Friday, December 15, 2017

Thoughts

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

Perspective...

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

Lingering

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
This,
That,
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 side...my 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 because...well...my hands don't work. We waited until the mysterious person hung up, with giggles and kisses and some whining (Jackson, not me).

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

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

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



Live to love. Love to live.

Sunday, November 5, 2017

bits and pieces 2

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

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

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

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

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

Live to Love. Love to Live.

Tuesday, October 31, 2017

I can (for Abby who reminded me)

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

I can kiss.

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

I can laugh.

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

I can listen.

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

I can love.

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

I can teach.

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

I can be sorry.

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

I can.

Wednesday, October 25, 2017

Naked

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

Saturday, October 21, 2017

Bits and Pieces

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

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

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

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

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

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

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

Monday, October 16, 2017

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.