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I Have Finally Forgiven Myself for the Hurt I Caused While I Was in the Hospital

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After almost a decade of guilt and shame, I have finally done it. I have forgiven myself for the pain I caused my family while I was hospitalized. I’m not talking about the guilt that rises from the pain one’s illness or injury caused their loved ones. Or the shame that arises from them seeing your helpless humiliation of complete dependence. I’m talking about the hurt and frustration I caused with my own words and behavior. Behavior that displayed an extraordinary lack of gratitude and consideration for anyone’s emotional state but my own.

In December 2009, I developed Bickerstaff brainstem encephalitis from a flu vaccine. I spent six weeks in coma while my body fought wildly against respiratory arrest, tachybradycardia, sepsis, kidney failure requiring dialysis, and anemia. When I awoke, I was paralyzed, couldn’t speak because I had a tracheostomy with cuff inflated, and couldn’t see because I had diplopia and opthamoplegia. When the paralysis wore off, I was forced to remain in bed because I was still very sick and weak, and my feet were pointer-flexed which made it impossible to stand up. For 18 months I remained hospitalized and bed-confined, while I fought pneumonia, ARDS, and constant spasticity, underwent countless scans, tests, procedures, and surgeries, and endured endless hours of painful serial-casting and physiotherapy. And my family stuck with me through the whole thing.

My mother and husband were my greatest supporters. My mother left her job and stayed with her sister so she could be with me almost every day from breakfast to dinner for almost a year. My husband tirelessly visited whenever he could between work and sleep, and spent every weekend with me. My sister visited as frequently as possible between work and her own young family, and my extended family also visited periodically. For the first few months, it was about waiting and watching for my family. I could barely communicate, and when I did, I was often desperate for comfort or physical adjustment, and I was just happy to see familiar faces. When I could speak after the trach cuff was deflated, and my body began to heal, visits were more enjoyable for everyone, and I was happier because I could communicate my needs. We all began to settle into a regular routine as I began the long road to recovery.

As the months wore on, however, my mental health began to wane. Anyone who has stayed in a hospital for more than three days (especially if you were confined to bed) knows just how acutely aware one becomes of how many hours in a day there are. The hours ooze by like cold molasses, and your mind drifted like smoke on a breeze. I felt like I was perpetually suspended in time between the bright, moving outside world and that pale, still world of tile and fluorescents and disinfectant. I spent over 13,000 of those hours in a narrow bed in a small room in a big hospital. The long, lonely hours between visits crawled by painfully slowly as I lay on my back in the half-dark and stared at the pale ceiling, listening to the whirring and beeping of machines, and talking to myself inside my head. I often couldn’t see out the window or had no window at all, and couldn’t see the clock, so I had no idea of the time. Was it day or night? How many hours until visiting time? Was I sleeping or just drifting inside my head again?

These seemingly endless hours were punctuated by visits from nurses bustling in and out, checking my urine, taking my blood pressure, adjusting this machine or that. They had no time (or no interest) to connect with me, and some were even mean and impatient. Doctors came and went, barely taking the time to explain things to me, and often leaving me with more questions than answers. Care-aids arrived every morning to bathe me and change my bed sheets. I lay helplessly as they rolled my body across the bed like a side of beef, washing, drying, changing, straightening, all the while chatting cheerfully with each other, oblivious of the human being under their hands. More often than not, I was treated as a child, incapable of making sound decisions for myself. Somehow, a sick body meant a sick mind. Even my family was guilty of making decisions on my behalf when I was capable of making a choice for myself.

After about eight months of this (that’s about 5,840 hours, in case you’re wondering), I began to crave contact and attention, any attention. The light above my door indicating I’ve called for a nurse blinked furiously day and night as I constantly rang for more ice, adjust the pillow, turn the fan off, there’s a wrinkle under me, turn the fan on, what time is it?, move the fan, etc. When the nurses moved my call button to where I could no longer reach it, I discovered my voice. If the bell didn’t bring them, my shouts would. They would shush and scold and remind me there were others that required attention. Being treated like a naughty child would piss me off, and I would curse and shout and throw childish tantrums. After months of lying on my back on wrinkled sweaty sheets, unable to shift or turn on my own, every tiny discomfort nagged and needled, every itch drove me insane, every pang and pain was acute. And pain there was. Lots of it, day and night! I was sick to death of being in my own skin!

My family was far from immune to my neediness, and anger. I waited impatiently for visiting hours, and was so relieved to see the familiar loving face of my mother or husband. Before long, however, I became demanding and impatient, whiney and sharp-tongued, irritable and petulant. Most times, they waded through it with long-suffering patience and quiet compassion. I became adept at dreaming up delay tactics and the end of their visits to keep them with me for just a few more minutes before I had to face another long night of isolation and pain. I was so dependent on others for my needs, unable to do a thing for myself, that I began obsessing over having those needs met by my family before I was left alone. I began expecting them to carry out the tasks I set them to, more interested in what they could do for me than enjoying their company. And I was depressed, angry, and combative virtually all the time.

I hope you understand that none of this was conscious. I didn’t really see how I was behaving, and the impact it was having on my loved ones. It wasn’t until years later that I could look back, recognize, and take accountability for my behavior. And still more years before I could understand where this behavior came from. I was so embroiled in my grief and pain and loneliness, that I couldn’t see past my own little bubble of angst.

And this is exactly why I forgive myself today. Grief can bring out the worst in people. It can make people behave in ways they wouldn’t ordinarily. It clouds judgment, and skews perspective, and it cannot be negotiated with. Chronic pain can make people irritable, depressed, and desperate. Add the isolation into the mix, and it’s no wonder I was so miserable! My family forgave me long ago. In fact, that they kept coming, kept by my side, despite the abuse I dished out for months, says more about their characters than it does mine. So, why shouldn’t I forgive myself? Was my behavior acceptable? No, it wasn’t. Should my family have to accept it? Certainly not! But was it understandable, given the circumstances. I think so. And if my family has forgiven me, it’s time I did too.

This story originally appeared on A Day in the Life of a PWD.

Getty photo by KatarzynaBialasiewicz

Originally published: July 12, 2019
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