June 19, 2013

psyche returns from underworld

6/19/13

This is one of the hardest blogs I've ever had to write, because every time I start really thinking about it, "water comes out of my eyes," as Lucy says. I didn't expect to get home after two weeks in the hospital and spike the football in the end zone, proclaiming myself all better and swiftly moving on... but I don't think I expected this either.

If you've been reading the incredible women who kept this blog over the past two weeks, you might have a sense of the medical goings-on of my "atypical acute pneumonia". I thought about keeping the emotional quotient to myself, but I've been doing that for a while now, and it hasn't gotten me anywhere.

LucyPortraitIanGurneyHosp(bl).jpg

Yesterday, Tessa put it best: you pay a weird price for cheating death. The only way I can express how I feel is to recount the worst of it, so I hope you'll bear with me while I try to sort it out.

By the 2nd day of my hospital stay, I noticed I could no longer do things like play simple games on my phone, hold conversations longer than a few seconds, and let my mind drift. I was already on my fifth day of fever, and the agony in my muscles was unceasing. I had to rock my legs back and forth, in a quasi-cycling motion, just to create a sort of Aspergian sensory-integration coping mechanism. I did this all day and all night.

Into the evening, my breathing got difficult, and each inhalation felt like I was huffing lighter fluid. Worse yet, I could feel my body catch fire, and my temperature shot up to 103°, and I remember thinking, "oh yes, I see, this is how it happens."

But that's not how it happens. Instead, you stay alive, and for five solid days, I fought for each breath, pain wracking my limbs, actively wondering how long I could keep it up. It felt possible only if I could just have a break; a short break, even 20 minutes rest, enough to go back to battle again. But I remained conscious the entire time except for a brief respite of Ativan-induced sleep that my wife wrote so lyrically about here.

The hardest part was each night around 10pm, when Tessa had to go home so she could sleep long enough to be up with Lucy in the morning. A few nights I asked her to stay, even though I knew it wasn't going to happen. She would massage my arms and legs, and tuck me in, but when she left, I felt my hospital bed turn into a little dinghy.

My little boat would be shoved off into the dark ocean at night, and I'd be told to find the land over the horizon (morning), but I had no idea how to get there, or what would happen to me while I was drifting. It was the solitude that got me, even in the daytime, the sense that I was totally alone, even as so many people came and went.

Finally, about four days in, I reached the end of my tether. I begged my doctor for more drugs, I exhorted Caitlin that surely something more could be done, but I was told none of these were an option, because it would decrease my "will to breathe". Then Tessa told me I was not getting worse, but not getting better, and I'd most likely be in the hospital another week.

Up to that point, I was still living the self-deception that I was one or two good days away from getting out, but that shattered the foundation of my delusion. It was like cresting a desert mountain only to find more endless desert in front of you.

That night, as my dinghy was shoved off into the black water once more, and the hospital quieted to a blank whisper, I tried to sleep, but kept bolting awake with the nasal cannulas and rebreathing mask stuck to my face. I kept thinking they were suffocating me, even though they were the only objects keeping me alive.

Thumbnail image for IanSquelchBlogJune10.jpg

I'd pull them off, gasping for real air, and then the blood-oxygen meter would alarm, as my body went into hypoxia. So I'd suction the mask and cannulas back onto my face until the loud beeps stopped, awake and unable to sleep anymore.

It's amazing how many ropes you reach the end of. It's also amazing how much misery you plan on bearing, and how much more you're asked to bear. What I was going through wasn't all that special, I thought, how many other patients were feeling what I'm feeling? How many soldiers in WWII and Vietnam had lain in a field, wounded, wondering how much more they could take?

I tried tricks - I discovered that if I took mental journeys to places in real life (my house, etc.) that I would be plunged into misery. So I would invent hallucinogenic mindscapes, floating in castle turret rooms full of warm water, drilling holes in the wall for the pain to flow out. Very Heavy Metal, very Game of Thrones, fantasy D&D kinds of places that took me far away from my quotidian world.

Lucy's self-portrait, on the wall in front of my bed, had gone from being a lovely rendering of her sweet character to a source of... resentment. I couldn't bear to have her look at me, expecting something, when I had nothing to give her. Nothing.

My misery wasn't unique, but it was mine. And I finally reached a point where something in me was breaking, actually cracking in two. So I culled back from all the therapy I'd ever had, all the 12-step ideas I'd gleaned, the AlAnon meetings, even Dr. Lucas' class at Carolina from 1988.

I tried Step 1: accepting that I was powerless over the affliction that was tackling me, and my suffering had become unmanageable. But that was as far as I could get; there was no Higher Power to turn myself over to. I was already beseeching whomever would listen with whatever voice I had left.

So that wasn't going to work. But then I thought: how can I take away the pneumonia's power? How can I rob it of its ability to make me suffer? And the answer was immediately clear. I must no longer fear death. And I must no longer fear loss, either mine or anyone else's.

Rocking back and forth in my dinghy, eyes closed, I chanted very softly, "I do not fear death. I do not fear loss." Over and over. And as I began to sink in, I began to feel free. I was still in such sad, horrible shape, but I was 5% better, and that was good enough.

The next day, I got the news that my X-ray showed that I hadn't got any worse. One doctor even called it, "a tiny, tiny bit infinitesimally less bad." Even though this was supposed to be good news, I allowed myself no more hope. Hope doesn't matter; I don't need it; I do not fear death; I do not fear loss.

It was around this time that Salem showed up, having traveled all the way from North Carolina, and a huge turning point happened when he said he'd spend the nights in my hospital room. Suddenly my dinghy had an outboard motor, and then it became a nice little ship, complete with co-captain, one that I could sleep on.

SalemSleepsHosp(bl).jpg

And I got better. In a way, it was worse, getting better, because I could sense how far I'd gone under. But with Salem, and Tessa, and Caitlin advocating for me at the hospital virtually around the clock - and my own body healing - I left the dark underworld and could see being a real person again.

I had another week in the hospital, learning how to breathe on my own once more, learning how to walk without falling, and of course the optimism-suffocating drama of having my picc line tied into a knot, but 12 days into my stay, I was finally let free. My friend Stasia told me that when her water broke only five months into her pregnancy, she lay in the hospital room in September, imagining Thanksgiving and Christmas decorations. It got her through the bed rest and a healthy delivery, when every doctor said she'd never make it.

I dreamed of walking out of the hospital, with my fists in the air, wearing a nice shirt, proclaiming victory. But when it happened, I couldn't do it. I was just sapped. I didn't care.

And so I find myself, now a week out of the critical care ward, struggling to find meaning in a world I let go. Of course, snuggling with my wife is immune to such vacancy, and Lucy has resumed her status of a shining lighthouse, and the reason why I still find such irrevocable beauty seeing the world through her eyes. Even her self-portrait has become my new favorite piece of art once more.

But I've been searingly unhappy, and not just because the recuperation period has been an exhausting slog. I have trouble finding the motivation for all the little things you need to do in order to be a functioning person. Every act is a force of will, a joyless transaction.

I have no doubt this too will pass, and I'm always lifted from blankness by reading the letters many of you wrote through Tessa, and by the prospect of being at our farm in a few short days. And maybe I'm just a Patty Preciouspants who just needs to get over it; I can accept that.

But those unending days of breathing, the will to go five more minutes, then five minutes after that, for so many days in a row that I would have begged for intubation and a feeding tube if it had promised relief... I feel like it has changed me. I feel like I crossed over to a place that has left me with an accent. Perhaps Tessa was only partially right: it wasn't just the price I paid for cheating death, it was the price for accepting it.

Posted by Ian Williams at June 19, 2013 11:06 PM
Comments
Posted by: Alyson at June 20, 2013 7:20 AM

Wow. Thank you for sharing.

Posted by: hilary at June 20, 2013 7:42 AM

hi ian, of course. it makes complete sense, all of it. stay the course and feel what you feel (or don't feel). thinking of you and family...

Posted by: Cindy at June 20, 2013 8:11 AM

It is a long road to getting better. Pneumonia is not a small thing! It is great you are taking stock of what you feel and don't feel. We are of course glad that you keep moving forward.

Posted by: Heather at June 20, 2013 8:14 AM

I really relate to the acceptance piece. Though its hard for me to stay there. And the "joyless transaction" part. Recovery sucks! But, you get to feel however you want about it! I give myself permission to feel really sorry for myself. Usually, I have an exceptionally comfy blanket and my dogs laying next to me when I do that. The joy comes back and its better than ever---different. It just doesn't come back according to our schedule. That is another sticking point. One day, I was morose and limping around in the Texas heat and I noticed how beautiful the trees were. I only needed the energy to look and acknowledge. That was when I started to get better.

Posted by: Kristina Haddad at June 20, 2013 8:18 AM

Hi Ian,

I don't know you - just met you a few random times at the Culver Ice Rink. I know Tessa through adult skating but have since moved out of town. I have been following all of her posts, knowing what a beautiful woman she is. I feel compelled to write to you because in reading each and every post I had tears dropping like a mad rainstorm. The struggle for your wellness and what you experienced was simply something we don't hear about - in reading I thought how would I handle such a struggle? I was in awe of the strength, the grace and the brutal honesty of it all. So reading your post just confirms what brilliant and sensitive people you are. Im no expert but seems to me - anyone who could survive what you did would be feeling a plethora of feelings and a sort of post traumatic stress - indeed to read of your breath by breath struggle shines a new light on life as a whole. Thank you for sharing and indeed brighter days are ahead but my belief is during times of trauma - allowing the feelings, however bewildering and conflicted and wading through them is the best course of action. . . it's just so cliche but through the darkness comes the light (at least that's been my experience over and over)...Anyway - sending healing and light from a stranger in the great northwest. . .

Posted by: Randy at June 20, 2013 8:22 AM

I think the feelings you feel at having survived an ordeal like that are completely normal. But let it change you where it needs to. From my experience, you will be better for yourself and all those you love around you.

Posted by: Bliss at June 20, 2013 8:34 AM

Ian, You've danced at the edge of being and not-being and lived to tell the tale. It's no wonder you are exhausted and emotionally depleted. For those of us adrift in our own dinghys at night for no other reason than the realization that we all must die one day, your words and your acceptance offer immense succor. There is much to live for, even if you aren't seeing it right now. Yours and Tessa's posts--the beauty and generosity of your observations about these most intimate moments and the demonstration of love and friendship around you--are so very life-affirming. Follow the love and keep writing, and I know your own words will lead you back. xx

Posted by: PC at June 20, 2013 8:34 AM

Ian--I've only had pneumonia once, and it was surprisingly tough on me, but nothing like what you've had to deal with. I'm amazed you had the strength to write about it, which in itself may indicate that your acceptance of death doesn't mean a rejection of life.

But in a way, what you wrote reminded me of something else I'd read recently, about a very different illness.

http://hyperboleandahalf.blogspot.com/2013/05/depression-part-two.html

I hope you find it helpful, and I hope your boat gets back to your home shore soon. Thanks for writing.

Best, PC

Posted by: Ehren at June 20, 2013 8:45 AM

I relate to so much of this. It's really amazing how much it changes you to be completely at the mercy of fate, but even more than that I felt like totally losing my private life really changed me. I think I got really irritable and sad from being constantly monitored and being intruded upon. Obviously, all of these people are in your business because they're trying to make you well, but being in a glass bowl is a weird feeling.

Anyway, I'm grateful to you for sharing this, glad that you're on the mend and sympathetic to you fighting your way out through the fog.

Posted by: Claire at June 20, 2013 8:47 AM

Ian
I developed pneumonia and pleurisy about 6 years ago. Once the worst was over, I went down a rat hole of depression. I came to the conclusion that for a period of time, my body was mourning what it had to go through. And slowly, slowly I climbed back out and life was normal. Be gentle with yourself, and be slow.

Posted by: m.e. at June 20, 2013 9:02 AM

Dear Ian,
How I feel for you! As I read your blog and the comments from others who have endured the challenges of physical illness and powerlessness, I realize that I cannot say I know what you have gone through having never been so challenged, but as a practitioner of Chinese Medicine, I have a different perspective that includes understanding the psycho-spiritual correlatives and healing process. You mention leaving soon for your farm. I would encourage you to seek the help of alternative medicine if you can as it can do so much to revitalize the energy needed for recovery. Probably being stuck with more needles isn't high on your list of things to do before you leave, but I am available if you want. I would also be willing to research other options for you while you are at your farm if you let me know where it is.
Blessings and so much love,
Mary Ellen

Posted by: Stephani Gordon at June 20, 2013 9:03 AM

much love Ian, am sending you friendship love and healing thoughts. -S

Posted by: Margaret at June 20, 2013 9:39 AM

What a scary experience for you... wishing you peace on your healing journey.

Posted by: Annie at June 20, 2013 10:02 AM

Most beloved Ion:

It's so painful to read this, but at the same time, so important that you have written it. We are all swinging our swords in the dark at the awful things that are really there, that must, that WILL be acknowledged with or without our consent. It comforts us to know that we do not fight alone. And you do not fight alone, my dear dear friend.

Posted by: Brandy at June 20, 2013 10:23 AM

Ian,
Thank you for sharing! I am sorry you were in so much pain and so ill. You have so many people that love you and we all need you in this world. Keep fighting, one day at a time!!
Brandy

Posted by: Alan at June 20, 2013 10:32 AM

Your situation makes sense to me. Over the last two years, my parents both died. Not only did the normal-ish loss of parent and loss of childhood occur but as the one local child of immigrants I had to take part throughout their dying in a way I was not prepared for or maybe just hadn't had warning. I rubbed a back as morphine was administered. Sat up many late nights as dipping IVs did what little they could. Listened as they each complained in their turn about the feeling a few days before when, I realize now, their digestive tracts ceased to function. I will be watching for that one myself.

I expect now that this sort of things changes people. Changed me. Saw the brink. Saw two glowing ships fall over it and go dark. There was no warning with Mum but Dad's passing came on over time. He pulled the plug and still lasted for weeks. I cried at the office by myself with the door shut day after day. I cried so much that the bottom of my tongue got ripped and scarred by its raking along my back molars. It's taken a year and the pain in my mouth is almost gone. Never thought it would go just like I never thought it would happen in the first place. Never really thought my parents would go like that either.

Maybe you are forgetting not so much that time heals but time fills in new content in our lives that replaces or at least takes the place of the past. You did something perhaps as altering as puberty but went through it all in two or three weeks. After two years of my Dad final illness and now two months since my Mum's passing I am starting to feel normal again or I am feeling at least what the new normal feels like. Takes time. New stuff is happening even if they are not there with us to share it. Get well. You will.

Posted by: kristin at June 20, 2013 11:56 AM

ian, you & your wife & friend have beautifully rendered the profundity of your experience from your different persepectives. again, the profundity is clear. it's a gift to have experienced it & to live to tell us about it...a gift i've not received personally...certainly not to the degree you have

but now, in battling back from that brink, there are the mundane & banal too...the (many) moments of not cheating nor accepting death...the life that happens when you're busy making other plans or contemplating those profundities. the discrepancy between the two is a chasm you're in...well, i guess we're ALL in...but yours is a NEW chasm because you've pushed the profundity to a new extreme! & maybe it exacerbates the mundane to a new level as well...& makes the simple almost cloyingly depressing. i dunno...it's just a guess

but you & your incisive, introspective self & family will find the balance again...you'll find the beauty in that broader gamut...in all of it...that is clear to this reader

Posted by: Eric Wagner at June 20, 2013 12:39 PM

Ian,

Strength and grace and pervasive - if annoyed - humility. Such a long long distance from the days of immortality at Chapel Hill. And never closer.
Thank you for sharing this.
Yitb.

Posted by: Salem's Little Sister at June 20, 2013 12:41 PM

I think you are really bummed that we don't get to act out the horse jumping scene from "The Boy in the Bubble."
I'm still game if you are!

Posted by: heike at June 20, 2013 1:17 PM

this touches me in a deep place within me where i need to bring a candle so i can see where i am going. don't go there without a light, a big fat torch, Ian. from all i've read here i can see that death was in the room with you. it was standing next to you, waiting for a turn. i've seen that three times in my life, when my mom died, when my dad died, when little Alba died. i wasn't scared and it was good that *they* weren't scared-- in fact, what was scary was how ready they all were when they handed themselves over. but it sucked me dry. you don't come away from facing that son-of-a-bitch unscathed. whatever you can feel about that encounter is GOOD, is better than feeling nothing. you need to heal and take care of the wounds. be kind to yourself and walk slowly. we are all here for you, tiny buzzing sparkles, flickering lamps made in china, falling, rising and shooting stars, small torches, mended torches, fluttery flames, the Shining Lighthouse and the Magical Wonderful Fairy, all luring you away from the dark place. follow the light. don't be alone.

david bowie: everyone says hi

https://www.youtube.com/watch?v=fmEnRtMaeCo

Posted by: grumphreys at June 20, 2013 3:23 PM

Ran into Salem in Charlotte and he told me he was going out there. Glad to hear his visit helped you in a dark hour... we should all be so lucky to have a friend like that.

Posted by: Anne at June 20, 2013 5:45 PM

Dear Ian... Just be. That's all you need to do right now. Surrender to the moment. (Gawd, that sounds New-Agey!) Really, you were on the right path -- acceptance, I sometimes call it surrender. We are programmed in our reptilian brains to fight for our lives at every turn. Sometimes we have to STOP that in order to get better. I'm not sure why. But you figured it out.

Don't expect anything of yourself at the moment. Your body and mind are exhausted, wiped. You may have PTSD and depression -- as much from the lack of sleep and all the meds that fought your illness as from the illness itself.

Just be. Your joie de vivre will sneak back in, little by little, hardly enough to notice incrementally until one day you realize, Wow... I feel good. xxoo Anne

Posted by: kcf at June 20, 2013 6:33 PM

Profound and moving and a wee bit scary. But the honesty is very appreciated. Hang in there. I plan to continue on your journey. May not be your co-captain friend (brilliant gift, btw), but, virtually many are here rowing along with you.

Posted by: Stasia at June 20, 2013 6:45 PM

E
I should say (especially now to you) that despite visualizing and getting to Christmas with my sweet baby girl, there was MUCH post traumatic stress amidst the joy of having made it through. Despite wanting desperately to get out of St John's, once I was out I was a bit shell-shocked and quite uncomfortable, which confused a lot of people. I needed to surrender and purge three months of fear and that was work for me. I think you are further along than I was. After all, in the face of death, you found a way to say "I'm not afraid." That's inspiring and is a message that we all need. Fear is powerful and you took advantage of a painful opportunity to show the rest of us we can all tell fear to F off. There's peace there you know ... when you're not afraid anymore. Thanks for that.
Love and aloha.

Posted by: diana at June 20, 2013 7:55 PM

I don't know you...Only through Tessa's and now, your, writings. I hope I will be fortunate enough to meet you one day; but, if not, I have been fortunate enough to share to some small degree this journey you and Tessa have been through. For that, I am grateful. I look forward to more readings. Glad you are back. Be patient and keep learning its purpose for there is one somewhere. I will look forward to reading as it comes into focus for you. Take care!

Posted by: Caitlin at June 20, 2013 9:03 PM

Eleven years ago, when I was an intern, I went to a talk by a doctor who spent two months in an ICU with a serious illness, from which he had eventually recovered. He talked about what the emotional and psychological experience of having a critical illness was like. This talk is seared into my mind because it was so overwhelming, and I have never forgotten it, and I remember the tears in his eyes as he spoke.

He talked about the strange elision of the line between consciousness and dreaming, the waking terrors, the loss of control, the feeling of the world narrowing down to encompass only his room in the hospital, the loss of time and of season. The nurses and doctors who treated him like a lump of flesh and those who treated him like a person. He talked about giving himself up for dead and then somehow finding himself still alive. And of finding himself, once back from the rehab hospital and at home, completely at a loss.

I think I was wrong in promising you that you would not be alone. The nights are a lonely sea to navigate in a dinghy drifting by yourself, and morning feels impossibly far away. And yet, and yet, you did.

Posted by: Lurker Ann at June 21, 2013 8:22 AM

I have water coming from my eyes, from this deeply touching post and from the deeply touching comments.

Posted by: Lindsay at June 21, 2013 8:28 AM

I agree that you need to seek out a practitioner of Eastern North Carolina medicine.

Doctor B. prescribes a regimen of round-the-clock shit-talking and a billionty ccs of irresponsibility. You can pick up your prescription around lunchtime tomorrow. When you have shown some improvement, we will start you on whiskey.

Also, you shouldn't have tried to sleep on your co-captain, Salem. He looks really cuddly in the picture, but I think that was part of your insomnia.

Posted by: cullen at June 21, 2013 8:55 AM

Huzzah(you're daddy)good sir!! Thx for posting!

Posted by: SWF at June 21, 2013 12:27 PM

Metamorphosis.

That's what happened to you and Tessa, and perhaps slightly to Lucy, but you have both done an excellent job keeping her reactions muted on this blog.

I can only hope that the outpouring of support, messages, tiny and enormous acts of kindness, and deeply expressed love from your family, both immediate, extended and unofficial, your friends and the "the crazy disturbed following you've cultivated over the years" can act as a sort of security guard when you start to veer off the path of recovery. A little nudge back in the right direction - a re-direction if you will - much like we guide toddlers learning to walk.

I dare say that for most of us reading this, had we gone through the same harrowing expereince, would not have found literally hundreds - if not thousands - of souls reaching out to lift us up.

Posted by: kevin from NC at June 21, 2013 12:57 PM

thanks for sharing. it is interesting where the mind goes when there is a void to fill.
Thinking of you and hope for continued recovery!

Posted by: Kaarin at June 21, 2013 8:40 PM

Nerd girl here says that if you know Tolkien at all just realize you got touched by a Ringwraith and it's going to take some time for the despair to leave your soul. Please don't lose sight of that fighting spirit we all admire.

Posted by: michelle h. at June 22, 2013 8:56 PM

I was once hospitalized with sepsis and pneumonia for about 10 days. Most was a blur but the nights my fever would spike and I'd be forced to sleep on cooling mats were some of the darkest moments of my life. I'd stay on them as long as I could but then I'd drag my IVs and cords to the chair next to the bed, hoping the alarms wouldn't go off just long enough to try to get away from the cold. Some nights, they'd have to drag me back three or four times. Once they mentioned restraints, I begged for more drugs to get through those nights. I felt like I was in some wasteland, far away from anything good.

The night my fever finally broke for good, I was up all night. Christine, American Graffiti and The Other Side of the Mountain were on and I watched them in this delirious state, as if they were all one long strange old movie. I was conscious enough to get what was going on but I still felt like someone had a ski mask on my head with crooked eye holes.

An odd side effect, I went into the hospital a constant nail chewer and never did it again after. After being pumped with so many drugs, my ragged chewed nails grew out and by the time I was functional again, I had a full set of nails. I also stopped being able to drink dark sodas for several years. They tasted too strange.

Take your time, don't have any schedules or expectations. Just let things come back - they will. I don't think until I went through this that I ever really understood limits. You have two lovely ladies who love you and lots of people cheering you on.

Posted by: GFWD at June 23, 2013 7:35 AM

Glad you made it through.

Posted by: caveman at June 25, 2013 3:42 AM

scotch?

Posted by: Jeannette at June 25, 2013 11:48 AM

Thank you for sharing, thank you for your lovely family, thank you for being who you are...My love to thethree of you...

Posted by: Jeannette at June 25, 2013 11:49 AM

Thank you for sharing, thank you for your lovely family, thank you for being who you are...My love to thethree of you...

Posted by: Jeannette at June 25, 2013 11:57 AM

Maybe a glass of wine with Tessa...

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