Monday, January 22, 2018

My dear friend

My friend died last week.
He had ALS.
I have to say that the great loss I feel does not feel compatible with how well I knew him.  I didn''t know him well. I spent time with him on less than a dozen occasions. I didn't know about his childhood or what his favorite ice cream was. I know that I liked him very much. I know he appreciated nature, and would roll around his neighborhood. I know that of all the people I have met with ALS, I felt that he was the most like me in the progression of the disease. I believe we were diagnosed at around the same time, and our onset symptoms were very similar. When he began to lose use of certain muscles, I did as well. I would be in denial if I didn't admit that his passing makes me question my own mortality. He also gave me the greatest compliment about my writing and this blog. He told me I was ''spot on'', and I was writing what he was feeling. 
This is not my loss, but a loss for his beautiful wife and family. Please send them light and love.
I will miss my friend.

Saturday, January 13, 2018

Thank You from Adam

The dust has cleared after ushering in the New Year…..Happy New Year everyone ...
Thought I would take an opportunity to thank some of you for the past year … in no particular order ….

Sarah, Gillian, and Ean … you guys rock.  Proud of you every day;

Family… for everything … the visits, the hugs, the company, the meals, the various forms of oral and moral support … the fundraising efforts … the bringing us so many things we’ve needed … the college drop off/pickups … just being around for us … just to name a few;

The Sharon School gang of “Wonder Women” (and a few men) …. your visits to see my Wonder Woman … bringing us meals … visits by your kids … your inclusion of Deb in activities … your fundraising efforts …. showing up …. your flat out awesome display of love and support;

LISA SODEN Lisa Soden Winer ! … no words. XOXOXO

The Lawrenceville neighborhood gang who continue to visit, bring meals, flowers, and love to our home … you are a loving and supportive group beyond compare … thank you so very much for your fundraising efforts … a special thank you to the Sunday “Breakfast Club” (and Laura Ramsey Ari for that buffalo chicken dip recipe) …. love you guys;

ABIGAIL ROSE Abby Rose ! … no words. XOXOXO

The Washington College gang … you will never cease to amaze me … thank you so much for your support … really look forward to seeing you guys again soon … your visits have been special;

My Rutgers family and friends including the Delta Squamish Chapter of Chi Phi … your love and support is a blessing;

Stephanie Pawson Howe of Comfort Keepers… no words will ever be enough to thank you … you are our angel;

MARCIE GOLDWATER  Marcie Goldwater ! … no words.  XOXOXO

Claudine, Pasquale, and Jen of Bijou Salon, Robbinsville …. a really heartfelt thank you for your heartfelt gesture;

The Ben Franklin Swim Club Board of Trustees and our swim club friends …. your love and support and your fundraising effort was truly amazing and we can’t thank you enough;

My local baseball coaching friends … thanks for the company and nights out at our local watering holes for no reason at all … best medicine ever;

The LHS Swim Team family … it’s always nice to see you all at the meets … your love and support is deeply appreciated … go cards! ;

The LHS music family … your support for our family has been amazing and we can’t thank you guys enough;

My Fisher Middle School guys night out group … means a lot gentlemen … looking forward to our next all you can eat wings night;

The PPH Patriots travel baseball team family from Lawrenceville, West Windsor, and South Brunswick … you guys have been a big part of our family’s lives over the past few years and the heartfelt support you have shown our family is appreciated more than words can say … you are an amazing group and we are lucky to have found our way into such an amazing group … see you soon for the winter workouts;

The Roosevelt friends … thank you for all the love and support you’ve shown Deb and our family since the dawn of time … thank you for your visits and all the supportive posts I’ve read on fb … you guys rock;

Families that have always felt like second families regardless of how often we saw you or spoke to you …. The Franks, the Drukers, and the Lubitz gang …(Arthur Frank, Pamela Lubitz, Diana Druker ) much love;

Jodi Gold Stephens, the Robbinsville Mayor’s office, and all those contributing to the bath renovation in our garage …. Wow! This was a gift beyond compare;

My previous life’s real estate office gang … in particular Edward Allison  and Gale Allison … you guys have always meant a bunch to us but this past year your support of us has been just ridiculous … still want to schedule that outing …. be in touch soon.  OOO;

The Men’s Club and Sisterhood of the Har Sinai Congregation.  We are deeply grateful for the support you have given our family;

Hmmm… what if you don’t fit into one of our special groups? What if you used to be in one of those groups, but aren’t anymore?  Hmmm?  Big thank you shout outs:  Ivy and Mike Cohen, Cheryl, Tom, Gwyneth, & Tristan Curbishley even though in your in a group or two!, Melissa and Paul McCormack, the Miloszars, The whole Meth family, Michelle and Dave Everman, the Gubernicks, Brian Flynn and family, Maureen and Steve Kaelblein, Kate and Mark Andrew, Mike and Toni Marion, the Featherstons, the Foltinys, the Hlewickis, Delcampes, shit now I know I’ll forget somebody …. Everyone that signed up to drop a dinner off … wow I’ve needed that …. Thank you soooo much! …. Anyone that lended an ear or gave me a hug …. Ok, done … I think;

And even though they won’t see this …..The staff of the ALS Clinic at the University of Pennsylvania … hell of a group there.  Wish we didn’t need them.

Friday, January 12, 2018

Getting There (Guest Blog by Sarah)

My mother asks me to write a guest blog post about what it is like to have a parent with ALS. I joke that I could write a book.  I consider it. I suddenly feel so far away, the feeling of being in South Hadley when my little sister helps my mother use the bathroom. I cry in Panera, and change topics seven times. I cry a lot! And everything I write is so angry! I’m a little too honest. I get that from my mother. I used to think it was embarrassing, but I’m starting to realize that the whole time (!!), she was as brave as one day I strive to be. And please don’t tell me I am brave… (This happens often although it is well meaning, often up there with telling me that so-and-so died from ALS. It’s not intentional, but it hurts.) Sometimes it’s more affirming to know that I’m getting there.
So, on the topic of having a parent with ALS…You know that feeling when it’s the first time you look in the mirror and you are growing up and going to the school dance with someone you don’t really like but it’s a grown up thing to do (you think), and for a brief second you look in the mirror and you look like your mother? You know that feeling, when saying “I love you”for the first time to a romantic someone and meaning it, feels like stepping into grown up shoes? It’s the underlying sadness of that, I think. The sadness comes from what my sister and I refer to as the “timeline”. (My final paper for my class at Hampshire was on personal trauma and its association with time, with references drawing to my family, Alison Bechdel’s Fun Home, and Shakespeare’s Hamlet.) Also it’s confusion, maybe. Selfishness…Guilt (distance, both emotional and physical)…Fear…Love. So much love, and all its unexpected complexities. 

A messy OUTLINE of SELECTED TOPICS for the book about having a parent with ALS that I will probably not write unless it has poems and I am old(er), vague, in somewhat chronological order, and with no attention to grammar:

Ulcerative colitis.

Mom’s leg brace (“Phoebe”), and Mount Holyoke Accepted Students Day. Falling behind.

The fall in the bathroom at Aunt Kathleen and Uncle Lew’s beach house in Ocean City. It’s like the movie about Stephen Hawking, you know the part where he first falls? We should have known then. 

Dad’s face in the waiting room, waiting for mom to come out of surgery. 

The night before I leave for college move-in. Buffalo Wild Wings picnic on Mom’s bed. 

September 2016 
Mom calls me to tell me she has ALS. I cry with Clara in the stairwell of Buck (her dorm). She is sick and I’m crying, but she makes me laugh.
I tell Christina (best friend, now roommate), then I tell our other friends at the time. Gillian told me to write an entire blog post on this moment, when the response I got from someone was “at least there’s a cure, so she’s fine” and a Web MD read aloud of what happens/what will happen. I’m still angry, but she’s not worth it.

The Election. 3am breakfast food at a Denny’s in Chicopee. A lot of fear. Backlash. A poem about the day after breakfast food. That’s a whole other blog post. 
19th birthday, and the realization of having to leave the past 18 years behind. Deciding to grow up, because I was fighting it. Accepting change. Sleeping on the couch during Thanksgiving. An accessible bathroom in my parents’ room. A stair lift. 

A winter break Facebook post telling people not to ask me and my siblings about our mom, with a link to her blog! A DM from people I didn’t know telling me to stand up for her due to a commenter seeking to make it about her. I never sought more opinions from so many different people close to me about where to direct my anger. I still haven’t figured that out.

The fight with my mom about letting me be upset over her dying. The way my dad yelled at me for making her cry.

Live to Love bracelets. Delivered meals! I am so grateful.

My first more “serious” girlfriend, and my fear of talking about my mom. How I wasn’t ready. How this affected so many of my new relationships. I was forming a new life! New friendships! A lot of (almost nihilist) fear of abandonment and trust issues. 

“Well-Meaning Bingo”. There’s a lot of dark humor between me and Gillian.

A map/campus tour of places I’ve cried on campus. A really bad first year GPA. 

Assistant Manager at my summer pool job. A whole lot of good people. A whole lot of phone calls to Hannah. A whole lot of thinking about the type of parent I would want to be. I haveproven to men that I can tie a pole to another pole with a bungee cord by myself. (Mount Holyoke is wonderful and I am learning to be confident in my leadership, something that I carry out of the bubble when the real world sees me as “woman”.)
Once, I work the dive meet snack shack with someone who did not know that the fundraiser the pool was doing was for my mom. It is an exercise in heavy small-talk, discomfort in spitfire questions that I answer with bluntness and an understanding of ignorance, with which I have practice in many issues. (This year’s top Sarah educational programs: ALS, queer issues.) She is also a young mom, and I tell her about some children’s literary magazines for her daughter who likes to read and write. She tells me about how her father died, and tells me that the grief passes. It is oddly comforting now, although I was not ready for it at the time.

Mom comes to Sophomore move-in day and there is no elevator in my dorm. I did not plan my second year of college around my mom going into my dorm room once, but I wonder if I was supposed to. I feel like there are lots of “supposed to”s that I am not meeting.

I cannot wrestle the courage to say my mother’s name during the Mi Shebereich, the first JSU community Shabbat.

I cry to Christina about my brother. I had a fight once about my mom choosing not to let me bring up the Boston bombings at the dinner table because she wanted to protect my brother, who was old enough at the time to hear about it from his classmates. I asked her if she would rather he get misinformation from his friends then learn from her. Now, Gillian tells me that I underestimate him. I left for school and it’s true.

I cry for my father. I could write an entire chapter on my father!!! 

I panicked in the Apple Store when I thought that the voicemails I saved of my mother’s voice were gone forever. In recovering them, I had also saved the voicemail of my sister alone at home, when my mom had to go the hospital and Ean was with Dad at a baseball thing. I forgot.

The teachers dressed as Wonder Woman. There is goodness in this world, I promise you. 
“Striving for goodness while the cruel men win” -Japanese Breakfast. (The song is “Soft Sounds From Another Planet”.)

In my partner’s bed, I awake from a dream in tears. 
The dream: My entire extended family goes to Gillian’s band concert at LMS for some reason. It is a fundraiser for a trans rights organization, and when the band director explains this, one of my relatives scoffs and leaves the auditorium. I follow her and we fight about how disrespectful and wrong she is. Later, I am with my mother in the kitchen. She is standing at the sink, washing apples, and is telling me how proud she is of me for doing the right thing. Standing. I awake crying because I realize it is not real.
I can tell my partner anything. I am not so afraid. I am happy.

Another winter break. A trip to the GYN by myself for the first time. A funny exchange with the GYN yelling at me about some expected heteronormative stuff and then apologizing endlessly when I tell her who I’m dating. I do not put anyone for the appointment results contact because I do not know who I would put. 

I get claustrophic being home, with all the visitors in the house. I do not want to tell my mother because it’s not her fault. So, another fight. The horrible wailing through the wall. My father asks me what I want my relationship to be with my mother when she dies. I call Christina, and then my partner after. 

A chapter entitled: Parents and Their Children
This semester, I have met 2 of my peers whose parents have died. I have met 3 peers whose parents are dying. I do not feel so alone anymore.

My mother asks me to write a blog post. It’s way too long, but not long enough. My mother asks me to write her eulogy.

We come to now.




Monday, January 8, 2018

Box

People living with ALS can get to the stage where they feel locked in.
It's called Locked in syndrome.
Pseudocoma.
When you can feel touch and all your muscles are paralyzed except for eye-blinking and horizontal eye movement.
There is nothing wrong with your cognitive abilities and you are essentially ''locked in'' your non-functioning body.

I imagine it's like your body becomes a padlocked pirate's treasure chest buried in the dark depths of the ocean. Your thoughts are glittering inside; you know that they are there - everyone knows that they are there - but there is no way to get to the jewels.

It is my hope that I die before I get ''locked in''. Based on some choices I have made for my future care, it is highly likely I will. Getting ''locked in'' scares me more than dying.

Right now my body is more like a cardboard moving box than a padlocked pirate's chest. Most of the time the box is open and through my limited speech, or the iPad, help from people who know me well, or context clues, you can understand me. Sometimes the box closes. But not with packing tape, but rather the way you close a box when you don't have tape.  You fold the flaps within each other, leaving a small open rectangle at the top so you can peek in. I am tired, my body folds, and communication is so difficult that I only put forth enough effort to get my basic needs met.

Gillian told me she went back and read one of my blog posts from last January. She said I write differently now. More succinct. That makes sense.  I try to conserve energy, consciously or unconsciously, even through my writing. However I am trusting my writing and this blog to be a guarantee that my box will stay open even just a bit. If my body locks me in, this blog will be here to look back on.

Thursday, January 4, 2018

Thoughts from the recliner chair

I see faces in the flowers of my living room curtains. The buck-toothed, large face with the unibrow. The Rolling Stone tongue face with the squinty eyes. There is a cyclops in the leaves. When I was a child I could see characters in the blue laminate of the bathroom vanity. Two men watching a baseball game; one with a large hook nose and full facial hair. The other with a protruding chin and John Lennon glasses. I wondered if anyone else could see what I saw. I never had the nerve to ask.

My daughters are in the room with me. One snuggles up with the dog on the couch. The other is sprawled out on the loveseat, her feet dangling off the end. Both are typing on their laptop type devices, fingers flowing quickly over the keyboards, deep in thought. I wonder what they are thinking about, what they are typing. I open my mouth to ask, but I quickly close it. Silence is a better choice right now.

I think about the year ahead and my blessings from the year just past. I think of the blessings in singular words - like a list - strung together like paper chains I used to make with my students, hung all the way around my classroom.

Generosity   Kindness   Affection   Family   Friends  Large-gestures   Small-gestures   Visits   Dogs

Marie   Thanksgiving   Kids   Adam   Dinners   Chocolate   iPad   Support-group   Doctors

My son walks into the room, his hair wet from a shower, his body smells of soap and chlorine. He sees my eyes open and leans down to kiss my cheek. I breathe him in. He squeezes his tall lanky body into the small space next to the dog on the couch.  She lifts her head and gives him the obligatory sniff. I add a word to my blessing list -

This-moment.                  

Friday, December 29, 2017

self reflection

I unpack the memory of last night
Slowly and methodically
To make sure the tears stay in.
I pry back each corner carefully
As to not reveal too much at once.
I think about
What was said
How it was said
Why it was said.
One.
Word.
At.
A.
Time.

I remember -
All I can do is listen
And cry.
The words come towards me too quickly.
My answers bubble in my throat
Caught between the tears and the phlegm.
I try to explain but                                                                                                                                        
The frustration is overwhelming.
The wailing is coming from somewhere deep within me.
My mouth is open
The sound
Fluctuating between loud and silent.
Unrecognizable
But yet cathartic.

Today -
Have I done it all wrong?
What should I have differently?
I don't know any other way.
Other words run around my head.
Self examination.
Self reflection.
Self absorbed.
Selfish.
This is not just about self.
I forgot.
I'm in this survival mode
And I forget that other people,
Willingly or unwillingly,
Are along for the ride.

Tomorrow -
I will think.
I will remember.
Ask.
Not assume.
Collaborate.
Appreciate.
''Do you accept them for who they are?''
Words from long ago
Coming forth
Ringing in my ear.
I do.
I will.
I try.

Sunday, December 24, 2017

Sleep

When I was a girl sleep never came easily to me. I would toss and turn, walking my feet up and down the walls, periodically shouting out "I can't sleep" so the whole family could share in my woes. I would take the flashlight under my blanket - usually reading Nancy Drew or something by Judy Blume - until my parents caught me. I would think about my day, write stories in my head, and count how long I could hold my breath. One Mississippi, two Mississippi... Sleep would eventually come, but it would be hours after my official bedtime. And of course I never wanted to get up in the morning.

Now night sleep does not come easily to me. I can not toss and turn or walk my feet up and down the walls. So I think - listening to Adam breathing on my right, Sonky snoring on my left, and feeling the warm weight of Jackson on my legs. I think about my day, my kids, and what I will do tomorrow. I make plans, write blog posts in my head, and think about my limited future. Sometimes I cry. Sometimes I pray. I write elaborate thank you notes and plan on texts or emails I will type the next day. I listen to my shallow breathing. Sleep eventually comes and I can now sleep as late as I want.

I remember conversations. My visit to my school the other day brought about some good ones (funny how I still call it "my" school when I no longer teach there).

Kindergarteners walking by seeing my parents behind me:
"Do you watch her?'', a boy asks my Dad.
''No, she watches us.'', responds my Dad.

And...

''What is wrong with you? Do you have broken legs or something?''
''Something like that.''
''I don't have broken legs.''
''I can see.''

And...

Adult conversations that friends have about normal things. I got caught up on kids and the mischievous things they have been doing. I saw wedding pictures, pictures of new homes and new beaus. I heard about adult children with their first jobs, and new grand babies. I glowed in the normalcy of such conversations.

And...

I saw the fourth graders as they were walking to lunch. The last class that I taught full year. Their faces are the same, but they are all so tall! Many approached me for hugs, with enthusiasm; some with apprehension. All with smiles.

I lay in bed thinking about a conversation I recently had with my friend Lisa. I was feeling particularly sad and she was encouraging me to keep fighting.  I responded with, I don't think I am fighting in as much as living. But the more I think about it, maybe I am fighting. When I lost normal hand function, I fought to find another way to type my blog - with a stylus tool and my knuckles. As I lose my voice, I fight to be heard by using my predictability app on my iPad.

I am fighting.