moments later, the second baby crossed the street and joined his family in partaking of the cool water. The fur on Mama's back has started to change - going from a rust to a deeper brown - in order to camouflage with the changing leaves of Autumn.

Though I am not going back to school, change - a lot of it - still happened in my home over the past few days. Adam and I took Sarah back to college to start her second year. Though there was some anxiety, she was met with familiarity and friends. The whole experience was so different than last year, and for that I am thankful.Ean (my baby) has started back to high school as a sophomore, more interested in seeing friends than getting back to learning.  I think he enjoyed his last summer of "freedom" - no job - in spite of the chaos ALS has brought to our lives. He did take on some responsibility - transferring me, feeding me - and I am sure the nature of these responsibilities has changed him.

Gillian, the five pound, premature, late to walk and talk, middle child, has begun her senior year in high school. Unlike her brother, she is in it more for the learning but I believe she has learned how to balance it all. I rely heavily on Gillian - both this summer and always - because I believe she thinks most like me. When I want the "dead" food cleaned out of the fridge or the kitchen table cleared off, I have a tendency to ask Gillian. I know it will be done the way I would do it. I worry that it is too much. And with all the change, Gillian is the person who treats me most the same.

Adam started today working full time school hours. Welcome change for him (us!) as he starts a new career, something he has wanted for a long time. He spent the majority of his summer caring for me, figuring out the logistics of having a disabled wife, while maintaining as much normalcy as possible for him and our family. With his change of job comes change for me - having a five day a week caretaker in my life. Her name is Marie and she is lovely and kind and respectful. And it will be fine, but getting used to someone caring for me in all personal matters will take some time. Change. It's a big one.

Then there is also change in my hands - my fingers are so weak and gnarled that pushing the buttons on my pwc to alter settings has become frustrating and time consuming. Picking up drinking cups, cell phones, and the half egg salad sandwich I like to eat for lunch has become Herculean tasks. And typing is an all day event.

Then there is the change in my thinking. I am a Jewish woman, raised by Jewish parents, raising a Jewish family. I believe in G-d. I pray to G-d. Lately...do I dare say it?...I am mad at G-d. It has taken me almost a year, but I am pissed off in a quizzical kind of way. A like-minded PALS who I met online who is about six months ahead of me told me I would get to this point. I wonder, "did I do something to make G-d angry?" Was it the unkind words I said to Sharon in second grade? Or kissing too many boys in seventh grade? Or maybe it was when I told my Mom I was going back to college but I really went to my boyfriend's house and she caught me. I feel that G-d MUST have a reason, and making him/her angry seems logical. And, if this is the reason, do I get to be mad? And if there is another reason, do I get to be mad about that? Do I get to be mad at G-d?

A couple of months back my Mom and I were walking/rolling into a bookstore and a title caught our eyes - EVERYTHING HAPPENS FOR A REASON (I might have told you this). We both declared "Bullshit!", and went on our merry way. But now my thinking has changed - maybe the hokey self-help book got it right. Maybe G-d has decided this is my fate. I am not sure.

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?


Monday, July 31, 2017

Dear Tucker's Dad

Dear Tucker's Dad,
I was feeling somewhat vulnerable and invisible, anticipating yet another change to my everchanging body. Rolling around the neighborhood, going fast, was to clear my head. I saw you and your son from a distance. He with his brightly colored bike helmet and shiny new scooter. You sitting attentively on the curb, baseball hat slightly askew. As I got closer I could hear words of encouragement as your son was trying out his scooter for the first time.
I rolled on by as the three of us said the obligatory "hellos" as neighbors do. Then I heard "you should race HER!" I immediately slowed and turned around. Smiling, I approached you and your son and said "would you like to race?" Your son's eyes lit up as he looked to you for approval, nodding your head and smiling back at him.
"Hi. What's your name?"
"My name is Tucker."
"Hi Tucker. My name is Deb."
"Hi Deb," you responded.
And with the same intonation Tucker responded "Hi Deb."
Tucker then began to tell me all about his scooter, and how it was his first time riding it, and how he was already fast. You sat there smiling, letting Tucker and I have a conversation as two new friends do.
We did race. Tucker won. After the race both you and Tucker said "bye Deb", and I rolled away.

A few days later I bumped into you and Tucker again. He was once again decked out in bike helmet and scooter. The two of you greeted me like an old friend, and Tucker told me all about how he has been practicing and getting faster. You mentioned that Tucker had been talking about how fast I rolled away the other day. We talked a little more and said our goodbyes.

What you gave to me and Tucker the other day is priceless. Allowing Tucker to become "my friend" and relate to me as a person - not to be feared, not to 'get out of her way'', not to 'watch out' - made me feel visible. And what you taught Tucker in that instant! He learned that people like me are approachable with value and gifts, just like the rest of the population.

Thank you Tucker's Dad for making my days a little brighter.

Zoom-zoom,
Deb

Saturday, July 29, 2017

Laughter IS the best medicine

I woke up knowing that they had done the surgery laproscopically.
Dry irritated throat.
My jaw aching from some sort of equipment holding it open.
As best as I could
I reached to touch my ostomy bag.
It was still there.
I must have dreamt that with another hole disappears the other.
Not true.
Pain meds.
Up to urinate.
Something about paper pants and no bra
And a very bumpy I-95 ride home.
Boxes of unknown supplies met us at the door.
Along with hesitant looks by my children.
Bed.
Sleep.
Sister stroking my arm
Letting me cry
Waiting until I fell asleep.
Long, painful night
Brings in the less painful morning.
Syringes.
Dressing.
Supplement.
Gravity feeding.
Learning a new normal.
Best Lysol Soda shows up
With stories and laughter
Pictures and distractions.
Creaky, soft voice
Becomes creaky, louder voice.
"It hurts when I laugh"
Uttered and moaned.
But I don't want it to stop.
Something reassuring having Lisa sleep
In the room of my teenage daughter
The same age we were when we giggled.
Pain less.
More feedings.
Some food by mouth.
Out rolling around the neighborhood
With Lisa going slow.
Apprehensive about going by myself.
Life moving on.
Tiling bathroom.
Ripping up floors.
New bed for old bed.
Four women hiding in the bathroom
As ordinary as sitting in a bar.
Once being the crazy woman in the pwc who rode around 6.1 mph.
Now being the crazy woman in the pwc with the small couch pillow pushed against her abdomen
Riding a cautious 4.5 mph - temporarily.
First independent ride.
Seeing the Momma deer
First time in two weeks.
Staring me down.
"Where have you been?"
We seem to ask each other.
Trusting me enough to bring her babies into view
Less spots
Bigger bodies.
Cool breezes
Bring me home.

Sunday, July 23, 2017

Are we unraveling?

The toilet paper holder in our master bathroom is possessed. When it gets to the point of having a quarter of the toilet paper left on the roll, it starts unraveling on its own. Turning and unrolling until the toilet paper is hanging by the glue that keeps it on the cardboard tube.

Adam and I were hanging in our bathroom recently, doing the things that we do, when we noticed, once again, our possessed toilet paper holder take action. We both watched it, and at about the same time commented on how this unraveling is quite a good metaphor for our lives. Though we got a good laugh about our coinciding thought, and even commented that this would make a good blog post, I didn't give it much more thought until yesterday.

Our lives are possessed by ALS and seem to be unraveling before our eyes. Sometimes we are just observers to the unraveling and there is nothing we can do but watch. Sometimes we can roll the paper back up on our own through laughter and love. Sometimes we need others to help us roll the paper up with friendship and camaraderie. Sometimes we need the help of strangers.

It's the little things that happen in our lives that help me roll the paper back up and I am not sure that the people involved know or understand how much they help. Like when...
~all my kids are home for dinner and we spend time just hanging out talking at the table.
~I go out to dinner with friends and the restaurant is loud but my friends lean in to hear my participation in the conversation, and patiently wait for me to get my words out.
~Adam reminds people through subtle comments that I make decisions for myself, that he doesn't make them for me.
~a retail company stretches the rules to accommodate our different needs.

This week I feel like I am unraveling due to my upcoming feeding tube surgery. And though I logically understand the need for such, and I welcome the assistance with nutrition (eating is taking so much effort), I don't look forward to having a second hole in my abdomen. One hole for nutrition to go in, the other for waste to go out. Honestly it creeps me out. And...do I dare say it out loud? But the feeding tube represents (to me) one step closer to the end of my life.

So we move forward. Feeding tube. Having a new normal. And somehow the toilet paper will get rolled back up. It won't be even or straight, but we will make it work.

Sunday, July 16, 2017

What is it really like?

While sitting on our upstairs toilet last week I noticed the brand name sticker on the shower wheelchair. It is made by a company called EZee Life. Really. As if ANYONE who has to use a shower wheelchair, especially one that leans back and has a headrest built in, has an EZee Life! I get the marketing behind such a name, but it kind of pissed me off.

I have ALS and a lot of attention is focused on my needs, my loss, my grief. Honestly it is really hard for those in my immediate circle, particularly my caregivers, particularly Adam. On top of taking on an enormous amount of responsibility and caring for me, my loss is also his loss as our futures are so intricately entwined. We expected to grow old together, and maybe we still will. But the plans we had for our later years are forever changed as ALS has altered our path together. It is not an EZee Life.

Everything we do takes effort. Everything has to be planned out and will only get more so as my body movement becomes more limited.  I am overwhelmed with all the physical labor it takes Adam  to get me into bed. I'll break it down for you:

1. Adam gets the stairglide to the bottom of the stairs and sets up the pivot disc.
2. I move my pwc in position in front of pivot disc.
3. Adam lifts me from the pwc, and using the pivot disc, places me into the stairglide.
4. Adam gathers everything we need to take upstairs into the bucket - meds, pill container, phone, iPad, chargers, etc.
5. He heads upstairs with stuff and I follow behind on the stairglide.
6. Adam sets up pivot disc and manual wheelchair at the top of the stairs.
7. Adam lifts me from the stairglide and pivots me into the manual wheelchair, which requires holding me with one arm and the wheelchair with the other.
8. He then puts my feet on the foot rest as I can't really hold them up anymore, and wheels me to the bathroom.
9. He takes my feet off the rest and sets up the pivot disc in front of the toilet.
10. Adam then lifts me up from the manual wheelchair and pivots me, using one arm to hold me and the other to take down my pants and underwear.
11. He then has to carefully lower me onto the toilet, into a position in which I can best self care, as well as being aware of my left knee which tends to lock.
12. I take care of business but it requires some help from Adam ...things I never thought he would have to do. It is a little more complicated due to ostomy care.
13. When I am done Adam has to change me into pajamas which we do with shoes on because we need them on for traction.
14. Once my pajamas are half on Adam lifts me from the toilet, holds me with one arm, pulling up my pants and underwear with the other, pivots me, and puts me in the manual wheelchair.
15. Then to the sink where he washes me up and helps me brush my teeth.
16. Adam wheels me to the bed. He has to put the pivot disc on a riser because our bed is so high and it is the only way to get me in.
17. He positions my feet just right, lifts me while standing on the riser, and pivots me until I am sitting precariously on the edge of the bed.
18. While steadying me on the bed, Adam quickly repositions himself and flips my legs onto the bed.
19. Then there is repositioning me until I am comfortable, putting the bed in the right position, making sure my right foot is straight against my foot pillow, etc.

I am not sharing this for people to feel sorry for us, or for you to look at Adam or I in any different light (though he is a pretty awesome guy). I just want people to know that this disease, like all traumatic health changes, affects the CAL just as much as the PAL. Adam gets sad about how things have turned out, and has difficult days. I would be worried if he didn't. Then there are the days when we laugh through face washings, and he is stealing kisses with every transfer. It is not an EZee Life, but it is ours, and I am blessed to share it with Adam.

Wednesday, July 12, 2017

My world of autocorrect

We have an Echo. My brother-in-law, Lew, kindly bought it for us when I was out of work last year. It's been a great source of entertainment from playing music (mostly country) to ocean sounds (for meditation ) to most recently podcasts (I JUST started S town). I like the puny dirty jokes.

Now that my voice is going, I admittedly sound like a drunken sailor on a good day, and even my family is starting to have trouble understanding me. -- talking to my Echo, or Alexa as she is so fondly referred to, has become its own source of entertainment.

Me: Alexa, table lamps on.
Alexa: I'm sorry, I don't know table eels.
Me: Alexa, table lamps on.
A: I'm sorry, I don't know tattoo limps.
Me: Alexa, table lamps on.
A: I'm sorry. I don't know T. E. Z. Laps.
(Deep breath)
Me: Alexa, table lamps on.
A: please refer to your Alexa app to turn on your titty amps.
(Second deep breath after five minute fit of giggles)
Me: Alexa, lamps on!
A: okay
(Lamps go on)

This is a daily occurrence.

Me: Alexa, play country music.
A: playing coat and mullet by---
Me: ALEXA, play country music!
A: playing country kitchen by---
Me: ALEXA, PLAY COUNTRY MUSIC!
A: playing today's country.

Sometimes, I just give up and let her play whatever she thinks she heard me ask for.

Then there is my phone. Oy. Texting with my fingers has become very difficult for me, so I am using my voice recognition software on most interactions. I wonder what my neighbors think of me as I break into fits of laughter as I "talk to myself" in the backyard.  Trying to tell my family via text that my feeding tube was scheduled for July 26th, originally came out as: I'm sexting the feeling too for July tweety sit.  

I laughed for ten minutes.

If I don't lap I wilt die.
No.
If I don't laugh I will cry.

Live to Love. Love to Live.




Monday, July 10, 2017

Blessings

I had a bit of a scare this morning. In order for it to lose its power over me I thought I would write about it.

Adam was transferring me to the toilet like we do every morning. For some reason when I sat down I felt like I was going to pass out. The world around me started to go black and I got very dizzy and Adam had to hold me up on the toilet.  I began to sweat and Adam put a cold washcloth on my face and the back of my neck. After a few minutes I felt fine just a little weaker than normal.  I went back to bed and slept for a few more hours. Now I feel like myself, just scared and freaked out.

I don't know why this happened. Maybe I got up faster than I normally do. Maybe I was dehydrated or extra tired. It probably was the ALS. I don't know. But it scared me and prevented me from going out today and paying my respects to a family I know and love who just lost their father/husband over the weekend. And it makes me really mad when the ALS prevents me from being who I really am and doing things I would normally do.

Another strategy I use in order for scary things to lose their power is I think about my blessings and write them down if need be. I just gave this advice to a dear friend of mine, and as I was telling her to do this, I thought I need this today as well. So here it goes...in no particular order...my blessings from over this past weekend:

1. Getting up early on Saturday to drive with Adam and Ean to watch the Patriots play baseball.
2. The shady trees we found to watch the games under.
3. Watching Ean play more baseball Saturday night.
4. Seeing the sky turn beautiful colors as the storm blew in.
5. Getting to the van just as it began to rain.
6. Marian coming over a few times on Sunday to help me so I could stay home.
7. Sarah and Gillian helping me take medicine, feeding me, straightening up, and running errands.
8. A visit from Adrienne and Sue.
9. A visit from Gina and Charlie.
10. Picking up where we left off even though I haven't seen Charlie in over 25 years!
11. Fresh banana ice cream (oh. My. Goodness).
12. Chocolate cake!
13. Living in a neighborhood where you make new friends by loving on their dogs.
14. Living in a neighborhood where your new friends hug you goodbye.
15. Living in a neighborhood with majestic trees that provide shade and rustling breezes.
16. Living in a neighborhood where you can see this:


17. Parents who are very willing to cancel their plans and put their lives on hold to care for me.
18. Friends who love me and I love back...

LIVE TO LOVE. LOVE TO LIVE.

Thursday, July 6, 2017

Performance Art (?) a.k.a. Deb is losing her mind

First there were just potatoes. The kind you bake. Some small. Some larger. There were about six of them scattered about a foot and a half from the curb. The first time I took notice of them I thought they were rocks. You know the kind that people put in their landscaping beds. The first time I just rolled on by.

The next time I saw them I realized they were potatoes. Because they had started to shrivel a bit from the hot summer weather. I stopped this time thinking about where six potatoes had come from, sitting on the side of the road, in the middle of a suburban neighborhood. I took note of their positioning. The two little ones separated a bit from the four larger ones. I looked around to see if there was anyone out and about noticing me noticing the potatoes.  There wasn't.

The next day I had a destination in mind as I set out in my PWC - to the potatoes. As I rolled up, something was askew. The two little potatoes had been smashed. Not run over by a car smashed, but rather hit by a hammer smashed. The other four lay there pretty much untouched except for some rotting potatoes will do when left out in the elements. I looked around again expecting someone to be watching my reaction to, which in my mind, had become some sort of performance art piece. Again, no one.

The next evening I set out for a walk with my Mom. As we got closer to the 'potato stage', I casually mentioned the potatoes. Of course we stopped. All the potatoes were as they were the night before.  Tonight, sitting in between the larger, now mostly shriveled potatoes, was the head of a frog. Yes. Just the head. Now this got me thinking. Did the frog lose his life searching out the potatoes for a food source? Do frogs eat potatoes? If the frog had gotten run over, wouldn't the potatoes been flattened? Maybe a crow had dropped the frog mid-eat when he saw the more desirable potatoes? Wouldn't a frog be more desirable to a crow than a potato? So many questions, but my Mom wasn't really interested in looking at the dead frog much less than the rotting potatoes. As I rolled away I looked around for a camera as I had grown sure that this was being filmed.

Today it is drizzling. I didn't let that stop me from participating in this performance art piece. I set out, a little anxious about what I would find. I anticipated that something would have eaten the frog head. I found myself hoping that the potatoes would remain untouched. As I got closer I began giggling. What the hell is wrong with me that I am letting this, of all things, occupy my thoughts?! Despite questioning my sanity, I rolled up to the spot (still looking for cameras out of the corner of my eye) and stopped in disbelief. The potatoes remained untouched. The frog head was still there, but someone had taken the time to cover it gently with a yellow leaf, creating a little shrine for it made of pebbles and twigs. My jaw dropped. I was still. Tears welled in my eyes. I quickly rolled away. If there was a camera recording this, I didn''t want it to catch me crying over a shrine to a frog head.

The drizzle turned to a steady rain as my tears subsided. I head home. I decided that a child, out exploring the neighborhood as they should during these long summer days, found these unusual items and did as children do. I hope this child finds the tree bark shedding down at the other end of the neighborhood. I'm curious where that will lead.

Monday, July 3, 2017

Some stuff...

You can tell a lot about people by what is in their recycling cans. Who washes their whites in bleach; who buys organic food; who has a big family (five full cans) or who might live alone (one half can). Who just had a birthday party (hot wheels boxes) or who just had a party (vodka bottles). It sounds a bit voyeur -istic but when you ride around the neighborhood as much as I do and you are about as tall as a recycling can, you notice these things.

Tonight the neighborhood held the aromas of a holiday weekend. Barbecue chicken down one street; a fire pit burning down another. The smell of weed burning and people lighting sparklers.

On my dusk ride I saw the biggest fox I saw ever saw in our neighborhood. He had this big bushy tail and a thick coat of reddish-brown fur. He jumped out of the bushes to cross the street only three feet in front of me and when he got to the other side he looked back at me as if to say "I'll see you tomorrow."  Then he slowly crept off, a fat neighborhood cat close behind. I tried to talk to the cat and convince him not to follow the fox, but he had no interest in what I had to say. I hope I see him tomorrow too.

We went to see fireworks on Friday night. The Lawrenceville fireworks at Rider. I love fireworks. They always bring me back to Roosevelt Fourth of July celebrations with crepe paper decorated bicycles, birch beer from a keg, and musicians playing at "the head". For many years we would have fireworks at night due to the know-how of Brydie's Dad. That day was always magical to me. George Katz seemed to always win a big raffle prize, everyone from town was spread out on blankets and lawn chairs on the school grounds, and the mood was light and joyous.

I was looking at my friend's Disney trip pictures on Facebook. He has two young children, about the same age that Sarah and Gillian were the first time we took them. I was brought back to five year old Sarah dancing with Snow White during the parade. I remember how the sight of my little girl looking up at the characters with such adoration and pure joy caught my breath and made me cry. I still feel that way when I look at my kids. I had that reaction when Gillian and Ean helped me yesterday in a situation that we all knew was uncomfortable. The love, pride, and appreciation - it is indescribable.

I recently read an opinion piece written by a psychologist (psychiatrist?) who has children and lives with brain cancer. She spoke about the pressure of keeping her kids' lives "normal" in the midst of a "not normal" situation. Pressure on her kids, not her. I could totally relate to this. I initially felt like my kids had to plan to keep their lives "normal" this summer - with jobs and volunteer work and extraordinary plans with family and friends. When actually there is nothing "normal" about our lives right now. There is nothing normal about a Mom who sleeps three hours every afternoon, or can not feed herself. Maybe they just need to stay close. So no more talk of keeping things "normal".  We are just going to "be".


Thursday, June 29, 2017

Go fast

Some days I LIVE. Some days I exist. I think everyone can relate to that - with or without a terminal illness. There are some days where you just feel like you are going through the motions. There are others where you feel your spirit come alive in everything you do.

When I mentioned to my Mom that I feel like I have really LIVED the past few days, she appropriately asked me what have I done. And to that I responded 'nothing special'. And its true. There was nothing special or significant that I did or didn't do, I just feel like I LIVED.

Maybe its the beautiful weather, getting out to see Ean's baseball games, or watching Sarah go off to work. Maybe its seeing Gillian meeting some summer goals, or eating ice cream, or spending more time laughing with my Mom and Dad. Maybe its the time Adam and I spend together. Sometimes talking. Sometimes quiet. Sometimes just riding together through the neighborhood - him on his bike,  me in my chair. Both of us going fast. Whatever it is, it is LIVING.  And I am doing it.

I have found great joy in going fast. Every evening as the sky begins to darken, I head out into the neighborhood to go fast. I lean my chair back just enough, put my feet up just a bit, and go fast. I go fast past the houses and the parked cars; past landscaped lawns and bikes strewn on driveways. I go fast as I spot the fox crossing the street and the deer coming out for a stroll. I go fast past neighbors walking their dogs and kids being called in for the night. I go fast in the dusk and then I go fast until it gets dark.

There is this thrill I get from going fast in the dark. My whole life now moves slow. The way I stretch out my arms in the morning. Slow. The way I eat my food. Slow. The way I speak. Slow. When I am in my chair, and the sky is dark, and I am moving fast through the cool air, I feel like I am in control but I am really not. It is glorious and independent and exhilarating.  Right now it is my jet-skiing, my bungee-jumping, my motorcycle riding. Go fast.

Friday, June 23, 2017

rediscovering joy

Tonight I rediscovered joy
In the laughter of my children
And the twinkle in my husband's eyes.
In red jello with whipped cream
Keen conversation
And gentle caring hands of my son feeding me.
I found joy
In rolling through dusk
The first lightning bugs of summer
Humid cool breezes
Rushing through the trees
Promising rain.
I found joy in dark grey clouds
Creating mosaics against the sky
Bats beating wings
Cicadas coming awake
Roosters saying goodnight.
I found joy in fragrant flowers
Wet earth
Musky mulch
And the wood burning in backyard fire pits.
I found joy in moving fast
The darkness overcoming the road
Not being able to see in front of me
And trusting the familiarity of my path.

Really negative blog post

WARNING: THIS BLOG POST WILL CONTAIN LOTS OF CURSING, MY POLITICAL OPINIONS ON SOME TIMELY TOPICS, SOME GENERAL WHINING AND A BAD ATTITUDE. PLEASE PROCEED WITH CAUTION.

I fuckin' hate ALS. I fuckin' hate that I have it, that other people have it, and that it exists at all. I wouldn''t wish this disease on my worst enemy. It's true. If I were to be confronted with the most evil person in the world, and I got to pick how they would come to their demise, I would not choose ALS. I hate it that much. It is stealing my time. It is stealing my independence. It is stealing my ability to be a productive member of society. I fuckin' hate it.

This has been a pretty shitty week (I warned you about the cursing). ALS, allergic reaction to something (maybe a med, maybe not), hives, excruciating heartburn, not being able to scratch my own itch, my voice changing more, eating like a slob when I try to do it on my own, limiting my eating because it is giving me heartburn and because I am eating like a slob, giving in to having Adam feeding me, sleeping a lot more because of all the fuckin' Benadryl I have been taking, an ER trip, two trips to the doctor, one emergency call to some friends just so I can cry, AND the dreadful consult with the surgeon to discuss my upcoming feeding tube (which turned out to be not so dreadful but did make me sad).

Did I mention I fuckin' hate ALS?

AND there is this: Two people I know said things to me in the past few weeks that have really hurt my feelings. Don''t worry - it's not any of you. :) I am sure that they didn't mean it. I am POSITIVE they didn't mean it. And maybe I am ultra sensitive because, you know I have ALS and 50% of my time I am on the verge of tears. But the words. They were said. And now I have to decide if I want to tell my friends "hey not a cool thing to say to a person with a terminal illness" or I just want to let it go. I think people don't know what to say...

There are days when I feel like I can handle the big stuff - like ALS - and it is the little stuff that gets me all pissy and cranky. This week was like that. ALS okay. Heartburn throws me over the edge. Having an ostomy - okay. Having hives all over my body. I want to throw myself over a cliff. Knowing that a bunch of men are sitting around in a secret meeting making decisions about Healthcare reform without the input of the representatives that I voted for - that makes me sick to my stomach. I think many people are like that. It's the straw that gets you in the end.

Talking about my ostomy...June 22nd was my one year anniversary with "Consuela". It was my one year Consuela-versary. We had a little party, she wore a little hat...No, not really. REALLY, she has served me well and I thank G-d every day that I made the decision to have my colon removed and eliminate UC from my life.

Okay. I must admit that this week was not all bad. I did go to a fancy breakfast to support my friend Stephanie as she was honored with a Women In Business award from the Princeton Chamber of Commerce. I am so proud of her and was touched as she chose Adam and I to be her guests.

As I was getting in the van yesterday two baby birds were learning how to fly, and one got so tired it landed on my wheelchair. It just sat there, gathering up enough energy to take off again. We both froze - the bird and I. Finally it took off.

Adam and I took a jaunt around the neighborhood and got really close to a deer. It was a young buck. He was so still that at first I thought he was a lawn ornament. He wasn't scared; kind of looked at us and trotted away.

My cousins Alice, and Bonnie and their families are walking in an ALS walk on Saturday in my honor. They are going to be wearing cool t-shirts and carrying a big, blown up picture of us. I love them all so much.

So here it is, Friday. The last day of a pretty crappy week, that had a few good things mixed in. I'll pray this weekend that the meds, shots, home remedies will make me more comfortable, that they will find a cure for ALS, and that the upcoming days days will be filled with more good than bad.

Monday, June 19, 2017

Birds

I have become a watcher of birds. Not necessarily a bird watcher, because I don't search them out or know all their names. I love to sit on my back deck and watch the birds come to the feeders, pick out what they like, push aside what they don't, and fly away.
Blue jays
Cardinals
Red headed woodpeckers
Other, smaller woodpeckers
Sparrows
Mourning doves
Crows
Red-winged blackbirds
Sparrows
Grackles
Chickadees
Finches
They all come and I watch them. The blue jays are huge and kind of mean. They are the top of the pecking order (see what I did there?). They make a ruckus as they approach the feeders. Scaring off the smaller birds, they pick out sunflower seeds and fly to the nearest branch. With one foot they hold down the seed on the branch, peck at it with their beak, until it opens up and they can eat what is inside. The males and females have the same markings but the males are bigger.
It might seem kind of boring sitting there watching birds, but I have come to enjoy it. I appreciate the gracefulness and independence they have as they fly about, tree to tree, stopping occasionally to chat with one another. I wonder what it is they are talking about...where the best seeds are, or have your fledglings learned to fly, or did you hear about the bird that flew himself into the window and knocked himself out cold.
In my front yard, when I lean back and put my face to the sun and the sky, I can watch the sparrows that have made their nests in the knot holes in our cherry trees. Earlier in the Spring there were baby birds in these nests, making quite a bit of noise as the momma birds flew in and out. Now I don''t hear as much noise, but some momma birds seem pretty protective of the space, so I suspect new eggs have been laid by some new tenants.
There are times when these front yard sparrows are chatty, calling to each other from branch to branch. Other times they grow silent. Still and silent. Observing what is around them. Seemingly watching me as I sit still under where they are perched.
I often wonder what it would be like to be a bird. Hollow-boned, light, flying, chirping. Worrying about primal needs like my next meal or the protection of my eggs, rather than laundry or why my phone keeps dropping my wifi password.
Writing a whole blog post about watching birds. Well, I didn't expect to be doing this at this time in my life. I don't think I ever expected this. Watching and observing the birds has become part of my daily routine. Things change. I have changed. My expectations have changed. We'll keep flying along, me and the birds.






Tuesday, June 13, 2017

Pushing through and breaking down

Most days I push through
I push through
    Muscle spasms
    Pain
    Body parts that don't work
    Humiliation 
    Curious looks
    The loneliness that doesn't let me be alone
I push
    I push
        I push.
I push through
    Thoughts of death
    What will I miss?
    What will my kids miss?
    What will happen?
I push
    I push
        I push.

Yesterday 
I couldn't push through
Words like
    Resignation 
    Retirement 
    15 YEARS TOO EARLY
    Disability
They floated around me as I existed in a fog
They floated around me as I cried in anguish
Words like
    Feeding tube
    Consultation
    Surgery
    Anesthesia 
They brought upon anxiety
They brought upon uncontrollable fear.

I tried to race it away
Six miles an hour around the neighborhood 
Tears stinging my eyes 
Racing off my face
like driving raindrops through a storm
I could hear the howling coming from my body
I clinged with all my might
To whatever
To whom ever seemed safe.
Slowly
The storm began to calm
Slowly
The anxiety was replaced by a numbness
That left me devoid of feeling
A going through the motions
Letting others do for me
And move me
Sleep would bring relief
A new perspective
Tomorrow
I will push through.







Saturday, June 10, 2017

Yet another random list of random thoughts


Honeysuckle is the best smell in the whole world. Well, honeysuckle is the best natural smell in the whole world. Johnson's caramel corn on the Ocean City, NJ boardwalk is the best man-made smell.

The smell of honeysuckle brings me back to twelve year old me, walking around Roosevelt in bare feet. The asphalt would burn my feet and I would run from shadow to shadow in order to get some relief.

I went back to Roosevelt today for the 80th anniversary of the school and saw some more people who  knew me when. It's emotional to go back to where you came from. It was a beautiful event but I was more tired than expected so we didn't stay as long as I wanted or see everyone I wanted to.

I'm more tired than I was even just a week ago.

I'm physically leaning more to the right. I've noticed it in my wheelchair and more so in bed where my head is falling to the right. Time to find a propping pillow.

I overheard/semi-participated in a conversation today that went like this:
Woman 1: How are you?
Woman 2: I've just been diagnosed with (blah,blah,blah)
Woman 1: I'm so sorry.
Woman 2: At first they thought it was Lou Gehrig's disease. Thank G-d it's not that. That would be really awful.
(This woman did not know me or my diagnosis so she meant no harm but in order to make myself not break into hysterics, I told her to fuck off - in my head of course! That was for you Tina.)

My Dad took me to Sharon School this week and I saw the first graders perform in their Spring show. We went to visit old students and teacher friends. I got hugs and kisses and pictures and questions. It was so much fun. My heart is still full.

Our home is in construction mode. Two-thirds of our garage is slowly becoming an accessible bathroom.

Our home is in construction mode. Two-thirds of the stuff from our garage is spread throughout our house and yard. Patience. Patience. Patience.

I've been seeing more chipmunks lately. They are very cute.

I was in a wheelchair in my dream the other night. I believe that was the first dream I had where I was in a wheelchair. Does that mean it is finally becoming my normal? Was that a dream or a nightmare?

A woman from my online support group recently challenged others to come up with ten reasons it is good to have ALS. No, I do not accept that challenge.

There was a common theme among others who did accept the challenge that ALS opened their hearts, minds, and souls to appreciate all the moments in their lives - big and small.

I agree.


Friday, June 9, 2017

Ordinary

I recently had the opportunity to escort Gillian to an appointment she had. I say escort because I can no longer "take" people places. While I waited for her to finish up I sat by a big window which gave me fulll view of the parking lot two floors below. From my vantage point I could see into the driver side window of a car that sat a woman who I presumed was waiting for her child as well.

I watched as she did ordinary things. She reached into her purse and took out some hand lotion. The tube must have been almost empty as she struggled to get the last bit out. Finally she got enough out to be satisfied, recapped the tube, and spent a few minutes rubbing the lotion into her skin. I imagined that this was a regular routine for her as the tube was almost empty, and her hands were soft and supple.

Next she pulled out a hairbrush and spent a moment freshening up her hair. She moved the rear view mirror around so she could see herself better. She reached into her purse a third time to return the hairbrush and take out what looked like a chapstick. She shifted her body forward to get a better view in the mirror and spent what I deemed longer than necessary applying this to her lips.

After she put the chapstick away she paused for a few moments. Maybe she was thinking about the child she was waiting for or what she was going to make for dinner or the papers piling up on her desk at work. Maybe she was worried about her mother or the mole on her husband's back or the six loads of laundry that had appeared overnight. She put all that aside and pulled out a magazine and began to skim through it.

I lost interest. I put my head back and closed my eyes for a bit. I was once this woman, when I could "take" instead of escort; when I could reach for things like lotion tubes and hairbrushes and they weren't ridiculously heavy. I once worried about piles of paperwork, but now I worry about feeding tubes and handicapped accessible bathrooms.

My eyes opened with the sound of a door slamming. My new "friend" was out of her car, arms over head, stretching her body. She was wearing her work clothes - an a-line skirt, brown boots, and a peach short sleeve blouse. She leaned down to rub something from her boots. She began to slowly pace back and forth in the parking lot, reading something on her aqua blue phone. I wondered whether she was reading a text or checking Facebook or catching up on work emails.

I closed my eyes again. I didn't want to watch her anymore. I began to feel envious of this stranger and I didn't like the feelings and the tears that were starting to well up. They were not something I could afford right now. So I began to meditate, my focus starting with the big blessings in my life. And then I heard "hi mom" and my eyes opened and it was okay.

Sunday, June 4, 2017

You can pick your friends, you can pick your nose...


I can't get this weekend off of my mind. My 28th college reunion. It really wasn't even a whole weekend but a jam packed 24 hours of laughing, loving, and some crying. I laughed so hard that my face still hurts! Fabulous. I keep going back to Facebook to see pictures and comments made by my friends that I spent this emotional time with.

I know I have said this before but there is nothing - NOTHING - like spending time with people who knew you and loved you 'when'. In this scenario = when I was eighteen and scared about being away from home for the first time. When I was nineteen and doing some things I just might regret later in life. When I was twenty and I was less than self-assured but I kind of played it off. When I was twenty-one and "real" life was just around the corner. And intermixed with the four years of 'when' there were stories and memories and a comfort that is like no other.

Social media - Facebook more specifically - is really an invaluable resource for me. I was looking at some pictures from the reunion and I realized that being able to reach out through photos and comments and immeasurable support through Facebook has made me closer to some of my friends from my college years. That this venue has allowed me the opportunity to be real friends with people I "friended".

And that leads me to crying and more specifically, breakfast in the dining hall this morning. On Saturday I really didn't cry. Well maybe a little. Well maybe a lot for a short amount of time. Five minutes. I was catching up with my favorite professor and he kindly expressed sorrow for my diagnosis and the waterworks started and I just hugged him tightly. To say it might have been a bit awkward is an understatement, but it happened. But I digress. Back to breakfast in the dining hall...

This morning many of us gathered in the dining hall for breakfast. As we were finishing up, we took a group picture and started to say our goodbyes. Goodbyes are very hard for me, especially when I am expressing them to people I don't see very often. All of these thoughts run through my head. Will this be the last time I see this person? Did I tell them how much I love them? (I know I have written about this before) And then I cry. And I am an UGLY crier. And because of the ALS I can't control my crying and it all becomes a hot fuckin' mess. But even though the crying is ugly (and quite loud I might add) the emotions behind it are in a way beautiful, and more subdued, and complex.

And THAT leads me to the third line of this blog post's title...
But you can't pick your friend's nose.
I went back to the dorm we were staying in (still crying), and cried some more. As I leaned on Shawn and she stroked my hair, Linda handed me tissues. And without missing a beat, Shawn took my boogie tissues from my hand as I was done with them and threw them away. So maybe you can't pick your friend's nose, but people who love you and knew you 'when' will truly do anything for you, including taking away boogie tissues.


Friday, June 2, 2017

Update

Adam and I went back to clinic yesterday. I was dreading this visit (does anyone look forward to going to an ALS clinic?) because I knew this would be the visit at which I needed to make a decision about a feeding tube. And it was.

I am getting a feeding tube. Soon. I just need to finalize some decisions about the surgeon, and then it will be scheduled. Another hole in my stomach. I will be able to eat regular food for pleasure, but this will help me supplement my calorie intake as the physical act of eating is tiring me out. All that fork lifting, sandwich holding, and chewing can really wipe a girl out! I lost four pounds since my last visit and though that is not too bad it could be the beginning of a trend. Funny how for the past twenty years I've wanted to lose some weight, and now it is important for me to keep it on.

We got to see a sample of a feeding tube. It's kind of long. One more thing to tuck into my pants and underwear! The nutritionist showed us how you would put food in.. A little intimidating but doable. Actually I am not doing, Adam is.  I feel for him. Just another "to do" to add to his list. It's a long list. Feel bad and guilty and wishing I could take things off his plate.

As much as I was dreading this visit and the discussion and decision around the "tube", I feel okay. Right now I am in "this is how it is" phase and the prospect of this step is not as daunting as I thought it would be. I am a woman with ALS who needs to get a feeding tube in order to maintain strength, good nutrition, and quality of life so I can continue to get out and kick ass. There. Done.

In other news, my breathing level remained stable. REALLY good news. My longevity correlates with breathing levels so we are very happy about this. Also why it is a good time to do the feeding tube procedure.

We had a long conversation with my doctor about Radicava. You might have heard that the FDA expedited the approval of a new drug to slow down the progression of ALS. After a very in depth discussion, my doctor, Adam, and I decided this medication is not for me. I am not going into the details here as to why (not sure I could do the explanation justice) so you'll have to trust me on this. It's okay. I'm really at peace with this decision.

We talked about some other things like my foot drop (what a pain in the foot!), getting something tray-like to hold my iPad for when I stop talking, what I can do when food is stuck between my mouth and gums (ew!), and the possibity of using a voice magnifier (?) especially when I am on the phone. All sorts of interesting things you would never know about unless you had ALS.

Late yesterday afternoon I went to my school's end of year party / retirement party for a fabulous teacher Linda Biondi. It was wonderful to see everyone and celebrate the accomplishments of an incredible friend and educator. At the end of the evening I spent some time talking to a young teacher and new friend whose Mom has been recently diagnosed with.ALS.  It was so apparent to me how much my friend loves her Mom. I was able to answer some questions, give some advice, and hopefully be a resource for this family as I am about six months ahead of them in diagnosis. Selfishly, I must admit, it felt good to help. I don't get to do much of that lately, and if anything - ANYTHING. - good can come out of this journey, I will take it.

Please continue to live to love, and love to live. I know I will.

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
Toddler.

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

Dress me
Wash me
Put me on the toilet
Toddler.


I am a woman.

Fist determined
Confident smile
Provider
Woman.

Please help me
Hold me
Don't ever let go
Woman.

Dress up
Wash up
Clean up
Woman.


I am a warrior!

Fist clenched
Confident smile
Ravenous eater
Warrior!

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

Dress others
Wash away pain
Scour away dirt
Warrior!



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.