Eh.. At Least It's Not The Gaza Strip

Being sick sucks...

It sucks more when your whole world is reduced to a two foot by 6 foot hospital bed, which is what happened to me about 2 years ago when suddenly I became inexplicably ill. There are quite a few people in our life who have heard this story and others who went through it with us. It was a horrible time for Chris because we had just got married (no, not because of that) and in addition to celebrating our first anniversary in a hospital wing (and letting his brother and my best friend go on our Hawaiian cruise), unbeknownst to me, he was being told that I was dying and they didn't know why.

We lucked out when they sent us (in an ambulance no less) to UCLA in Santa Monica where within days they diagnosed me and started treating me. However, in the meantime, I had lost my ability to walk (which apparently staying as little as 7 days in bed will strip you of this ability, so what the hell's up with "Misery", Stephen King? She breaks his feet, leaves him in a bed for months on end, drugs him, and THEN he's still able to get up and go? [I love Stephen King, honestly. I used to seek out his work after being forced - yes, forced - to read his work in a high school Horror in Fiction class. Yeah, I know...my fault. After being too scared and intrigued to put down "Salem's Lot", I was hooked. I found myself two years later in the horror section in the college library, picking up some guy named Richard Bachman, reading it and wondering, since I had never read any other horror writer's work, if everyone in this genre wrote in this style. {before you SK lovers start writing, yes, I know SK is RB, but I sure as heck didn't know it then. There weren't no Internet back then and my dinosaur was a bit slow on the retrieving my research off the microfiche...children, ask your parents about microfiche...or look it up on it's replacement, Google.}])... I love that I just had to use braces, then brackets, and then a parenthesis to end a thought... ah, the writer in me...


Anyway, these sorts of days can get very depressing and quickly. I think this particular day was one where they had done a lung biopsy AND a bronchoscopy... The lung biopsy is where they give you a sedative just to do the damn thing and then tell you that you're going to taste blood AND that they may not get it since it's only 3mm big and the smallest they've ever managed to capture was 10mm, so be very still or this could be bad... and then bad means that even with the patient nurse (ha, ha) standing in front of you holding you still and the sedatives strong enough to take Floyd Mayweather, Jr. down and let you dress him up like an Oompa-loompa complete with tiny overalls, you don't just taste blood in your mouth, you feel it in your lungs as you - get this - gurgle blood. You've been told not to move or speak, but even under the sedative you're quite convinced that gurgling blood was not an expected outcome of the procedure, otherwise they would have mentioned it. I mean, they bothered to mention that you might poo yourself and that hasn't...wait, spoke too soon.

The bronchoscopy is where they give you a drug where you're awake, but you won't remember anything. They have to do this so that you can tell them when you are feeling pain. I told them beforehand that I was feeling pain constantly so I didn't know if this was such a good idea. And she, the doctor, tells me that this is when I feel new and additional pain, only I don't remember her saying that because I'm already buzzed out.

Chris had to tell me later that's what she said. She also told me, apparently, to do a certain signal when I was feeling "new and additional pain", but it morphed into this strange sort of half Koko the Gorilla move where I beat on my chest with my left fist a couple of times and grunted. My husband thought this was hilarious. I know because, though I could remember nothing else, I could hear him in the room laughing like crazy while I was drugged up and I clung to that memory as they finished up.

The procedure itself is where they put two devices into your mouth and down into your lungs (hence the twilight drugs) - one to numb the way, the other a camera to capture the scenery of your interiors. The beating on my chest, though they tried to correct me because I was causing the camera to jiggle and record as though an earthquake were occurring every 16 seconds, was to signal to the one operator to spray basically a topical that would take the localized pain away while her miniature Range Rover scurried along inside my inner lung caverns. Chris remarked to her that it was like watching video gamers, the way the two of them handled themselves so easily and deftly. She told him it basically was. "Unless you get something unusual - and that's what we're hoping against - it's pretty much all the same. Cute lungs though." - which I guess translates into "pink and no smoking evidence".

So, after these lovely events, I was a bit worn out, mentally, physically, and certainly emotionally. Chris and I were picking at each other most days because I was frustrated and he was frustrated because I was frustrated and there was no one we knew in town. We bickered a little and I cried a lot because I didn't know what would happen and I was frustrated not knowing if this was the way I was going to be forever.

I rolled over and found a small pile of goodies Chris had brought up for me to entertain myself (other than the 4 local stations that were the only forms of TV found in the whole of the hospital. Cable, anyone?). He would get piles of my favorite crack - entertainment and gossip magazines, which of course I never believed a word of but instead treated like my own fairy stories to help me sleep. The top one, though, was the New York Times. On the front page was a woman washing her 6-month old baby in an abandoned bath tub in the middle of the Gaza Strip. I showed him the picture.

We knew the truth. Had that been me, had I been in the Gaza Strip, washing away, trying to survive, I would have been dead and nobody would have known why, and likely they wouldn't have had the time to find out or care. We had the heard the stories about how mothers would die even here in the US, and nobody would have a clue as to why until they did an autopy. We heard how only 15 years earlier they would have only have been able to extend my life by 6 months, and now I could live at least 20 more years.

I was lucky. I am lucky. Very, very, very, very lucky. Though the doctors originally had misdiagnosed me multiple times, one doctor had mistakenly given me a drug that extended my life long enough for them to figure out what was wrong and treat me. I ended up in the hospital where the two top people in the rheumatology field practiced and therefore got back on the road to being better within days.

I'm lucky.

I don't fight lions for my dinner and I don't have to travel miles for clean water. And it sure as heck ain't the Gaza Strip outside my door.

So now, when things are getting bad, Chris and I turned to each other and say...

Eh... at least it's not the Gaza Strip...


copyright - All rights to the work posted on this site are retained by Cass Van Gelder. If you'd like to use some of my work, please ask. To do so, the permissions must be spelled out in writing...from me...I meant it. I have mean cats; don't make me use them.

A Letter to One of My Favorite Writers (originally posted 03-04-11)

I don't know if you guys have ever heard of him, but you should. Ashleigh Brilliant (And, yes, that is his real name). He writes sometimes in small quips called pot-shots and others called Brilliant Thoughts. In fact, here's a website if you are interested:

www.ashleighbrilliant.com

I don't often write to those whose work I love. This is a big mistake. You should always write and let them know. Always, always. I've only done it on three occasions - once to Dorothy Allison (author of Bastard Out of Carolina), Davy Jones (from The Monkees - I had a crush and thought our shortness made us perfect for each other. Never mind that I was 8 and he was in his 40's), and today to Mr. Brilliant.

One of the reasons I wrote today is because 5 weeks ago, a car hit Mr. Brilliant. He's now in the hospital and going through a hard time, as many of us who have had hospital stays have been through. I wrote a letter of my story and some encouragement. And then I thought I might share it with all of you. Some of you might need encouragement. Maybe not today, but maybe someday, and maybe someday soon. Save it and see if it becomes useful for you.

I also thought we all need a reminder to write to those of whom we admire, before they are gone and we miss the chance. Sure, there's a chance that on the Big Screen of Life they might see that you loved them, but why wait? Why indeed?

Enough, enough.... here's what I sent. Good luck to all of you, too.

Cass

Dear Mr. Brilliant,

I don't know if this will ever reach you. I've been a fan of your work for years by accident. I dated a boy who gave me one of your books, and because I was careless of him, I was equally careless of his gifts. Years later while packing to move to New York, I found your book and read it, and even still have it, though probably in yet another moving box.

I'm sorry for your accident. I really am. The event itself, of course, is horrible, but the after effects are sometimes even worse.

Just a few months after getting married and moving into our newly built home, I awoke one morning to what we around here now refer to as The Case of the Meat Paws. (We’ve even thought of creating our own comic book based on it. I just can’t figure out the right super powers one would get with enormously large hands. Opening jam jars?) I tried to think of what would have caused my hands to swell excessively and inexplicably. I went from doctor to doctor to find out what was going on, only to be told one thing or another, even scolded for not just believing them without questioning their findings. The swelling went away with some good steroids (we later found out this small act saved my life), but then pain started in my belly. I ended up sampling hospital food from Las Vegas to a little town near Bryce Canyon in Utah. Still nothing. Just pills.

One day when it was particularly bad, my own male form of Dorothy (this is a reference to Mr. Brilliant's wife, Dorothy), otherwise known as my husband, met me at the hospital and told the people there we weren't leaving until they figured this all out. I guess they believed him because four weeks later, as I laid out as The Case of the Curious Illness, they cut me open hoping to find a solution. Instead, they found two holes in my intestines (which they were kind enough to clean up while they were mucking about) and they removed my gall bladder because I guess they thought it was getting in the way of their Spring cleaning.

Of course, this made things worse.

My belly did not like the way they had feng shuied my insides and rejected everything. It protested in the form of a lovely and large infection - so large, in fact, it burst through my stapled little belly. The hospital staff responded by hooking me up to what they call a wound vac, which cleaned out my insides constantly and made me wish for one for my house - for the carpet, that is.

The problem, of course, was that I was limited in what I could do at this point. Not only this, no one there knew what to do next. They had prettied my insides, but they had not stopped the war inside. Though the majority of nurses were nice, there were a few who were frustrated by my situation. They wanted me to fit into a neat little package they understood. One nurse, so frustrated that I could not do what she asked, resorted to throwing a walker at/near me. My husband, in his oh-so-delicate way, explained where her services could be better used. Guam, I think he mentioned.

There were lovely, lovely nurses though. One particularly frustrating day, I was in complete tears, literally covered in blood from head to toe from all the IVs gone wrong, the injuries and cuts. This woman came in, wrapped me in a blanket, took me into the shower, got in with me - in her full uniform - and helped me to get cleaned off. She rescued my mind that day.

Anyway, after 6 weeks in one hospital, they decided they didn't have the right people to decide what was really wrong with me (I'm sure my mother would have agreed were she still alive, though I’m sure she would have had her own laundry list.) They transferred me 400 miles away to Santa Monica, CA, where I was poked and prodded every single day. MRIs, CT Scans (so many they were afraid they would cause cancer in me), a bronchoscopy (which, if it's not being done to you is actually terribly interesting), a liver biopsy (where they punch a hole in my liver to test it), a lung biopsy (where they punch a hole in my lung to get more material to test - and scare me half to death when I realized I was breathing blood into my lungs), and on and on.

One miracle day, they finally came in with an answer. They said it was Wegener's Vasculitus - a name I still struggle with spelling all this time later. It's an autoimmune disease that usually attacks your nose, mouth, and lungs. While it had a field day in my little pink lungs, it tried to confuse everyone by taking on a different playground.

It still took another 2 1/2 weeks before I could leave - mainly because I had to relearn how to walk (no one ever tells you that something as short as 7 days in bed will cause your legs to give up the memory of walking altogether.)

The return home was frightening, afraid of doing something wrong without having so many people around to watch after me. I spent months at home, weak and not being used to it; loopy from the drugs and being even less used to it.

I hated the struggle back - still do - but the other option, laying back and simply slipping away, well, I'm not really dressed for that occasion.

I'm back and work, these days. And I still struggle. Some days, even this last Monday, are worse than other days, but it's like they say - every day above ground is still pretty friggin' good.

Good luck with all this. It gets better. It might get worse for awhile, but it does get better. And I know I would hate the world without a you in it.

Your admirer,

Cass Van Gelder