Tuesday, January 31, 2017

My morning in three acts

ACT ONE: THE TEXT

Early this morning I was texting an old acquaintance. It had been almost a year since we had been in touch and I had to tell her about my diagnosis. Our texting went something like this:

Me: Hi! It's been a long time! How are you?!

Old Acquaintance: Wow! How have you been? What's going on?

Me: It's been a tough year. In June I had my colon removed and in Oct I was diagnosed with ASL.

OA: ASL?

Me: Yup.

OA: Are you telling me you are deaf?

Me: No, I have ASL. I don't think it causes one to become deaf.

OA: I'm confused...

Me: I have ASL - Lou Gehrigs Disease.

OA: Oh!!!!!!!!!!!!  LOLOL!!!!!!!!

Me: I am not sure why we are laughing...  :\

OA: No, I am not laughing at you...I think you mean ALS NOT ASL. ASL IS AMERICAN SIGN LANGUAGE!

(At that point I went back and reread the texts and had a really good laugh)

ACT TWO: THE BANANA

I wanted a banana for breakfast. I don't eat a lot of them because they tend to...well, you know...but this morning I looked over at them on our kitchen counter and they were the perfect ripeness and looked so good. So, today, I thought, I will eat a banana.

There were three bananas left in the bunch and just a tad bit out of my reach. I stretched as far as I could, got a hold of one of the three bananas, and pulled. The one banana ripped itself away from the others. The two that I didn't have a hold on went ricocheting across the kitchen, landing next to the garbage can.

I placed my desired one banana on the counter, and turned my wheelchair around to retrieve the other two. I leaned all the way over, reaching for the ground and the two bananas. Again, I got a hold of one of them, and as before, it pulled away from its partner. So now I have two bananas on the counter, and one more to pick up. By this time the banana fiasco had gotten the attention of my dogs, who came over to sniff and lick the remaining banana on the floor. I discussed with them how it would be REALLY convenient right now for them to have opposable thumbs and/or the ability to understand the command "fetch the banana". They kind of just looked at me like I was crazy, and went back to sleep.

After much shifting of the chair and reaching for the ground, I was finally able to get the third banana on the counter. I chose the best of the three, and went to open it. Well, my own thumbs (and fingers) are not strong enough to break open a banana. By this time my mouth is watering. I really want this banana. I crave this banana. I will eat this banana if it is the last thing I do! I take out a butter knife and attempt to cut into the top of the banana. Not strong enough. I look around the kitchen for a tool to help me break the banana. All the steak knives are in the sink or dishwasher, the bread knife is too risky. Scissors? Keys? A fork? I went for the scissors, and cut open the banana.

And for a moment I sat back and just looked at my open, perfectly ripe, yellow banana. It was worth all the effort.

ACT THREE: ELIJAH

I had a doctor appointment this morning. And as with most appointments these days, my parents took me. In my bright pink wheelchair, my Mom and I ventured up the elevator, down the long hall, and into the waiting room where we were greeted by the cutest little boy. I later learned his name is Elijah. He had sparkly brown eyes, a big, beautiful smile, and dark curly hair. He came up to us as soon as we rolled through the door. We stopped and said "hi", and he smiled. You could tell he had a keen interest in the wheelchair, and the person sitting in it who was basically eye level with him. I locked the chair and he reached for the wheels. He giggled. "Pretty cool" I said and he looked at me with such joy and happiness. He was checking it all out - me, the chair, the wheels, the color. Our interaction was only a few minutes before he and his parents were called in to see the doctor. Yet, Elijah's smile and joy, his interest and exploring, were a perfect way to end my morning. Thanks Elijah.



Sunday, January 29, 2017

Strength

I no longer have the strength to
open water bottles
or the packages of my new contact lenses
or bags of chocolates
or chips.

I continue to have strength
to teach teachers
and encourage others
and apologize to friends.

I no longer have the strength to
put on my socks
or cut meat
or talk for hours on end.

I continue to have strength
to kiss my daughter goodnight
and scratch my husband's back
and hold and love on my friend's babies.

I no longer have the strength to
pull down tight pants
or take care of some feminine needs
or wiggle my toes.

I continue to have strength
to voice my concerns
and email my senators
and protect the rights of others.

I no longer have the strength
to turn over in bed
or bake chocolate chip cookies
or make Bubbe brisket.

I continue to have strength
to wash my hands
and sit under the shower
and run the soapy washcloth over my face.

I no longer have the strength
to open pill bottles
or make some decisions
or argue with those I love.

I continue to have strength
to hope
and live
and love
and laugh
and cry.

Friday, January 27, 2017

Calm


The wind was blowing hard yesterday. I was listening to it from my warm home, snuggled on my cozy chair, with the dog and a blanket on my lap. Yesterday I was thankful that I didn't have to go outside, but I did wonder if the first graders had recess, and I felt bad for my friends that had recess duty. 

The wind blew so hard yesterday that our ping pong table fell over, but I was grateful that it fell away from the house and not into our sliding glass doors. I heard it fall and yelled from the dining room to the den, where Gillian was feverishly studying for a test that she was determined to do well on. She saw it fall and reassured me that everything was okay.

The wind was blowing so hard yesterday that our trees were bending over but not snapping. I am grateful that Adam recently had them trimmed. Our yard would have been covered in branches had he not. 

The wind blew hard yesterday. When the dogs went into the backyard to do their thing they came back quickly. Jackson shivering. Sonky pushing her face against the glass, trying to get in even before I opened the door. Leaving funny nose shaped smudges on the door. I am thankful I can still open the door just enough for the dogs to get in and out.

While the wind was blowing yesterday, I watched it dance across the front yard through the living room windows. It was pushing the left over leaves around the yard and across the street. The telephone wires were bouncing up and down, and the squirrels were holding on to them for dear life. The cars were speeding by and I saw a plastic bag attach itself to someone's windshield.

Today the outside looks calm and cold. The dogs still rushed back to come in, shivering, their fur feeling cold. They have taken their places for the rest of the morning. Jackson sleeping on the top of the couch facing the window, just in case he might miss something to bark at. Like a jogger, a biker, the UPS man, or G-d forbid, someone walking their dog. Sonky has retired to her crate. We positioned it by the living room window so she can be a look out as well. She doesn't care nearly as much as Jackson about what is going on in the outside world. And I have positioned myself at the computer for a few hours, The computer gives me a window to the outside world, but also a means for letting people see in.

Today the outside is calm. The birds are scampering to eat the left over seeds that had fallen from the suet block the squirrels tore apart. The squirrels are taking a chance to climb to the ends of the pear tree branches to eat and store the last of the tiny pears.  The sky, the road, my back fence, and even my muddy back yard are all the same color - that gray that everything turns before a big snow storm. The sun is trying to peek out, and the squirrel stops what she is doing and looks up, almost as surprised as I am. 

Today the outside seems calm. I feel calm inside as well. I will see some good friends today. Adam and I made a big decision about a van, and that will give me a little more independence. My kids are happy. I am going to ignore the ugliness in the world for a couple of days in order to hold onto this calm. I will find good in everything I can. 

Live to Love. Love to Live.

Wednesday, January 25, 2017

Lesson plan

I have been feeling a bit "woe is me". I wish I could pick a mood, a state of being, and just be that way. But my moods fluctuate between "I am going to be the person who beats ALS" to "Life is over". Today I am somewhere near "I am redefining myself with the abilities I have now".

In a very awful "woe is me" moment, in between texting a few friends, crying very hard, and wiping my snotty nose on my sleeve because I couldn't get to the tissues, I posted my feelings to one of my online support groups. This group happens to be all women. In short, I posted about feeling sad, like I am losing myself, and it just sucks. Many women responded - these women are wise and can empathize. Part of one woman's response was this:

I was reminded maybe the lessons that are learned from this is not for us but for others.

I have been sitting on these words for almost two days. There are many lessons one can learn for themselves from having and living with and handling a disease like ALS on a day to day basis. And I am learning them. Patience with myself. Appreciating the small moments. Always taking advantage of opportunities to tell others you love them. Just to name a few. I am learning these lessons hard and fast. But what if my support group comrade is right. Maybe the lessons that are learned from me living with ALS are not for me at all, but for the people around me. Family. Friends. Strangers, even. This would surely fall into my philosophy that this disease is one HUGE teachable moment.

So, I began breaking this down into smaller sections. Let's take strangers, for example. When I am out and about I come across strangers all the time. We all do. Last night, after running an errand with Adam, we stopped for a bite to eat (surprise, surprise). It was raining, hailing, and sleeting. Adam was pushing the wheelchair, and I was holding the big black umbrella the best I could over the two of us. We were a sight, I am sure!  As we made our way up to the first door, a man came running up to the second door from inside the restaurant to open it for us. At first I thought he worked there. He didn't. And he wasn't even leaving. He was just a guy, watching us struggle, wanting to help. When we made our way in, I noticed he moseyed on back to his table as well. What a cool guy!

The restaurant was pretty empty. But I thought about what if there was a child sitting in the restaurant watching that interchange. What a lesson they would have learned from this teacher - this kind-hearted gentleman - and me, his co-teacher! 

The lesson plan for this interaction might go something like this:

Objective: SWBAT (students will be able to) have compassion for the disabled by helping them without fear.

To: Teacher goes completely out of his way to help a wheelchair bound person and their caregiver get in out of the rain, Student observes how to do this,

With: Teacher with the student run to help a wheelchair bound person who is struggling with a heavy retail door.

By: Student (by themselves) helps a wheelchair bound person open a public bathroom door.

My Aunt Gail contracted polio as a young child. She had been in a leg brace throughout her childhood and as a young adult. Now she uses a wheelchair to get around. I remember her telling me that she always encouraged children to look at her and ask questions. She wanted to be someone who was approachable, not someone that kids would be afraid of. She would come one day a year to my classroom, and read my first graders a book, and answer questions about her wheelchair, or why she was in it. It was a great lesson. I think about Aunt Gail's outlook on inquiry all the time when I am out and about. 

Monday, January 23, 2017

Wonder

The monsters come as I am trying to go to sleep.
Keep me awake
Thinking about what could be
What if
Why
Why not
How long
How come

I gently place my hand on Adam's side
Not to wake him
But to feel the rhythm of his breathing
To focus on something other than my thoughts

I bury my hand in Jackson's fur
Feel the warmth
And the heartbeat
calmer and slower than mine

I wonder about lengths of time
And shallowness of breath
And use of limbs
And lungs
And bipaps
And ventilators

I smile at last night's attempt at spaghetti
The strands slipping off the fork
As I slowly
And awkwardly
Lift it to my mouth
The sauce hitting my chin
Feeling the two or three pieces
Slip down my throat

I wonder about
the safety of my children
in this unsafe world
Slowly
Yet quickly
becoming something that I don't recognize

I question who
will protect them
when I am no longer able

I question where
will they go for the Jewish holidays

I question will I know
how it all ends up
after I am no longer here

I turn over
As best as I can
awkwardly press some of my body
against Adam
to feel his warmth
and his breathing
and the comfort
of having him here


Sunday, January 22, 2017

Sigh...

I finally got to a ALS in person support group yesterday. I went to the PALS group and Marian went to the CALS group (caregiver). We both learned a lot. I was a bit nervous when I got there. I was a bit early, so for the first ten minutes or so, it was just "Tom"* and I sitting in the room. He was so very kind and reassured me that I had nothing to be nervous about, that all the people that were coming were good people, and I would be okay.  Tom let me cry a bit. That helped. And he was right. The group was a diverse group of people with ALS. We all have this awful disease in common, yet how the disease exhibited itself in our bodies is as different as we are.
I listened and shared. I laughed and cried. I learned and decided I will go back. Initially I felt it wasn't as emotionally exhausting as I thought it would be. But after I got home and settled down, I realized
how tired I was, and how much information there was to process. Some of it was technical information, and some of it was emotional. It was reassuring to look into the eyes of other PALS who expressed the same emotions as I think about and express every day.

Today I'm having one of those days where I seem to be in a fog. I am unable or unwilling to make decisions - what do I want to wear, where do I want to go, what do I want to eat. I feel like everything that is happening is sort of happening outside of me. I can't focus and I don't want to talk about anything too serious.  I slept fitfully, and stayed in bed until late in the morning. I feel weak and I am having some bladder issues, which piss me off (yes, I know) more than anything else that I am having to deal with. I have a very long list of things to talk about with my doctor. I go in a few weeks.

Live to Love. Love to Live.

*Not his real name


Friday, January 20, 2017

Aunt Liz


When I was cleaning out a box of "stuff" on my dresser a few weeks back, I found a bag of Aunt Liz' jewelry. I think the original intent was to take this bag of assorted mismatched earrings, necklaces, and charms to see if they were gold or anything of monetary value. In the hubbub of having a full time job, three kids, a husband, two dogs, and a home, the bag of Aunt Liz' jewelry got pushed by the wayside, into the box of "stuff".
Aunt Liz was my Great Aunt, and she was a GREAT Aunt. The sister of my Grandpa Sol, my father and Aunt Gail's Aunt. and in turn my Great Aunt. However, she was more like a Grandmother to her five grand nieces and nephew. She was briefly married before I was born, but the man turned out to be a no good kind of guy, so the marriage ended. She had a boyfriend named Harry for a while, though I must have been pretty young when they dated because I don't remember him. After Harry, she dated a man named Nick who used to come around when we visited. He liked to bet on the horses, so we would watch the horse races on television, and if the horse I picked won, Nick would give me a quarter.
Aunt Liz lived in a small, one bedroom, rent controlled apartment in Astoria, Queens, with her mother, my Great Grandmother, my Nauna. She worked as a seamstress in a factory and was a member of the International Ladies Garment Workers Union. Though my own mother knows how to sew, I remember that whenever Aunt Liz came to our house we would have skirts to hem, teddy bears to mend, and pants to take in. She never minded. She was a giver.
We would drive into Queens to visit, take the elevator to the fourth floor, and walk down to the very end of the hallway to their apartment. Somehow she always knew we were approaching, and the door would unlock and open, and there Aunt Liz would be to take you into her warm embrace. She gave great hugs.
Her apartment was often warm - almost overheated - but always smelled like a home cooked meal. Once you entered the apartment, in her chair, in the corner of the living room, sat my Nauna.
When I think about her, I always remember her sitting in that chair, in a sky blue house dress, gray hair, glasses, and clunky, open-toed shoes. She was a big woman - not heavy, but big boned in the true sense of the word. On the little table next to her chair sat a candy dish with wrapped sticky sesame or Nips or other assorted sucking candies. She would hug me big, like Aunt Liz, say something that I could only one-third understand, and then always hand me a candy. English was not my Nauna's native language, so when she spoke to us, it was partly Spanish, partly Yiddish, and the rest English. Most of the time Aunt Liz had to do some translating between the kids and Nauna, but we felt Nauna's love in spite of the language barrier. Aunt Liz dedicated her life to taking care of her mother. Nauna's real name was Gracia. I always thought it fit her perfectly.
The apartment was filled with treasures. Blue butter cookie tins filled with buttons (I still have a George Washington tin with Aunt Liz' buttons in my basement). Jewelry boxes filled with all sorts of costume jewelry - rings, necklaces, pins. We went through the box every time we visited and went home with something each time as well. In the tiny kitchen right in front of the window sat a step stool, where I would sit as she cooked these extravagant meals for us - breaded, fried chicken, pastelle, red rice, salad with the best salad dressing that still to this day no one seems to be able to duplicate. And we would eat, and laugh, and talk at her small table. All of able to somehow fit around it.
When you looked on the family pictures on the walls, Aunt Liz had placed chicken bones under our faces. I think they were wishbones. It was for good health. When we got a new purse she threw in coins. When we bought a car, she threw in candy. When we had babies, she tied a ribbon to the crib.
Once Nauna grew older, and it was too much for Aunt Liz to care for her, she moved into the Sephardic Home for the Aged. Nauna's sister, whom we called Tia, lived there as well. I think she liked it. Aunt Liz would visit a lot, and I remember going there with my Grandpa Sol (Nauna's son, Aunt Liz' brother).
My Grandpa Sol passed away when I was thirteen. Nauna was living in the Home, and I remember all the family discussions about what was the best way to tell Nauna that her son had died. I remember thinking how it was not supposed to be that the mother outlives the child. I don't think Nauna ever really recovered from that and within two years, she too passed.
After Aunt Liz retired from the factory, she worked as a sales clerk in clothing retail stores. Her pension was not enough to live on, and honestly she was such a social person, I think she also needed the people contact. She was friends with all different types of people - young, old, black, white, male, female, gay, straight. She really didn't care. She was "cool" and loved, and people just wanted to be near her. Once my cousin Alice married, she and her husband Steve lived in an apartment within walking distance of Aunt Liz. Aunt Liz would often go sit in the park with Alice's three kids. One of my favorite pictures of all time is Aunt Liz wrapped up in Alice's kids, sitting on the park bench, a huge smile on her face.
When I graduated from college, my parents held a party for me in our backyard. Family, family friends, my friends - they were all there. As the sun started to set, and the people left in the backyard were mostly under twenty-five, Aunt Liz sat with us, doing shots of tequila. My friends from college still talk about that.
When Aunt Liz passed, at way too young of an age, we were all heartbroken. Especially my Aunt Gail (Aunt Liz' niece). They were especially close. She died on Aunt Gail's birthday. I found that to be so tragic and beautiful in a way. The two of them always had this really special connection, and that seemed to solidify it in some way. In the Jewish faith, you name your children after a family member who is deceased. The reason we spell Ean's name with an "E" is because he is named for Aunt Liz (Elizabeth).
Cleaning out Aunt Liz' apartment was an adventure that seemed indicative of her life. She was somewhat of a clothes' hog. Along with sweaters and jewelry, blouses and stockings, twenty-seven pairs of black pants were unearthed among her things. I don't think she was a hoarder, but she sure knew how to pack it all in.
I believe that I subconsciously never took the bag of Aunt Liz' jewelry to get appraised. I don't think I could have put a monetary value on the memories that the jewelry brought to the surface. The bag is now with Aunt Gail, where it should have been all these years.

Thursday, January 19, 2017

What love looks like to me

This is what love looked like in my house yesterday:


I am awake and dressed in my room, and before Adam leaves the house he makes sure that things are set up for me. That includes setting up the stair glide so I can get into it easily. I can still do it myself, and sometimes I do. But when I leave my bedroom and I see the stair glide set up, or the hinged end of the stair glide is already down, or my paper cups are within reach on the kitchen counter, I feel love.

This is what love looked like in my house last night. Three friends from school came to visit with dinner and wine and their fabulous selves. They caught me up on events going on at school, things going on with their families, listened to Adam and me tell stories, didn't freak out when I had a choking incident, and just treated me like me.

This is what love felt like in my house last night. My friend Lisa's uncle passed away. She has had an enormous amount of loss in her life - some very significant losses within the past few months. She reached out to me and Abby through texts last night and I was able to then speak to her on the phone. I was able to love on her a bit when so much has been the other way lately. It felt like love.

This is what love was like in my house this morning. I received a few texts from my Mom about what food she could cook for my family, whether I wanted to go out today, and this was all while she went with one of my kids to a doctor appointment because I couldn't. Because I slept really late and didn't respond to her texts she was worried about me, so she called. That is love.

This is what love looked like in my house this afternoon.  I didn't get out of bed until noon! Sarah helped me up, and got me to the bathroom. I changed my ostomy bag, took a shower, and got myself dressed (Sarah did the shoes and socks). It seems like such an insignificant thing, getting myself ready in the morning, but for me it is huge. It makes me feel a bit more like me. Having control of my life in these small, yet important ways. I loved feeling like me.

This is what love looked like late this afternoon. Adam came home from work and said that our new friend Stephanie was coming over to talk to us about Comfort Keepers and how they can help us. He knew that I was hesitant to make that call; it seemed like one step closer to be less self sufficient and independent. However after meeting with Stephanie and Sheila I recognized that this help was not just for me, but for our family. These incredibly generous and thoughtful new friends completely get my concerns about me feeling like me, and about keeping my dignity.

This is what love looked like this afternoon. Sarah running into the house after being with her friends to bring Gillian her marching band music to the high school. Those two love each other and would really do anything for each other and it was evident by the look on Sarah's face.

This is what love sounded like at dinner. Ean and Adam were talking about sports programs at different colleges. Ean talking about the food he is learning to prepare in culinary class. Ean just talking to us.

This is what love looks like to me.





Tuesday, January 17, 2017

Hairy Legs

My legs are really hairy.
Or at least 3/4 of my legs are hairy.
Let me explain.
I haven't been able to shave my legs in a VERY long time. Maybe since the summer. Well at least since the weather became "wear long pants" weather and not "wear shorts" weather. Adam has offered but honestly he has so many other responsibilities that I just didn't pursue his offer. On top of the fact that the last time I shaved my legs I lost my grip on the razor and it landed just so that I cut my right big toe. And because my circulation is bad, it took a really long time for it to heal. (Kind of like when I cut my nose shaving my legs in high school, right Lisa?) But I digress.
Last night I had this little burst of energy at about 10:30, so I sat myself down on the toilet and decided to shave my legs. Got myself all set up - razor, washcloth, moisturizing soap, towel on the floor - ready to go. I began to shave my right leg and quickly realized the size of my legs plus the length of my leg hair did NOT equal the amount of energy or dexterity I could fathom up at 10:30 at night. So, the bottom half of my right leg is shaved.

This is my new approach to life, right? I do what I can. Feeling happy and positive - I make the most out of it by talking or texting with friends. I go out and enjoy the day. Having a tough day - I reach out to my village for support and ride the wave of grief until it passes. Feel the need to shave my legs - I do as much as I can for as long as I can and then go back to it another day.

This is how I am going to ride out the new presidency as well. I have made it no secret that DT scares the sh#t out of me. I feel that the future of our nation, our communities, our diversity, our public education system, our progress, and our families are at risk. It is imperative that we do things to counteract that fear, and for me that is continuing to be kind. I am going to do what I can to let those around me know that I support them and love them. I am going to do what I can to promote diversity and tolerance. I am going to do what I can to let my elected officials know that we have a voice and it needs to be heard. I am going to do what I can. I might not be able to march on January 21st, but I can email some of my senators. I might not be able to serve in the military, but I can show appreciation to those who can. I might not be able to physically attend protests to fight Islamophobia, but I can reach out to my Muslim friends and ask them what they would like me to do. And if and/or when it becomes too much, I will sit back and rest and let time wash over me so I have the strength to move forward and do it again.

Now, my right lower leg is shaved. Smooth and moisturized. Looking pretty good, I must say. The other 3/4 of my legs are still hairy and a bit dry. I will get to those parts when I can.

Sunday, January 15, 2017

Hope or reality?

I have had some pretty frank conversations with people I love this week. I think there was some concern that I have lost hope or have given up. I don't think I have. Most days I spend some time investigating drug trials for ALS, looking into whether or not I fit the criteria.  Honestly most of them I don't, for a variety of reasons. I don't have a complete gastrointestinal tract (ironic, right?), or I am taking Riluzole and they want people who have not yet started the drug, or I am not in the age bracket. It is honestly frustrating and depressing at times, and I don't talk about it much because having to explain this to the people who love me and see the look of sadness in their eyes is almost too much to bear. I use my computer time to do drug trial investigation, writing my blog, writing some very difficult and personal letters, and writing fiction. It is a balance between hope and reality.

What does the balance of hope and reality really look like? As Gillian and I were snuggling in bed this week she asked "Will you and Dad move out of this house when we are grown up and on our own?" The question caught my breath. In the seconds before I answered her I thought about how I might not be alive to see you grown. I thought that is a decision Dad will have to make on his own, I thought does Gillian not get the brutality of this disease or is she in denial or does she just have hope? I breathed and answered "I don't know. I love you so much." Gillian smiled.

Gillian and I spent some time de-cluttering our home this weekend. She has created a list of things that she wants us to work on together. So, she organized our food pantry, and we tossed the expired food. We emptied the school supply / craft cabinet and made a donation bag and put the rest back neatly. We finally rid ourselves of the huge basket of unmatched socks from the upstairs hallway. Our nephew Sam adopted the beautiful wooden card/game table that belonged to my in-laws. It no longer sits in our living room, and it feels right going to Sam. Little by little we are working organize the house. I feel like it is a preparation for something? Maybe. I am not sure. For Gillian - she just loves to organize. She must have gotten that from my Dad.

I am having trouble holding a fork, cutting my food, eating raw fruits and vegetables. Sitting with others over a meal is starting to make me a bit self conscious, I drop my fork often. I eat a bit slower than most. I awkwardly put food in my mouth, and sometimes I totally miss. I know that people are wondering if they should help me or offer their help or just pretend that they just don't notice. I am not sure if I know what to tell them, or what advice to offer. Do I say "I will ask if I need help."? Do I pretend that I can still do it all? Do I take people up on their offer of helping me when I don't really need help? I really don't know. I am an independent person who no longer can do a lot by myself.

I went to a funeral this week for a gentleman I didn't really know. I know his family, and it was important for Ean to be there for his friend. I would be lying to say I wasn't scared or worried about my own reaction to going to a funeral when I think about my own death as much as I do. The funeral service was lovely and I found it to be comforting in a strange way. The poems and prayers. Listening to his grandchildren speak so eloquently about their grandfather, huddled together at the podium, holding onto each other for support. Listening to my friend speak about her father very much in the way I would probably speak about my own father. All of this brought me to tears, yet made me feel like I missed out on something important and special by not knowing this man. I spent some time looking around at the people who loved him and thought how lucky they are to have known and connected with such a person.


Wednesday, January 11, 2017

Dreams and Jello

I did not sleep very well last night.
My bed was uncomfortable.
The pillows were not right.
I was too close to the bar and I kept imagining that I was going to fall over the edge.
The dog was sleeping on my legs.
Sonky and Adam were snoring in perfect rhythm.
Too hot with the blanket on.
Too cold with the blanket off.
You know - one of THOSE nights.
Everyone has them once in a while.
On top of that when I did fall asleep I had the weirdest dream.
Adam and I were walking through a neighborhood going door to door asking people if we could pet sit for them. I knew it was summer because there were ladies sitting on their front porches drinking lemonade, wearing sunglasses and bathing suits. Every time we went to a house, the people said yes and brought us in and introduced us to their pets - hedgehogs and lizards mostly. One man - who looked like my Grandpa Sol - had us meet his bearded dragon in his backyard above ground swimming pool.
When we got home we realized that we didn't take down any names or addresses or get people's house keys. So I jumped in my smart car and drove back to the neighborhood which was now under construction and the workers were picking up pieces of 2x4s from the road as I drove up to block my way. I kept having to find a detour, and I got lost. Eventually I found my way back to the highway and started driving home without any of the information I needed.
I don't particularly think my dreams mean anything. But if they did this one was chock full of meaning - finding a detour, not getting the information I needed. Feels a little like my life.

I canceled a visit with a friend because of being tired and kind of cranky. I also had to change my bag this morning which is time consuming and honestly exhausting. I don't like canceling on people, especially my friends.

I decided I wanted Jello for breakfast (no judgment). My Mom made me Jello with some canned fruit mixed in. Yes, my Mom made me Jello. Like when I was little (again, no judgment). I took it out of the fridge, along with the cool whip (can't have Jello without cool whip). I spooned out some of the Jello into a bowl. And of course some of it spilled on the floor. Okay, no problem. I called the dogs over to eat the Jello, but they snubbed their noses at it. Hmm...how does a person in a power wheel chair clean up Jello from the kitchen floor without the assistance of their dogs? Let's try some paper towel. In my attempt to get the paper towel I rolled over the Jello. So now there is Jello on the floor and Jello on my power wheel chair wheel. And if I continue to move in the wheel chair the Jello goes all over the floor. This is a quandary.
I managed to reach the paper towel with my stretched out arms. I threw the paper towel to the floor where it miraculously landed on the spilled Jello. Then I rode over the paper towel with my wheel chair which somehow picked up the spilled Jello and cleaned up my sticky wheel all at the same time. I was able to do something similar with a damp paper towel. Problem solved!
Well you would have thought I had landed on the moon with how happy this small accomplishment made me! I began to laugh out loud which then made me cry because I am so tired. The dogs are looking at me like I am crazy. And YES, I still did eat Jello and cool whip for breakfast.


Tuesday, January 10, 2017

Surrounding myself with beauty

Beauty is in the eye of the beholder.
Truth.
For example I think my dog Jackson is beautiful. The rest of my family (well maybe not Gillian) would strongly disagree. Adam regularly calls him "little asshole" and that is NOT a term of endearment. Sometimes when I look at him I get so happy that I get that warm and fuzzy feeling in my heart. Yes, I am a crazy dog person. Maybe I see his beauty because he is so attached to me and loves me more than anything in the entire world. This week cousin Cindy, who is a very talented artist, sent me a portrait she did of Jackson:



Just amazing, right?! I am not sure the photograph I took does it justice. I keep expecting Jackson to jump off the paper!  This is beauty. Not just because Cindy is an incredible artist and the work itself is fabulous. Not just because it is a drawing of Jackson and he himself is beautiful. More so because Cindy thought of me and took the time out of her days to create this gift for me. That in itself is beautiful. It just makes me so happy every time I look at it.

Today Sarah and I went and did a little shopping and out to lunch.  It was so much fun to sit and talk over lunch, and listen to her stories about college, and friends, and classes, and what the next semester might hold. I loved watching her pick out clothes and try them on. I appreciated her helping me in and out of the car and wheelchair, and showing compassion for me as I had some difficulty with some movement. This is beauty. It is time spent with my almost adult daughter, beautiful memories created, and moments to look back on when she goes back to school.

A few months ago I was looking through some old photographs, and found one of pure joy. It was from one of our many trips to Ocean City, New Jersey, where Ean was standing in the ocean just as the wave was crashing above and behind him. I couldn't really see his face in the photograph but his body reflected such joy - the image almost made me cry. I asked my Mom to paint this for me:



This is beauty. Not just because my Mom is an incredible artist and the work itself is fabulous. Not just because it is a painting of my beautiful boy. More so because my Mom was able to encapsulate that moment in time for me in such a way that every time I look at the painting I will feel that joy. She generously created that for me. That in itself is beautiful.

Gillian came home today after school and band practice. She plopped herself down in the living room where I was napping in my chair (oh my goodness, I love this chair!). She talked to me about her day and then after a while snuggled a bit in my lap. When Adam came home, she helped him get dinner ready. Beauty in the ordinary moments. Happy chatter, simple dinners, and smiles and laughter across the table. Ending dinner with a little chocolate cake didn't hurt either.

Beautiful Bella (and her family) brought us a bag of "love" just prior to us leaving for DC a few weeks back. In the bag were potted Amaryllis bulbs, not in bloom. We watered them well and left the plant on our kitchen windowsill. It should be noted here that I have a brown thumb. I typically kill every plant ever given to me within two weeks time. Maybe it was because I left it alone, but when we got back from DC the plant has grown considerably. Maybe it was because Gillian and Adam watered it, and I was just an observer. But this week the flowers bloomed:



Beautiful! Every time I look at these flowers A) I can't believe they grew to be this beautiful under my roof; B) I can't believe this color exists in nature; and C) I smile!

Last week I cleaned off my dresser. It was REALLY messy. I typically keep special photographs tucked into the edge of my dresser mirror. I grew up with my Mom always doing that, and I followed suit. Due to the messiness of my dresser, most of the photographs had fallen down. When I was straightening up, I found them, and tucked them back in to their rightful place. Pictures of as many school friends as we could fit into the photo booth from Jess and Justin's wedding; a picture of Grandpa Sol and Grandma Bea; a silly zoo picture of five year old Ean; me and my beasties; one of my favorite family pictures taken at Eli's Bar Mitzvah - Sarah's smile is dazzling! This is beauty! Memories that make me smile and reflect and happy.

Beauty is in the eye of the beholder.
Truth.





Monday, January 9, 2017

I am more than my biology

I am not even sure where to begin.

Friday.
I'll begin with Friday. Friday I went to see the Rabbi. And though most of what we talked about is really too personal to talk about in my blog (even though I pretty much tell you everything), you should know that I felt comforted after I left. One thing that he said to me that has now become my new mantra is "You are more than your biology". So now I know that I am more than my UC and my missing colon. I am more than the ALS and my curly hair. I am what I give, and love, and do, and inspire, and feel. I am more than my biology. And when my biology, or my body, is no longer here, I will continue to give, and love, and do, and inspire, and feel. All based on how I did those things in my life. They will continue to go on.

Friday
Meeting with the Rabbi was emotionally exhausting. I went out to lunch with my parents which has become one of my absolute favorite things to do. I came home intending to nap, but I just couldn't. Then friends came over, and I loved visiting with them, but I'm afraid I wasn't the best company because I could feel myself just fading away from exhaustion.

Saturday
At 9am we had our family photo shoot. The photographer came to our home and we took a bunch of family photos - even some in the snow! I can't wait to see them.

Saturday
I took a three hour nap. It was much needed.

Saturday
Adam's cousins Eric, Jennifer, and Eli came to visit from Cincinnati. We had a great visit. Adam's brother and sister in law and nephew came over and we hung out and talked and caught up and reminisced. It was really lovely. I wish we lived closer to them as we all get along so well. We ventured out in the really icky, snowy weather and went to Rossis for dinner (yum!). We came back here for dessert and introduced our Cincinnati relatives to WaWa coffee.

Saturday
Most of the day I had this annoying cough. It wasn't a "I have a cough, cough". It was more like I was having a little allergy problem and I was coughing to be able to catch my breath better. It was a little disconcerting, but seemed to be manageable. I never felt like I wasn't able to breathe, and I was trying to keep my body calm and serene so I wouldn't panic and make it worse.

Saturday
I went upstairs to go to the bathroom and the toilet lift wasn't on the seat, but I really had to go, so I used the toilet without the lift. I couldn't get up when I was done. Our bathroom toilet is really low and the bars were of no help to me. I called for Adam, but he was downstairs with our company so it was difficult for him to hear me. I sat there for a little while, thinking about the craziness of being stuck on the toilet. Then I began to laugh. I was stuck on the toilet. This is what it was like when I had UC. I was always "stuck" on the toilet, but for different reasons. Eventually Adam heard me and came up to help me. He felt bad, but really it was okay.

Saturday
Going out in the snow in a wheelchair is a challenge! We got to Rossis alright, but the handicapped spots were only sort of plowed. No fault of Rossis. Too much snow to keep up with. So Ean pulled me backwards through the snow and got me into the restaurant with very snowy wheelchair wheels and snowy sneaker feet. Then, of course, I had to go to the bathroom, so I asked Gillian to take me. I was able to manage in the stall until I had to get up. My feet were wet and snowy, the floor was now wet and snowy, and getting up myself was like being on a slip n slide! So for the first time, Gillian had to help me in the bathroom. It was something I had dreaded - my kids helping me in the bathroom, seeing me that vulnerable. But she handled it like a trooper. It probably won't be the only time.

Saturday
I ordered a Rossis burger with provolone and broccoli rabe, no bun. Delish. Another first. I wasn't able to cut my food. Adam had to do it for me. My hands just don't have the strength anymore. There are worse things, right?

Sunday
Everyone back at our home by 10 am. Bagels, lox, whitefish salad, cucumbers, tomatoes. When the Dauers get together, we sure know how to eat!  In between all the eating my reclining lift chair got delivered. Everyone worked together to move furniture and fit the chair in the living room in such a way where I can transfer in and out of it myself and still be a part of the gathering when I use it. I love it!

Sunday
The chair. I just sent a thank you note to the organization that funded the chair for us. They are called the Ellie Reynolds ALS Foundation. I explained to them something that they already know - that the chair is not just a chair, and the chair is not just for me. The chair is one more tool to make our lives just a bit more normal. The chair gives me the opportunity to sit and visit and talk and hang out just like a non-ALS person. The chair lets me be a part of this:

Displaying 20170108_155925.jpg

And though this is just an ordinary scene of an ordinary day, it is what I crave and desire every waking moment. I treasure the small moments.

Wednesday, January 4, 2017

Roszi

I often dream at night of walking, running, using my legs in ways I can no longer. Sometimes I have a destination, sometimes there are people by my side. I have always had vivid dreams that I remember. Now - maybe because of some of the medications I am on - I remember at least one dream a night.

Last night I dreamt I was in cousin Roszi's (pronounced "row-szee") apartment in New York City. Cousin Roszi was my Mom's cousin. More specifically, she was my Mom's father's cousin. From what I remember, she lived in an upscale, sprawling apartment in Manhattan. When I was a young child we would go to her apartment on the Friday after Thanksgiving for an open house type of celebration. There were always the most interesting people in her apartment - some were distantly related to me, most were not. I remember men in turtlenecks, and women in elegant sweaters. I remember unusual food on the buffet, and the end tables covered with things I wasn't allowed to touch. I remember the lighting to be dim and the conversations to be kind of boring. I remember the art on the walls. I remember that even though my brother and I were always the youngest people there, being kind of excited to go.  I remember instinctively knowing that this yearly visit was very important to my Mom as she had very few living relatives. My mother is an only child, her family was originally from Hungary, and many of her relatives had perished during the Holocaust. This was a time to make a connection to her family, so I made sure to always be on my best behavior.

In last night's dream I was a young child, with my straight brown hair and bangs. I was wearing a dress that my mother had sewn for me (orange, brown, and white), which I remember probably because I was wearing it in a popular family Chanukah picture. Though my body was that of a little girl, my mind was where I am now. I was in Roszi's apartment and it was filled with all sorts of adults that I didn't recognize. I found Roszi and reached up to take her hand. Her hair was white and in a bun. She was wearing a purple dress. She looked like the character Miss Rumphius, the main character of Barbara Cooney's picture book of the same name. I asked her to take me to see the art. We began walking around her apartment, stopping at each painting and sculpture. Roszi took her time to discuss the art and the artist. She was very knowledgeable and I found her analysis of the work very interesting. I was walking with her, but she was almost floating, her purple dress flowing behind her. I remember feeling happy and intrigued.

I think I was a teenager when Roszi stopped having her Thanksgiving open house. Long after we stopped going to see her as a family, I still wrote to her; and when I was an adult with a family of my own, I always sent her a Chanukah card and a picture of my kids for Rosh Hashanah. My Mom would consistently trek into the city to visit Roszi in her later years, and would call her. After a while Roszi couldn't hear very well, so my mother's calls were to check in with her caregiver. Eventually Roszi died.

Today I received a letter from a beautiful and thoughtful friend who has been reading my blog.  She wrote to me about something that stuck with her from one of my posts. I had asked "will I be remembered". In synopsis, my friend revealed to me her thoughts that long after one is finished with their time on this earth, their influence remains. I haven't thought about Roszi in a very long time. In fact, I could probably count on my two hands the amount of times I had seen her in my life. Yet, last night I dreamt about her. I remember the influence my visits with her had on me. I remember the importance she held for my mother. Last night's dream and my friend's letter have made me realize that how we live our lives can influence each other in often unspeakable ways.




Tuesday, January 3, 2017

The envelope

Last night was tough.
After thinking about my shoes all day, Adam and went and I "tried on" my shoes to see what fits. Not much. I was right - my right foot is more swollen. I also didn't really take into account that my toes on my right foot are in this weird rolled over position so when you try to squeeze them into shoes, it is really uncomfortable. With every shoe we tried, and every shoe we put into the donation bag, I found myself getting more frustrated and upset. It felt as though the shoes were pieces of me getting tossed because they were of no use anymore. We decided to keep all the sandals to try another day - maybe closer to a time when I would really be wearing sandals - and we didn't even get to the dress shoes. I probably won't even try those on as there is no way I will ever wear those again. The good part is now we have four bags of shoes to donate. I had many more shoes than I was aware of. And yes, today, I put on the dreaded, repetitive, sneakers. Sigh...
While Adam was reorganizing my closet to neatly put back the three or four pairs of shoes that I can actually wear, he came across my school bag. It was brilliantly sewed for me by my friend Janet. I buried it in my closet last year when I knew I wasn't going to be going back to school for a while (who knew it would be this long...). I couldn't bear to have it out. It was difficult to look at.
Inside the bag was "the" large manila envelope. The one that I had carried around with me everyday since February of 2012. It was the envelope I went to when I felt like I was being an ineffective teacher, or I was having trouble reaching a particularly difficult student.  It was the envelope I went to when I was doubting my career choice or I had just stayed up until midnight for the third night in a row writing lesson plans. Almost every teacher I know has an envelope or a box or some sort of place where they keep the letters, cards, notes from students and parents that just keep them going when things get rough.
I opened the envelope and spent some time mulling over the letters from parents, and the cards from the students. I found the letters written for me when I was Teacher of the Year. I read a letter written to me by a parent when it was thought that Governor Christie's budget cuts was going to put my job in jeopardy. I shed some tears when I found the picture of me and Steve Mayer taken at the Teacher of the Year luncheon (I miss my friend). I spent a lot of time looking at that picture. I was particularly intrigued with my legs. The picture must have been taken in the Spring, I was wearing a dress and sandals, and it must have been at a point when I was exercising and eating well because I looked thin and fit. My legs looked so strong! I could see the definition of muscles. And I was standing. My body looks so different now.

I found the Sharon School yearbook from 2011-2012, and read through it, imagining what all my kids look like now. In the back of that yearbook, tucked into the last two pages, I found a paper version of this article:

http://parade.com/121472/colinlpowell/120520-colin-powell-kindness-works/

Take a moment to read it. It is just as powerful today as it was five years ago.

After spending some time with the envelope I put everything back in the bag and asked Adam to put the bag in the closet. I couldn't bear to look at it anymore. And as we were going to sleep last night I cried. I cried deep and hard. I want my strong, muscular legs, and my upright body. I want my mind back in the classroom making an impact on students. I want interaction, and "aha" moments, and kid laughter. I long for the life I used to have and the person I used to be. I miss her.




Monday, January 2, 2017

Stream in paragraph form (for Christie)

I wonder if there are any PALS who also have ostomies...
It is getting harder for me to change my bag because it requires me to be in standing position for a longer period of time than my body is comfortable with right now. Also because my right hand - specifically my right pointer finger - is in a slightly contorted position. Gripping things, holding things, doing that "pincher" move that you so eagerly wait for your baby to do with Cheerios, is all more complicated. I am still able to do it but the bathroom kind of looks like a war zone when I am done. But fuck it, I am still going to do it myself for as long as I can. I think I will ask if there are other PALS who have "Consuelas" on a few of the online support groups. Maybe they have a few tricks up their sleeves.

Because of the right hand saga, I am finding it more difficult to type text, put my contacts in, pet my dogs, pick up a sandwich or a bagel, and scratch an itch. The itch scratching - so annoying! I am right handed so my right hand instinctively moves to go scratch, and most of the time the itch is getting scratched by my pointer finger knuckle. Not a very satisfying scratch. I am attempting to train my left hand to be the itch scratcher. My left hand and leg are still stronger.

Talking about legs (we were, weren't we?), I have stopped wearing my brace on my right leg. Phoebe has gone into retirement. It became too heavy, just like the Physical Therapist told me it would (grrr...). Most of the time, in order to move my right leg while in a sitting position, I have to use my arms to assist.  So be it. The good thing is that I can wear shoes other than the sneakers I have been wearing EVERY SINGLE DAY for the past...forever amount of time. I just need to try on my old shoes and see what fits. The shape of my feet have changed. I guess because I don't really move my toes and I sit a lot so they are swollen. It is just something I have noticed.

I don't want to seem all full of myself, but I have gotten really good at transferring from wheelchair to power wheelchair, or wheelchair to bed. Adam and I have it down to a science. We bought these slippers from Walmart with really good grips on the bottom. Once I am sitting on the edge of the bed, Adam slips those on my feet and pulls the step out from under the bed. Using the good grippy slippers and the height of the step, I can then push myself further onto the bed. It is our bedtime routine. SO romantic!

Today I am wearing my old lady sweatpants. I call them that because they are the same sweatpants my Grandma Bea used to wear (no offense Grandma Bea). But they are really comfortable and easy to get on and off. So I wear them.

A really long time ago when Lisa and her husband Marc moved to Florida, Lisa and I started sending a journal back and forth to each other in the mail. This was before email or the internet and definitely before social media. It was pretty cool. And for a while, like many years, we stopped doing it. And then I found it and we started it again. And then it stopped. And now Lisa just sent it to me. I have to admit I haven't read it yet. I want to savor it. I want to sit down, at a time I am all by myself, and read the journal from the beginning. I want to think back on all those years ago and why I wrote the things I did. I want to reflect on the old feelings. I want to experience the growth and the change.

Every year for New Year's Eve, the neighborhood friends gather together at one of our homes. This used to include the kids, but as they have gotten older, less and less of them are with us. They go to friend parties, or stay in their own homes, or bunker down in their bedrooms with one or two friends. But I digress.  Adam and I thought it would be too difficult for me to get into the home of the friend that wanted to host this year, so she "hosted" it at our house. She and all the other neighborhood friends brought food (and food, and food...) and drinks (and drinks, and drinks...) here. And we ate and drank and talked and watched football, and had our yearly neighborhood gathering that I look forward to every year. I don't think I did a good enough job telling these friends how much I appreciate them doing this for me. At the end of the night, I hugged them and cried. Partly because I realized after a whole night of talking that I am starting to lose my voice. Predominantly because whenever I do a "yearly" thing now, I always wonder if it will be the last time. Or what kind of physical limitations will I have next year?

I have a regret that I need to get off my chest. I have been thinking about it a lot lately. A few years back I had a friend who had cancer. She was home, undergoing treatment. I told her I would go visit her. I never did. And then she passed away. I let my own life get in the way. I feel really bad about that.

Adam and I are going to try to eat healthier starting tomorrow. I know - the old standby New Year's resolution. People keep bringing us the most delicious food - latkes, chocolate, chocolate, cupcakes, chocolate, wings, chocolate, donuts, oh my! But now it is time to get serious! Well, maybe...

When I was in my early twenties I shared a townhome with two other women. I became very friendly with one of the women, Judi. Judi was about the same age as my parents, and was more like an older sister to me. Even after I moved in with Adam, and we got married, Judi and I still stayed in touch. Even after she met her husband and moved to Missouri, we still wrote to each other once a year, usually around the winter holidays. I just received a Chanukah card and a lovely letter from her and her husband Pat. I was happy to hear from her, but soon grew a little sad knowing I had to write her back and tell her about my diagnosis.  I wrote her back, telling her about all the good things in our lives - the kids, my parents, the dogs, etc. And then I told her about ALS. It sucks.