Saturday, December 31, 2016

A little bit of this and a little bit of that

I was sitting on the scooter in the Air and Space Museum; sitting sort of in the corner waiting for my family to gather with me. It was a great people watching spot. I was watching this one particular family. A young Mom and Dad, maybe in their early thirties, three young kids, and a woman who I took to be the Grandma. She looked kind of like I would in about 15 years - curly shoulder length hair that she let go gray, wearing a comfortable sweater and jeans, practical sneakers.  She was using her strong arms to swing her toddler granddaughter back and forth. She was facing me and I caught her eye and smiled.  She smiled back. She leaned down and whispered in her granddaughter's ear, and then the little girl came toddling over to me and did that backwards wave that kids do before they have their sense of direction. I waved back and said "hi". She toddled back to her Dad and her Grandma went after her.

Yesterday I felt so strong and rejuvenated. Almost like the ALS had paused and was giving me a gift. I felt alive visiting with friends and was able to move with more fluidity.  There were no moments of great sorrow, and I didn't feel this overwhelming sense of fatigue that I sometimes do. I felt like my old self in so many ways, yet almost a newer, more aware version. Like I had some epiphany of what it is that makes people whole and happy.  When I sat down to write my blog post "2016", it felt so right to think about all that went well during the past year.

Now it is New Year's Eve, and as many people do, I am thinking about my New Year's resolution. What is it that I can do to make myself a better person; help my family; help my community; help my nation; help my world?  I am going to work on listening more and talking less. Really hearing what people are saying. Some of this might be forced as it is becoming more difficult for me to talk for long periods of time without my voice being strained and my words becoming somewhat slurred. But maybe that is a sign that listening better is something of value that I can do. I can listen to my kids without passing judgement on their decisions. Sometimes they don't need my opinion, they just need to be heard (Thanks to my Mom for suggesting that). I can listen to our community members and see what it is that others need their village to do. I can listen to our national and world leaders and fill in the gaps of things they might be missing. I am going to try to listen more and act upon what I hear.

On our way home from DC we stopped for lunch at a Friendly's. We haven't been to a Friendly's in a really long time, and without saying it out loud I knew we were all pretty excited about the ice cream sundaes that were going to come at the end of our meal. We sat down and had some nice "wrapping up" conversations about our trip - what was your favorite part? what I would want to do next time? - the usual. We all were happy with our food and our company. Before our ice cream came, Sarah rolled me into the ladies room. I am not sure why but I was anticipating a struggle with the handicapped bathroom stall.  I was pleasantly surprised! It was large and set up perfectly for someone in a wheelchair. I did my thing, washed my hands, and Sarah I came back to the table just as our ice cream arrived. I sat savoring every bite of that mint chocolate chip hot fudge sundae. But I realized the ease of the handicapped bathroom stall made me equally as happy. Weird, right?! I guess you never know where you can find happiness.

Friday, December 30, 2016

2016

Well, here we are. New Year's Eve Eve. One and a half days until this year ends. I keep seeing all these posts on Facebook about how people are looking forward to this year being over, and how 2016 was such an awful year. Yes, a crazy man got elected to be President of the United States. Yes, a lot of celebrities died. And on a personal note, yes, I was diagnosed with ALS. But perhaps we shouldn't blame the year. My friend has said that she thinks it is a bit silly when people say "January was a bad month" or "2016 was a bad year". I tend to agree. Yes, bad things did happen during that time period, but so did lots of good things - some big and some little. So I am here to tell you about the good things that happened in 2016 - at least the things I can remember. We will call this the List of good in 2016.

Adam loves me.
I had my colon removed and I no longer have ulcerative colitis.
My parents are both healthy.
I began writing again after a very long hiatus.
Sarah started college. And she likes it! And she writes beautiful poetry.
Gillian loves school. And she loves to learn.
Ean started high school. And he likes it.
Ean was on a great travel baseball team and we got to go away with them this year.
I have wonderful friends.
My friends have gone above and beyond to show their love.
People who were once strangers are now new friends.
Adam and I went to Las Vegas with Kathleen and Lew.
Adam and I went to DC with the kids.
The patriotism and sense of American pride I felt in DC was a breath of fresh air.
Smithsonian museums are really amazing.
DC at night is breathtaking.
My dogs are happy and love to snuggle me.
Friends had healthy babies.
Karen's son is going longer periods of time with good counts and better health. He spent Christmas at home!
I am still here telling people I love them every single day.
Surprise visits from friends.
Surprise dinners from friends.
Marian.
The blue jays have come back to make a home in my backyard.
The ramps that get me in and out of my house.
My wheelchair was approved by the insurance company.
I still have health insurance.
I can still do little things to make others happy.
My relationships are getting stronger.
I gained a new appreciation for the music of Michael Jackson and Darius Rucker.
I reconnected with some long, lost friends.
I am sharing memories and making new ones.
The cherry trees in my front yard still bloom every Spring and make me and others in the community smile.
The variations of color in the fall leaves.
Snow.
The warmth of Summer breezes and being able to have your windows open.
I am still a teacher.
Etc...










Friday, December 23, 2016

Warning: The raw, real stuff

I am having a very difficult time seeing the positive these past few days. Even when I do the things that typically would make me happy - blogging, listing things I am grateful for, having lunch with my parents, dates with Adam, visits from friends, seeing my school friends and students, shopping, spending time with my kids - the happiness is fleeting. And then I go back into myself. Thinking about all the awful things that are going to come in the future. Or the wonderful moments that are not going to happen.  My body is failing me, more often than it was even a week ago. A friend I hadn't seen in over a month told me my voice is starting to change. Crap. I thought it was, but I was kind of in denial.
I desperately want to be happy all the time. I desperately want to positive all the time. But that is just not reality. At least not for me. And then I fall into this feeling of guilt. I actually feel guilty for feeling sad. So many people are doing these INCREDIBLY kind things for me and my family. I feel this unrealistic self-expectation to be happier because of that. I know, it's crazy. Every one of my friends right now are saying "Deb - really?! No one is expecting that from you." I know that. It's my own thing.
Adam is now dressing me and helping me shower. He is helping me get into bed every night, and out of bed every morning. He knows how to set up the wheelchair so I can get in and out easiest. My parents and Adam chauffeur me around so I can stay active. I am losing some control of my bladder for which I take a medication. Last night I fell asleep without taking the medication. So today...well...it sucked. My crying and laughing have become more intense, so when I do both I often sound a bit manic. I keep thinking that I might want to take the medication to prevent that but I think I want to cry and laugh intensely. It keeps me human. It keeps me feeling.
I have so many questions that remain unanswered. I have asked them. There are just no answers because every PALS is different. There is no formula. When will I start having respiratory problems? When will I lose my voice?  Will I completely lose my ability to bear weight on my legs?
Honestly, the respiratory issues scare the shit out of me. I have this very strong fear of not being able to breathe. You know when you are watching a movie or television show and they show a character being choked or under water? I can't watch it. I can feel my throat starting to close up in empathy for the character. Is it like that?
I have recently joined a few online support groups. The information I have received is helpful without being scary. Some of it is actually kind of funny. The PALS I have met are kind and supportive. They are all at different points in the disease. Some have just been diagnosed. Some have been living with the disease a long time. Many are somewhere in between. Most of the time, unless people tell you or you see a current picture of them, you don't know that they are on breathing apparatus or have lost use of their hands or voice. Technology has provided many with the opportunity to express themselves in the written form long after their hands or voice don't work.
Today I found out one of these PALS has passed away. Died. From ALS. I had seen some of her posts and the fact that she passed came as a shock to me. Her writing made her seem so alive. She was so alive. And then she wasn't. She isn't. I didn't know her. We had little communication. Maybe none at all. Honestly, I don't even remember. But now she has died. And it became real. This is what is going to happen to me. I am a PALS and I will eventually die from this horrible disease. I have a voice. I have limited use of my hands. But I will die.
Some have suggested to me (and I have suggested to myself) that why am I spending time focusing on the dying rather than the living. I do focus on the living. I want to focus on the living. When you know you have a disease that there is no cure for, how can you not focus even a little on the dying?! And add to that me being a control freak, of course I am going to focus some on the dying. I need to organize it as much as I can!
I warned you. This is raw, but real. It doesn't mean that I am unhappy or sad all the time. It just means that my body is reminding more often than before, "Heh, you have ALS."




Thursday, December 22, 2016

My ABC's of gratitude

I have been inspired by a dear friend to write a A-Z list of gratitude.  Here it goes:

Adam; ALS Association
Babies; babies laughing; bracelets; blogging; b'shert
Children; Consuela; crying; chocolate; colleagues
Dad; donations; dogs
Ean; elephant ears; Dr. Elman; eating
Family and Friends; forgiveness; forever
Gillian; giving; generosity
Hugs; helpers; hope
Internet; insurance; inspiration
Judaism; journeys
Kids (mine and all the others); kisses; kindness
Live to Love, Love to Live; LOVE; laughing; Lawrenceville
Mom; money; music; Mount Holyoke; mitzvot
Normalcy; nice notes; new friends
Open communication; old friends
Packages; patience; prayers and praying
Quiet
Religion; reflection; Robbinsville; Roosevelt; ramps
Sarah; stairglide; stars; simplicity; Sharon School; swallowing; students
Trying; time; transferring; texting; talking; teachers
Understanding
Village; vans
Wheelchairs; warmth
Xrays
Yelling
Zest for life




Wednesday, December 21, 2016

The summers of my childhood (part 1)

The adventure started the way it always did.

We walked through Abby’s sliding glass door.  The grass in her backyard was green and lush - New Jersey summertime grass - and needed to be mowed.  We stomped through the tall carpet and made our way into the entrance of the woods.  

There was a path.  It was easier to see in the winter and fall, but the summer evening rain and the hot daily sun made the onion grass and stink weed grow over the earth that was once worn away. We used walking sticks and our sneakers to push aside what was in the way, and started into the woods.

It was all familiar.  The tall, thin sweet gum trees that dropped sharp, spherical, seed pods.  The old elm that held the poison ivy snake around its thick, dimpled trunk.  The occasional Queen Anne’s Lace, it’s petite white flowers peeking around tree stumps. The four decaying trees that now held abandoned squirrel nests.  

The sweet smells of wet earth and honeysuckle filled the air as we walked to our destination.  We walked silently, concentrating on pushing aside the prickle bushes for each other.   

We knew that this was going to be the day we were finally brave enough.  We had been walking to the old white desk mysteriously hidden in the woods since the first days of summer.  It was now the very end of August.  School would start soon.  It was time.  

As I walked I asked Abby, “How do you think the desk got there?”  It was a question we had asked each other a trillion times.  Each time our answer was different.  “Maybe Mr. Izzy put it there.” Abby stated.  “How could he have done that?” I wondered, “Mr. Izzy is barely strong enough to pour our lemonade.”  “Maybe he had help?”  Abby questioned.  I grew silent, thinking about who would help Abby’s lonely neighbor lug an old desk into the woods and why.

I knew we were close. I looked up and saw a flicker of light as the sun reflected off the handle of the center desk drawer.  It was the only drawer that still had hardware.  All the other drawers had gaping holes where the handles used to be.  We often watched tent caterpillars and daddy-long-legs venture in and out of those holes.  Those drawers we had already opened.  They held no mystery to us anymore.  It was the center drawer that we still had to conquer.

Abby stopped.  She turned around sharply and got very close.  Holding her pinky out for pinky swear she said “You promise you won’t back down this time?”  I felt my face turn red with shame.  I nodded confidently and hooked my pinky into hers.  The last two times we had been on our adventure I had run away, unable to finish what we had come for.  The drawer still remained unopened and we were running out of time.

We were now in the clearing where the desk lay, tilted on its right side, two legs broken.  I stopped and looked at it carefully.  It always surprised me that the desk was still so white.  It was like someone had lovingly painted it the night before they decided to abandon it in the woods.

We walked up to the desk, dropped our sticks, and just stood there.  Abby bit her lower lip as I stared at her waiting for the signal.  There were bits of grass and leaves in her braids, and she scratched at the bug bite on the base of her neck that was starting to swell.

Abby looked at me as we both reached our hands forward, each taking ahold of the handle.  My hands were shaking and my heart was beating so fast I wondered if I would have the strength to pull.  
“Remember, on three.”  
I nodded and closed my eyes.

“One. Two. Three.”

I pulled with all my might.  The momentum of the pull threw me to the ground.  My right hand was still wrapped around the desk handle and I could feel that the drawer and Abby had come down with me.  I quickly scampered to my knees so I could see what was inside.  Abby was already hunched over the drawer.  

A small nest of leaves and twigs, bird feathers and dried grass had partially ricocheted out of the drawer.  I noticed movement and a high pitch sound.  Little white balls of fur were running everywhere, over my knees, and the hot pink laces of my new school sneakers.  

The high pitched sound got louder and different and I realized it was now Abby screaming.  I glanced over and saw the back of her as she was running towards her house.  I began to run after her, hearing my own screams as they echoed through the woods.  

No sticks to hold back the prickles this time, I could feel them scratching at my bare summer legs. We ran and ran until we exited the woods and threw ourselves down into the cool grass.

Abby and I began to laugh.  Laugh and laugh and laugh.  Rolling on the ground, tears streaming down our face, holding our aching bellies. We rolled on our backs, looking up at the blue sky, and over time we became still.  

We lay there for what seemed like forever, each of us calm, giving our hearts time to stop racing, wrapped up in our own thoughts.

Later that day, I began the long walk home.  I thought about the adventures that we had this summer.  I thought about the soft creatures whose home we had upturned.  I thought about the desk and Mr. Izzy, and Abby’s cool backyard.  I looked down at the dried blood on my legs.  Next time, I decided, it would be enough to never open the drawer.  Then the adventure could go on forever.






Tuesday, December 20, 2016

Hope

The fatigue hits hard and suddenly.  It doesn't happen every day but it is definitely happening more often than it was, even only a week or so ago. I feel the fatigue in my legs, my arms, my jaw, my core, and my hands. My hands. My right hand is starting to curl over in a way that makes it rigid. Maybe rigid is not the right word. Like it is difficult to straighten out. Especially my pointer finger. Typing has become a bit more difficult, I am gripping the joystick on the loaner power wheelchair in a strange way, and writing has become a lengthy and laborious act. I was wiping off the kitchen table and counter today and I had a lot of trouble making my hand flat under the paper towel. So I ended up wiping with a fist.
Sarah is home now and we are falling into the routine of having five of us in the house instead of four. It is interesting to see how we adjust to some things quickly, like no time has passed, but other things need a bit more time. We have a lot more equipment in the house than when she was home for Thanksgiving, so its like having seven or eight people living here.  It was really nice to sit at the dinner table tonight and have the five of us banter, and laugh, and reconnect.
I have been writing close to three hours a day. It is like I have this motor inside of me that will eventually run out of gas. I know I will get to a point where I won't be able to type with my hands, and I might not be able to use voice recognition, so I want to get it all out. I feel compelled to run the motor. And when I am not running the motor I am thinking about how I will run the motor.  Some of what I am writing is quite difficult and very personal, and I spend some of my writing time crying to myself.  It is exhausting. The dogs don't really know what to make of the wailing sounds that come out of me as I sit at the computer for hours on end. Sometimes they mosey on over and just sit close. It is good to have dogs. Please don't feel bad for me about the crying. It kind of feels good. Cathartic. I know I have said that before.

I have been thinking about the concept of HOPE. I recently heard some of an interview Oprah did with Michelle Obama. She was discussing the concept of hope, and how we as human beings need to have hope. "What else do you have if you don't have hope? What do you give your kids if you don't have hope?"
Hope has become a much more obscure concept for me now that I am a PALS. Can you feel hopeful when there is no hope? How do you have hope when there is no cure? How do you teach your children to be hopeful when you struggle to be hopeful yourself?  Yes, these are the questions I think about as I lay awake at night. I have come to some conclusions.
I have hope that there will one day be a cure for ALS.
I have hope in the doctors and scientists and fundraisers that are doing all the good work to get to the cure. I have hope that my children will be instrumental in keeping kindness and generosity and compassion alive in our society. I have hope in the good people in this world to overcome the evil. I have hope that the kindness I put out into the universe will touch people, and they in turn will pass it on.
I hope to continue to find hope.


Saturday, December 17, 2016

Stream that starts at 1:30 am and ends never

I have ALS.
I am a person with ALS.
PALS.
Fuck.
I wish I could wake up in the morning and not have ALS.
I wonder why I have ALS and not someone else.
I guess that is a question for the scientists and researchers.
Or G-d.
Maybe G-d is mad at me? (Rhetorical)
I don't think G-d is mad at me.
Does G-d gets mad?
I am not sure I want to think about G-d being mad.
I am pretty sure that is up to interpretation.
Adam is mad.
The dog peed on our carpet.
Adam is cleaning it up.
I can't help him because, yes, you guessed it, I have ALS.
It was Sonky not Jackson.
Pretty unusual.
We need a mini steam cleaner.
I should get that for Adam for his birthday.
That is pretty unromantic.
He is still romantic.
I hope he is always romantic.
I wish we could get old together.
Adam will be a cute old man.
We have a lot of stuff in our house that is in our way right now.
Like extra chairs.
Have to move the chairs to make room for the wheelchairs.
Lots of wheelchairs.
No more walkers.
We have the walkers but I am really not able to use them anymore.
We put them away.
One is in Sarah's room.
Sarah is coming home on Monday for a whole month.
I am so happy.
Have to move the walker from her room.
That is depressing.
I don't want that to be in her room.
I thought about not blogging until she is done with her finals.
Maybe this will distract her.
I'll tell her not to read it.
She probably will anyway.
Worth a try.
I am proud of her.
Proud of all three of them.
I wonder if they know that.
I think they do.
I am going to tell them more.
I wish I was going to be around longer for them.
That sounds like I am giving up.
No, its just reality.
Not giving up just being realistic.
Reality.
We have to move some of this stuff out of our way.
Like the extra chairs and the junk on the kitchen window sill, and in my bathroom.
We have to remove the wall in our bathroom.
Weird.
Removing a wall.
We are getting a lift chair.
Maybe it should go in the living room.
I can't get in the den.
I have a bar on my bed now.
Like you have for toddlers.
But smaller.
Adam has to help me get dressed now.
And undressed.
And help with the shower.
Like a toddler.
I am going backwards.
Like Benjamin Button.
Was that the movie?
Can't remember.
Bill made Gillian a soup she really likes.
Ralph and Terry made us potato knishes.
Gillian is in heaven with both of those foods.
She has stick-with-it-ness.
That should be a real word.
Stickwithitness.
She has been a vegetarian for a long time now.
Maybe that will serve her body well and she will always be healthy.
Oh G-d I hope my kids stay healthy!
With all the craziness in the world today, who will protect them?
Adam.
Adam will.
He is a really good Dad.
My Dad is a great Dad.
He and my Mom are working really hard to help me.
I am sad for them.
Very often.
I have to think of something else right now.
Thinking about how they are feeling is too hard.
Puppies!
Let's think of puppies.
A new friend sent me a picture of her puppy.
I have to respond.
He/she was very cute.
A pug.
Ean loves pugs.
...



Friday, December 16, 2016

The Joy of Music

I had the pleasure of being on stage quite a bit in high school and college.  Not as a musician - ha! that is actually kind of comical because I don't think I could carry a tune in a bucket.  I was involved in most of the plays during my high school career and some during college.  In high school I was mostly in the ensemble or had small speaking parts.  In college I had some more significant roles, but I was an average actor at best.  But, I loved it.  With every fiber of my being I loved being on stage, and being a part of something that made others laugh, or think, or wonder, or feel, or all of the above. I loved that feeling of coming to the edge of the stage for a bow, and looking out at the audience through the stage lights and seeing faces of appreciation and smiles.  I loved the feeling of camaraderie one got from being a part of a cast - a part of a whole.
I remember going to see Sarah and her friends perform High School Musical (Jr version) when she was in Middle School.  When the students came to the front of the stage to take a bow, I bawled like a baby.  (Oh my goodness, who cries at High School Musical - Junior version none the less!)  The look on the kids faces as the audience stood with applause - I understood their pride and success and feeling of connection.  I felt it for them.  That happens to me almost every time I see a live production or concert.  Whether my children are involved or not, I feel it.
I have had the pleasure and the honor of attending the most amazing musical experiences over the past two weeks.  Right here in Lawrence.  Last week the instrumental winter concert.  Last night the vocal winter concert.  Brilliant.  Both brilliant, and moving, and generated such emotion for me. The emotional connection these students made to people when they were on stage creating such beauty - it is breathtaking.  Their music makes me feel alive.
Gillian is deeply ingrained in the instrumental music program at Lawrence High School.  She plays trombone and is a member of the marching band (Red Scare), jazz band, pit band (hopefully), takes an instrumental music class every year, and a large portion of her friends are those that are involved in the music program as well.  When Gillian was in fourth grade she got to pick an instrument to play in the intermediate school music program.  She picked trombone. I remember Adam and I thinking this would be a short lived experience as her sister found out pretty quickly that music was not for her.  But Gillian would prove us wrong at every turn.  She continued to play and practice and improve until playing the trombone became "her thing".  She continued to play and practice and improve until music became "her thing".
I believe Gillian spent a lot of her younger years proving us wrong.  Born a bit premature, we were sure she would have some issues.  Yes, it took her a bit longer to crawl and walk and talk.  No issues. Once she hit those milestones she took off.  Almost like she set out to prove to us and the world that there is absolutely nothing she can not do.  And that is how she approached music.  She was going to be a musician, and will continue to be a musician.  She was going to be a learner, and will continue to be a learner.  She was going to be an organizer, and will continue to be an organizer.  She was going to be a beautiful soul, and will always be a beautiful soul.
So as I watched Gillian and her friends perform on stage over the past week or so, I felt deeply moved by the music they created.  Not only because of my experience, but because of theirs. Whether it be with the trombone or their voices, what they are creating is a way to connect to the world and make our lives a little more beautiful.

Wednesday, December 14, 2016

Larry, Straws, and Hugs - oh my!

Part One: Larry

I am sure many of you in the Mercer County area have been blessed by knowing Larry.  Larry is the deli guy that used to work at Wegmans in Princeton.  He has this booming voice, and fantastic smile, and has a way of making you feel like you are the customer he had been waiting to see all day.  Larry always greeted you with eye contact, and a "how are you doing today!"  It really was the highlight of my shopping experience to see Larry.  He would ask about the family and tell me about his kids, or the newest grandchild.  Once he was so excited about his new granddaughter that he actually pulled out his phone to show me a picture!  (She is adorable by the way.)  I don't know if Larry loved his job, but it sure seemed like he did.  When I first met him I selfishly thought he was just that friendly to me.  Nope - turns out that he was just that friendly to everyone.  In fact there had been many times I had been on line at the deli counter, and people asked to skip their turn in order to be helped by Larry. "It's okay - I'll wait for Larry to weigh the swiss."  "Larry knows how I like my turkey sliced - I'll wait for him."  But I knew secretly it wasn't about the thinness of the turkey slices, or how he weighed the swiss to the correct amount. It was about the connection.  It was about the smile, and the laughter, and the way he made us feel.
Last December I brought Larry a Christmas card with a lottery scratch-off inside.  I had overheard him talking a few weeks earlier about his love of the lottery.  I scribbled a few words of encouragement (hope you win) and others about how kind he is.  When I handed it to him he said "Thank you. G-d bless." and I blessed him right back.
A few weeks went by and I didn't see Larry anymore.  I heard through the grapevine that his wife was ill and he was staying home to care for her.  I don't know that to be definitely true, but if it is, I imagine that of course Larry would care for his wife.  Through the years I learned about the love they shared and the family they created and raised together.  I prefer to imagine that Larry scratched off that lottery ticket and won big, and he and his beautiful wife are on a beach somewhere sipping fruity drinks, and loving on their grandkids.

Part Two: Straws

I LOVE drinking out of a straw.  I know that seems like a strange thing to love, but I really do love it. I especially love drinking a diet coke out of a straw.  It's my thing. After a long day of teaching you would often find me at the McDonald's drive-thru or at a local Wawa drinking my medium diet coke through a straw. At our home, on the kitchen counter we had a few rows of straw cups.  When the straws broke, got lost, or inevitably melted at the bottom of my dishwasher, I immediately got on Amazon and ordered a new pack of multi-colored straws.  So beautiful!  My girls definitely picked up on my love of the straw.
Yesterday I went to the rehab doctor - he is the guy overseeing my wheelchair needs and ordering.  I was filling him in on a couple of things, one being that I am choking a bit more when I am drinking - like fluid is going down the wrong pipe.  I need to take smaller sips,  Then he said I should stop using a straw. I held it together and said "really?" Yup - using a straw brings in too much liquid into my mouth at once and swooshes around too much in my mouth.  I believe my muscles in my mouth are weakening and can't appropriately direct the liquid where it needs to go.  Mind you that this going down the wrong pipe doesn't happen all the time, but more often to me than the average person.  Not using a straw is just one way to help alleviate this problem a bit.
When the doctor stepped out of the room and it was just me and my Mom, I began to cry.  I know, I know.  In the grand scheme of things not using a straw for the rest of my life is not that big of a deal. However I am very aware that this is just a drop in the bucket for swallowing and respiratory problems to come.  And it just pisses me off because I love the straw!
I was in kind of a pissy mood for the rest of the day.  When Adam got home I let it all out on him.  I was hysterical - crying so hard that he couldn't even understand me.  I finally got out the story about the straw.  Adam hugged me and let me cry,  Within 15 minutes the straw cups from our kitchen counter were put away and Adam had replaced them with light, plastic cups that are easy for me to hold.  This man gets me and my straws.

Part Three: Hugs

I have discovered a few other PALS* that write blogs.  I was reading one yesterday, and the woman made mention of missing hugs - full on, standing up body to standing up body, hugs.  YES!  I miss hugs too!  I still hug, but mostly it is from the sitting position and it becomes a kind of half-hug.  And that is okay.  I'll definitely take it.  But there is something about a whole body hug, when you can feel it in your arms and legs and your body kind of melts into the other person.  And I am not talking about a foreplay hug, or a hug that leads to something more.  Just your run of the mill hug.  I miss it.
Adam misses it too.  We always liked to hug.  Sometimes when he helps me up, he makes sure to hug me like we used to, before he sets me down.  Strong arms wrapped around me, face nuzzled in my neck hugs. It feels normal and safe. Comforting.

*PALS = Person/People with ALS

Monday, December 12, 2016

Jackpot of kindness

How does one adequately thank others for kindness?

Of course there are the words "thank you" or "I really appreciate what you have done for me".
Very often words are just not enough.
For me and all the kindness that has been shown to me and my family, words are definitely not enough.

I don't even know where to begin?

There are people who are raising me up when I literally can not stand, and raising money for a future that is unknown and I can not fathom to understand.  People I love taking us on a trip of a lifetime and creating memories and making me laugh and forget even if it is just for a little while. Friends offering loving words - people from my distant past, my immediate past, and some new friends from my future.  Past students, past parents, current students and parents, my children's friends, old boyfriends, people I have loved and have loved me back.  People planning events, making me lunch, watching me cry, offering us shoulders, and time, and generosity beyond our wildest dreams. Messages, cards, hugs, sentimental jewelry, spiritual guidance, texts, videos of their cute kids, meatballs, including me, remembering me.

Understanding my deep, deep seeded fear of being forgotten.

How does one adequately thank others for such kindness?

I don't know.  And every time I am offered such a kindness I do an internal double take.  Is it me? Am I the one with ALS?  Am I the one that has the uncertain future? Am I the one who is being taken care of in such a remarkable way by my husband, and parents, and children, and family, and friends, and community?  Am I the one in this physically and emotionally vulnerable situation?

How does one thank others for this type of kindness?

I think it is to continue to be kind yourself.  Continue to pay it forward. To show people that even when one is presented with a devastating illness, you continue to be kind.  To show people that those who take care of you and love you are always worthy of your kindness.  To show strangers that even though you are in a precarious situation yourself, you always have enough love inside of you to be kind.  Say hello to the stranger in the elevator, give the homeless man a few bucks, wave to the baby in the airport.  Smile at the man offering his arm to you on the airplane, listen to the lady tell her story on line at the donut shop, and make sure you really didn't hurt the gentleman you almost ran over with your scooter.  Throw away another's garbage, forgive others when they have made a silly mistake, hold the door for as many people who choose to walk through it.  Check on a sick friend, return a kind email, and pass on some of your strength to another when they are running low.

There are an infinite amount of ways one can be kind.  That is how I choose to say thank you.

Wednesday, December 7, 2016

Small moments

Yesterday I lay on my left side
And I watched my bicep.
The muscles were taking turns
Twitching.
Little tiny twitches
To remind me that they were still there.

Yesterday I watched my mother
Struggle.
With a wheelchair almost bigger than her.
She is small but she is mighty.
It is not supposed to be
that the mother takes care
of the daughter
in this way.

Last night Adam took off my right sock.
I spent some time
looking at my big toe.
I still have a mark
from when they razor slipped
the last time I shaved my legs.

Last night I joined an online support group.
And I read some posts.
They were haunting
and inspirational.
They were uncomfortable
and political.
Words and photos
To remind me that I am part of this community.

This morning I dropped six things.
Within thirty minutes.
The time it takes to put my clothes on.
I dropped my phone
and my brace
and my Chapstick
and my bra
and my glasses
and my shirt.
I picked some of them up with a hanger.

Today I watched the blue jays
In my backyard.
Flying as a couple.
Together for life.
They are an impressive contrast
To the yellow and orange leaves
That stubbornly stick to the pear trees.

Today I couldn't get my brace on.
I got frustrated and threw it across the room.
Except I can't throw anymore.
So it landed three feet away
on the dog
who yelped
and ran away.
I called after her with apologies
and tears.
I never intend to hurt those I love.




Monday, December 5, 2016

Our history

It was January of 1991.  I was working sales for an educational video company.  It was a job I really didn't like, but it was my first job out of college, and I still wasn't sure what I wanted to be when I grew up.  I had tentative plans to quit my job in the early Spring and move to the Baltimore area with some college friends. I was in an on again / off again relationship with a guy who was feeling on again / off again about me.  
It was the time before the prevalence of the internet, therefore before online dating.  There were still classified dating ads in the newspaper, and friends were trying to set me up on old-fashioned blind dates. WPST was the local radio station everyone listened to at the time, and they were having a Valentines' Day contest.  If you wrote in a letter describing yourself, your likes and dislikes, they would set you up on a blind date on Valentines' Day.  My coworker, absolutely tired of hearing about my trials and tribulations with the on again / off again guy, told me she was writing a letter in for me. Why not? What do I have to lose?  Right before she sent in the letter she asked if there was anything that was really important to me, anything that I wanted in the letter.  Yes, I said.  I would prefer if my date was Jewish.
Fast forward two weeks before Valentines' Day.  My work phone rings.
"Hi. This is WPST.  We were calling to see if you were still interested in participating in the Valentine's Day blind date."
I grew flustered.  I had kind of forgotten about it.
"Yes.  I guess.  Sure.  Why not."
Fast forward again to the day before Valentines' Day.  My work phone rings again.  I was to go to the Radisson Hotel by exit 9 of the New Jersey Turnpike and check in at the WPST table. They would then introduce me to the man I was going to have dinner with in the hotel restaurant.
Okay, this was weird.
The next day I wore my favorite dress. It was brown and black herringbone, and fit perfectly.  Just the right amount of cleavage and it accentuated my waist.  I put on my lucky earrings and my favorite necklace.  Was I really making a big deal about this?  I guess I was.
After work I drove to my destination.  The only place to park was in the parking garage attached to the hotel.  I immediately knew this was going to be a problem because I never carried any money with me and this was way before you could pay for your parking with a credit card.  Did I even have a credit card at that age?  Once I got in to my parking spot I checked my wallet.  Just like I thought.  No cash. I would have to wing it.
I checked in at the WPST table, and made my way to the ladies room to check my make up.  There was woman standing next to me at the mirror.  Told her my saga about the parking garage.  I asked her to borrow five dollars.  She said "no".
Okay, this was going to be interesting.
I was introduced to this guy.  He was cute and kind of shy.  We sat down at a table and ordered drinks. I talked a lot.  I told him about my job, and how it really isn't what I want to do, and my plans to move to Baltimore, and where I grew up, and my family, my friends, where I went to college, and where I live. He told me about his Mom's 50th birthday the weekend before, and how his Dad had hired a monkey (chimp?) to do party tricks, and how his birthday was just the day before, how he went to Rutgers, and he ran his own business.  I remember getting up a few times to go to the ladies room and thinking I really don't have that much in common with this guy, but something about him was endearing.
We talked about how we got involved in this blind date.  I told him about my letter, and how it was written by a coworker.  He showed me a copy of his letter and it was set up like a resume.  I thought that was funny and very much unlike me.  After talking for a while we decided that maybe the reason they matched us up was because we both wanted to date someone Jewish.
Dinner was over.  He offered to walk me to my car. Sure. We walked through the parking garage and he confided in me that he had gotten there early to sit at the bar and have a beer and watch the women walk into the hotel.  He had been very nervous.  I confided to him that I had no money in my wallet to get my vehicle out of the parking garage, and could I borrow $5?  He agreed to the loan, but only if I would go out with him again.  I agreed.
We got to my vehicle, which was a red Toyota pick up truck.
"You drive a truck?" he asked.
"Yup."
And he began to laugh.  Not in a demeaning way, but in an appreciative way, like it was the perfect end to our night.  And I began to laugh too.
I took his $5, got my truck out of the parking garage, and drove home.
Within two or three days I had called my friends and told them I was not moving to Baltimore with them.  I had met a guy that I had a feeling was going to be "the" guy.  They thought I was crazy.  I began to think I was a little crazy too.
I dropped Mr. on again / off again.  This new guy and I dated.  We went to comedy shows and the movies.  I made him burnt meatballs and he ate them.  He went with me to see a high school play, and he invited me to his Uncle's house on a Sunday afternoon to meet his family.  I met his college and high school friends, and they became my friends.  He met my cousins and my friends, and they became his friends.  I sat and watched him play in tennis matches with his brother, and met his sister-in-law.  She introduced me to others as his girlfriend.
Within a year of our dating his niece was born and I bought her a stuffed animal.  She was tiny and beautiful and I began to think of her as my niece as well.
Soon there was a half empty closet just for me - we were living together.
Graduate school.
Working in his office.
Then an engagement ring given to me at Freddie's - a restaurant that had history and meaning to his family.
A wedding.
Teaching.
A house.
A daughter.
The loss of those we loved.
Another daughter.
Teaching part time.
More loss.
A son.
Teaching first grade
Loss.
Intermixed with memories and dogs and happiness and love.

Adam's mother once told me that our relationship was b'shert, which is a Hebrew (Yiddish) word that loosely means meant to be - predestined soulmate.  I believe her.












Sunday, December 4, 2016

Out of sorts OR sort of out of it.

I have been feeling out of sorts all weekend.  Like I am anticipating something.  Something unwanted. Like that feeling you have on Sunday night after a really great weekend, when you don't want to go to sleep, because you know then you have to wake up soon and start a five day work week. That feeling.

I haven't been sleeping well and I am crying at the drop of a hat. I keep having these half sleep / half wake dreams where I am lost in my high school, bumping into people I don't want to see.  Or last night's half dream where my brace keeps slipping off my leg and becomes a puddle of plastic that eventually evaporates.  I am finding that I am waking up with a grimace on my face. Not sleeping makes me cranky.  Being cranky makes me weepy.  Being weepy prevents me from sleeping.  And so on.

Last night when I was trying to fall asleep I began brainstorming blog ideas.  Then I began creating a food shopping list in my head.  Then I began creating a holiday shopping list. Then I began thinking about having the means to create food shopping lists and holiday shopping lists in my head is a blessing.  Then I began counting blessings.  Thinking about my blessings made me cry.  I think that is when I finally fell asleep.  That is pretty telling, huh?  My dog woke me up a few hours later, jumping off the bed, rattling his collar and tags. That was it for last night's sleep.

This morning I was up and out of bed early in order to have breakfast with some friends.  It was really nice to sit and talk about things that had nothing to do with ALS.  I ate a lot (that seems to be a theme for me), and relished the normalcy time.  I canceled plans to see my nephews.  I am not in the right state of mind to see them.  It's not them.  They are awesome.  I just don't want them to see me in this "out of sorts" way.

Now I am trying to stay awake for the rest of the day because if I don't nap maybe I will get to sleep early and feel more like myself tomorrow.  Maybe this "out of sorts" me is myself.  Maybe my feelings are out of sorts because my body is out of sorts.  Maybe I am out of sorts OR sort of out of it because I am not sleeping well.

I need to change my thinking.  Thinking about good things and blessings and the kindness of others makes me feel happy.  Not just happy like the "I'm smiling" happy, but the kind of happy that takes your breath away and makes your heart flutter.  I hope you all know at least one instance of that kind of happy.

Adam is always, ALWAYS, at the top of my blessings list.  I am amazed every day on how much he wants to care for me.  Me!  This man still loves me and still thinks I am sexy, even as my body is failing me. Sometimes the sad thoughts haunt him and we are sad together.  Together.  We are doing this together.  He is a true blessing.

Adam's love and patience.
Bracelets - showing up all over town.
Having lunch with Lisa.
Laughing really hard with Lisa.
Crying from laughing hard with Lisa.
A visit from Abby.
Abby taking care of my Dad.
My Dad feeling a bit better.
My Mom cooking for us.
My Mom's chicken soup.
My Mom making vegetable noodle soup for G.
Driving with my parents.
Dinner with the Curbishleys.
Richard's chocolate cake.
Hugs.
Love
Watching Ean swim.
Unexpected kindnesses.
Teachers at Ben Franklin Elementary School.
Learning about top secret meetings.
Laughing with Adam.
Hugging G and E.
Talking to Sarah.
Sarah's poetry.
Kathleen taking G out driving.
Texting with Danielle in order to get it all out.
Visit from Marian.
The big, black envelope.
Unforeseen generosity.
Cards in the mail.
Organizing the box.
Finding surprises when organizing the box.
Having people who love me do something that is emotionally difficult for me right now.
My stair glide (that will make my list every time!)
The golden leaves on the trees that are still holding on to Autumn.
Having faith that a good teacher is working with "my kids".
Wonder Woman stamps.
Looking through photographs (non-digital).
A box of Florida grapefruits and oranges.
Hershey kisses.
Chocolate turkeys.

I feel like this list could go on for a really long time.  That, in itself, is a blessing!
I also feel like my blog posts are starting to get a little redundant.  I might need to take a break.

Live to love. Love to live.






Saturday, December 3, 2016

What does ALS feel like to me?

Some friends (and even one stranger) have recently asked me what does it feel like to have ALS?  I thought that might be something that other people want to know.  So, here it goes
.
Before I start, I think you should know that this is what ALS feels like to me.  It might feel very different to others with ALS.

My legs feel heavy.  My right leg feels much heavier than my left leg.  My right foot has no more strength or muscle control so it just hangs there.  Therefore my toes kind of hang as well.  When my right foot is flat against the bed, my toes tend to curl under a bit.  Any time I need to walk I have to lift my right leg using my hip.  Otherwise I can catch my big toe and that can make me fall.  There are times even when I lift my right leg to walk, my big toe drags a bit.  My left foot is starting to drop but not nearly as significantly as my right foot.
My feet are always cold.  It has something to do with circulation and always being in a seated position.  It is one of the reasons I need to stretch out a bit during the day, so I am changing my position.  When I get undressed in the evening my feet are usually a blue-ish or purple-ish color.  I don't like to sleep with socks on because if I have to go to the bathroom, I might slip on the tile floor. Barefoot is safer.  I put the blanket over my feet and the weight of the blanket push my toes down on my right foot.  My heels tend to ache in the middle of the night, I think because of the pressure on my feet, so I turn to sleep on my right or left side.  Turning to my left is much easier than turning to my right.
My arms also feel heavy.  Not nearly as heavy as my legs.  I can't hold them above my head and using them for more than a few minutes to do anything tire them out.  I am finding that my elbow joints are a bit achy.  I no longer have the strength to write for more than a few minutes, and when I do write I do so very deliberately.  Typing is much easier because I can rest my wrists and just use my fingers, but even typing takes more energy than it used to.
Eating with a fork or spoon has become a bit more complicated.  The utensils are heavy to me and lifting them to my mouth takes more of an effort.  I noticed yesterday that I am bringing my face down to my food  - kind of meeting the fork halfway there.
I used a wide foam grip on my toothbrush.  Holding things full fist rather than like a pencil gives me easier movement.  Sometimes I use an electric toothbrush.
I am starting to develop what I call "drop finger".  When I go to grab a cup, for example, my pointer finger doesn't stretch out in the same way as my other fingers and gets caught in a bent position against the cup.  Again my right hand and fingers are weaker than my left.
As my body relaxes at night my muscles twitch.  It used to be just my leg muscles.  Now it is my arm muscles, and some muscles that I wasn't even conscious of, like my neck muscles.  A few weeks ago my neck was really tired at the end of the day.  That seems to have subsided, probably because I am making sure to lay down a bit every day.
My speech is slower.  Like it takes more energy for my tongue to help me make all those sounds.  It is kind of slurry when I have been talking a lot. People who see me all the time might not notice it. People who go long periods of time without talking to me might.   I definitely slur my words after one glass of wine!

I didn't write this for anyone to feel sorry for me.  It is really just for information.  Feel free to ask questions.  Its all good.

Thursday, December 1, 2016

Today's call to the flower shop

Today I put in a call to a flower shop to order a dear friend some flowers.

Me:  Hi, I would like to order some flowers to be delivered.

Flower shop:  Sure, please hold on for a moment.

On hold.

On hold.

On hold(for about 5 minutes - a real 5 minutes)

FS:  How can I help you.

Me: Hi, I would like to order some flowers to be delivered.

FS: Sure, please hold.

Me:  Wait, I already did that.

FS: What?

Me:  Held.

FS:  Excuse me?

Me:  I was already put on hold for kind of a long time.

FS: Oh.  Ok.  Sorry.  Please hold.

Me:  Nope.  Sorry.  I think I will call someone else.  Have a great day. (click)

(Calling second flower shop)

Me: Hi.  I would like to order some flowers to be delivered.

FS2: Sure.  Can I have your name please?

Me: Sure.  Deb Dauer.  D as in David, a, u, e, r.

FS2: Bev...

Me:  No, Deb.  D, e, b. Short for Debbie.

FS2: Betty?

Me:  No, Deb.  D like dog.  E like elephant.  B like boy.

FS2:  Oh, Deb! Got it.  And your last name?

Me: D, a, u, e, r.

FS2: D, a - what was the rest?

Me: u, e, r.  Its like Bauer but with a D in the front.

FS2:  Ok. B, D, A, U, E, R.

Me: No B.  Just D, A, U, E, R.

FS2:  Ok.  Deb Dauer.  Five letters in your last name.

Me:  Yup.  You got it

**(I must add at this point that I am still being very kind and patient with this nice lady, but I began looking around my house for the hidden camera.)

Finally gave her all the other information she needed.  

FS2: Ok.  Let me read it all back to you.

Me:  Ok, great!

FS2:  Your name is Bev Bauer.

Me:  (spitting out my iced tea)  Ok, no...

I can't make this stuff up.  But after all was said and done this very nice lady and I had a good laugh.












Wednesday, November 30, 2016

Laughing!

 
Today was a really great day!  Fun?  Yup.  Were there moments of deep sadness?  Yup.  But all around a really good day.

Today I saw Liz.  She reads my blog and she is going to be absolutely mortified that I am writing about her.  Sorry Liz (but not really).

Liz and I met through Adam.  She is married to a man whom Adam has known since his Ewing days (who or whom?). We connected upon our first meeting. We got married within a year of each other. We had our kids at about the same time.  We spent a lot of time together when our babies were little. And then I went back to work full time, and we just kind of went our separate ways.  No fault, just did.  Such is life sometimes, but over the years I have thought of Liz.  A lot.  Every time I saw this sign in gift shop, I thought of Liz.
Image result for good friends are like stars

Then I got diagnosed with ALS (the rotten, f*#kin' asshat) and I thought it is of the utmost importance for me to see and spend time with people I love.  I thought of all the great times Adam and I had when we were first married, and our kids were little with a few of his Ewing/college friends. Jen (an angel) offered to organize a dinner.  We couldn't get in touch with Liz by email or social media. So I did it the old fashioned way, via telephone call. I called Liz.  Soon after after the election.  When I was already feeling rocked with emotion.  When I was feeling low and defeated. I picked up the phone and called Liz.  As soon as I heard her voice, it was like the years melted away.  I told her my "news", we cried on the phone, she canceled her plans for that Sunday, and we ventured to Jen's house. For food, and laughter, and memories, and crying - deep, heart wrenching sobbing.  But it was good. Really good.

So today, Liz came for lunch. We picked up where we left off when Sarah and her daughter, Olivia, were eight.  No time has passed.  We talked for hours, ate more delicious food, and talked about my ALS, but also our kids, and memories, and our parents, and all the things that have impact on your lives when you are in your late 40s.  It was blissful!  And yes, we cried a bit.  But honestly we would have done that with or without the ALS so all is good.  I really treasured my time with her today and I wanted to let the world know (or at least my blog world).

A bit later in the day I went to see my therapist.  Not a PT, but my talk therapist.  I have been with her a long time.  I would recommend everyone have a therapist.  A good one.  But I digress.
We spoke about all the positive things going on in my life - the blog, my children's book writing, my kids, Adam, my community, Robbinsville, Sharon School, the bracelet fundraiser.  And some sad stuff too, but most of it was good.  Really good.  And before I knew it an hour had gone by.  Wow!  I am a person who lives with ALS and spoke to my therapist for an hour about all the positive things in my life.  That is really awesome.  I'm so blessed.

I came home and went straight to the bathroom (what else is new).  As I sat on the toilet, the edge of my sweater got stuck under my thigh.  I gave it a pull and proceeded to punch myself in the nose.  I began to laugh hysterically, on the toilet, in the bathroom, by myself.  Then I put my hand to my nose to see if it was bleeding, and it was just a little, which made my laugh even harder!  When I finally calmed down enough to finish up and come out of the bathroom, I realized that Adam was sitting close enough to hear me laughing in the bathroom to myself.  I told him what happened and he giggled.  Now that I am thinking about it, it is quite funny that Adam did not find it necessary to check on me as I was laughing in the bathroom.  It must be an ordinary occurrence.

We sat down to a delicious dinner made by a dear friend, Ean talking about swim and his grades, Gillian talking about her friends and school.  We sat at the table longer than usual and enjoyed each other's company.  Then Gillian climbed into my lap and Adam took a picture of us doing this:



And we laughed really hard.  My cheeks hurt from all the laughter and happiness I felt today.  The first month or so after my diagnosis, I focused a lot on preparing for the bad things that are/were going to happen to me.  Now I feel like I am living.  Just living.  Living comes with good, bad, and ugly.  But I am no longer focused on the icky stuff all the time.  Liz had this little pearl of wisdom today that I am sure I will get wrong.  It went something like this...No good can come from borrowing worry from the future.



Monday, November 28, 2016

My 2nd post for today

I know I already posted today but it is 11:50 pm and I am wide awake.  This is a really bad time of night for me. Quiet, no distractions,  my brain working overtime.

Random ALS thoughts:
What will it feel like when I start to lose my respiratory function?  (I think of this one a lot)
Will my feet ever feel warm again?
I hate that I slouch.
I'm taking so many meds. Are they really helping?
What happens when I can't type?  Can't talk? Will those things happen?
This must be hell on my parents (now I'm crying).
I wonder how many women in the world have ALS.
How will I take meds when I can't swallow?
Does it hurt to die?

Random non-ALS thoughts:
Will I be able to see my school friends tomorrow without bawling my eyes out?
How do I show Darlene my appreciation for everything she has done for me this year?
I feel so bad for yelling at Adam.
I should make G some hard boiled eggs.
I have to make a hard phone call tomorrow afternoon.
E is swimming in his first meet tomorrow!
Maybe I should find a religious person to talk to.  I have many questions.
I wonder if I can eat citrus fruit.
It's been great to reconnect with some old friends.
I hope to have good dreams tonight.
How many times did I let the dogs out today?
Our upstairs TV is annoying.
I wonder what take-aways Carol Clark will have from this blog post.

I need to sleep.

Do you have your bases covered?

Before we go any further, please watch this:

Go ahead.  I'll wait.  It's okay.  Take your time.  Watch it a few times if you want to.

https://www.youtube.com/watch?v=iat3xqq24TI

Okay, did you love it?!  I LOVED it!  I thought it was brilliant and so relevant.
It was sent to me by my daugher, Sarah.  She had just spent 6 1/2 hours as a passenger in the car of her friends who were driving back to Mount Holyoke.  A trip that should have taken less than four hours.  Lots and lots of traffic.  When she got back to school, she was vegging out, came about this video and sent it to me.  Upon watching it I sent her a response:

Me: Love that!

Sarah: reminded me of how you see the world

Me: (in between my crying tears of joy and the utmost appreciation) Oh!!!! I love you for saying that! Thank you.

You see, Sarah sent me this video and said those things just as I was falling into a very mopey, self pity moment.  I felt ugly and kind of gross.  Some of the things going on with my body are just plain gross.  The ALS is just a f#@ker and it was really pissing me off.  I had just finished telling Adam how I am sad and feeling sorry for myself.  And then, I watched this video.

It completely changed my perspective. I have a family and friends who love me and I love back.  I have a roof over my head, food on my table, and good health care.  Yes, I have ALS but there are all these people out there who are fighting to eliminate/cure this disease.  I have an ALS team who are helping me and my family.

I have my bases covered.





Saturday, November 26, 2016

This and that

It was a fabulous weekend.  Actually a fabulous week.  I love having all my kids under one roof, and listening to the three of them bicker and interact the way they typically do. I heard a lot more laughing than I did arguing and that pleases me to no end.  The older they get the more they get along.  Its comforting.
Thanksgiving dinner at my brother-in-law and sister-in-law's house.  Fri-giving here at our house. Family events filled with immediate and extended family, all related to us somehow, all getting along and loving each other and laughing.  The bellowing of deep teenage boy voices was something new. All of them have grown up so much.  Obviously my physical perspective has changed, but I found myself looking up a lot.  Every one is so tall!  We ate such delicious food on Thanksgiving and again on Friday.  It was important for me to have a family gathering at our home this year and the people who love me made Fri-giving happen.
Tonight my three kids, along with some of their friends, will go off to the movies.  I love that Ean is choosing to spend his birthday night with his sisters.  Though there are four years between Sarah and Ean, somehow that gap is closing and they have some similar friends.  It is lovely.  My kids have each other.  They will be okay.
Tomorrow morning Sarah heads back to Massachusetts.  I know she will be back for an extended stay in three weeks, but is is strange that I am already missing her?  I love listening to her stories about her new friends, her classes, and her life experiences.  On Friday I tried to spend a little time listening to what she was telling others about her college experience, and I was pleased to see and hear that she is really happy.  Sometimes I don't know if she is just telling me what I want to hear.  I guess every parent might feel that way at some point.

I wanted to be able to set up for Fri-giving on my own.  I wanted to take out paper products, and put things away, and set up by myself, like I used to.  I always got so much joy from setting up for a family event.  This time, I really needed the kids and Adam to help.  No one complained, and everyone was helpful.  I don't mean to sound unappreciative.  I am.  Really.

Here is what got me.
You know how you have a thought in your head, and your body acts upon that thought.

Me thinking before ALS: I want to put out the fancy napkins.
Me acting on that thought before ALS:  I walk to bottom kitchen drawer and take out fancy napkins.

Me thinking during ALS: I want to put out the fancy napkins.
Me acting on that thought during ALS: Gillian can you please take out the fancy napkins.  In the bottom drawer.  Yes, in that drawer.  In the back.  Probably the whole package.  Put them in the napkin holder.  No, the one on the dining room table.

Almost every single thing I want to do requires me telling someone, or give a direction.

This morning I fell. I haven't fallen in a long time. I tried to get out of bed too quickly and rolled right off the bed.  Crashed my head into my nightstand and landed on my side.  I called out for help and Sarah came running.  I HATE when my kids see me in such a vulnerable state.  Unfortunately they are getting used to it. Sarah was unable to get me up, so she went and got Adam.  He is so sweet.  Came in saying "honey bunny what happened?"  No panic, just reassurance.  However, he could not get me up.  So Sarah and Adam worked together and got me up.  And it was difficult!  I have no leg strength so when they lifted me up I could not contribute to the process.  My feet do not hold any traction.
When they finally got me seated in my bed, I immediately could see the look of concern on Adam's face, and then he said pretty much what I was thinking. "This is a problem if I can't get you up by myself."  It upsets me so much when I see him defeated.  He has been working so hard to be my rock, but I know that this is taking its toll on him.  He wouldn't be human if it didn't.

Later in the day as we were discussing the falling incident with my Mom, we were brainstorming some ways to help with the process of getting me off the floor if and when something like this happens again.  As we were brainstorming, I realized that there is no reason we have to reinvent the wheel here.  I will call my social worker at the ALS Association on Monday and see what others have done in this situation.  I will see if they can send a PT to my home to help assess the situation.  There are answers out there, we just have to find them.  We are going to problem solve.

I had a great week.  But at this point in my life everything comes with challenges.  I am working on seeing these challenges as accomplishments, as I talked about in my last blog post.  But that won't always be the case.  Trying to take it easy on myself.

Live to love.  Love to live.





Tuesday, November 22, 2016

Living at Peace

I have been at peace the last few days.

Maybe it is because Sarah is home, and all my ducklings are under one roof.
Maybe because I will spend a few days with extended family.
Maybe because the stair glide was installed and it is one less thing I have to think about.
Maybe because I solved the irritated skin issue on my own.
Maybe because I have been writing about two hours every day.
Maybe because I finished the rough copy of a children's book I have been working on. The idea has been in my head almost ten years, and to finally have it written is an accomplishment.

I have been thinking about the word accomplishment.  It is really such a relative term.  My memories on Facebook (and otherwise) often tell me that I used to feel accomplished by doing six loads of laundry, my report card comments, making a home cooked meal, and cleaning the house - all in one day!  Don't get me wrong, that is definitely an accomplishment!  However my perspective and abilities have changed.  Now I feel accomplished if I can get my sock on by myself in the morning, or pick up my dirty laundry and throw it into the laundry basket (or even get it close!).  I am not sulking or complaining about this. Really, I am not.  I think this is partly why I feel at peace.  These things used to fall into the category of "things I have trouble doing".  Now they fall into the category of "small accomplishments".  I feel good when I can do these small things by myself.  Its funny how just a little tweak of my thought process can change my whole outlook.

So here is a list of some of my little accomplishments over the past few days:
Loving on my kids and Adam.
Taking a shower.
Getting dressed.
Trying to help Adam with an important phone call.
Using the stair glide.
Filling out an application for assistance by hand.
Writing every day.
Doing something kind for our server at Cheesecake Factory yesterday.
Telling my nephew I love him.
Laughing with my kids and Adam.
Apologizing to Sarah for losing my patience.
Slicing cheddar cheese for my lunch.
Throwing away the dead food in my fridge.
Letting go of some sadness over a lost relationship.
Writing a few thank you notes by hand.
Figuring out how to do a few things with one hand that usually need two.

On another note (but maybe the same), I have received such kind texts and messages from people! Some of these people I haven't spoken to in very long time, but the kind words and expressions of concern have been so thoughtful.  Some have been suggestions of continued medical testing, how to get on drug trials, or just the sharing of beautiful memories and love.  I really appreciate them all! Relationships take time, and they are an accomplishment in themselves.  I guess we really don't look at them this way.  I think I used to take some of my relationships for granted, putting other things like laundry and cleaning before connecting and loving.  Relationships - family, children, friendships, lovers, spouses, community.

Maybe there is a reason I have ALS.  I mean it sucks and I would really prefer NOT to have it, but maybe it is part of my grand plan.  (do I believe in a grand plan?) Maybe in this time of anger and divisiveness, me having ALS is a way to bring people together and talk about love, kindness, and compassion.

**I just reread the last few sentences - boy am I full of myself!  Eh, keeping it there anyway.**

Last night I had a dream that I think was about my funeral.  I know, kind of morbid.  I say "I think", because the dream was silent, and there wasn't anything there that was identifying it as my funeral.  I just kind of knew.  I could see everything - a big room, lots of chairs, filled with all these people I know, some were laughing, some had tears in their eyes, some were holding hands and happily hugging the person next to them.  It really wasn't sad, but just comforting and peaceful.  I didn't wake up scared or upset or crying.  It was actually kind of nice.  It felt like a subdued party rather than a funeral.  I like bringing people together, so maybe that was an indication of my final accomplishment.









Sunday, November 20, 2016

Grandma Bea

I have been thinking about my Grandma Bea lately.
Sometimes when I am getting dressed in the morning, and I am pulling myself into a standing position from the edge of the bed with the assistance of my walker, I catch a glimpse of myself in Adam's mirrored closet door.  And I see Grandma Bea.  I see her in my stance -the way she stood with her walker towards the end of her life. I see her walk in my walk - the way she walked slowly and deliberately with her walker, making sure not to fall or misstep.  When I catch a glimpse of her in my current physical self, I am reminded of all the other things that she instilled in me.
Grandma Bea was not my biological grandmother.  She married my Grandpa Sol (my father's father) soon after I was born.  I never knew another grandmother, so the fact that we were not biologically connected really did not make a difference to me at all.  It was not that I was unaware of that fact.  In fact I was very much aware.  I was named for my deceased grandmother (Deborah/Debbie), and often heard wonderful stories from my aunts, parents, and cousins about how beloved she was.  But for me, my grandma was Grandma Bea.
Grandma Bea did not have any children of her own.  She had a sister who had two sons and they both married and had children of their own.  Her nieces and nephews kind of became her children and grandchildren.  And us.  Me, my brother Mike, and my cousins Marian, Alice, and Deb (yes she too was named after Grandma Deborah/Debbie).  We became her grandchildren and she thought of us as such.
I don't remember Grandma Bea being the stereo typical grandmother on most occasions.  She was very tall, and when I was very young had this jet black beehive hairdo.  Later on it was replaced by her natural gray hair.  Either way she was always concerned that her hair looked good. It always seemed that she and my grandfather loved each other, but as a child I always had this feeling that my grandfather might have married her because he was lonely after Grandma Debbie died.  Maybe that was from reading too many fairy tales.
I was told when I was older that our family was less religious before Grandma Bea came into our lives.  For example, we celebrated together for Passover, but didn't have a seder and read from the Hagaddah until Grandma Bea came into our lives.  Or we might have eaten big family meals for Rosh Hashanah, but until Grandma Bea came around we never went to synagogue.
I think of Grandma Bea on every single Jewish holiday and every time I enter a synagogue. The reason I call it a synagogue is because that is what she grew up calling it.  Even when my grandfather was still alive, she would always stay at our house during the Jewish holidays.  From our house in Roosevelt she could walk to synagogue and she did not drive on the high holidays.  It was our tradition that she and I would go earlier than the rest of our family.  We would hold hands and walk up the hill on Homestead Lane and she would tell me stories about her father and mother, and going to synagogue with her family.  Sometimes the stories would be the same as the ones she told me the following year, but I didn't care.  We would walk into synagogue and wish the regulars a "L'shanah Tovah".  Grandma would check to make sure her bobby pin was holding her head covering in place. We would pick up our prayer books (always the red book, never the gray) and make our way to the right side of the seating area, where the women sat.  Ours was an orthodox synagogue and the men and women sat separately.  This always made me feel uncomfortable, but Grandma Bea seemed at home in this environment as this is how she grew up.
Then we would pray.  We would find our page number from someone sitting close by.  Grandma would sing the familiar prayers in Hebrew without looking at the words in her prayer book.  They were ingrained in her being.  I would read along the English translation.  Sometimes Grandma would point to where we were in the Hebrew, to encourage me to try to follow along. When I was younger, I would pretend to sing along in the Hebrew, belting out a familiar word here or there.  As I got older, and the tunes became more familiar, Grandma and I would smile to each other and sing together.
My favorite synagogue memory with Grandma Bea is her silly faces.  We would be sitting together in synagogue and as many young kids do, I would begin to get antsy.  Grandma would turn to me and make a silly face.  Sometimes she would stick out her tongue or cross her eyes.  This would put me into fits of laughter.  As others from our congregation would turn around to see what the ruckus was, she would sternly look at me, with the slightest grin on her face, and say "shh".  This would happen a few times during the service and somehow it kept me in synagogue longer.
When I was about eight years old, as we were leaving synagogue, I introduced Grandma Bea to a Roosevelt neighbor.  She said, "oh, I can tell she is your Grandma, you look so much alike." Somehow Grandma and I held it together until we were walking home and then we got hysterical.  It then became the family joke that we looked alike.  We always joked about it, but somehow it made me feel proud that someone thought I was like her.
When I was twelve (thirteen?) my grandfather died of a massive heart attack.  I remember his funeral and being at my grandparents house for at least a part of all eight days of shiva.  I remember that his passing coincided with Passover.  I remember my father trying to encourage Grandma Bea to eat, and she slowly peeled a hard boiled egg at their big kitchen table.  I remember all the aunts and uncles and cousins walking up the sidewalk to pay their respects.  I remember sitting in the castle chair in their living room crying.  I remember wondering if the death of my grandfather, who I loved dearly, would mean that Grandma Bea would no longer be my grandmother.  Nothing could be further from the truth.
Grandma Bea continued to be my grandmother.  She continued to come stay with us for the high holidays and for as long as she could, walked with me to synagogue up the big hill on Homestead Lane.  She continued to make silly faces, and pray without looking at the words in her prayer book. She continued to love us because we were her grandchildren.
Equally as important is the fact that my father, mother, and Aunt Gail continued to care for her because we were her grandchildren.  She wasn't an easy person as she got older and her body started to give out on her.  Sometimes she said unkind things, and made life a little complicated for others. But no one gave up on her, and I was in the room with her when she passed away.  Ean's middle name is Brett in her honor.
When Grandma Bea moved into a nursing home and it came time to clean out the home that she shared with my grandfather in order to sell it, I remember one of us finding something very telling in my grandfather's heavy dresser drawer.  It was a pack of love notes- little square love notes.  The were new and not written in.  I imagined that my grandfather regularly filled one out and left it on my grandmother's pillow, or by her cup of morning coffee.  I felt ashamed for that impression I had as a young child that my grandfather married Grandma Bea just because he was lonely.  I wanted to go back in time and hug both of my grandparents and tell them how important they were to me.
A few days after cleaning out the house I went to Shabbat services at a different local synagogue.  The prayers were now familiar enough to me to be able to look up from my prayer book as I prayed and sang along.  I looked over at my friend's sister and her Nanny.  They were not blood related.  It didn't matter.  It doesn't matter.
Live to love.  Love to live.