Coma Dreams - Too Hot and Never Cold Enough

Joe Strummer and the Mescaleros, Yalla Yalla.

Tonight, as I wait for things to cool down, for my crappy day to slowly wind down, I found myself thinking about how hot I was in the hospital. Imagine if you will, laying in bed, with a fever, being covered in multiple layers of blankets. Now add to this, not being able to move. You cant kick off the blankets. Each day I would sweat through many changes of sheets, over and over. You think they would have gotten the clue.

And where was my mind? In the snow. Walking uphill. Feeling the cinders and ice and small stones under my bare feet. Some slipping now and again. That tingle one gets from being wet, cold but still moving. What makes some of this even stranger for me is that every now and then, I would hear strains of this song by Joe Strummer. Yalla Yalla.

The song's lyrics have no real bearing on anything I hear in the music. Somehow this sound transports me. Even now, when I listen, I am not here. I am not sweating in my humid house. I can feel the cold winds. My feet are chilled and wet. I have no idea why, but this is a good thing, I think.

I've Asked You All Here Today To Discuss...

The Future of Cold Springs Studio:

This was shot five and half years ago. Seems like such a long time ago.

This an excerpt from a letter I wrote to a dear friend, mentor, teacher and potter.





I have put this letter off long enough. I apologize for not writing back sooner.

I am grieving.

This is a long story. If you want the short version, skip to the end. It's all there in the last
paragraph. Otherwise....

Not long after NCECA (National Council on Education for the Ceramic Arts) I took a long (and far too dangerous) drive to the Cleveland Clinic to have a long talk with the best colo-rectal surgeons in the US. I really should have either flown or had someone else drive. We didn't know it at the time, but have since learned that one of the side effects from this coma has been that I have developed extreme obstructive sleep apnea. Apparently I haven't slept real sleep since before surgery. The exhaustion caught up to me about a month ago... but I am getting ahead of myself. Before the drive to Cleveland, we knew that I was exhibiting extreme sleep exhaustion. I had a hard time staying awake on the drive into town(Ithaca) each day for PT. I had fallen asleep at the wheel at least 1-2 times a week. Bad stuff. But I knew I needed to get to Cleveland,
and Nancy doesn't drive. Friends offered but I figured it would be no problem. Luckily I took Aurora with me and she acted as my conscience. When I started to doze she was adamant that we get off the road and made me sleep.

Even with all of our precautions it was still a rough drive.

And that was the easy part.

Walking into a hospital, of my own accord, under my own power... to submit to more
tests, probings, and worse....

It was rough.

Finally I was able to see the surgeon with my clothes on for his assessment of my candidacy
for a "reversal or takedown" procedure. I will spare you the lesson in anatomy and say only
that my chances of a simple surgery fall into the category of slim to none. He wasn't optimistic.
He gave me a few options and a final ulimatum - lose 50# or he wouldn't even consider me for surgery.

I asked him how he would repair my abdomen so that I would no longer have this monstrous herniation at the colostomy site. I also asked him how soon after surgery I could actually RESUME my life as a potter.

He looked me in the eye and said it was time for a career change. I am glad Aurora was there. I might not have been able to walk out otherwise. From the looks of things, I will not ever be able to do what I could do so easily before.

No lifting of things greater than 20-25#. Definitely no heavy lifting. No moving of kiln shelves. Or boxes of clay. Or buckets of glaze. Or boxes of pots.

I thought about this on the six hour drive home. There were hour long stretches where Aurora and I said nothing. The Clash, The Pogues and U2 screamed through the stereo. And now and again, she would find me crying. Sobbing. Trying hard to keep focus.

The following week I met with my cardiologist who let me know that my heart had a scary story to tell about my sleep issues. Short version: I was a prime candidate for a stroke. My heart was being tortured every night... first from lack of oxygen and then from racing constantly to wake me up and start that adrenaline racing. Bad combination.

I just finished my second sleep study a week ago. I am finally sleeping for more than two hours straight. It has been over eight months. As I talk to the doctors they are all remarkably surprised I am even here at this moment.

Since sleeping I have had more cognitive function again... (I have had virtually no short term memory for months. Would realize I was somewhere and have no idea why or how I got there)
Being able to think has been a radical relief. Nancy jokes that my brain running on half-power puts me in the position most folks are in every day. That is simply not acceptable.

So... now that I am sleeping again, I have had more time to think and greater focus during the day. I have been trying to figure out how to dig myself out of this hole I have pulled my family into. We are broke. Well, worse than broke. We started looking at bankruptcy back in March.
Since then things haven't gotten better... until this past week.

So where am I going with all of this? What is the point to this lengthy blathering?
To say that I am letting go of my dreams in clay. I had high hopes years ago, that I would be teaching young college students by now. I had visions of classrooms with students ready for a challenge. Kiln pads crowded with ware carts loading and unloading firing after firing. Smoky air filling the quad as wood kilns and raku firings finished up. Ironically I have never had any real course of study planned. I sure love teaching. Strangely enough, I think the only thing I have ever really wanted to impart is my love for learning.

Which leads me to where this is all going. In letting go of clay, I am taking up my camera again. Fortunately this seems doable. I am finding myself capable and competent. Building a new career is daunting but exciting. It hasn't come easily though. I have been ruminating on this since waking from the coma.

Letting go of my dreams though, has been hard. Walking into my studio and finding nothing to trim, no pots to load into the kiln... and dust and cobwebs where there should be plastic sheeting... it has been difficult. I can still throw pots. And I may. I think if I can find a way to make enough of a living to have spare time again, I would love to make pots as time allows. I don't think that my expectations for this business were ever going to be realized, so this is something of a wake-up call. I love the idea of making the pots I WANT to make, firing them any way I feel like firing them and then, once a year, having a nice studio sale where folks can come and pick out what they want. No orders. No galleries. No showroom. Just pots.

For now, this means we are planning to close the studio and gallery in September... maybe sooner. I am ready to turn the showroom into our new photography space. A clean room with places to sit, to shoot, to review work, to see big prints... who knows? Having said all of this (which I am sure has been far too long a letter for anyone to read) I must apologize. Knowing that you have followed my progress, success and failure alike, means a great deal to me. I know there is a bright future ahead, but letting go of clay has been .... well, you can imagine.

All the best,
Alex

The Birthday That Almost Wasn't

Nancy shot under strobe, 1/200, f/6.3
Details about this image will be the subject of a blog posting later in the week.

As anyone who follows this blog knows, I have the most awesome partner in the world. Nancy has done the impossible this year. She stood by my bed in the ICU, knowing the pain my body was in, not knowing whether I would ever regain consciousness, not knowing if I was really even in there. And she sang to me.

So I came back from that strange place. Bringing with me all the problems of one whose body's warranty has expired. Heck, at this point, I am shocked I haven't been issued a recall on most of my organs. Still Nancy has remained steadfast and determined to keep me on this side of the universe. As she wrote about it in her blog yesterday: I wasn't supposed to see this birthday. No hoopla, no party, but boy oh boy were there a TON of facebook birthday wishes.






She asked me a few days before my birthday what I wanted for my birthday. What could I say? What I wanted at the time she asked would strike most as funny, pedantic, pedestrian even. I wanted sleep. I hadn't slept since before surgery back in September. Not more than two hours of continuous uninterrupted sleep... at all... for over six months.

That's what I wanted.

What I got was my lovely cpap machine and its concomitant hoses and headgear. For my birthday, I slept nearly six hours at a stretch. I didn't toss and turn. I didn't change position in bed at all. When I woke up I felt like no time had passed. Apparently, the exhaustion is so severe that once I zonk, I ZONK very hard.

Tonight Nancy joined me out in the studio to try out some new flash project ideas I had. Now that I can see where the light is heading I am so excited to play!

Some Friends Help

And some friends help hide the body parts.

Marc is one of those guys.

He may be the most squeamish chickenshit in the room, but when I was tied to every fuckin' hose in the ICU, he was there. When my body was blown up to twice its normal size and wires and IVs were coming out of every orifice... he was there.

Every bone in his body said flee! but he came anyway.

When I started coming out of the coma, I was hooked to a trach-tube. That meant my mouth was open and suffering from chronic cotton-mouth. Due to the tracheostomy and the other abdominal surgeries, the nurses wouldn't let me drink until I had passed the swallow test. The "bedside" version of this test requires the patient to swallow applesauce doped with mega-blue dye. Then they ask you to cough. If the blue dye ends up anywhere other than DOWN your throat, then no solid foods, ice, water, etc.

I began my swallow testing while Marc and Carol came to visit. I wasn't uncomfortable, but I really wanted something to drink. I was stoned out of my mind on Fentanyl and other narcotics of the day. Meanwhile Marc kept making jokes about ArtTrail and offering to go "help" with customers.

I wanted to laugh so hard, but the drugs kept me nearly paralyzed. Even now, remembering that moment, I can hear the laughing in my mind, knowing full well I couldn't tell Marc how funny he was. Thank God for good friends. Each and every time Marc and Carol showed up, everything in my world improved.

Yesterday Marc surprised me by just showing up to check up on me. After talking indoors for a while about all my current maladies and general feelings of malaise, we went outside into some seriously shocking sunshine. I had to catch a few images of Marc kickin' back with the alliums.

Wrestling With Cleveland

My, what big teeth you have Cleveland!

I have been wrestling with the repercussions of having driven to the Cleveland Clinic last week. To say that my thoughts have been a little preoccupied the past few days would be an understatement. Before I delve into the morass, let me share the fun stuff.

After Aurora got home from school Tuesday afternoon, we loaded up the van and headed out. Driving headlong into the sun for the better part of four hours left us pretty beat so when it came time to take a break for dinner we were both more than ready. Watching the sun set over Great Lake Erie was something neither of us had seen before.

With a few more hours behind the wheel, we rolled into Cleveland wicked tired and ready to flop. Rummaging through our pile of maps and printouts and directions, we figured out how we were supposed to find the Cleveland Clinic Guesthouse. I had expected parking to be a four letter word with such an enormous medical complex. Someone else must have had the same concern, because there was parking by the bucket!

Before Aurora and I could do more than flip through a couple stations, we were out like a light. Click. Next morning found us sitting in the waiting room of the Digestive/Intestinal Diseases Department. I figured based on the alliteration alone, we were doomed. Hardly. Turns out, they rock!

An hour and a half later, we walked out. My head was more confused than ever. Might have been a product of having the nurses actually listen to what I was saying. Or it could have been all the different surgical scenarios the surgeon laid out. (HINT: For those of you who are even the least bit squeamish, this is a great stopping point)

Let's skip to the good stuff. Turns out, I am a candidate for a reversal. What does this mean? Well, for all intents and purposes, it means that I could rid myself of this colostomy bag and have my plumbing reconnected the way it was intended. In talking with this amazing surgeon though, I came to learn that this surgery is going to be far more complicated than I was led to believe.

Here are the surgical options:
Scenario One: We reconnect what is left of the large intestine to the rectum. Sounds easy right? Not quite. Due to the peritonitis and sepsis, there is a ton of scar tissue throughout the abdominal cavity. The intestines are essentially adhering not only to themselves but also to other organs. This means that they wont stretch nicely or unroll like they would have prior to the first surgery. As a result, he may have to move a huge array of blood vessels that are in the way of bringing the large intestine over the front of the abdomen. Probably a six hour surgery with the potential for some hairy scary complications.

Scenario Two: Take a loop of small intestine and make an illeostomy out of it. Since the waste stream would end there, he could then put the large intestine wherever he wants, and could then hook up the rectum and the large intestine without pulling on everything. This would require two surgeries separated by about six months to a year. More bags dangling off the belly and more chances of herniation.

Scenario Three: This was sort of a last resort solution and one that fills me with the greatest dread. Skip the large intestine completely and go straight from the small intestine to the rectum. For anyone who has ever had Anatomy 101, the function of the large intestine is primarily to de-water stool. What this means in terms of the surgery is that I would have liquid bowel movements six to 14 times each day. With very little control over them. In other words I would be a prime candidate for starring in a Depends commercial.

And then came the caveat: He wouldn't do any surgery until I had lost 50 pounds. Tentatively, he thinks we can do the surgery in September... that's four months. Fifty pounds. Sure. Cake, right? Oy veh.

After leaving the surgeon's office, Aurora and I went to the Cleveland Museum of Natural History. I guess I have never thought much about Cleveland's academic, cultural and cerebral offerings. Lo and behold, it's a pretty snazzy place! The area that surrounds the Natural History Museum, also encompasses the Cleveland Art Institute, the Museum of Fine Art, the Botanical Gardens and a LOT more. Aurora was in seventh heaven.



She got to see fossils of all sorts of dinosaurs including tyrannosaurus rex, a nano-tyrannosaur, triceratops, smilodon (saber toothed tiger), Lucy, dunkeleostus (armored fish), and way more than I can remember. It would have been the perfect way to spend most of an afternoon, but we needed to get hurrying home. We'll save the rest of that museum for another visit.




After returning home I met with my physican to talk about my blood workup he had done before I left. In turn, I shared with him the consult with the surgeon at Cleveland Clinic. As anyone who has been keeping up with this bizarre saga on either the blog or FaceBook is aware, I have been having a devil of a time sleeping. Add to that I am now verging on narcolepsy during my "waking" hours. During a short drive to Ithaca, I find myself falling asleep at the wheel regardless of time of day. I have to have someone beside me talking to keep me engaged and awake.

So I shared these new developments with my GP, and he shared the results of the blood workup. Looks like sleep apnea (as opposed to a drug side effect which was my first assumption)... so in the next few weeks they'll be putting a CPAP machine in my bedroom. We'll see how that affects things.

The most productive concept to come from my meeting with my GP though, was the idea that maybe after having lost fifty pounds I will be more inclined NOT to have the reversal surgery. My gut will be mostly gone, and hopefully the hernia will have subsided substantially. If that ends up being the case, I can't see a good reason to continue with this reversal. We shall see. For now, we diet like madmen and exercise like crazy! We'll see where things are a month from now. Wish me luck!

We are here

We drove all afternoon and most of the night. Now we are waiting to meet with the surgeon. This place is huge. Imagine 35k people working at Cornell. Then imagine an additional factor of 3 or 4 to acct for patient load. This place is massive.

What really happened and what is up with Alex?

The best answer to both of these questions was answered this evening, by my lovely wife. In her blog.

Give her blog posting a read. You'll have probably more than enough information (probably too much info).

http://coldspringsstudio.blogspot.com/2010/04/on-stoicism-and-stomas-or-what-hell.html

At this point I am pretty glad no one took any pictures of me during my stay in the ICU. The earliest images post-surgery were shot at my out-patient physical therapy.

What's Going On In The Studio?

I get asked frequently: What's going on with the studio?

Well, errmm, uh, well... you see.. uh,.... there's this problem.... well... uh.
The problem is that making pots is a lot harder when your ostomy has herniated. My belly hurts a lot more than it ever did prior to being operated on. It makes it really uncomfortable to stand and lean against my stomach at the wheelhead. In fact, it makes things almost not worthwhile.





At first, my arms and chest had a really difficult time of things... due mostly to the muscular dysfunction I have been dealing with post-coma. The latest and more frustrating issue is this darned herniation. It is bad enough having a bag attached to my midsection, but now that it has grown in size to where I look like my tummy ate a coconut; it really gets in the way.





My hope is that within a year, I will find a surgeon willing and able to re-attach my plumbing and get this whole process reversed. The idea of another surgery is terrifying. (for those just tuning in, see my blog posts back in Nov, Dec and Jan for the exciting ramifications of coma-dreams)

You may ask yourself... so WHAT HAS been going on in the studio? For the most part, I am getting a small amount of pottery made each month since January. Not a lot, but good pots nonetheless. This month we managed to re-create a color we had been aiming for unsuccessfully for over 8 years: Matte Purple. I have been making teabowls and canisters and footed mugs mostly. Hannah has been making LOTS of plates and sorbet bowls. I have no idea what's going to happen when she leaves here at the end of the month. Ideas? Suggestions?



This week was spent photographing things instead of making pots. First series of images from today's shooting have been edited and here they are: TEABOWLS.

Three generations of Sollas

Three months ago, I woke up from a month-long chemically induced coma. During the time I was out, my mother came up from Florida twice. I can't imagine being in her shoes... the parent watching their offspring tied to a gurney so as to not pull out all the various tubes and hoses and wires keeping me alive.

My mother spent Christmas afternoon and evening in a panic, waiting for my sister to fly in from England. Only problem was that she was held up in Detroit because of the Holiday Terrorist. Apparently the plane that arrived just before hers made it so that they had to wait on the tarmac for over three hours. Luckily, they eventually released the planes and passengers and Mag made her way to Florida.

As sort of a post-Christmas gift surprise, my mom and sister came up to visit before New Year's. I don't think there has ever been a time when my house has ever held three generations of Solla women. Listening to Aurora cackling like a turkey, totally bowled over laughing, I realized that she, my mother and my sister all have the same laugh. And here it was; all this laughter in my house.

My mother and sister hadn't seen me walk out of the hospital. They hadn't been there when I made any of my "firsts" in PT. More than anything else, they just wanted to see that I was alive, intact and functional. Nevermind that I had already told them this via phone, email and through the blog. They needed to see it.

I am starting to understand now.

Today, I can say with a smile of pride (as though I had something to do with it... not really)...
that all of the horrendous holes that the surgeon drilled into me before Christmas are finally HEALED! I have no more holes in my abdomen!!! Nancy and I celebrated last night by NOT doing a wound change before bedtime. This means so much to me. Most of all, it means I can have my normal routine again. Showering first thing in the morning has always been my way of waking up... since I was a pre-teen. Now I can not only do that, I can manage the post-wound care needs on my own. And best of all... it doesn't hurt.

So what does all of this mean? It means I can begin to work out harder at the gym at PT. It means I can stretch out my walks farther each day. It means that when the winter passes I can start getting out on my bike again. It means I lived.

Physical Therapy - Happy New Year

As a surprise, my sister and mom decided to come up and visit us for the New Year. I hadn't expected to see my mom till February. Bear in mind, I go to physical therapy no less than two times each week. While they were here, they REALLY wanted to go to PT with me so they could see what I was working on. Both Aurora and Maggie were kind enough to catch me in various states of frustration, awkwardness and pain. The upshot is that it reveals that I am improving.

Happy New Year everyone. Two Thousand Ten is gonna be a very different year for this family... and we're starting it off right!

By The Light of The Night

Night falls and with it, energy sags. In this waning miasma Nancy and I find ourselves most every night. I have always wanted to capture the sensation of that glow coming off the computer and how it feels like your energy is being drawn from you bodily. Nancy was a willing accomplice tonight,... for her it was window shopping for shoes. For me, it was getting a chance to play with gelling lights. Too much fun for us both.

Certainly better than what we were doing an hour earlier.... wound care.

Yesterday I went back into the hospital to have those wonderful sutures (otherwise known as shark trolling line) removed from my abdominal wall. Mind you, these were buried about two inches INSIDE me. So yeah, they dug down, through blistered, abscessing wounds, found the blue plastic suture material, and pulled three feet of continuous line out of my body.

That was the good news. Tonight we found out that our local hospital can't bandage worth a damn. They used dry gauze which in a deep wound acts like velcro to fresh tissue. Hurts like a sum-bitch when time comes to yank it out. Seeing as how we have to do this daily, it is infinitely easier and healthier to have moistened gauze. Saline is your friend. These idiots basically made me blow through four massive clots tonight. NOT fun.

Now, an hour later, I can finally relax a bit. Nancy has cleaned me up, repacked my wounds, and bandaged me back up in such a way so that tomorrow night we wont be pulling out chunks of my furriness as we change dressings again. I like my fuzziness best when it stays on the skin-side of the bandage and tape!

Going Back In

This morning I head back to the hospital. Yeah, another procedure is required. Apparently my body is rejecting the intra-abdominal stitches. I have had these nasty blisters running down my mid-line incision since being in the ICU. I assumed they would heal pretty quick. It has been over 12 weeks since the surgery, so we should have beautifully healed over skin... but I don't. Last week, these blisters decided to give me a little surprise. Every other night, I would wake up in the middle of the night, feeling something cold and wet all around my torso and arms. I guess the blisters were tired of playing nice. Blood and puss everywhere. Yuck. Ruined my sleep and did a number on the sheets to boot.

I finally saw the surgeon a week ago, and he was very cool about things. Said he would open one of them up and just remove the sutures. After jabbing me with lidocaine over a dozen times, he started rooting around. Forty minutes later, he gave up. Said he needed better light, different tools and I needed better drugs. So we rescheduled for today. In the hospital. Fun eh?

So why begin this blog posting with a picture of Aurora? Because I woke up early today to see her off. She leaves for the bus to school really early. I needed a chance to make sure she knew I loved her. She is still wicked upset and worried. Having seen me with dozens of tubes coming out of every natural orifice (and many new orifices too) in the ICU, she was scared this would be more of the same. No one who saw me then wants me back in the hospital. But, I have to go. It's time to get these sutures out so I can finish healing these open wounds.

Once I can safely say the wounds are filled in and healed, I can get cranking on rebuilding my abdominal muscles. After that, I can start throwing pots again... I hope.

Coma Dreams #1

Yeah, I know. Not everyone wants to know what it was like while I was in the coma.... so if you don't, now's the perfect time to hit your browser's back button.

Today as I was felled by this nasty head cold, something hit me from out of the blue. Not sure what triggered it. Within seconds though, I was reliving an odd aspect of one of my coma dreams.

As I was prepping for the first "swallow" test, they feed you applesauce mixed with a seriously blue food dye. Apparently the dye shows up as a leak if you are unable to swallow properly. Considering I had been ventilated for over a month and still had a trach-tube in... swallowing was rough.

The setting: I am sitting in my recliner, waiting for the speech pathologist to administer the test. Meanwhile: All around me I can hear voices, but something is amiss. The voices slowly become more sharp and distinct. I am definitely not hearing English. Not sure yet what though.

A nurse aid comes into the room and says something I can't quite make out. Then proceeds to tell me that I should expect some changes in hospital staffing. Then goes back to speaking Slavic.

Bewildered, I look around the room, obviously unable to get up or really move around. As I survey the equipment, all of the instructions are either in Spanish or in Russian. What on earth? So I asked the nuse aid: her response was that it was simply cheaper to provide care this way.

With the first couple gulps of the swallow test down, I knew I had to urinate. A lot. I was sure that it was all going to come out blue and leak everywhere. Mind you, I was actually sporting a catheter at the time, and was semi-conscious. Not enough though. Weird stuff happens on all the drugs they had me on.

I probed further. She replied that now that the hospital was incorperating with multinational corporations, they had to maximize profitability and the easiest way to do that was to start with folks who would work for less. She explained that she and her family lived near the hospital. For some of my care, she would be bringing me to her home. Apparently her mother was an RN and was moonlighting as well.

Moonlighting or bootlegging depending on how you look at it. What they would do is when a patient could be moved out of the ICU they would take them home instead of the post-operative care unit. There, family members would administer to the patient's needs. In addition, they would collect unused medical supplies that would otherwise be thrown away at the end of the shift. They repackaged them and sold them on the black market to folks who couldn't afford proper medical care.

So as I lived with this family, my mother and I got to know them pretty well. Apparently the husband of the family had injured his back severely in a firefighting accident. All of the kids were nearly finished with school and two of them were planning to work for the hospital. They all worked as "outreach" for the community. They provided care, medical supplies and serious help to folks who would never otherwise be able to afford a hospital stay.

The dream ends with me laying on the dinner table having their youngest sons who were still in high school, drawing blood for a workup. They kept telling me we needed to hurry because it was almost dinner time and they needed to set the table. But I shouldn't rush, because that would skew the results. Their care was impeccable. They were skilled and compassionate. It sort of made me wonder what it would be like to live in a world like this. I am sure this is common place in other parts of the world.

How to know you're HOT

It has been four weeks since I left the hospital. During my six week stay in the ICU, I ran pretty constant fevers. You know you're hot when the hospital staff has to search high and low to find a fan big enough to cool your body down. Apparently I was always so hot that the fan became MY fan. It went everywhere I went. When I was moved to the short-stay surgical ward after the ICU, the fan came along too. When they came to bring me down to the rehab unit, they brought my fan too. The funny thing though... I never needed it again after arriving on the rehab floor.




It is hard to explain how devastating it was for me to be in the ICU. I am not even sure now how much that time has affected my life. Being confined to four walls for a month will make anyone stir-crazy. Add to that the incessant bells and alarms going off all hours of the day and night, and you get what is affectionately known as ICU Syndrome. When I was taken outdoors one day in October, the sky was brilliant blue, nice breeze and the trees were aflame with color. Just feeling the sun on my face and the wind on my skin was like being re-born. I felt alive and safe for the first time in what seemed like forever.




I have to come to realize that I spend a great deal of time out-of-doors each day. Whether that time is spent walking, hiking, running errands, gardening, moving stuff from the house to the studio.... all of it adds up to lots of time observing my surroundings. The sounds of birds, the pine trees overhead creaking or even the cars driving down our road, all are part of my daily life. Being cut off from those sounds drove me crazy. Even now, if the house is too quiet I have to open a window or door so I can hear things outside. Fortunately, I am able to find a way to be outside everyday now. I walk around the yard, meander to the studio and occasionally drive into town. Each time I head out the door, I smile, knowing that this is right. This is home. I am safe and sound in our little house. It is good to be back.

Pass me the Passy-Muir!

Just kidding. I don't want to wear this thing ever again (if I can avoid it!). But in the ICU, I had to be intubated and placed on a respirator... fun fun fun. It took over a week of being in the ICU (with me trying, in my unconscious state, to tear out the tubes) before they finally gave me a tracheostomy. In other words, they cut a slot into my neck and slipped this device in. Nice... it allowed for air to get in without me having something in my mouth. It was stitched to my neck. On the inside of the device was a balloon, which was inflated so that it would effectively seal the trachea from that point down... ie, no mouth air. It also meant I couldn't speak. Then again, I was unconscious for over four weeks with not much to say. Once I began to waken from this chemically induced coma, my biggest frustration was being unable to speak.

How do you tell a nurse that you are overheating with piles of blankets on you when you can't speak? I couldn't even lift a hand to get someone's attention. There wasn't enough strength in my body to even press the nurse call-button.

On top of it all, I had pneumonia. Yeah, imagine hacking and coughing up loads of mucus, for days on end. Now imagine choking on a straw in your throat at the same time. Add to that, the inability to tell anyone that you're going out of your mind in fear of drowning in your own mucus.

Each night, Nancy or my mom would sit by my bed, siphoning the mucus clear of my trach-tube. None of us slept for three days and three nights. It was awful.

And then as the worst of the coughing began to subside one of the doctors decided it was safe enough to try out a Passy-Muir device on me. So what is this thing of which I speak? It is a cap, with a one-way valve that allows someone with a trach-tube to speak without having to put their hand (or in my case, someone else's hand) over the tube so air comes out your mouth.

With one small press of this cap onto my trach-tube, I could suddenly tell the world everything.
And my first sentence in over a month? "What do you want me to say?"
Yep. Oh, yeah. And we all cried.

From that point out nurses knew NOT to pile me with blankets, NOT to touch my toes (they had to stay uncovered or I would overheat!), and to make sure the fan stayed on ALL the time. I had a voice and I made it heard.

Here, in all it's glory, is my Passy-Muir. Invented by David A. Muir in 1990 who became ventilator dependent after becoming a quadriplegic. Thank you Mr. Muir. Your invention became a ray of hope for me. If I could communicate, I could start to change things. And things did change.

Now imagine how the nursing staff felt when in the rehab unit, I asked to keep my trach-tube and Passy-muir after it was taken out. It came out two days before Halloween. In PT we made jokes about blowing all this hot air out of a slot in my neck. We thought it might be fun to get some duck calls and tape them on to my neck so when I walked and breathed out it would quack. We never did it, but it was a funny image.

Now I have a trach-tube and passy-muir sitting on my kitchen table, waiting for me to do something with it. It is something between a trophy and an artifact. I fought mighty hard to be well enough to get it; I'm not ready to throw it away just yet.

Close to the Edge

My wife did an exemplary job of trying to keep everyone abreast of my condition while I was in the hospital ICU. Even after I regained conciousness after a month in a coma, she still continued to write about how things improved. For all intents and purposes, reading about one's self and having no memory of the events is like reading fiction. This week I began reading the medical reports from my ordeal. I made it twenty five pages into a 295 page document... and then I lost it. What little I know about medicine I learned from my family's medical chaos, from my time working as a videographer for the trauma unit in Miami, and from watching House M.D. Definitely doesn't qualify me to even play a doctor on tv. But I know, when reading, what bad looks like.

Allow me to give you a brief synopsis of what I read and why it hit me so strongly.

These things were all going on simultaneously:
1. Septic shock (BAD news!)
2. anastomotic leak with probable fecal spillage (my guts were leaking internally)
3. Lactic acidosis
4. Sinus tachycardia (sinus rhythm at a rate greater than 100 beats per minute )
5. Leukocytosis (an increase in the number of white blood cells in the circulating blood that occurs as in some infections)
6. coagulopathy (problem with blood coagulating)
7. hyperkalemia (the presence of an abnormally high concentration of potassium in the blood)
8. hyperbilirubinemia (the presence of an excess of bilirubin in the blood)
9. evolving renal insufficiency
10. urinary tract infection
11. fever

All of these spelled disaster. Two surgeries later, I would have experienced two lavages (where your organs are pulled away and washed -inside and out), and would remain unconcious and wired/hosed to every machine in the ICU for a month. Eventually pneumonia would keep me from getting the tracheostomy (surgical formation of an opening into the trachea through the neck especially to allow the passage of air). Every time I came close to conciousness I would try and pull out the tubes in my throat and nose. Not cool. All the while I ran wicked fevers; soaking through multiple changes of bedsheets everyday!

Somehow, Nancy kept fighting. Friends kept visiting. I was unconscious and unaware... but apparently my body knew. When my vital signs were really bad, Nancy would sing to me... and the vitals would normalize almost immediately.

Everyone keeps telling me that my fortitude and strength are what got me through this ordeal. I don't think so. I think I was very nearly gone. My bet is that the huge tug on this side of the universe kept pulling me back. Once I regained consciousness each day was measured by my time with Nancy, visits from family and friends .... and of course the beginnings of PT. I don't know if I will ever be able to thank folks like Lloyd (my PT) for all they did to give me hope. When you can't even begin to move your fingers or your hand... hope seems very far away. Take away the ability to talk and hope is an abyss.

But we did it. Somehow, I pulled through. Reading these medical records is hard emotionally. On some level, they happened to someone else. In as much as they happened to my body, I wasn't there. My recovery now is based on where I WANT to be, not on what they did to me. Each time I go out for my mile walk, I touch the stop sign at the end of our block... just to remind me that I am on this side... this is real! I can touch things again, I can move, I can walk. After two months of ICU syndrome, I no longer hear the nurses' call bells at night. Sleep is comforting, albeit still painful. Soon this pain will fade and pass. My hope is to then re-read this mountain of medical reports. It would be nice to be able to box this ordeal and know my life had moved past it.

Helpless

Tonight I figured I would write a little bit about being helpless. As anyone who reads this blog regularly knows, I spent a month of this fall in a coma. In the following three weeks before I entered the rehab unit, I drifted in and out of a drug induced haze. I was unable to move a muscle. Not a finger. On top of that I was unable to speak for the better part of two weeks. During this time I was expected to participate in PT while still in the ICU. In order to do this I was lifted bodily out of bed by means of a hoist device. I would be strapped in, nylon bands cutting across my torso and groin, pinching my catheter, my feeding tube, oxygen tube, and a half dozen more wires and hoses getting caught on all sorts of things. This then would pull at my face, crotch, chest, you name it. It was never simple. Some days I would get whacked in the face (more than once!) with the spreader bar of the hoist. It was never uneventful or relaxing.

Then they would move me to a reclining chair with the premise that being upright would help circulation and help get me over my pneumonia (which it did). For the first week, being upright made me cry. It was all I could do to sit up. I couldn't even hold myself upright. I would start to lean within about 4 minutes. Some days the PT nurse would do range of motion exercises and I couldnt even add any input. By the end of the second week, about the time I could finally talk via this device attached to my trach tube, I was ready to speak my mind.

Instead I found myself so grateful to be able to communicate, to be able to tell Nancy how much I loved her, to be able to talk to Aurora to let her know I was ok and that she was loved... with all of that foremost in my mind, I couldnt really complain.

Which brings me to my thought for the evening: there is a transition from being helpless to being able to begin to help yourself. For me, I knew I was making that transition when I was able to help encourage others on the rehab ward. So what does it mean to help yourself? What does it really mean to be helpless? How does one ask for help? I am lousy at asking for help. Yet as soon as I was unable to physically ask for help, it came out of the woodwork.

I cant begin to thank everyone who has helped Nancy, Aurora and I. Without a doubt, we couldn't have done it without help. I would not have made it back from that coma without all the help we received. Saying thank you sounds so small compared to how I feel. I am so thrilled to be alive... to be back... to know I have more life to live.

Many friends have asked what it was like in the coma. I am going to try to write about it. I will probably try to put it into a small book form rather than the blog. If you have a desire to read it when it's finished, let me know. I can tell you it wont all make sense and the imagery is both personal and surreal.

For now though, I need to catch up on some sleep before another day of PT tomorrow.

Anxiety and Fear

As I was posting to Facebook tonight I realized that for all of my attempts to write about life here on the PT ward, I have left out some of the more difficult aspects: Anxiety and fear. In my case, the anxiety hits me like a ton of bricks every night, right around 8-9pm. Makes falling asleep very difficult. It seems to center around my fear of falling asleep and not waking up for a month. Having experienced my coma for a month, I dont think this is an unreasonable fear. Things are improving bodily, with each day showing physical improvements and more control while walking and such. The fear of more surgeries and complications though hit me broadside as soon as I try to go to sleep. The upside to all the heavy duty PT is that I cant fight off sleep. I am off to zzzzs about 8pm. But on nights where the exercise has been light, or in the case of weekends, just about non-existant,... I am still wide awake till nearly midnight. Not a great way to get a good night's sleep.

I would love to find solutions to this ongoing sensation. Some part of me is thinking it could be tied to any one of the numerous meds I am taking... anti-clotting meds, zoloft (still havent gotten anything definitive about zoloft), various pain meds like fentenol (sp?), vicodin, blood thinner, blood pressure meds,... all of which have likely side effects. The question is whether that is the root cause. My suspicion is that this anxiety is pharmaceutical rather than psychological stems from the timing. 8-9pm, regardless of lighting, sounds, or visual stimuli make me think it isnt just night falling. Gotta be something more.
Ideas anyone?

More Steps Towards Freedom

Today being Saturday, we have the day "off" from PT. What it really boils down to is that we get just 1/2 hr of PT and that's it for the day. The PT nurse was someone new who'd never worked with me but was willing to pick up right where my usual PT nurses left off yesterday. The best part was that she had many different techniques and approaches to essentially the same movements.

The best part of PT though was more walking. This time it was different. The PT nurse decided it was time for me to try it without the assistance of the various appliances we've been using. Instead I held her hand lightly (didnt really need it) and walked down to the nurse's station. On the way back I had to stop and hold onto the wall for a minute. It is extremely exhausting walking any distance still, but doing it freehand required so much more concentration, focus and strength that I was just exhausted after my walk. It was a fantastic sense of freedom. This was the farthest I have walked and it was just a hint of what is to come this week as we prepare to send me home. I may end up walking at home with a cane for a while as I regain my strength and stamina. So much muscle to grow back still.

That was Saturday. A day "off" but still a day of learning and pushing this body to relearn how to walk and move. More fun tomorrow!

Adventures on a Thursday

Normally Thursdays are just another day of hard work on the rehab floor. Today things were a little different. For one thing, I was in a lot more pain (I asked for my pain meds to be decreased earlier in the week)...but more importantly, I got a new walker today. This one is sized for my height and best of all, HAS WHEELS! So I can totally cruise now. The biggest coup today though was walking with just the assistance of the wall. Yep, I was cruising the hall just holding onto the wall... a week ago I couldnt hold a pen or lift a book. Strength is slowly coming back but it is one heck of a growth curve. I have never experienced this level of pain before. Each day there is two to three hours of PT and OT. Today the OT was showering. Two showers in two days. Talk about perfect! The only downside is that it takes about twenty towels and half an hour to shower. I can finally wash myself unassisted which does a ton towards making me feel MUCH more human.

I am slated to go home in ten days. That means I have a lot of healing to do. I want to go home fully capable of climbing our stairs unassisted, of walking from the car to anywhere in the house... it just means I have to keep pushing myself everyday in PT.