Monday 2.13

Hi Everyone,

I wanna try something a little different today. When I lived down in Florida, I was given the opportunity to distribute Motivational Monday emails to my team of Literacy AmeriCorps members every week. Monday after Monday, I’d scour the internet for positive messages, linking them to current events and attuning the messages to, what I felt, was the current emotional landscape of my community of service members. It was a small gesture, but I enjoyed it so much, and actually received a lot of positive feedback in return.

Since my blog came into existence back in 2014, I’ve spent a lot of time talking about the hard stuff in life. It seems like I’ve always been good at talking about the hard stuff. But I’ve had an awakening recently and I’d like to experiment.

Starting today, I’d like to turn my blog into its own Motivational Monday archive.
And I’d like to expand my audience to you.

So, if you’re interested in reading short devotionals from a hippie chick living in Northwestern Pennsylvania, you got it.

I’d like to start off this weekly practice by talking about themes, specifically in relation to the new year. Being that today is February 13th, and we’re already way past New Years, this post might seem irrelevant. But I’d like to challenge you to think about it anyway. Besides,  many of you probably started off 2017 with a few resolutions in mind, and maybe they’re still around motivating you . . . or maybe they’re not.

But I’m not here to talk about resolutions today. Today, I’d like to ask you a different question. As many of my previous Motivational Monday-ers know, I subscribe to a website called DailyGood: News That Inspires. And it was while browsing this website that I found an article with the following questioning title: What Will The Theme Of Your Life Be In 2017?

You see, what’s cool about humans is that we are all storytellers. From childhood through adolescence, we are constantly creating our stories. And our stories, in turn, create ourselves. Kira M. Newman, author of the online article says,

Incorporating our goals into the larger narrative of our life can give us more energy to pursue them, and to become the person we want to be . . . not only do stories tell us who we are, but they can also become resources we draw upon in times of difficulty. Recalling stories of strength or resilience helps us confront new challenges, reminding us of how we solved problems in the past. Telling stories can connect us with others, creating intimacy and strengthening relationships. The best stories provide meaning and purpose by linking seemingly random events and experiences into a progressive journey.”

 

So, my friends, I ask you: what will your story theme be in 2017?

Maybe you’re someone who really wants to rekindle/strengthen friendships – a theme of connection.
Maybe you have a lot of goals for your next career move in 2017 – your theme could be professional growth, or focus.
Maybe you’re finally ready to go back to school, or just want to take some classes in a subject you’ve always wanted to explore – your theme could be learning.

Whatever your theme is, I challenge you to incorporate it into your daily routine. Practice your theme often, and reward yourself for the time you spend dedicated to it.

As for me, well, I’ve spent the last 23 years being my own worst enemy. So my theme for 2017 is love: self-love, intimate love, platonic love, universal love.

I have a feeling that this chapter of my life will be the most fulfilling story yet.

 

Much love.

 

The link to the full text article What Will The Theme Of Your Life Be In 2017? can be found at http://www.dailygood.org/story/1475/what-will-the-theme-of-your-life-be-in-2017-kira-m-newman/.

 

“Whatever you can do or dream you can, begin it. Boldness has genius, magic, and power in it”
Johann Wolfgang von Goethe

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Dear Dad,

Over the years, there have been many times that I asked mom why you two ever got married. “You don’t even like each other,” I’d say. She always laughed, and even though she never confirmed nor denied my statement, she ALWAYS made a point to say, “You have a really awesome dad, Gabby.”

And she’s right. Growing up, you never complained about watching me on weekends that mom travelled for fitness conferences. When Nelllee came over for sleepovers, you always made us breakfast and lunch menus where we’d circle the food items we wanted, and then you’d bring it out to us on trays while we sat on the living room floor watching SpongeBob. During the summer, we’d play whiffle ball and bat-mitten in the yard and occasionally throw around a football or a baseball. During the fall, you’d push me on the swing and I’d jump off into a pile of leaves you raked perfectly below me. During the winter, you’d tow me on the pink sled over to the big hill in Woodcock Boro, and watch as I entertained myself for hours flying down the hillside.

As I got older, you were always my right hand man and my best buddy. On Mondays, you’d come to Aunt Dot’s after skating practice and we’d all have dinner together; a tradition we upheld for ten years or more. On Tuesday nights when Sammy babysat me after school, you’d always let me eat extra Oreos or ice cream bars when you got home from work and mom was still teaching her exercise class. Sometimes on Wednesdays, you’d pick me up from Morgan’s on the days I rode the bus to her house after school. On Thursday nights, you faithfully picked me up from dance and took me to Taco Bell where I faithfully ordered two soft tacos and a fountain drink, and you ordered a chicken burrito or a crunch wrap supreme. When mom was out of town, you drove me to skating practice at six a.m. on Sunday mornings, and then took me to McDonald’s for a hearty post-practice breakfast. You came to every basketball game, dance recital, skating competition and orchestra performance over the years, always with flowers in hand. As I reached junior high, you introduced me to all your favorite classic rock songs, and years later, we created our own secret music club where we’d quiz each other’s musical knowledge while listening to WUZ 94.3 in your car. Every Christmas, you’d buy me a miniature ornament from Hallmark and wrap it up in newspaper (usually the comics section). It was, and still is, the last present I open every year.

As I reached high school, you always made sure I never left the house without at least 20 dollars in my hand. “Just in case,” you’d say. The summer after my senior year, you took me, mom, Zoey and Amanda on vacation to Wildwood, NJ and treated us to an unforgettable time. And when I left for college, you took me to the grocery store and helped me stock my mini fridge every time you drove though Indiana for work. My sophomore year, after I changed my major from English Education to English Pre-Law,  you supported me through every academic success and accolade. You read every theoretical analysis and came to every award ceremony. Through every move, transition, challenge and success, you were there.

What I’m trying to say, dad, is that everything you did, you did out of pure love and generosity. During this time, it is my greatest hope that I showed you as much love as you showered me with over the years. I hope, daddy, that I can help you live the life you always wanted to live. I love you so much dad. Please, let me have the honor of taking care of you.

Love you D,

 

G-Bird

 

Waste hours

There are many things in life that, once used, cannot be taken back.

One of these things happens to be time.

Time seems to be a constant theme in my life lately. Once a concept that seemed so endless and abundant, now has become limited and scarce.

Here’s the thing about time: it’s intangible. It exists only through man-made quantifiable measures like months, years, hours, minutes, seconds, milliseconds and so on. When my dad was first diagnosed with ALS in December, time scared me. The unforeseen amount of time I had left with him left me feeling helpless and paralyzed by fear. Time was suddenly running out.

The other night, I found myself reading another chapter of Sarah Caldwell’s book titled Just to Make you Smile (previously mentioned in my last blog post). While I was reading, I concluded that the book was probably something people discovered and reflected over not during a loved one’s diagnosis, but after their passing. In that moment I felt fortunate to have it. Because here’s the thing, I don’t want to wait until my dad is gone to read it. I want to learn from this sweet girl’s heartbreaking experience, and I want to take her advice. I want to do the best I can while my dad is still here, and we have time.

So, I surrendered myself to time that night. I realized that I don’t have control over it – none of us do. We could be here today and tragically gone tomorrow. It’s not something we ever like to talk about, but it’s true. Our time here is as mysterious as it is sacred. Unfortunately, sometimes it’s only when we are faced with situations like my dad’s that we start recognizing the power of time. Fortunately, my experience has helped me gain insight that I’d like to share with you now.

For many of you that know, (or for those of you that read my blog post titled If you want me again look for me under your boot-soles), my friend Doug Kallin passed away tragically a little over a year ago. Shortly after his death, I met with Doug’s best friend to talk about the heartbreaking circumstances surrounding his passing. During our conversation we talked about the shock we felt, details of Doug’s life, and his music. You see, Doug was a musician and had been studying Music Education at IUP before his passing. Looking back on it now, I must’ve been in the right place at the right time because it was during this conversation that I learned about one of Doug’s songs called “Wasted Hours.” His friend told me what the song’s meaning meant to him and when our conversation ended, I wrote the phrase “Waste Hours” along with the initials D.K. on a sticky note that I put inside the top drawer of my desk at school. I’d come across it from time to time, but it wasn’t until the other night, after reading part of Caldwell’s book, that I actually listened to Doug’s song for the first time.

It began:

If I knew then what I knew now,
Things, they would’ve been different somehow.
Feeling nostalgic I realize,
Those days were the most I felt alive . . .

 And then the chorus came:

 And all the wasted hours,
If I could, I’d waste them again . . .

 There it was. Wasted hours. It was so simple, yet in that moment, that phrase held more meaning to me than anything else in the world.

So here’s what I did:

In honor of Doug’s song, I took the sticky note that’d been hiding in my desk drawer (now residing in my apartment in Florida) and I stuck it to the back of the parking pass that hangs below my rearview mirror inside my car. Every time I get in, I read its phrase:

Waste Hours
D.K.

And what does it do? It reminds me that time is scarce. It reminds me to spend time, or waste hours, with the people that I love. Because the truth is, we are already on a predetermined time schedule, and we don’t know how much of it we have left.

My dad’s illness has taught me that we are all so fragile, and time has no mercy.

So please, if there’s something you want to accomplish, if there’s people you want to spend more time with, if there’s an apology you need to make: do it today. Please, don’t wait.

 

xo.

 

 

To listen to Doug’s song, go to https://www.youtube.com/watch?v=-ZHxjr_AmlE

Triggers

It is truly impossible to understand what it feels like to have a dying parent until you experience it yourself. I offer these stories as pieces of my heart to those who wish to try. Bear with me, the pieces will connect.

Last night, my roommate and I were laughing and carrying on after a long day of lounging around on the couch and eating all kinds of Memorial Day foods, when the TV show in front of us cut to a commercial.

A matured female’s voice filled our living room:

“What does it take to stay close to a dad that’s oceans away?”

My face that was curled in a grin fell instantly.

There I had been, carrying on, temporarily distracted by the enjoyment of Chrisley Knows Best and BBQ ribs, when reality came crashing back down. It was a Father’s Day commercial sponsored by Paper & Packaging. Thoughts in my head suddenly emerged like hidden ghosts:

How many Father’s Days do I have left with my dad?
Is this what it will feel like when he’s gone?

It was with these thoughts that I, for the first time in my life, finally understood what it meant to witness someone’s face drop. And although I couldn’t see my own expression, I felt it. One moment I was smiling, and a split-second-later I was staring at a little boy on the TV screen, my face somber as I watched him create a makeshift card. “Happy Father’s Day” it read in scribbled crayon across the front.

And then I realized something: these are my new triggers. Anything father-related instantly brings tears to my eyes. But it’s not just generic father-related things; it’s reminders of the small idiosyncrasies that make my dad, my dad.

A few weeks ago, I was driving in my car and listening to one of Peter Frampton’s live albums on Spotify, when someone in the crowd suddenly whistled really loud during the performance of “Do You Feel the Way We Do.” Within seconds I began to cry. Why? Because growing up I heard my dad whistle just like that all the time: during figure skating competitions, dance recitals, calling the dog in from outside, the Eagles’ concert. I could always pick out that high-pitched whistle wherever I was. As I listened to the song, memories started flooding in: good ones, bad ones, sad ones. I realized I was crying because this disease my dad had would take this ability away from him. Piece by piece, ALS will rip away my dad’s special qualities that made him the man I always knew and loved.

So here’s my question: What does it take to stay close to a dad that has a disease like ALS?

You might be thinking, why is that a question? Well, because it’s fucking scary. And it’s fucking hard. Sometimes it’s all I can do to muster up the courage to call my dad and hear his slurred speech on the other end of the phone. Why? Because he’s my dad and my dad is my hero. As children, we grow up thinking our parents are invincible, and it’s our worst nightmare to one day realize that they’re just as fragile as we are.

BUT, let me tell you something. If I’ve had any saving grace to all my unanswered questions lately, it’s because of a dear friend’s thoughtful gesture. Last week, I received a book in the mail entitled, Just to Make you Smile: a teenage daughter’s reflection on loving and losing her father to ALS. In her book, young author Sarah Caldwell reflects on what it was like watching her father become handicapped by Lou Gehrig’s disease when she was just sixteen years old. Along with describing her own personal experience maneuvering through the dark and scary path post-diagnosis, Caldwell also offers insight into occasions that became understandably altered by the presence of ALS. In chapter four, she describes one such instance during her family’s first vacation to the beach after her dad’s diagnosis. At this point, Sarah’s father was becoming increasingly weak, and spent most of their vacation in the family’s condo sleeping. But Sarah and her mother were determined to include their father/husband in their daily activities.They decided they were going to get him in the ocean. Reflecting on this experience, Caldwell wrote:

We got him up to his waist and my mom and I held him tightly as the waves washed up against us. I saw a subtle smile emerge on his face. He was in the ocean. It may not seem like a huge deal, but for him, it was a refusal to give up. For me, it was the beginning of my doing everything I could to help my dad live the life that he wanted to (59).

There it was. After all these months of being immersed in a completely new situation with zero answers to my endless questions, this sentiment written by a seventeen year old suddenly answered everything.

What does it take to stay close to a dad that has a disease like ALS?

Well, first it takes courage and perseverance. It will take me doing everything in my power to give my dad the life he wants to live. If he can’t whistle, I will whistle for him. If he can’t walk, I will be an extra support for him. If he wants to go in the ocean, I will stand next to him as the waves crash around our feet. And most importantly, if he can’t be strong, I will be.

My dad’s disease has taught me that time is one thing we can’t get back. And, surprisingly, I no longer have time for the trivial things that once consumed me on a daily basis. Most importantly, I don’t have a lot of time for fear. I will live the life I was meant to live, with my dad while he is here, and for him when he is gone.

xo.

 

Caldwell, Sarah. Just to Make you Smile: a teenage daughter’s reflection on loving and losing her father to ALS. Boynton Beach: Sedonia’s Magic Words, Inc., 2015. Print.

 

I’m always going to be here for you

As I sit here in my office at Forest Hill H.S. the day after graduation, I can’t help but take time to digest and reflect upon the momentous occasion that was yesterday. As a Graduation Coach serving with Literacy AmeriCorps PBC, graduation is not so much what we’ve been waiting for, but rather, what we’ve been working for.

On Thursday, May 26th at 12:00 p.m., I was able to witness my cohort of AmeriCorps students walk across the graduation stage and shake hands with Forest Hill’s Principal and Assistant Principal, the Superintendent of Palm Beach County and various district personnel. Dressed in my cap and gown that signified myself as an IUP alumna, I sat in the final chair of row two inside the South Florida Fairground’s Expo Center and watched.

And then something beautiful happened.

Before I dispel the beauty of the events that occurred yesterday afternoon, let me just preface by saying that being a Graduation Coach has been hard. So freakin hard. I entered this school as a “nobody.” Being only 4-5 years older than most of  my learners, I was easily mistaken for a student by Forest Hill faculty members throughout my first few months of service. I took on identities such as “Miss,” “the lady that took over Ms. Parham’s* old office,” “Ms. Cornell’s* look a-like,” and my personal favorite, “the white lady.” As a third party member serving within the School District of PBC, it took me a while to find my identity as a Falcon. But eventually, my role as Miss Bradshaw inside the school became more comfortable, and I not only worked with my selected group of students, but any student that walked into my office. I felt like it was my duty to serve not just my community of learners, but the school as a whole. Eventually, it felt like everyone at “The Hill” knew my name, and as students started to feel safe inside the four walls of my office, I knew I was finally doing the job I was meant to do.

So yesterday, after nine months of worry, tears, heartache, laughter, failures and success, I was given a gift. Because of my position at the end of row two, I was able to watch as every single Forest Hill senior walked passed me and made their way to the stage. As a Graduation Coach, I could not have been given a more perfect opportunity to do what I’ve done all year: love my students. As seniors walked by, I took this final occasion to reach out and squeeze their hands, wink at them, pat them on the arm and leave them with a smile only a proud parent could wear. I was so damn proud of them. My babies had finally made it.

When the ceremony concluded, faculty and students made their way back to the holding room adjacent to the expo center and turned in the graduation gowns that signified our ending together. Once more, I found my students (cohort and non-cohort) and hugged them tight. One student in particular, David (you might remember him from an earlier blog post), said to me as I squeezed him in an embrace “Miss Bradshaw, you’re still gonna be here for me right? I still need your help.”

I closed my eyes and inhaled the conclusive validation of my efforts.

 

“Of course sweetheart,” I said. “I’m always going to be here for you.”

 

 

xo.

 

*names have been changed to protect the identity of faculty members

 

Liminality

I find myself sitting on the edge of my bed a lot these days. Doing what, I’m not entirely sure, but the majority of it has to do with sitting and thinking, or maybe just sitting and existing.

And what is it about sitting on the edge of one’s bed that makes it feel like such a universal action? We’ve all seen it: a character on television plops down on the edge of his bed, head in hands, sighing. A pregnant woman holds her belly as she rests on the edge of her bed, thinking.

Being on the edge, I’ve come to notice, is a very noncommittal space. You’re neither taking initiative to stand up or lay down, but rather, are just sitting in a state of limbo in between your decision. And when you think about it, isn’t that kind of symbolic of life in general? Aren’t we always deciding between one thing and another? And when we can’t decide, we just kind of hang there . . . in between  . . . waiting.

I’ve found that the most stressful state to be in is that of indecision. And the more indecisive I am, the more I find myself sitting on the edge of my bed.

But maybe it’s comforting to know that there is a physical place where life can still exist in limbo. When I was a senior in college, I happened upon a word for this state of in-between in my capstone English course: Liminality. I remember jotting the word Liminality down in my journal that day, thinking it entirely all too fitting for a senior in college (especially one with major post-graduate life decisions ahead of her).

Week after week, it would come back to me. I started writing this word at the top of my weekly “to-do” list just so I wouldn’t forget it.

Liminality, Liminality, Liminality.
I needed more.

So I did some research. Liminality, in its simplest form, is a type of transition period. From an anthropological standpoint, the word was used to describe the disorientation that developed during the middle stages of various ethnic rituals. In the article entitled “What is Liminality?” author Charles La Shure further describes this idea:

“The initiate (that is, the person undergoing the ritual) is first stripped of the social status that he or she possessed before the ritual, inducted into the liminal period of transition, and finally given his or her new status and re-assimilated into society.”

If that doesn’t make sense, think of it as the ambiguous stage that occurs in an initiation ceremony. Someone that becomes the president or leader of an organization no longer holds the same responsibilities they once did as a general member. However, they won’t hold their new title until the ceremony is over. Liminality is that uncomfortable, who am I and what do I do now, feeling.

About two years ago, I met a man at a career-writing workshop that (without even knowing it) encouraged the feeling of Liminality. Relishing in that feeling, he said, is when you grow the most. It means you’re doing something right. Although he was presenting on Grad School applications that day, I think the message can be easily applied to most situations of uncertainty.

Right now, as many of you know, my family and I are dealing with my father’s diagnosis of ALS. The day my mom told me that our worst nightmare had finally come true was December 24th, 2015. That awful day, I stared at myself in the bathroom mirror for what felt like hours, boring holes into myself. I was looking straight ahead, but I didn’t recognize the person staring back. I was stripped of my identity.

Liminality.

At this point, many of you are probably thinking, but Gabby, you’re still yourself. You’re not the one who was diagnosed with ALS; it’s your dad. And you’re right. I was (and am) still a daughter, still a college graduate, and still a person existing on this earth.

But what was my identity as a daughter/college graduate/person existing on this earth whose father was just diagnosed with a fatal disease?

I didn’t have an answer, so I lost myself.

For weeks after my father’s diagnosis I didn’t know which way was up and which way was down. Everything I thought I knew and understood about the world was suddenly gone.

Am I still Gabby, or has someone replaced her? Who am I and where am I going?

Without realizing it, my beginning state of Liminality was also the beginning state of my rebuilding process. I was the initiate La Shure outlined in his article. Literally, started from the bottom now we . . . you know the rest.

In all seriousness though, rebuilding from my initial state of Liminality hasn’t been easy, and my journey has been nothing short of brutally painful.

Here’s kinda what happened:

The worst or “stripping of my identity:”

  • I found out my dad had ALS in December.
  • I almost quit my service year with AmeriCorps.
  • I cried (like falling on the bathroom floor sobbing).
  • I went back and forth about whether I should stay in Florida or move home.
  • I closed myself off to my students.
  • I was frustrated.
  • I found God.
  • I lost God.
  • I contemplated suicide.
  • I cried.
  • I broke up with my boyfriend.
  • I cried the most.
  • I felt empty.
  • I regretted every decision I’d made.
  • I joined a new gym and quit 2 weeks later.
  • I lost 10 pounds.
  • I slept. A lot.
  • I started counseling and then quit counseling.
  • I didn’t know if I liked the same music anymore.
  • I didn’t know how to present myself.
  • I saw a psychiatrist.

The not-so-bad or “liminal period of transition:”

  • I started taking anti-anxiety/depression pills.
  • I went to the Florida Keys and relaxed.
  • I cried, but a little less.
  • I started journaling again.
  • I started reading again.
  • I went to the beach.
  • I let myself be vulnerable to people that cared about me.
  • I cried, but I wasn’t alone this time.

The best or “re-assimilation:”

    • I put my energies into positive outlets.
    • I started laughing a little.
    • I went to yoga.
    • I went to yoga.
    • I went to yoga.
    • I was there for my friends.
    • I was there for my students.
    • I opened up to one of my students.
    • I joined an ALS support group.
    • I reconnected with my spirituality.
    • I started cooking again.
    • I got a new job for next year.
    • I cried and I laughed, and this time, I felt OK.
    • I felt hope return.

Look I don’t have all the answers. I’ve been through a lot this past year, but it doesn’t mean I claim to know everything. All I know is that transition periods are hard, and life is hard and Liminality is hard. But if you find yourself in one of these in-between states, and you don’t know where you’re headed, please don’t give up. Giving up is too easy and it is sooo tempting. Trust me, I know. I’ve been in the dark tunnel with no end in sight, but the man at the career workshop was right. It is when we find ourselves in transition (or Liminality) that we grow the most. It’s uncomfortable as hell, but trust that it is overwhelmingly powerful.

So who am I now? Well, it’s only been about five months since my dad’s diagnosis (and a year since he’s started showing symptoms), but I feel stronger everyday. I can’t say I’m the same person I was before this past Christmas Eve because that would be untrue. We can’t expect ourselves to “never change.” Life doesn’t allow it. Evolving is good, and it’s healthy.

Right now, I take it day by day. I listen for intuitive clues to what screams yes and what shouts no for me. I may still be sitting on the edge of my bed during this time of “re-assimilation,” but I know now that I won’t decide to lay down. Laying down would be easy; it would be giving up. No, I know that one day I will stand up from the edge of my bed, and I will walk forward.

 

xo.

 

 

Sources:

La Shure, Charles. “What is Liminality?” Liminality: the space in between. n.p. 18 October

2005.

 More information at: http://www.liminality.org/about/whatisliminality/

The ALS Chapter

Preface:
It has taken me a month to decide whether or not I should share what I wrote during my first ALS support group meeting in Florida last month. For many of you that know, or for those of you that don’t know, my father was diagnosed with ALS or “Lou Gehrig’s Disease” in December. I have been so hesitant to share my story because I wasn’t sure how people would react. But then I thought about all the reasons why I write. I write to share stories. I write to build bridges, to educate, to support. I write to understand, and to inform. This post is not the most pleasant read you will come across in my blog, however, it is one of the realest. This post speaks truth. Truth is not something we like to face in our daily lives. We hide from truth, we sugar-coat truth, we wrap ourselves in comfort blankets trying to avoid truth. Because truth is scary. It is scary as hell. It has the ability to uncover the hardest and rawest forms of human emotion. But that is why I wanted to share my story.

This is the chapter of my life called ALS.

The following contains notes taken directly from the journal I took to my first ALS support group meeting. The text presented has had little to not editing done to it. It is purely my train of thought during the two hour time span. Text in italics generally depicts my thoughts while text in regular form shows my observations.

You may not understand this post, but I don’t believe it’s meant to be understood. It’s vague, it’s uncomfortable and it’s all over the place. But this is how it feels to have a parent suffering from a fatal disease.

 

Begin:

The Bathroom, 12:45 p.m.:

i’m early.
Be in the moment:
standing over the sink, running water over my fingertips

trying not to cry
heart is thudding in my chest.


The Room #111, 1:00 p.m.:

people are here.
tables and chairs form an oval around the room.
the people are talking.
it’s like I can hear every conversation happening around me all at once.


i’m scared.

there’s a woman sitting across from me.
she can’t talk anymore, but
she’s smiling.
she uses her ipad to speak.

i feel tears welling.

this woman that can’t talk,
she’s breaking my heart.
she’s trapped in her body,

no free will to use her vocals
while I speak freely everyday.


Group Introductions, 1:13 p.m.:

i’m the new girl.

hi my name is . . .

my name is . . .

my name is . . .

                                  what is my name?


my name is gabby. my dad has ALS.

the introductions are over now.


Talking begins: 1:30 p.m.

we’re talking about the ALS walk.
it happened this past weekend.
i wasn’t there.


Rules:

there’s rules to group:

Rule 1: don’t talk about group.
Rules 2: don’t mention bad people in group.
Rule 3: don’t solicit group.


Observations:

5 people,
5 people in total here have ALS.

14 people,
14 people including me are supporters.

1 guy lost his wife 11 years ago to ALS.
i’m trying not to stare at all the strange equipment.

the woman to my left has a feeding tube in her stomach.
she got it in early april.
she lifts up her shirt to show it to me.

there’s a woman pushing a man in a wheelchair.
they come late.
she wears a cross around her neck.
they smile at each other a lot.

there’s a demo for new equipment,
i don’t understand it.
SGA 440: sit to stand lift
it’s a new transfer device.

the group leader,
she looks like someone I know.

they play a video.
i understand the equipment now.
$2,500-$6,500.

the man to the right of me is talking.
he speaks so well, so affluently,
but he’s in a wheelchair and
he has so many tubes.
maybe he can’t walk.

i’m the youngest person here.


do you know which kind of ALS your dad has?

kind?

“his speech is slurred, and he has trouble swallowing . . .”

 

bulbar onset

i have a word now.

 

Notes:

cleveland clinic: “one stop shop”
4 hr. multidisciplinary visit
all specialists team, all in communication.
every 3 months
neurologist
pulmonologist
living wishes/living wills.
tell local police/firefighters that dad has ALS.
“type to speak,” “type for me:” verbal apps for iphone/ipad
ALS chapter in PA

it’s 3:15 p.m. we’re out of time.

 

May 17th, 2016: next meeting.