First day of official unemployment for the first time since I was 15.
Exciting yet discomforting, I am both happy to have free time to do the things I want, yet unsure about my immediate future plans.
I’ve seen a lot of changes in myself taking place since I’ve actively begun working on daily meditations for my social/emotional well-being. My dad’s illness has almost demanded it. I’m constantly pursuing the “now-ness” of everything so I can delight in the present moment.
I used to think that joy/happiness/satisfaction was somewhere “out there.” That my inner state was contingent on my exterior surroundings. Once I accomplish this, or once I obtain that I’ll be happy, I thought. The opposite, however, has slowly transformed into my truth. I am both happier and sadder than I’ve ever been in my entire life, but changing my mindset has allowed me to find joy in all my sorrow. The world to me is now so different. Tasks that used to feel trivial, and moments once viewed insignificant have all become something special. The simple act of looking at flowers has turned into marveling at the pink hydrangea plants on Allegheny’s campus, blossoms sprinkled with water droplets. Running outside to my car at night has become pausing in my steps to soak in the sky at sunset. Getting a tan at the beach has transformed into feeling the sun kiss my skin as I dig and wiggle my toes deeper into the sand. My dad’s illness has taught me that the “now-ness” of everything is a miracle. And my joy and my happiness manifested once I stopped chasing it.
“Joy is a choice that comes from accepting and living fully each moment of our lives, knowing that each day and each event is important . . . Receive it [the present] now, then pass it on with a smile and a kind word to all who come along your path.” Melody Beattie
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)
On Saturday evening, I received a text from a friend asking if I wanted to travel to Sharpsville, PA with him, his mom, and a girlfriend to watch a mutual friend of ours perform in the play, Noises Off, at the Pierce Opera House the following afternoon. I told him that I was planning on taking a vow of silence for Project ALS and their “Don’t Talk A-Thon” campaign, and wasn’t sure if my silence would put a damper on their plans. With the words, “We support each other no matter what the other is doing,” I hopped on board. And boy, what a day it was.
To start, I’d be completely lying if I said that my day of silence was anything but challenging. That, and mentally exhausting. At first, I felt very peaceful knowing that I was supporting my dad and those that can no longer use their voice due to motor neuron deterioration. Being a rather expressive person, and having experience traveling to various countries where English wasn’t a primary option, I was anxious to see how I’d manage myself in public. At first, I found it easy to communicate with my friends through extreme gestures and facial expressions in the car. I brought along a pen and paper to use when I wanted to scribble something down, and although I felt a little self-conscious, I was thankful to be around supportive friends who encouraged my efforts.
And then we got to the Opera House, a place where people didn’t know me, my dad, or my story. Slight panic set in as I tried to purchase my ticket at the box office, and the gentleman standing before me asked, “Adult or Student?” I looked at my friends. HELP ME my eyes pleaded. They didn’t catch my drift, and understandably so. They’re used to hearing me speak.
“Adult,” I whispered, disappointed I had to use my voice for the first time. “Keep quiet,” said my mom’s friend. “I’ll talk for you.” Easy enough, I thought. I was relieved to know that I wouldn’t have to break my vow again.
It didn’t turn out to be that easy. It’s amazing how many times a day we talk to random people without even noticing. Standing in line for the bathroom during intermission, a man approached me to ask how I was enjoying the performance. I was thankful that he phrased his question in a way that I could just smile, nod, and silently laugh along with his comments. I later found out that he was the director.
After the bathroom line incident, I tried to avoid eye contact with people for the rest of the play. When I went to purchase a bottle of water at the makeshift concession stand, I simply pointed to what I wanted, nodded, smiled, and gave my money to the employee. When the performance ended, and our friend came out to say hello, I distanced myself slightly, letting everyone else give him praise for a job well done. Smiling along, I started to feel a swell of anxiousness growing inside me.
On the way home, we decided to stop at an Italian restaurant right down the street from the Opera House and grab dinner. While we were waiting to be seated, a man approached us. He said he recognized us from the play, and wanted to introduce himself. Apparently he had some connection to the production. As he made his way around the table, I prayed he wouldn’t notice me. But he did.
“Hi, what’s your name?” he said as he extended his hand towards me.
I reached forward to meet his hand. Open mouth, not sure what to do, I remained silent.
“GABBY. Her name’s Gabby,” my friend almost shouted. I was grateful that our host came and got us after I let his hand go.
When we got to our table, I grabbed my pad and pen to write down my order. Last minute, of course, I changed my mind, and re-wrote the new order on another page for my friend to use. When our waiter came, he looked at me first to speak.
So my friend started talking. “She’ll have the gluten free pasta with pink sauce, and . . .”
NO, I expressed, waving my hands wildly. She was reading from the wrong page. I flipped the page for her, and she continued, apologizing. After everyone finished ordering, I couldn’t help but wonder what our waiter thought of me. Being a retired waitress myself, I know what it’s like to just go with the flow no matter what happens at the table. But for some reason, this whole scene made me very self-conscious.
And then I realized what I felt – loss of autonomy. I felt the natural frustration that comes with the inability to do things for yourself. I was relying on other people to help me, talk for me, order for me, to say what I was thinking. During dinner, I felt myself growing more and more impatient. I just wanted to speak. To not have my friends guess what I was trying to say. I was sad that I couldn’t interject with my usual side comments during funny conversations, and writing took so long that I eventually gave up. I was surrounded by amazing and supportive friends who included me in all their conversation, but I still felt like I was losing my identity. Normal, lengthy statements were reduced to simple head nods, or drawn out gestures. To make things more complicated, the cast from the play we had just watched made reservations at our same restaurant, and many performers approached our table, even recognizing us as cast members from Beauty and the Beast. I sat there, smiling and nodding, trying not to draw attention to myself, and avoiding eye contact.
I felt terrible. I couldn’t interact with people in my usual, friendly way. I was quiet, and shy. I started to think how exhausting this must be for my dad. To be part of the conversation, but not really part of the conversing. To be in, but also be out.
My friends must’ve sensed my frustration because they told me how brave I was being.
I never occurred to me before that I was being brave. I thought I was just trying to support my dad. But maybe they were right. Maybe it was brave to go out in public knowing that I could talk, just making the decision not to.
During the car ride home, I thought about my dad and how he does what I did one day, everyday. He doesn’t have the choice between speaking and not speaking. It’s my dad who’s the brave one, not me. I did 16 hours, he does everyday. I was challenged one day, he is challenged everyday.
When I got home, I wrote down a note and took it into my parent’s bedroom for my dad to read.
“Wow. This is challenging,” it read.
He smiled, and wrote back, “I’ll say.” We laughed.
I’m not gonna lie, I’ve been struggling with this week’s Motivational Monday topic a lot – obviously, because it’s Tuesday.
I’ve been caught in the fog of my dad’s illness this week, watching, yet again, as another deterioration takes hold. He is starting to lose motor function in his dominant hand. I watch and I know what’s happening – switching from his right to his left hand during dinner, struggling to turn the car key in the ignition, taking twenty minutes to clip his toe nails.
I watch and I know, and it scares me.
I think experiencing grief makes a person more privy to the way that others respond to it. In the memoir, Love Warrior, author Glennon Doyle Melton outlines her experience in sharing grief with others by observing the patterned responses people reply with after hearing of her sufferings. She depicts these responses as different “roles.” I won’t get into all of them, but here are just a few:
The “Shovers” – the ones who respond with “everything happens for a reason” because grief is too uncomfortable, and they need to make it comfortable – for them, not for you.
The “Comparers” – those that compare your story with one of their own because that’s how they can relate to your pain. And all pain is (supposedly) similar.
The “Fixers” – those that see your pain, hate your pain, and want to do everything in their power to take away your pain.
And so forth.
Now before you bite my head off, I’m not saying that any of these responses are particularly bad. In fact, I know I’ve stepped into these roles before while facing another’s grief. But these roles shield us from vulnerability; they distinctly separate us from the suffering that’s taking place. They allow us not to get too close to grief because grief is hard and it hurts. It’s uncomfortable and it’s not fun. But grief is also highly subjective to its own person. Your grief isn’t like mine and my grief isn’t like yours. And that’s okay.
I took some time to explain all of this to my boyfriend, Alex, last week. I explained that I knew people were just trying to help by asserting themselves into these roles, but sometimes I just wished they wouldn’t. I explained that sometimes the best help comes from those that don’t try to do anything at all. These are the people that are just there with you – not to dismiss the pain, not to compare the pain, not even to fix the pain – just there with you in the pain.
My boyfriend responded with “yeah, just sitting in the dirt.”
(Now let me preface this by saying that my boyfriend is incredibly smart and has been an ANGEL during this entire process with my dad. He also studied rhetoric in college, currently works at a church in Washington D.C., and is an aspiring theologian).
When I asked him what he meant by “sitting in the dirt,” he told me a story from the Bible’s Book of Job that references Chapter 2 Verses 12-13. In this story, Satan has afflicted Job (a man of faith) with sores from the top of his head to the bottom of his feet to prove to God that Job’s piety came only from his good fortune & blessings. But the part Alex was speaking of came after Job’s three friends found him in his suffering. The verses read:
When they [Job’s three friends] saw him from a distance, they could hardly recognize him; they began to weep aloud, and they tore their robes and sprinkled dust on their heads. Then they sat on the ground with him for seven days and seven nights. No one said a word to him, because they saw how great his suffering was.”
Alex’s reference to “sitting in the dirt” or “sitting on the ground,” was a comparison to those that “sit” in painful times with others. They don’t compare, they don’t avoid, they don’t fix, they just sit with you in your grief and they are vulnerable – just like Job’s three friends.
American author, scholar and public speaker, Brene Brown (aka my hero), says something about people that “sit in the dirt.” She says that vulnerability is our “most accurate measure of courage.” It’s easy to avoid hard emotions, in others or ourselves. But to sit with someone in all life’s shittiness and listen to them, and know that there’s nothing you can do to make it better – that is courage. That is sitting in the dirt.
My friends, I don’t have any motivation for you this week other than to try and sit in the dirt with someone if you see them suffering.
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.
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.
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.
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.
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.