Chapter 1.2 — 🪣 — Holes in my bucket

Before I Go by Hay Farris 
Chapter 00001.2 - "Holes in my Bucket"
Originally Written: June 1, 2020 and Summer of 2022
Geographical Location: Birmingham, Alabama, USA
Technical Location: My Journal
Edited and Posted: October 2022

Content Warning: Death, mental health, questions, faith

Holes in my Bucket.

June 1, 2020:

I have had very little energy over the last 8 years. I mean so little, that breathing was it. Stuck in the bed, not interacting with my husband, barely interacting with substitute caregivers, no energy to attend the weekly doctor appointments required of the severity of my illness, unable to prep and attend to my own 24/7 IVs that were keeping me alive, let alone keep up with friends and family. I literally disappeared from EVERYONE’S lives for YEARS. My life shrunk the same exact way I had felt once before, when I died at age 17: “I was sucked through a vacuum and had to live in a space as small as a freckle.” Except this time I was barely alive.

Basics.
(Shelter.)
1. Nutrition.
2. Hydration.
3. Oxygen.
4. Rest.
Repeat.

I was sick enough to be able to mildly lurk on social media maybe every few months. Many times a like was well beyond my abilities. There were months on end I didn’t even lurk. It took everything in me to RT anything, let alone post, or update anyone. I’ve been to the hospital so many more times than I’ve ever posted about. I know my last official update was six years ago. Six years I shouldn’t have survived.

So after talks of palliative care and a particularly difficult season of measuring time by sometimes not even a complete drive home between hospital stays, decisions were made and at age 31, on our 8th wedding anniversary (I’d been sick for 6 of those years) I was transferred via ambulance from the hospital to a nursing home.

Age 31.

On our 8th wedding anniversary.

It was do or die, quite literally.

In the future I’ll dive deeper into my life there. (Follow this link to read my #HayNHLife thread of live tweeting from the nursing home.) Through the help of many therapists and nurses and helpers and some of my fellow residents, I regained walking unassisted, eating, and general life skills. Fifty-three days later I was able to move home on November 30, 2018.

I’ve been working so hard everyday to do such basic things for myself that often my hair would be one large matted nest, complete with dust, because I couldn’t lift my arms to care for my hair. Well, that’s when I had hair. I’m on my third head of hair, and by God’s grace I will keep this head of hair for as long as *I* choose.

Watching or reading anything at all wasn’t just physically difficult in these past 6 years. It was many times literally too much for my brain. I had to shut down so many areas of my brain just to focus so intensely on basic needs that even if there was a time I was physically able to read, mentally I needed to focus with extreme effort on a single interaction per day, so saying hello to my husband after work became priority. The goal was to slowly rebuild to a level of stamina and endurance to be able physically and mentally to interact with my husband, then my family, then maybe my communities, and lastly society.

Emotional and spiritual life during these years has been a whole entire separate universe. This stripping away of stamina and endurance for societal interactions made the effort and labor of interacting in any capacity starkly obvious. In the emptying and the rebuilding of my internal and external abilities, the holes in my bucket became shockingly clear. 

For me, life became about noticing where there were holes in my bucket, and determining if I were to survive all these years and simply exist, could I at least better my soul while trapped inside a physical body that could do nothing but die slowly?

See I didn’t want to just recycle into my prior self. In many ways that self was gone never to return. I love her. She put in the work and watered me well. But she was not who I was meant to be. We are not meant to be stagnant. So this rebuilding of my self needed to account for the hard, the difficult, the truths about society, about my circles, about choices I make everyday, about who to surround myself with, about how I purposefully spend my time, about the differences between being irresponsible and detrimental. About what input I allow, about what output I release into the world around me, and distinguish between what deserves caution and what, if anything, deserves fear.

This is—of course—part of the lifelong process of growing. I was missing all of the BIG steps: becoming an adult, discovering who you are, finding your groove, determining your identity, finding your communities, internally doing hard work, self reflection before speaking too much, and finally contributing positively to society. You gotta calibrate any good set of scales before you use them, right?

If you knew me before this illness then you absolutely know I seemed to live in hyperdrive. I was always working toward the next phase. When my next phase finally arrived, I became sick missing every chance to thoughtfully calibrate my scales. I had been a licensed, practicing pharmacist for just over one year when I left work one day with a headache, never to return. I had just turned 25. I had just been promoted to a BIG position. At the time I was supporting us full time and paying off private school pharmacy loans.

Then everything justpoof. Changed. With one single headache. I know some of you can relate to that statement. I’m truly sorry we share such a unique connection that a health moment abruptly ripped our lives in half in less than a heartbeat.

Back to calibrating my internal scales—for me this self reflection all must happen through a Jesus filter. There is no question about that particular aspect for me. Even so, mine is not an unchallenged faith after ten years of intense war. So this one time I died at age 17 solidified my views on Jesus, but my faith also became one of the most difficult areas for me. Especially in regards to honoring my body.

It is unique cruelty to be certain about the beyond and incredibly uncertain about the now, and yet be faced with continued existence in perpetual turmoil, starvation, and survival. But I know I’m not alone in this experience. It’s universal. This is where humanity meets the divine. This is Jesus’ territory.

The five W’s haunted me. Who was I, to keep surviving? To quote one of my doctors “Survivor’s guilt is real. Be gentle with yourself.”
Why I was still here became infinitely more difficult to grasp than any other why’s. Refer back to the survivor’s guilt, I’m REALLY well practiced in this arena.
Try knowing WHAT is waiting for me beyond death, having tasted and even SMELLED LOVE, and then arriving at the doorstep of unrivaled relief and completeness, only to be yanked back into the existence of torture. Repeatedly.
When would I FINALLY get to SETTLE. Usually we hear that settling is bad. “Don’t settle!” But all I wanted, DESPERATELY was to settle on one side of the veil or the other. Straddling the veil made Hope not eternal, just eternally confusing. These are the questions of faith I tended to dig into deep valleys. I mean Jesus in the garden of gethsemane? “Let this cup pass from me not my will but yours be done.” Kinda thing. On repeat. Over and over again. Every heart beat. But also, WHAT IS YOUR WILL FOR ME?
WHAT AM I STILL DOING HERE?

Why? Why? Why? Never why me or poor me. Only why am I still here? On repeat. With the little one in the arrows. Why, Lord, why must I survive sepsis AGAIN? What is the point? Why must I survive septic shock again? When there’s only a 20% survival, why do I keep winning all the worst lotteries? Is it because I won the actually lottery? Can I call up Deal or No Deal and give the money back, even though we have none of it and are in medical debt and have had a GoFundMe? And let me just say, saying yes to help at first was difficult because we didn’t recognize our own need. Then saying yes to help became easy in certain areas but not others. Saying yes to a GoFundme only two years into my illness was a wild experiment in denying the spirit of comparative suffering. But I had no idea how deeply my pride would be wounded later on. So no worries about my pride. It definitely broke just like a fever along with every single dream for our future. Humility is truly, truly, truly holy. And that’s all I’ll speak on that right here. Ha. We’ll get there everybody!

I really struggled with “Why must I survive ________ again?” Because there came a point in time where I knew EXACTLY the torture I was in for. I have WEPT because I knew I would have to survive another sepsis, another septic shock, another clostridium difficile infection, another blood clot, another bleed, another treatment, another _______. Because when the health problem is preceded by the word “another” something changes. For me, the second or third time experiencing a particular health crisis felt like a level up. Like an achievement. This is old hat. Been here, done that. Certainly this will be over soon. By the fourth or fifth—or more— occurrences, I was more likely to weep to God about the torture I knew I was going to have to survive. Again. And this wasn’t depression exactly. I’ve experienced that too. This was more of a “I’d be sweating from praying if I wasn’t already sweating from health problems” situation. Much more of a wrestling with God, even though I often felt I was wrestling alone, and many times alone in torture while moaning or even scarier, while unable to moan, in deathly silence, where the wrestling was solely inside of me. Not even a hint of a flicker of movement in my eyes.

Why did I have to keep surviving? For what purpose was I even born, if my entire existence was me being faithful and being wrecked repeatedly in that faith. More importantly—and I’m going to be very bold and honest here—why had I been given BLESSED ASSURANCE (we’ll get there in the future) that I would be in this life on earth for some as yet unfulfilled purpose and future, after having TASTED and SMELLED and SEEN and FELT and BREATHED and HEARD and experienced the COMPLETENESS within the life beyond this world? The whole ordeal seemed cruel, and yet I remained certain, because once you’ve experienced FIRST-HAND a REALITY, there is no denying the truth in it. My heart experience at age 17, and a few other occurrences afterward, ensured I knew Jesus to be real and true and alive.

Y’all. If I had never died at 17, none of this would’ve mattered to me. But because I had been ripped back into a faulty body, WHY had God said NOT YET to me at age 17 and sent me back here, just to work endlessly for tomorrow with hope for the future, and then for all of my tomorrows to be like this? Why hadn’t I been allowed to STAY in Heaven? Why had I returned to the world, only to be ripped back and forth between the veil so many times, my physical body could barely hold fast to my spirit? WHY was I continually alive just to live a practically non-existent existence? What good was saving my life and keeping me alive if I was physically unable to do anything, ever, or even compile my own thoughts into useful expression? Blog posts or podcast material or vlogs or videos or ALL of the things God had created me to love and enjoy.

But mostly, above all other questions I had one true beef with God.

Why was my very, very best friend being robbed of these years as well? Living out the worst of the marriage vows for the first decade of newlywed-dom.

So what I’m saying is, I may not have been where you are, and you may not have experienced the extremes that I have, but we have asked similar questions. We have asked similar questions. That I know to be true.

INDUBITABLY.*

Eventually my relentless Christ-centered HOPE became the worst piercingly sharp reminder that I was neither living fully here nor allowed to live THERE in the after, either.

Honestly, the one constant through this all has been an unrelenting sustained faith in Jesus that annoys me more than you could ever imagine the holder of such faith could be annoyed by the very thing that sustains them.

As a child I was convinced I would never live an exciting life, nothing as exciting as my mom who came from a family of five kids who moved around the country. So, I read in my Bible in the book of James that if we ask for wisdom He will give us wisdom. Wisdom seemed wise, so I prayed for wisdom. Often.

And then like all second graders everywhere, I had a great idea. (‼️)

If I could pray for wisdom, why couldn’t I also pray for stories, just like my mom had, but even MORE exciting than a snowed in sleepover birthday extravaganza with tons of friends?

Guess what I prayed for every single time I prayed. YEP.

I prayed for STORIES. BIG STORIES. BIGGER than even my MOM’s stories.

Y’all. We’re talking little kid earnest prayers of my HEART. “Dear God” with a lump in my throat from the wanting.

SPOILER: Got a SOLID YES on that prayer.

Welcome to the Before I Go project by me, Hay Farris.

My story is about many things. It’s about noticing where there are holes in my bucket just as much as it’s about death and love and stories and survival and, hopefully, specks of brightness and a bit of random fun. My Before I Go project is about becoming the woman I have grown to be and not the girl who could’ve been.

Welcome to the experience of sorting through the journals and notes and thoughts and pics and vids and medical records and things I never posted that I wanted to post, and jokes I never got to share, and poems, and straight up heart-wrenching goodbyes and death moments, and miracle moments. Thanks for helping me get here. Y’all have made my continued survival feel worth something. I cannot possibly repay every one of you in equal measure to the love you have poured out upon me, upon us. But the very least I can do is share with y’all exactly what you’ve loved me us through. ❤️

*INDUBITABLY FOOTNOTE: I have always wanted to use that word. There! It is done. Now may I go? Am I finished? Time for Heaven yet? Just kidding. Oops. I do that. Apparently I bring lightheartedness to dark humor now. So please read all my INCREDIBLY HILARIOUS jokes with the super serious tone I’m intending. / Levity, y’all. Gotta have it. Thanks for putting up with me and caring to read this far, y’all. Trust me. Sometimes I even annoy myself. ?

• ← Chapter 1 — 🫀— So this one time I died.
• An updated introduction + note about my BEFORE I GO project + NotMine.Org →