Wednesday, November 30, 2016


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.

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.

Saturday, November 19, 2016

A day


1:30 am.  PISSED OFF
I realized that my ostomy bag was leaking.  I S-L-O-W-L-Y made my way to the bathroom, and discover that my seal wasn't working, and hadn't been working for a while.  It caused a major skin irritation.  I removed my bag, my seal, took a shower, put all my stuff back on, and went back to bed at 2:46 am.

I realized that my ostomy bag was leaking again.  I made my way to the bathroom, and discovered that my seal was once again not working.  I removed my bag, my seal, cleaned myself up, took extra time to reapply my stuff, and went back to bed at 7:37 am.
At this point I really should have gotten up as I was scheduled to leave for my first ALS support group in a few hours.  I became so anxious about my bag leaking, that I decided to take care of myself in a different way and just go back to sleep.  The support group would have to support me another time.

Woke up.  Yes, I was exhausted!  Realized the seal was holding and feeling happy.  Made a call to see if the ostomy nurse was taking calls this weekend.  Nope.  Would have to wait until Monday.  Ok. Got up and dressed and decided I should take advantage of the beautiful day and go for a "walk".

Got downstairs.  Ate a bowl of cereal.  Informed Gillian that she is now part of my plan.  We were going to go for a "walk".  Adam would take Sonky on the leash.  Gillian would push me in the wheelchair, and I would hold Jackson on the leash.  Ean wanted no part of this adventure. The dogs and I were really excited and we were on our way.  We started down the sidewalk through the carpet of beautiful yellow and orange leaves and...

Gillian was unable to see the uneven sidewalk due to the leaves, and as she pushed the wheelchair forward over that spot, my body jerked forward right onto the sidewalk into the leaves.  I landed on my side and immediately began to laugh.  And laugh.  And laugh.  I'm even laughing now as I recall the incident.  The dogs began to crowd around me and kiss my face. And I laughed some more. Somehow Gillian got a hold of both dogs, and Adam started the attempt of getting me up.  But I was laughing so hard that I was not helpful at all.  Adam's laughing, Gillian's laughing, I'm laughing and all the dogs want to do is get moving.

Adam somehow manages to get me back into the wheelchair.  He takes both dogs from Gillian and we decide Gillian wheeling me in the road would be a better choice for everyone involved.  As we finally move forward, with me still laughing, we take in the beautiful weather, the gorgeous leaves, the excitement of our dogs, the familiarity of our neighborhood.  Gillian begins to sing a very silly song and we laugh and love and enjoy our walk.

We make it home and I eat a little snack - left over spinach dip and crackers that my friend Marissa had brought over the night before.  Still delicious.  It makes me reflect on the friends that came over last night and their generosity of time, gifts, and love for our family.  It brings tears to my eyes as I try to come up with the words that will reflect how appreciative I am for their friendship.  Adam and I come up with a plan to get into Cheryl and Tom's house for their pie celebration later that afternoon.

We drive over to Cheryl and Tom's house, and park in their driveway.  I used to hesitate to park in people's driveways, feeling like I was being presumptive to take that space.  Now it has become more of a necessity as it gets me closer to my destination.  Cheryl comes out to greet us and Adam and I execute our plan to have me use the walker to get into the house.  Gillian, who got their a bit before us, instinctively comes out to help me. Tom and his friend come out to offer their assistance but quickly realize that their presence equals "too many cooks", and quickly retreat back to their pie making, and to take some of the attention away from me.  I so appreciate that. I successfully make it into the house, into a chair, and am able to hug some of my favorite people.  I eat pie and drink apple cider and have conversation with new and old friends.  It feels normal and comforting.

After sitting for a long time my core muscles began to get very tired.  I signal to Adam it is time to go home.  I am a little disappointed in my endurance, as well as the fact that Danielle and Frank had just gotten there and I wouldn't be able to visit with them longer.  I say my goodbyes, tear up a little as I hug Michele, and start making my way out of the house.  As we are leaving, Lisa and Tom are walking up.  I haven't seen Lisa in a very long time and was just a touch surprised that she knew of my diagnosis.  They patiently waited as I made my way down the steps and Lisa gave me a hug.  She looked lovely and happy and we did a little bit of catching up.  I got into the car and Cheryl and I hugged one last time which resulted in me weeping.

Adam got me to the couch.  I really needed a nap and to stretch out my body.  I lay there for a while thinking about the last 24 hours and all that I had done and gone through in just a short time.  I breathed in deeply in order to calm my body and start some meditation.  I still held the scent of Lisa, the perfume that she wears, and that was reassuring to me.  I meditated and fell asleep.

I woke up to the sounds of Gillian leaving to go to dinner with a friend, Ean asking me if he can have spaghettios for dinner, and Adam preparing some food for anyone who wants it.  Jackson was still sleeping above me on the top of the couch.  Watching over me.  It was very dark.  I checked my phone messages and smiled because even before I opened my phone I knew one of the messages would be from my Mom. I made sure my ostomy seal was still intact (yes!), and I began to hear the wind kick up outside.  I remembered that Adam Joseph said it was going to be cold and nasty and I was grateful that I got outside today a bit to enjoy the beautiful weather.

Every once in a while I still forget.  I forget that I can't get up from the chair myself, or I need help to put on my jacket.  So I go to get up and I immediately plop back down.  I begin to cry.  And then I remember how I dropped the hummus lid in my kitchen last night, and one of my mother in law's lead crystal wine glasses (it shattered), and how my lady village helped me to clean it up.  They came to my rescue without question or discussion and that made me cry some more.  I guess because I love them and I am so appreciative of the help, but I am frustrated that I can't do all these things myself.

I call to Adam to help me get up.  He comes to get me and I notice he and Ean are watched Newsroom together and having discussions about the show.  Then they turn on college football and they talk about plays and players and stats the way Adam and his father used to.  It makes me happy and feels familiar.  Soon Gillian will come home, and on Tuesday Sarah will be back for a few days.  I live for these moments and will do my best to bask in the love.

Tuesday, November 15, 2016

Something a bit more uplifting

Let me apologize for my last blog post.  Boy, what a downer!  I know I don't really have to apologize because my blog is MY blog and I get to say and write what I want, but I reread it yesterday and I thought people must think that I sit at home and only think sad things and feel sorry for myself. It is actually quite a mixture - a mish-mash of feelings.  I can feel sorry for myself in one minute and then be laughing at myself the next.  Let's talk about laughing.  One of the effects of ALS is the inability to control my emotions, specifically laughter and crying.  So I no longer can giggle a bit, I laugh with gusto.  And I no longer just tear up, I sob uncontrollably.  It is so weird.  I was told I can take a medicine for this if I would like, but right now you all are just going to have to deal with it. Honestly the crying part isn't much different.  I have always been a big crier.  I feel like you know that and I have said that more than once.

This morning was a perfect example.  Adam and I were doing my stretches.  I find that to be a bit depressing actually because I am not supposed to move the muscles myself - I am supposed to be passive. (By the way I now HATE that word - passive.  Need to come up with something different) So I am laying there feeling pretty shitty and sorry for myself, when my stoma (her name is Consuela) starts to make noise.  It makes noise every once in a while, but this morning it sounded like it was singing.  And that made me laugh.  So my mood was saved by the singing Consuela.  

In my last blog I listed sad things.  Today I am going to list things that make me happy.

This is my card container.  In it I have stuffed all the cards and letters I have received over the past ten months or so.  I say "stuffed" because there really is no more room.  It is filled with well wishes and beautiful thoughts.  It is filled with complex messages and simple expressions.  They are all so very important to me, every one of them.  Sometimes when I am feeling low, I pull a few out and reread them.  Most of the time I just have to look over at the container and feel happy.

I feel happy when I look over at my living room couch and see my dog Jackson sleeping on the top of it, right in front of the window, sort of like a cat would be laying in the sun.  He is really not supposed to be up there but Adam gave up and put a blanket up there for him so he wouldn't ruin the couch (or because Adam secretly loves him and wants him to be comfortable).

It makes me happy when I am resting on the couch and my kids come up and just start talking to me. We talk about nothing in particular, but it is comforting to feel them treating me the same.  

It makes me happy when Adam is helping me with something like standing me up or taking off my socks, and he leans over and steals a kiss.  

It makes me happy to know that my friends still want to see me.

It makes me happy to hear Gillian ask me quietly if I need a lighter fork, or after she and Ean know I have been crying they ask me if I am okay. They are taking care of me.

It makes me happy that Sarah will be home in eight days and I will get to hug her and squeeze her!  

It makes me happy to have my parents around to hang out with.  I love spending time with them.  But it also makes me happy that they can go back to Florida to take care of themselves.  They need to do that.

It makes me happy that I have planned get-aways with family.

It makes me happy to look at the colorful leaves on my lawn and listen to the noise they make as my dogs walk through them.

I am happy when I write my blog.

I am happy when I eat chocolate cake.

I am happy that I reconnected with some cherished friends.

I am happy to received thoughtful messages from people I don't know who have gotten something from my blog.

I am happy to know that my students (they will always be my students) are being so well taken care of and are learning and flourishing.

I am happy that some of my closest friends are in Israel and loving it!

I am happy that Ean is on the swim team and comes home hungry and exhausted from practice.  

I am happy just having another day to find something to be happy about.

I am happy to know that I now have this list of happy things to read when I am not feeling happy.

Sunday, November 13, 2016

This week...

I can no longer push my manual wheelchair by myself.
I ordered a power wheelchair.  It isn't a regular power wheelchair, but one that is specialized to my upcoming needs.  It tilts back, and has a head rest.  Hopefully the insurance company will approve and pay for the component that raises me up and down.  It will take three months.

I can no longer walk up and down the steps without supervision.
We ordered a stair lift.  I will be able to sit in the chair and it will bring me up and down the stairs.  I am going to need to remind Ean that this isn't a toy.  I will be able to use it until I have no more strength in my core to sit upright by myself.  Then I will have to set up a bed downstairs.

I can no longer brush my teeth using a regular toothbrush.
I was given a grip to hold my toothbrush or I can get an electric one.

I can no longer do active stretching.
I now have to do passive stretching which means Adam or my Mom, or whomever else I can get on board, needs to stretch my legs, feet, hands, and arms for me using a series of set exercises.  I am not to use my muscles.  I need to conserve strength.

I went to the ALS clinic this week:
I met with my neurologist (love her!) and we spoke about all sorts of things.  Weakness, eating chocolate, new meds, how the older meds are working, blood work, what it will feel like when I start losing my respiratory control, whether or not I should have the last part of my gastrointestinal surgery (leaning toward yes). This is where I learned no more steps without supervision.  The one thing she couldn't tell me is how my disease will progress and how long I have to live.  I asked the question but she couldn't tell me.  Do I really want to know? Yes. Today I say yes.  On Thursday I wanted to know. Other days I don't.  It doesn't really matter. There is no way to know.

I met with the research nurse.  (Is that what she was called?)  We talked about the availability of drug trials, the best way to get on them, how not having a colon might deter me from getting on one, that there is one coming up in February/March that I might be a candidate for, the ones in Israel are full, how to apply for stem cell research trials.  She was extremely helpful.

I met with the physical therapist and occupational therapist. They did some evaluations.  Most telling for me was how little control I have of my core muscles.  We spoke about how to make accommodations for the disabilities I have now and how to accommodate for the ones coming up. This is where I learned about no more pushing the wheelchair.  They showed me a variety of gadgets. I took home tubing to put on a pen, a fork.  I am pretty close to needing those.  I took home something to help me open and close buttons on my clothing.  Don't need that yet.  I took home elastic shoe laces.  Maybe.  We talked about the lack of circulation in my feet (from sitting too much but that can't be helped).  We talked about how I am coming to the point where I don't really need to wear my MOFO (right foot brace) much longer because I am doing a very limited amount of walking, but for right now it is still okay.

After the appointment Adam, my parents, and I went to lunch. We talked about the overwhelming sadness I feel because this day a little more of my independence was taken away. I like doing things by myself. There are an enormous amount of things that I like doing that I can't do anymore.  This makes me sad.  And I cried about it.  I cried that day, and that night, and I probably will continue to cry about it.

On November 19th I am scheduled to go to my first ALS support group.  I think I want to go.  I am going.  I am a little afraid.  I am going to meets PALS (people with ALS)  who are farther along in the disease than I am.  Will that scare and depress me?  Will it inspire me to keep moving forward, or push me back?  Will it be helpful to meet with people who are going through the same thing I am going through?  I think it will.  I am going.

This week I started praying.  Everyday.  I didn't used to do that. Not really for me, but for my kids.  I want them to have strength and be okay.  I want them to live normal lives and do normal things and be happy. This week has been hard for them.  They are scared about the climate we live in.  They have a mother who is ill. I have always fought for them.  I might not be around to continue to fight for them.  They have a father and a large extended family and a beautiful village that will fight for them.  And I hope all my lessons that I have taught them are ingrained in them and they are ready to fight for themselves.

This week a friend brought me holy water.  I keep looking at it, touching the container.  In complete disbelief that he would give me his holy water.

This week I mourned the loss of two amazing women. Honored to have known them.

Today I will see friends that I haven't seen in a very long time.  I yearn for the familiarity of comfortable relationships.

Friday, November 11, 2016

Keeping a sense of humor

Many things have happened this week, but I need to start with what happened today.

Adam and I just got back from food shopping.  First syllable rhymes with "beg", second syllable is the singular of "mens".  I love this store.  Even though they are in the midst of the longest remodeling in the history of mankind and everything is in a different place every time I go there, I still love shopping there.

This week I was told that I should try to preserve as much arm strength as possible by NOT pushing myself in the manual wheelchair anymore.  That in itself will be another blog post, but relevant to this story.  So in an attempt to be able to shop with Adam and be as independent as possible we decided that we would park in a handicapped spot, and Adam would go into the store and get me an electric wheelchair.  We got to the parking lot and there were no handicapped spots available.  It was like every handicapped person in Mercer County decided to go food shopping today.  After a few minutes we finally found one, in front of the empty store next door.  It was quite a distance from where Adam had to retrieve the chair, but there was no choice.  So we parked, Adam left the car, and I waited. And waited.  And waited a bit more until I could see him from a distance coming toward me on the cart going about as slow as a tortoise.  He finally got to me, the two of us laughing at the silliness of it all. I transferred from the car to the cart, and off we went.
About six feet.
And it stopped.
It just stopped.
We saw it still had power.  We turned it off.  We turned it on.  We tried again.  Adam tried giving it a push. It was stubborn, would not move.  I actually think I heard it laugh at us.  So Adam started the long trek back into the store to retrieve another chair.  And I waited.  However, I need to explain to you where I was waiting - where the chair stopped.  Right on the edge of the road, so it looked like I was waiting to cross the road.  So every single person who was driving by stopped, thinking I was waiting to cross the road. And really I was, but I was stuck.  So I had to wave them all along.  Some people didn't understand that I was waving them along, but rather they thought I was being polite and letting them go first.  And we had that arm motion argument you sometimes have with other people, you know the one that translates into "you go", "no you go".  So they had to roll down their window to hear me say, "no you go, I'm stuck."  About thirty people walked by me as I was sitting there.  Many kind of just looked my way.  A few stopped and asked if I needed help.  "No thanks," I said "I'm stuck.  My husband is retrieving another chair."
So I waited.
And waited.
And waited.
And pretty soon, out comes Adam again, moving as slow as a tortoise, in another chair.  By this time I am doubled over laughing out loud.  The people walking by who couldn't see Adam in the far distance were looking at me like I had lost my mind.  Adam finally got to me, we made the difficult transition of getting me on the other chair, and we were finally on our way.
Off we went.
This time we got about twelve feet before I could see that the light was blinking.
We were low on power.
"Just try to make it to the other carts!" Adam exclaimed.
"I know, I know!" I snapped back.
Would we make it?  Would this chair fail us as well?
We S-L-O-W-L-Y maneuvered the chair around plants and people, chairs and cars.
After what seemed like a year we made it to the other carts.  We tested out the power levels, and finally found a chair that would possibly get us to thru "B"eg"mens".
Off we went.
By this time I was starving.  I had slept late, didn't have breakfast, so we decided to go to their delicious cafe and have some pizza and drinks (I could have used a gin and tonic, but settled for raspberry iced tea).  After paying for our food, the elevator door opens to bring us upstairs to the seating area.  I moved the chair forward into the elevator - CRASH.  Hmm.  Didn't feel like it was going to fit.  Backed up, did some fancy moves and turns and barely fit in - as the power died.
Yes the power died as I finally fit the chair in the elevator.
With me starving.
And my iced tea and pizza taunting me.
The elevator door closed.
I turned the power button off, looked at Adam, and said "I believe we are stuck in this elevator."
We went up to the second floor.
The elevator door opened,
I turned the power on, and lo and behold, the chair moved!
I don't think I have been more ecstatic about anything in a really long time!
We went to the closest table, and I ate that pizza and drank that tea with gusto.  Nothing ever tasted so good.

Monday, November 7, 2016

This Post is a little about ALS

This weekend Ean, Adam, and I went to Delaware for a baseball tournament.  I absolutely love watching Ean play baseball.  He is more focused on the field than anywhere else in his life.  I love watching him know where the ball goes when he fields it, and I love listening to him and Adam recap the game, discussing pitches and plays, defense and missed opportunities.  I especially love watching him pitch.  It wasn't always that way.  When he was younger, and he was just starting out as a pitcher, I would find a tree to stand behind because I couldn't watch.  It was so nerve-wracking!  At eight or nine years old, so much is riding on the ability of the pitcher.  Would he be be able to stand the pressure?  Would the batter hit the ball back at him and hurt him?  Sometimes, like any pitcher, he would mistakenly hit a batter.  The expression on his face was always of concern, like he wanted to approach the kid and say "I am so sorry, are you okay?"  But the baseball player in him would just stand there and watch.  It was always like he was torn between doing the baseball thing and the human thing.
Now I don't hide behind the tree anymore.  Ean is a much more proficient pitcher, and I am much more confident in his abilities.  I am getting used to his rhythm, the way he pitches fast balls, and I can often tell when a slider or curve ball are coming.  Those days that he pitches are the days that he talks the least after a game.  Its like he is going over it all again in his head, and his modesty often prevents him from discussing his accomplishments.
I try to get to as many games as I can.  This weekend was his last tournament of the season and we got lucky because the weather was sunny and very tolerable.  Adam and I wrapped up in our team sweatshirts and I put a blanket in my lap, and we were good to go.  I recognize having me go to Ean's games are a lot of work for Adam.  He has to look out for me as well as himself and Ean.  We always have to make sure there is a path for him to push the wheelchair, make sure I can see the field yet stay away from possible foul balls, and make sure there is a bathroom I can get in and out of.
Let's talk about bathrooms for a minute.  Not all handicapped stalls are created equal.  When I am out and about I need to be able to get into the bathroom by myself.  This is not always easy.  The doors to the actual bathroom are often very heavy.  Sometimes I can push the door open with my wheelchair, but more often than not I need someone to open the door for me.  When I get into the bathroom, I need access to the handicapped stall.  When you put the garbage can on the outside of the handicapped stall and I can't get the door open enough to get my wheelchair in, then the stall is not handicapped accessible.
So I get into the stall.  In the best of handicapped stalls I find that a wise person has put a handle on the inside of the door at wheelchair height.  That way once I get my wheelchair in I can pull the door closed independently.  If there is no handle, I am often fighting with the door to close it.  I move forward in my wheelchair to pull the bottom of the door, and my wheelchair pushes the door open.  I back up and I can't reach the door.
Okay, so the door is finally closed and locked.  If there are no grab bars to help me get up and get on and off the toilet, the stall is not handicapped accessible.  I have to say that most of the bathrooms I have been in have good bars (grab bars, not those for drinking, though that might be an interesting addition, though maybe that should be another blog post).  This weekend the handicapped stall at the baseball field sucked.  Yup, it was awful.  No grab bars and there was this funky ledge in the doorway of the bathroom that made it impossible for me to get in and out of the bathroom myself.  Adam had to get me in and out (sorry ladies).  And I used the toilet paper dispenser as a grab bar.  Didn't break it though, but I got close a few times.
With all of this discussion about handicapped accessible bathrooms, I must say that women rock! There has never been a time I have been in a public bathroom where a woman hasn't offered to help me.  Okay, I admit when I first started going into the bathroom in my wheelchair, I was a little freaked out by strangers asking me if I needed help in the bathroom.  But now it has become the norm, and is much appreciated.  Women have closed the stall door for me, helped me reach paper towel, and opened and closed the bathroom door.  On Sunday, the woman at the Wawa even asked if I wanted her to stay in the bathroom until I was done so she could help me get out.  I didn't need her help, but how thoughtful is that!  The women that have helped me have been of all ages, some with disabilities of their own, and all different ethnicities.  I especially like when an adult who has a child with them helps me.  It is a huge lesson to teach a child that it is okay to reach out and help another, even if you don't know them.
I never really thought I would have to be so focused on bathrooms after my colon surgery.  I kind of thought that once my colitis was gone I would be free of that.  Not so much.  Its okay.  It helps me to see something from and with a different perspective.
I am not sure how this blog post went from Ean's baseball games to handicapped bathroom stalls. But it did.  Such is my life.

Sunday, November 6, 2016

The Post that is not about ALS

The day before Sarah's second birthday party she hit the back of her head against the glass shelf at the Gymboree in Market Fair.  The accident resulted in a trip to the ER, where she received a few stitches.  Most of that experience was probably way more traumatic for me than her.  The next day, at her party, she regaled the guests (which were mostly grown-ups) about the story of her getting stitches. She told about falling off the stroller, the blood on her head, the drive to the ER, how she had to lie on her belly and be put in a papoose, and then how she got a lollipop.  I knew at that time that Sarah was going to be a writer.

Margaret Wise Brown, author of the most popular children's book Goodnight Moon, also wrote a book called Big Red Barn.  Though Goodnight Moon was quite a hit in our house when my kid's were little, it was Big Red Barn that was Sarah's favorite.  Sarah was a little over two years old, I was hugely pregnant with Gillian, and we would often sit in the glider in her bedroom.  We would read this book every night.  And when I say "we" I mean me, and also Sarah.  She was "reading" along with that book from a very early age.  But more important than her memorizing or "reading" the book, was the questioning that she did about the characters and the setting, how the book was put together, and why did this lady do the pictures and the words but some books there were two separate people who did that job.  Yes, she was a very precocious two year old.  Yes, she was a genius (aren't they all?).

Me:  "By the big red barn, in the great green field, there was a pink pig who was learning to squeal..."

S: Mama why is the pig pink?

Me:  Because that is what color they are.

S: I saw a pig and it wasn't pink.

Me:  What color was it?

S: Dirty.

Me:  Ok...  "There was a great big horse, and a very little horse."

S:  Is the little horse the baby horse?

Me:  Yes.

S:  Is that the horse's Mama?

Me:  I think so.

S:  Maybe it is the horse's uncle.  Like Uncle Monkey (Mikey).

Me:  Maybe.

S:  I want it to be the horse's uncle.

Me:  Ok..."And every barn is a weather vane of course, a golden flying horse"

S:  Mama I think the horse on the barn can really fly but only at night time when the farmer is sleeping.  Like the tooth fairy.

And so our book reading went.  {I don't remember if it was these exact words, but I remember the flying horse to be pretty accurate).  I knew at that time that Sarah was going to be a writer.

As she grew, and started to "write" her own stories, Sarah was not satisfied with just scribbling what she thought were words and drawing coinciding pictures.  Every time an adult or older child entered our home, she would insist that they staple together a book of paper and transcribe her words. Sometimes she would draw the pictures, sometimes she would get Grandma to do it, but mostly she liked having her little collection of her books on her shelf and she would often ask me to reread them to her.  I knew at that time that Sarah was going to be a writer.

The years flew by and many times I would walk into Sarah's room and find her in bed writing.  She would often ask me to buy her notebooks from the dollar store.  One time we were working together to "organize" her room, and I got a good look at her bookshelf.  And there among the Freddy the Hamster books, were her notebooks, filled with stories and poems, descriptions of settings, family trees, and story outlines.  I had never really kept track of how much she was writing.  I knew at that time that Sarah was going to be a writer.

Looking on Sarah's desk one evening I saw a gift bag filled with little slips of paper.  Teeny tiny slips of paper with teeny tiny words on them.  When I inquired about the bag, she revealed that each paper had a name on it.  A possible character for a future short story, novel, or play.
I knew at that time that Sarah WAS a writer.

Now she is in college.  Her writing has been published - short stories and poetry.  She has been blogging for years - some of it for just herself, some of it to share with others.  She is finding a community of writers within the walls of her new college community.  I am not sharing this on my blog to merely brag about my daughter (I confide that that is definitely part of it), but also to emphasize that I feel that it is imperative for people to do what they love.  We have a limited amount of time on this earth (okay this part is a little about ALS),  and why should we waste it doing things that don't make us happy.  I am THRILLED that Sarah is finding herself through her writing.  Make space on your bookshelves my friends.  She is on her way.

Thursday, November 3, 2016

My Puzzle

I was diagnosed with Ulcerative Colitis when I was 16 or 17 years old.  I remember going to the gastroenterology department at CHOP.  I would always take the trip with my Mom, sometime by train, sometimes by car.  There was a McDonalds in the lobby of the hospital.  We didn't eat a lot of fast food when I was younger, but we got to eat there after my doctor's appointments.
Being a heterosexual teenager, I was more than interested in boys.  Ulcerative Colitis was a disease of embarrassment.  At CHOP there were a lot of residents, and I remember being absolutely mortified when the residents came in to observe some of my not-so-attractive testing, and listening to my answers about bowel movements.  It was kind of a dark time.
As I got older I saw a gastroenterologist in Red Bank.  I don't remember much about him other than I felt like it took forever to get to his office, and his office was in an old victorian house.  I always thought that house should be filled with family not medical equipment.
Then I began seeing another in Princeton.  I saw him for many years, but there was a point when I decided I needed another opinion.  And that is when I found Dr. Baig and Susan.
I say Dr. Baig and Susan, because in terms of my care they go together like peanut butter and jelly. Yes Dr. Baig was my gastroenterologist, but Susan was my first point of contact.  She is his nurse - a great organizer, knew my story from the beginning, always gave me a hug when I came in.  Both she and Dr. Baig asked about my family.  I always found Dr. Baig to be an exceptional doctor because he was an exceptional listener.  He always listened to my opinions, heard me out on things I found on the internet, and made me feel like an important part of my care.  Our oldest daughters are the same age and they went through the college search process at the same time.  At this time I was pretty ill, so I saw Dr. Baig often and we would often compare notes.  I saw Dr. Baig for more years than I can remember, and when we got to the point when he knew I needed different care, he recommended a Penn doctor.  I haven't seen him in a while.
Yesterday my phone rang, and it was Dr. Baig.  He had heard of my ALS diagnosis and was calling to tell me he was thinking about me and praying for me.  This kind, gentle, very busy man, who is not even my doctor anymore, took the time to call me.  I was so moved, and still can not believe he did that.
I spend a lot of time thinking about how my ALS diagnosis affects me and those friends and family that are closest to me.  I am thinking more these days about how this diagnosis affects the people on the edge of the puzzle.  These people have a different relationship with me than those who live with me or see me every day.  It affects everyone in the puzzle, not because of who I am, but because a disease like ALS has such a devastating effect.  And if it has an affect on everyone in my puzzle, does it also have an affect on the people who are not in my puzzle?  Like the lady in the diner who asked me why I was in a wheelchair and I said I am a person with ALS.  Or the little girl in Target who reached out to touch the bright pink wheelchair because she thought it was pretty.  Like the man in Wegmans who stopped to ask me questions about my brace and where I had it made, because mine looked so much more comfortable than his (he also liked the butterflies).  Or the woman in the parking lot who looked at me with such sadness and curiosity that I wanted to comfort her and tell her she won't end up like me.  ALS has an effect even on those people.  I have decided that even though that is sad, in a way it is good.  It is keeping this disease, or at least disability, in the public eye.  It might not be in the forefront of someone's mind, but seeing me out and about, living my life with ALS, might trigger compassion or curiosity that leads to goodness or a cure.***

I thank Dr. Baig and Susan for being such an important piece to my puzzle.

***Disclaimer - I have no idea if I am using "effect" and "affect" correctly.

Tuesday, November 1, 2016

Self Pity

And her mood can change.

Maybe I am bipolar?
(Rhetorical question).

Had a dream last night that the kids were little and we were playing this game that we used to play. We would run around the house - through the kitchen, into the dining room, through the living room, into the foyer, and back around into the kitchen.  And if we got far enough ahead of another we would hide in the doorway of the basement and scare the next person coming around the circle.  And we would laugh and scream and start again.  It was so much fun.  I miss those days.  I will never play that game again.

Nothing is done with ease:
Maneuvering the mouse.
Getting out of bed.
Getting into bed.
Walking to the bathroom.
Shifting on the toilet seat.
Putting on my socks.
Scratching my face.
Holding a utensil.
Sitting on the couch.
Getting up from the couch.
Cutting a bagel.
Spreading cream cheese on a bagel.
Holding onto a variety of things.
Picking up all the things I drop.
Loading the dishwasher.
Unloading the dishwasher.
Opening a water bottle.
Taking things out of the fridge.
Putting things back in the fridge.
Pouring iced tea.
Opening a pill bottle.
Holding hands.
Putting on chapstick.
Brushing my teeth.
Washing my hair.
Shaving my legs.
Changing my ostomy bag.
Getting in the car.
Getting out of the car.
Going up the steps.
Going down the steps.
Going anywhere.
Turning around.
Folding laundry.

I still do these things.  They are not done with ease, but with effort.  They are not done with comfort or familiarity, but with conscious and deliberate movements.

Today I am tired and cranky and riddled with self pity.  I will not apologize for my mood or my words.  I want another chance.