It’s okay to not know

I’ve been feeling lost in a state of transition lately, so, for all my fellow brothers and sisters feeling some level of discomfort in your unknowns, I thought I’d put this out into the universe for you. For us.

Cheers to feeling liberated in the depths of our unknowns.

“Sometimes we don’t know what we want, what’s next, or what we think our lives will look like down the road. That’s okay. If the answer is I don’t know, then say it. Say it clearly. And be at peace with not knowing.

Sometimes the reason we don’t know is that what’s coming is going to be very different from anything we’ve experienced before. Even if we knew, we couldn’t relate to it because it’s that new and that different. It’s a surprise.

Sometimes the reason we don’t know is that it would be too difficult, too confusing for us right now. It would take us out of the present moment, cause us to worry and fuss about how we could control it or what we have to do to make it happen. Knowing would make us afraid. Put us on overload. Take us away from now.

Sometimes our souls know, but it’s just not time for our conscious minds to know yet. Sometimes knowing would take us out of the very experience we need to go through to discover the answer we’re looking for. And sometimes the process of learning to trust, the process of going through an experience and coming to trust that we will ultimately discover our own truth, is more important than knowing.”

The process of moving from what we don’t
know to what we are to learn is a process that
can be trusted. It’s how we grow and change.
It’s okay to not know. It’s okay to let ourselves
move into knowing. The lesson is trusting
that we’ll know when it’s time.

 

Found in Melody Beattie’s book titled, Journey to the Heart.
“It’s Okay to Not Know” (171-172)

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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.

 

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.

 

The loss of a pet is strange thing. On one hand, it brings feelings of immense grief just like the loss of a beloved human would. And on the other hand, you feel silly for becoming so upset about such a small piece of life. This past Sunday, I found myself at home eating my specially made banana pancakes, and talking to my dad about the new kitten my roommates and I have invested so much of our precious time and energy into this year. As we were chatting, he brought up our family cat, Hannah, and talked about how he had spent the past 15 years taking care of her (dad takes care of everything). As my dad finished speaking I said, “Yeah, I’m just kinda waiting for you guys to tell me that Hannah’s gone” (cynical I know, but she was 20 years old).  And that’s when he just kinda stopped. As soon as he looked at me, I knew. “Oh, she passed” he said. Just like that. So to keep a long story short, I spent the rest of my morning eating my tear-soaked (now soggy) banana pancakes as my dad told me the story of how my beloved kitty of 20 years had passed. I love my dad to death, but he has really terrible timing when it comes to breaking bad news.

The rest of my day I just felt very sad. Old memories kept flooding into my mind like water. Memories of my childhood, my family’s old house on Gravel Run, the move to our new house on Erie Street, adolescence and special family events. I felt so silly for being so upset. “It’s just a cat” I kept saying. No, Hannah wasn’t just a cat. She was my entire childhood. I realized in that moment that grief falls under the umbrella of nostalgia, or as the Brazilians call it, Saudaudes. Saudades has no direct translation into the English language, but loosely, it can be defined as an immense yearning for a certain place, time or person. And no matter who, what, when, where and why, everything we lose leaves a void. The loss of my baby girl Hannah brought back so many memories and so many feelings of childhood changes and life transitions. And my little girl was right there with my through every event. We were, of course, only one year apart in age. So it is this quote that I give to you, my readers, about loss. I hope it brings you peace, for whoever or whatever it is that you are missing today.

“When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight” Kahlil Gibran

 

Much love.

So let’s talk about windows. As a world traveller, I’ve always loved the air of mystery that only something as simple as a window can bring. Whether you’re looking out or looking in, a window is a portal into a different world; one we aren’t sure of, but so eagerly desire to know. And whether we realize it or not, looking through a window invites us to view the world in a different way. As I find myself sitting here, reminiscing about the summer I just experienced and getting ready to embark on my senior year of college, I can’t help but think of windows and their natural ability to help us see things differently. In the 1989 film Dead Poet’s Society (directed by Peter Weir in 1989) Robin Williams plays an English teacher who invites his students to always “seize the day.” He stands on his desk at the end of class and says to his students, “I stand upon my desk to remind myself that we must constantly look at things in a different way.” As one chapter of my life is ending and another is beginning, I find myself ready to look at this next adventure in a new light. Change does not always have to be stressful; it can actually be a breath of fresh air. I have made my blog’s cover-photo a picture of windows that I took in Brazil last semester as a reminder to always look at things in differently. Here’s to another year, and a new set of eyes.