Whelp, my OT thinks getting out of the house is imperative for my mental and emotional success or just enough to keep me from throwing in the towel. Either way it gives my unemployed ass a chance to brush my teeth, wear something other than my crusty sweats and interact with other humans.
It's this 'humaning' I still struggle with especially when my body refuses to cooperate and I'm left looking like some feral housewife who's been locked inside the depths of Hell...or at least burdened with 10 loads of laundry and reruns of daytime T.V.
And while I wish I could blame it all on the disease, part of me can concede that this chapter of my story started well before I started losing my bowels and hair. This chapter, truth be told, began as a journey of grief. Along the way I just added a few more pit stops. Because why not?
I woke today with a crushing weight on my chest and as I lay in the darkness, I felt an overwhelming sense of emptiness. Not a physical magnesium citrate emptiness, but a hollow space where my emotions used to reside.
Mental health is a taboo subject and we tend to joke and jest, throwing the word 'crazy' around as if we even know what it means. Don't believe me? For one day make a note of how many times you might use this phrase or expression. How many of these people are actually crazy? And what makes one certifiable enough to be called crazy?
I could talk for hours on this subject, but no one wants to listen and the $80 a session to find someone feels forced. So forgive me if this isn't something you want to discuss, but it's something I can't escape and I need to find out why. Or at the very least find a way to fill that hole I have left gaping.
It has been over 3 years since my dad died. And everyday his absence is felt, seen. In the faces of my children, the empty chair at the table and my mother's heart. I can't escape it.
Nor can I escape the last words we spoke. I go back to that moment over and over, dissecting every second, frame by frame, trying to keep it from slipping away. It terrifies me that I will one day have difficulty remembering him. Never mind the day I don't know who I am.
I stood in the doorway, both kids huddled at my side, frightened by his deteriorating appearance, but more terrified by the reality that he would leave us soon. Every single moment we could spare, we spent at his side and that final night was no different. Reluctant to leave, at 1:00 am I loaded my babies in the car to give my mother the time she needed with him and to recharge.
I remember exactly what I was wearing, the smell of his pipe lingering in the hall, my girl's hand tightly clutching her brother's, who still struggled with letting him go.
I called out to the bed " we love you, old man. We will be back in the morning to terrorize you. Love ya'". He raised his arm which took all the strength he could muster, waved us on with an almost inaudible 'Love youuuuuuu....".
His voice faded as his body weakened, and I trooped out with my crew in tow.
Hours later he took his final breath with my mother at his side. The part that makes this even more difficult for me is three days prior to his death, he caught me off-guard with a call at my office.
It was 11:34 am on a Wednesday and I had just come back from refilling my coffee mug when our receptionist buzzed me. With a quick 'your father is on the line', I was thrown through a loop. My mother was making all the necessary arrangements to bring him home while a friend kept him company in ICU at MDAnderson. Surely she was mistaken. He was in no condition to be making phones.
She wasn't. As I picked up the line, I heard his rattling cough and distinct "Big John" chuckle we have all grown to love. I demanded to know why he was calling me. Didn't he know he was supposed to be resting and saving his strength?
He told me that he could do whatever he damned well pleased in true John-fashion, and proceeded to crush my heart.
I stood behind my desk, unable to get my legs to cooperate, as he commended me for all my accomplishments and failures. He thanked me for allowing him to become a father and grandfather. He thanked me for all the times I let him be a part of my life even when I fought and resisted. He thanked me for making him proud.
As I began to resemble Rocky Raccoon, I jokingly jested that he was fucking up my makeup and I was at work. With a loud and audible guffaw, he stated his job was done and the line went dead.
I stood there, perplexed, angry, grateful and feeling like a complete and utter shit-heel.
As I sunk into my chair, I struggled to wipe away the tears and compose myself.
I wish I had known that was the last full conversation I would have with him. I would tell him how much I didn't deserve his love. How much I owed him for choosing us as his daughters and my mother as his wife. He gave us our family back. I owed him a debt of gratitude for the life he so selflessly gave us all. He told me I made him proud as a mother and parent. I should have told him a thousand times how proud I was to call him Dad. He believed in us when no one else did, and showed me for the first time in my life not just how a man should treat a woman, but how people should treat others.
I wish I could tell him that I am nothing to be proud of and that my shortcomings will always outweigh and outshine my accomplishments. I mean, it's a go-big-or-go-home mentality I live by. And that's ok.
I wish I had told him...so much. I will regret this to the day I die.
Many don't know this, but he had always been a part of my life long before he became my father. In fact he was the second person to hold me following my birth. There is a running family joke that even though we never shared DNA, I am my father's daughter.
And to that I call bullshit. He was so much better than I ever will be.
He was the compass this family needed and without him we have absolutely no direction. He gave us the most beautiful 16 years and would have given everything to give us another 16.
And I lie awake night after night, year after year, and the hole in my chest, that hollowness keeps getting bigger and bigger. The bond I have with my mother is unbreakable; she is one of my best friends. I cannot imagine life without her, and don't want to.
But the relationship he gave me was something I never thought I needed, much less wanted.
I don't know why I am writing this. The journey of grief and loss is endless. There will never be an end in sight, and I have to acknowledge this is part of life. No one is immune to it. We know this.
But it doesn't mean to I have to accept it. And today as I lay in the dark, the only sound my breathing labored as the tears become uncontrollable, I am rejecting it.
Fuck death and everything it robs us of. Fuck the idea that we move on, get over it or even learn to cope.
Because some of us never will. Some of us are left hollow and lost. Fighting to find some reason to keep on going.
My reason? I want to continue to make him proud.
Even if takes an entire lifetime.
Because that emptiness I feel, that crushing weight I feel every night?
It's a broken heart. And if I don't find a way to mend it, I will drive a fucking harpoon through it.
I haven't learned how to live without him and quite frankly, I don't know if I ever will.
But I will be damned if I am going to spend my life crying in the dark.
He wouldn't have wanted that. Besides, I am fucking up my makeup again.
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