One Year

"Against the Stream" Acrylic Painting

“In 8 days you will get out of the hospital.” My husband says this to me as we are driving back from dropping off paintings for a show. I knew the one year anniversary was coming up. I’d been trying to compose a blog in my head since the “one year to the day I went into the hospital” date passed. It’s a milestone. It’s how we measure our lives, these individual years. I should have something to write about.

One of the gallery owners tells me that she feels my post illness paintings are actually better. I’m starting to agree that there has been a recent shift in my work; just in the past few months. I think I’ve developed an increased confidence in my ability and also a calmness that I didn’t have before when I painted. Either the weight of not knowing what I had or where it could lead was crushing me more than I had consciously realized or the actual effects of the illness itself on my body could have been to blame. Whichever the reason, the painting process has become more enjoyable, the brush strokes more purposeful, my hand steadier and completion times shorter. I still find fault with my work, but this drives me to improve and grow.

Or maybe it’s just the passage of the years, growing older. I don’t care so much what others think or how they feel about me. I realize that art show judges are just expressing their personal opinions (and biases). Whether I win something or don’t, I try not to attach too much relevance or emotion to it. I stand up for the things I believe in especially if it’s not the popular opinion. This new found confidence is hard won.

Or maybe it was having faced an uncertain future. Believing there weren’t any more years to come, even after surviving the crisis, shifts your perception…or it should. Through my life, I’ve used the “will this really matter in 5 years” philosophy when responding to something that causes stress. It makes it easier to shrug off the little things. I’ve amended this with, it may not matter in 5 years, but is it central to my core beliefs. Be true to yourself. All of our futures are uncertain and it’s sad most don’t think about the bigger picture until they are staring it in the face. Over the past year, 2 people I have known comitted suicide. They couldn’t see a future. Another has been been paralyzed from the neck down in a motorcycle accident. Doctors believe he can recover, so he is facing a tough year of rehabilitation. My year has just ended. His just beginning. I can only offer that whatever the outcome, you can adapt. You can be happy. You can have a great life.

One year later. My illness is not at the forefront of every thought any more. In fact, I have to put Post It notes on my monitor at work to remind me of the next antibody infusion. Strength of body and mind have improved. I can now concentrate fully on my passion, painting.

“In 8 days you will get out of the hospital.” My husband says this to me as we are driving back from dropping off paintings for a show. I knew the one year anniversary was coming up. I’d been trying to compose a blog in my head since the “one year to the day I went into the hospital” date passed. It’s a milestone. It’s how we measure our lives, these individual years. I should have something to write about.

One of the gallery owners tells me that she feels my post illness paintings are actually better. I’m starting to agree that there has been a recent shift in my work; just in the past few months. I think I’ve developed an increased confidence in my ability and also a calmness that I didn’t have before when I painted. Either the weight of not knowing what I had or where it could lead was crushing me more than I had consciously realized or the actual effects of the illness itself on my body could have been to blame. Whichever the reason, the painting process has become more enjoyable, the brush strokes more purposeful, my hand steadier and completion times shorter. I still find fault with my work, but this drives me to improve and grow.

Or maybe it’s just the passage of the years, growing older. I don’t care so much what others think or how they feel about me. I realize that art show judges are just expressing their personal opinions (and biases). Whether I win something or don’t, I try not to attach too much relevance or emotion to it. I stand up for the things I believe in especially if it’s not the popular opinion. This new found confidence is hard won.

Or maybe it was having faced an uncertain future. Believing there weren’t any more years to come, even after surviving the crisis, shifts your perception…or it should. Through my life, I’ve used the “will this really matter in 5 years” philosophy when responding to something that causes stress. It makes it easier to shrug off the little things. I’ve amended this with, it may not matter in 5 years, but is it central to my core beliefs. Be true to yourself. All of our futures are uncertain and it’s sad most don’t think about the bigger picture until they are staring it in the face. Over the past year, 2 people I have known comitted suicide. They couldn’t see a future. Another has been been paralyzed from the neck down in a motorcycle accident. Doctors believe he can recover, so he is facing a tough year of rehabilitation. My year has just ended. His just beginning. I can only offer that whatever the outcome, you can adapt. You can be happy. You can have a great life.

One year later. My illness is not at the forefront of every thought any more. In fact, I have to put Post It notes on my monitor at work to remind me of the next antibody infusion. Strength of body and mind have improved. I can now concentrate fully on my passion, painting

Sounds Abound

Hydrangea Heaven

Note: I have Sensorineural Hearing Loss most likely as a result of my primary immune deficiency.

I’ve heard people who just got their first pair of glasses speak in awe of suddenly being able to see individual leaves on trees and such. I’ve never heard anyone speak of visual overload when putting on their glasses for the first time. It doesn’t quite work the same way with hearing aids. I’m suffering from auditory overload and I’ve only had them on for 4 hours. I’m hearing everything and everything is LOUD. Clothes brushing against my body, my own footsteps across the floor, the road underneath the moving car, the sound of a Kleenex® pulling away from its box. Things that I had forgotten make sound. My brain is confused. Paper rustling and people talking are getting the same level of attention and I’m having trouble separating out the voices from the rest, so at the moment at least, though everything is louder, I can’t really hear any better. I must relearn what background noise is and how to filter it out of my conscious mind. I can’t imagine what a truly deaf person experiences after receiving a cochlear ear implant. I’m told it takes about a week to get used to wearing the hearing aids. I’ve basically been “walking around with earmuffs on”, as the audiologist put it. I must say, I have a new understanding of the phrase “silence is golden.”

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The first 24 hours:

Doctor holds up several sheets of paper by one corner and gently shakes them. I might as well have been standing next to a waterfall.

I’m handed a stack of batteries and I reach to grab my purse and slide it across the vinyl sofa and marvel that it makes a loud scratching noise as it slides.

The ambient voices I’m hearing remind me of listening to an old radio broadcast. They have that kind of a tinny, hollow, distant quality. Before I wouldn’t have even heard them. It will be interesting to see if that improves.

I walk to the bathroom before leaving the doctor’s office. I hear my footsteps and a now annoying bottle of Tylenol® that I’ve carried in my purse forever whose pills are rattling incessantly. No amount of repositioning will fix it. I think I can guess the number of pills by the sound alone. The bathroom is small and I’m alone. Good thing since my pee sounded like a pressure hose at the self-serve car wash.

I get into the car and it occurs to me that I ought to turn down the radio prior to starting the engine. I do. Quite a bit…but not enough as I jump in my seat when it comes on. I’ve left it on a local station that plays current to 1970’s fare and am greeted by Billy Joel belting out “it’s still Rock-N-Roll to me.” Since I’m familiar with this tune from before the hearing got so bad I decide I need to listen to some newer music where my mind couldn’t fill in the sound gaps with past memory as it has a tendency to do. I turn it on the Alternative Rock station. Where I learn that for the most part, my poor hearing was not the reason I couldn’t make out the song lyrics…

I make it in to work and hear all these voices as I walk down the hall and keep turning toward them thinking they might be speaking to me, since they are now as loud as when someone was actually standing right in front of me. I sit down at my desk and jump when the printer behind me starts spitting out paper. An animated conversation breaks out and it sounds like they are yelling. I want to say stop, stop! I hear every sniffle, paper crinkle, foot shuffle and computer keyboard clack.

The noise from my bag of Chex-Mix was nothing compared to the crunching of actually eating it which momentarily blotted out all other sound and made me feel like people in the next state could hear it. Now I understand why all five dogs come running at the slightest crinkle from a chip bag. I have dog hearing!

A lunch run yielded an unexpected break-through. I could actually understand the order taker at the Wendy’s drive-through. Though for some reason, she tried to add cheese to my burger when I asked for no mayo.

Nothing could have prepared me for a trip to the bathroom at work. I was affronted by a cacophony of toilet flushing, water running and automatic paper towel dispensing all reverberating from tiled walls and floor. This was too much. I nearly switched off the hearing aids.

The drive home made me worry that the car was falling apart. I could suddenly hear all kinds of engine noises where there was silence before. More music and playing with how far I could turn the volume down and still hear it.

Pulling in front of the house, the voices of all five dogs were clear and loud, though 3 of them were in the house. If I was a thief, I certainly wouldn’t break into my house.

I expected the screaming of the 2 macaws, who chime in right along with the dogs, to be ear-piercing, but their voices must be in a range high enough that my normal hearing picks up. They weren’t too much louder. The quiet Red-Bellied parrot was another story, but a pleasant one. Instead of yelling at me when I get home, he dances to get my attention. Similar to the style of a hula-dancer…big circles with his body.  I knew he also made a noise when he did this, but neither my husband nor I could make it out. It now came through as a low, but clear, “Whoooooooo! Whooooooo!…long pause, more dancing….Whoooooooo! Whooooooo!” He was really getting into the dancing!

I moved some laundry into the drier, then spent the next half hour repeatedly getting up to check the door thinking the Border Collie was scratching to come in. It turned out to be the sound of clothes tumbling in the drier.

Turning on the TV nearly exploded my eardrums. The German Shepherd and Aussie decide to entertain me with world class dog wrestling and I hear dog nails scritching across the floor. The new 2 pound kitten is smack in the middle of it attacking the German Shepherd’s tail.

My husband gets home from his mini-vacation trip tomorrow and I’m anxious to see if I can hear him better.

Watching the 10 o’clock news, I play with taking one hearing aid out at a time to see what difference it makes. I’m concerned about the right-ear. It may be too far gone to be getting much help. With only that hearing aid in, I’m getting a delay. It’s like watching a movie where the sound is slightly off from the picture (and being in the bottom of a well). I’ve inadvertently learned to read lips somewhat and I can see that the what I’m hearing is not matching the lip movements.

It’s finally time to give my brain a rest from the auditory overload. Good night all.

Two brains are better than one

Oranges

I was asked an interesting question the other day. “When you were really sick, how did it affect your artwork? Better? Worse?” I’m sure that many artists have a deep emotional connection to their paintings during creation and that what is going on in their lives affects not only subject matter, but color choice as well. I have the blessing, or curse depending on your point of view, of being equally left and right brained. My husband told me that he had just described me to an attorney friend in the following manner, “my wife creates paintings and reads Science magazine.” When I paint, I go into ‘the zone’ so to speak. I’m not really thinking or feeling anything on a conscious level. I instinctively break down the image before me into its basic components, shape and color. I’m not really seeing the object or scene as a whole, just minute pieces. It’s kind of like looking through a microscope starting at the highest magnification, when I’m happy with the smallest details, my view widens slightly to take in a little more of the surrounding area to see how it works together. My view keeps expanding until the piece is finished. This is completely opposite of most artists I know.

 

I believe this is why I can paint so realistically. It’s objective. I’m painting what I see without preconceptions of what something is supposed to look like or what color it is supposed to be. I remember listening to NPR one day and the person being interviewed (sorry, I don’t remember who) was describing an exercise where a still life using eggs and a yellowish light was set up. Adults were asked to paint the scene. I believe non-artists. They all painted the eggs white. Eggs are white. Clearly though, the eggs in the scene were a dark beige.

I’m not completely detached from my paintings. Before the paints touches the board, I’ve given quite a bit of conscious thought to what I’m going to paint, what size the painting should be, object placement, but after that…it’s “the zone”… In the zone, I believe it’s both sides of the brain working in unison. I experienced the same thing when I played fast-pitch softball. I pitched. I was extremely accurate. I couldn’t tell you how or why. I just was and when I pitched, all external stimuli faded away. I was calm and I performed well. My arm knew exactly where to stop and release the ball. How hard to throw it.

To some extent, I believe this dichotomy in myself is what kept me sane while I searched for an answer to my illness. The left brain was able to remain rational throughout the ordeal and navigate a way out of the maze even when it seemed there was no progress being made and no exit. There were days when I tried to be depressed. I was just so tired of searching that I wanted to wallow in self-pity, but that damn left brain wouldn’t let it last for more than a day. That damn left brain kept me going. “There are people a lot worse off than you,” it said.

My art. In terms of technical ability, you can’t tell which paintings were created before the illness got so bad, during the bad time or during recovery. I’ve touched before on a need to paint florals and landscapes, pretty, happy things, in the during and after, in that way, my illness did affect my art, but I think I’ve begun to move past that emotional barrier. The desire to paint something of more substance is returning. Both sides of my brain agree, I’m feeling better than I’ve felt in a long long time.

Note: I suddenly remembered one softball game where I hit my thigh during a pitch. The ball came out of my hand and smacked the ground about 2 feet in front of me. My team, their team and all the spectators watched as this ball rolled along the ground and directly over the middle of home plate. It was a perfect pitch, if it had been 18 inches higher.

All Eyes and Ears

 

Hands #5 Self Portrait

Yesterday I was watching a television drama where a blind woman was playing piece of music by Bach on the piano. I was mesmerized by its beauty. I remembered a childhood friend once asking, “if you had to lose either your sight or your hearing, which one would you choose?” Such deep thoughts for an 8 year old.

 

Today I was sitting in a small room with headphones and other various contraptions stuck on my head to determine the extent of my hearing loss. Last year I felt I had lost a significant amount of hearing in my right ear, but was too overwhelmed with the CVID to be concerned with it until now. I had a full battery of tests done in 2006, so we were able to compare results.

I had asked my hematologist if it was possible that swollen lymph tissue could be affecting my hearing after reading a book called “As I Live and Breathe” by Dr. Jamie Weisman. She became a physician after receiving a diagnosis of a primary immune deficiency. She mentions having tubes placed into her ears so she can hear. I cautiously get my hopes up. He referred me to an ENT to explore the possibility.

The audiologist walks into the room after each test with a look of great concern and at one point says, “okay, we are going to do this a little differently.” I knew that didn’t bode well. When he’s finished testing me, I’m placed back into a regular room to wait for the ENT. I’m looking at the medical illustration posters on the walls, mixed in with photographs of what looks like Sedona, Arizona. The doctor walks into the room with the same look as the audiologist. Hope evaporates. Surgery will not help. The right ear has suffered significant nerve damage since 2006. This is likely due to an autoimmune process. It will continue to deteriorate. He wants to slow it down, “we have to do something, you’re so young…” He looks sad. I’m taking in the information clinically, not emotionally. I’m in doctor mode. Rationally, what does this mean, what are the options…steroids? I toss this suggestion on the floor and stomp it into oblivion (never, never again) explaining to the doctor that I’ve been down that path and have no intention of ever returning. Chemo drugs? Don’t think I want to go there either. My situation is unusual, he says he will discuss it with the hematologist to hopefully come up with some ideas. In the meantime, a hearing aid should benefit my left ear at least.

I’m standing at the checkout desk waiting to schedule another appointment for the hearing aids and I realize my eyes are filling with tears. I wasn’t consciously even thinking about it. I manage to make it to the car before breaking down. Will I eventually go deaf? Will I never hear Bach again, my husband’s voice? I love his voice, he used to read to me on occasion. We don’t seem to find the time now. I feel a sudden need to cram all kinds of music and sounds into my head.

I’m telling my husband what I have learned. I hear myself saying, “At least it’s not my eyes. I couldn’t lose my sight. What would I do? I’m a painter.” It’s the same answer I gave my eight-year old friend without hesitation so many years ago.

The “Chair” Painting

 

Quiet Room - Completed May 2009

 

 

Propped up against the window next to my drawing table is a large unfinished painting. The room in the painting is stark. Only a portion of a window with sunlight streaming in and a large, plush southwestern-themed chair exists in addition to the blank wall and wood plank flooring that comprises most of the piece. I started it in July or August of last year. There wasn’t much to distinguish between the days of those two months. It was easy to lose track of time. 

I’ve probably painted a dozen pieces since I started the chair painting. I’ve placed it where I can’t help but see it every time I sit down to paint. I even cleared the entire table at one point to make room to work on the piece, but it still sits alone and abandoned. I still have time to finish, I keep telling myself, before the competition I plan to enter it in comes around in May.

I think about when I started it. The only dividing time that exists for those six weeks in the hospital is “before the lung resectioning” and “after the lung resectioning”. During the Before time I could still walk, though weakly, and I refused to wear the massively oversized hospital gown that would trip me. This sometimes confused staff when they came in looking for the patient. I had a bandana that I tied the portable heart monitor in and then tied to my wrist. I’d take it, my IV pole with anywhere up to 5 medications at a time hooked to it and the call button device over to a chair by the window. The first room I had in ICU overlooked a garden which had a waterfall. I liked this room best. I’d drag the second chair to face it and prop up the masonite board. The rolling bedside table held paint, brushes and water. 

The After time was different. Walking was very hard. My leg muscles which had already been damaged by high-dose steroids, were worsened by being stuck in a room in bed. Getting back into bed required me to lift my legs onto it with my hands. They were nearly useless. Just sitting up was an ordeal and now in addition to the IV lines, I had a large clear plastic chest tube stuck in me that led to a large, heavy glass bottle. Normal clothing was not possible. If I wanted to get up, I had to have help. I tried propping the painting against the end of the bed. The light wasn’t as good as by the window. My hands shook. My hands shook so badly that I was making the painting worse. I stopped painting. I cried.

I’ve never been a procrastinator, that’s not the problem. The painting is associated, in my mind any way, with a difficult and scary part of my life. I think that’s the problem. I’m not entirely sure. It’s more a subconscious thing. I had intented to create some pieces that dealt directly with my illness, but I haven’t been able to do that either. Right now I’m drawn to my florals and landscapes. Pretty and innocuous things, non-threatening. I guess that’s what I need right now. 

I will finish the chair painting. When I’m ready.

What Does It All Mean?

 

The Morning Paper

If you are an artist, what does your art really mean to you. I’ve been thinking alot about this lately. When I first started painting again after nearly 7 years of not painting, I was somewhat terrified. Questions plagued me. Can I still do this? What medium should I use? How big? How small? What style? What subject? What if I fail? 

That was the real fear…what if I fail. I think my personal identity had become so entangled with my artistic skill that if I failed, who would I be? No matter what subject I became interested in as a kid, I was always still an artist whether I realized it or not. I wanted to be a marine biologist, so I read books by Jacque Cousteau and drew dolphins and whales. I wanted to be a veterinarian and drew all kinds of animals. I wanted to be an archeologist or anthropologist, so I drew hieroglyphics that I saw at the King Tut exhibit or drew the evolutionary stages of man. I loved the science, but I loved drawing and painting more. 

I had continued to work as a graphic designer or freelance illustrator, so it wasn’t as if I had stepped away from art all together, but staring at a blank canvas was not the same to me as staring at a blank computer screen with a given set of elements to work with…the product, the copy, the marketing goal. The blank canvas allowed for an infinite number of choices. Choices that were all mine to make. Making the wrong choice terrified me. You might be thinking, “there aren’t any wrong choices in art,” and you might be right. 

I think alot of my problem was that I always knew who I was. I never HAD to explore or try new things to figure out what I wanted to do. I had never really floundered in any part of my life. I had never failed. A painting professer I had in college told me that most of his students were like sponges, trying out all the styles or suggestions he offered, but I wasn’t. I integrated into my work what I thought fit and disregarded the rest. He was neither complimenting me or criticizing me, merely pointing out a characteristic I wasn’t consciously aware of. I really hadn’t been aware of this trait in myself and I think I missed out on new discoveries or personal revelations because of it. 

I did finally choose a medium, realized that I hated canvas and preferred to paint on hard board, and decided not to limit myself to one particular subject. The fear of failure still hovers above me. It’s just part of my nature, I can never really banish it. I have discovered that the paintings I wanted to throw in the lake at some point during their creation are usually the ones people respond to the most. It seems that the more I push myself and struggle the stronger the result. 

I have learned more about myself through my art. Setting up a challenge and working through the struggle is how to grow as an artist and as a person. Don’t become complacent or become paralyzed by fear. I’m learning to take chances. My art is still completely tangled up in how I perceive myself, but I think I like it that way. 

 

Lost in an Electronic Age

 

Grasslands II

There’s a commercial running now that shows a family on an outing to a Natural History Museum, one of my favorite things to do as a kid. I can’t remember what specific company it was for (which means it failed as an advertisement), but the voiceover extolls the virtues of being “a 3G family.” I’m paraphrasing here…”You can post your vacation videos online before you even return home. E-mail Grandma a picture of a lion one minute a dinosaur the next…” And we zoom in on the daughter, eyes glued to the phone screen, dinosaur bones in the background. All I could think was, how sad. She’s not seeing any of the wonderful things around her. She’s taking photos and staring at the flat, 2-dimensional pixel representation of the wonder that is right in front of her face.

Now, I have a website, a blog, a Facebook account, a cell phone, an iPod. I grew up with computers, okay we had a TRS80 (Trash 80) when I was in 7th grade, but I taught myself some Basic and wrote cute little animated programs. I’m computer literate. More than many people in their 40s, but damn, you got to draw a line somewhere. Looking at a Monet on a computer screen is not the same as seeing it in person. E-mailing your friend is not the same as sitting down together and having a cup of tea or going to a play. And playing with a virtual dog, don’t get me started. Nuance is lost, touch, taste, smell? You deprive yourself of a complete experience hiding behind a computer screen.

I’m not innocent. Ususally, it’s a digital camera glued to my face. Searching for things to photograph and make into paintings later. Field of vision restricted to what I see in the viewfinder. If I had a camera with me driving to work, I fear there would be days that I’d never make it in. I keep seeing ‘paintings’ driving to and from my job. Yes, I enjoy photographing, but I can get too caught up in it, especially while on vacation. I have to force myself to just put the camera down and enjoy what is going on around me, to walk around my garden and really see and smell the flowers, take in everything. I think children are losing that ability. Do they even have time to sit and stare at the clouds, making them into animals? Watch a meteor shower? Learn to cook? Play an instrument…and a Wii instrument does not count! Are they even interested in doing these things or do their minds mimic the clicks, bleeps and whirrs of an electronic age?

We can’t afford to lose creativity. It will take creative thinking to solve the problems of this world and we don’t want to end up like humanity at the end of H.G. Wells’ “Time Machine.” Don’t know what I mean…read the e-book.

…and I’ll sit here behind my computer screen thinking up new things to write for anonymous readers basking in the glow of their monitors…

The Beginning

 

Wildflower Bouquet II

As the song says, “every new beginning is some other beginning’s end.” I’ve experienced 2 new beginnings in the past 3 years. The first spelled the end to a life of relative good health. Oh, there had been some bizarre quirks along the way. Warnings from my body, but no one, including myself, interpreted them correctly. I was young, I was thin, I was active, nothing serious could be wrong. One doctor even said, “We’re really good at finding the things that could kill you. We can’t find anything.” Therefore, nothing to worry about, yes? Fortunately, I knew better. I knew doctors were fallable. I was a zebra in a land of horses. A purple zebra from Mars at that. No one knew what to do with a purple zebra from Mars. I kept searching. I kept getting sicker.

I spent 6 weeks with constant vertigo…when walking, it felt like I had just gotten off a boat or ice rink…you know that feeling that you are still moving when you’re not. Except in a moving car, then it would stop, so oddly, I could drive just fine. I kept working. Then I couldn’t eat without massive systemic reactions. I just didn’t eat at work. My heart would race faster and faster. “You are having panic attacks.” Only when I eat? “There’s nothing wrong.” “Okay, there is something wrong, we just can’t find it.” Then I get passed to the next specialist, only to rack up a long list of what wasn’t wrong with me. 

Then it happened. At age 40, I have a heart attack. A mild one, no damage. My heart, well, stuck. Stuck at over 240 beats per minute. The chambers couldn’t refill fast enough to pump blood out to my other vital organs…and I had actually walked around with this going on nearly continuously for days.

They gave me medicine to stop my heart in the emergency room. I felt like a misbehaving computer…just reboot it and it will probably be okay.  They were rebooting my heart. It’s supposed to restart in 5 seconds. 5 seconds came and went. I started drifting farther away. It was silent. One faraway voice asked, “are you still there?” It finally cleared my system and my conciousness was yanked back abruptly. All the noises of the machines returned. People running everywhere, it was a downtown urban hospital in the middle of the afternoon. Packed to capacity. The team of doctors turned to leave. I hadn’t realized how many were there. The rapid beeping returned. “Let’s try it again.” I know the panic I felt at that moment showed on my face. One doctor looked right into my eyes. “We NEED to try it again.” He said it firmly in a voice that told me that I really didn’t have a choice. I assumed that there was no other option.

If you are going to die by your heart just stopping. It’s really not a bad way to go. I was rather peacefully drifting away the first time. The second time. I kept asking, “Has it cleared? Has it cleared?” I was struck by the fact I was laying there with no heartbeat talking. Talking! This time it cleared faster. The doctors hadn’t even turned to leave, when the racing started again. Different medicine was brought in. Eventually they stabilized me enough to get to ICU in the cardiac wing. My heart kept racing intermittently, but didn’t stay stuck too long.

Right before the ER drama, I had been at the hematologist’s office, the latest in a long line of specialists. He suspected an immune disorder, but we were testing for other things too, among them, carcinoid syndrome, a rare cancer. I had been told so many things by this point that my faith in doctors was at an all-time low. Perhaps, I just couldn’t allow myself to have hope only to have it snatched out of my hands. 

To summarize the six-week hospital stay, further testing for carcinoid syndrome was negative, but revealed a rapidly growing lung abscess. An abscess that would likely have killed me, if I hadn’t had the heart attack and ended up in a hospital. Strange thing to be grateful for a heart attack. A third of my right lung was removed. “This is the second most painful surgery you can have…after open heart surgery.” “You will likely have major complications or die, since your immune system is so low. You are a poor candidate for surgery.” I know they have to tell you the worst case scenario, but I wonder if going under, believing you aren’t going to make it, doesn’t make you more likely to die. I had no doubt about the surgery. I didn’t hesitate. I wanted it NOW! They wanted to wait a few days and pump me full of antibiotics and reduce the levels of medications I had been taking in order to force my body to accept any food. I hated waiting. Waiting is stressful. That’s when you get nervous, left alone at night to your thoughts of “what if?”

Obviously, I didn’t die. The cardio-thoracic surgeon seemed somewhat mystified by how well I recovered. His initial gruffness and aloof behavior (my husband had taken an intense dislike of him at first) melted away. I started feeling more like this child. He would pat me on the head when he came in. He told me about another artist that had been a patient and I could see one of his paintings in the waiting room office. He was kind and concerned. I know a sense of certainty, arrogance is essential in a good surgeon, you can’t afford to hesitate or doubt yourself, but I imagine also that NOT getting to know the people whose lives you hold in your hands is also essential. They can’t afford to care. Caring clouds rational thought.

Part II. I survived my body’s meltdown, and I had a diagnosis- Hypogammaglobulemia. My body wasn’t producing enough antibodies to function correctly, mainly the IgG class. This is a rare disease. My symptoms were somewhat atypical. The beginning of the rest of my life now depended on once a month antibody infusions. This is the only treatment. This is an expensive treatment. This sucks. At least with cancer, you have a chance to get better. Be cured. The infusions are for the rest of my life, plus I am at risk for autoimmune disease and cancer as well as infections. I voraciously absorb every last detail I can find on the internet. I am baffled by people who just take whatever a doctor gives them and not even know what it is or don’t want to learn about their disease. As if not thinking about it is going to make it go away or that it doesn’t exist as long as you don’t say it out loud. You are your best advocate. You must become an expert. The disease does not replace you. It doesn’t change who you are if you don’t let it. I am an artist. I am an animal lover. I am a gardener. I am still me. Just stronger and ready to move on to a new beginning.