Sunday, October 30, 2011

"I asked myself about the present: how wide it was, how deep it was, how much was mine to keep."

- Kurt Vonnegut, Slaughterhouse-Five

Wednesday, October 26, 2011

Johnny Eck "The Amazing Half-Boy" and Latent Sexuality

I've been thinking about Johnny Eck a lot lately. He's been a hero of mine ever since I saw him in Todd Browning's Freaks (1931)--a film that I absolutely love. I've always found something about him really attractive. Sounds corny, but he had such a sunny disposition and a certain charisma. I think that if he had a lower half to his body he would have gone on to be a good leading man during that time period. You can see the clip of him from Freaks below:

Anyway, I have several books about the history of circus sideshows and many of the most famous characters. As my body has become more and more disfigured over the years from various surgeries and parts being removed, I found a strange attraction to learn everything about about the lives of these performers. Frog Boy, Monkey Girl, The Living Skeleton, The Two-Faced Man, etc all had interesting ways that they responded to their special gifts and curses. Johnny Eck didn't show any regret for his lack of legs. When asked if he wished that he had been born with legs, his reply was "Why would I want those? Then I'd have pants to press."

Two things have made me think of Johnny often of late. The first is a comparison between paralysis of the lower body to just having no legs at all. (Me and my macabre questions!) Which is better?

When people say someone is paraplegic, it is generally understood to mean that person is paralyzed from the waist down. Oh how I wish that was the case with me! I'm actually paralyzed up to the armpits, which is much more troublesome because all the muscles in my core are not operating. I can't hold myself up straight for very long in a wheelchair. And all my organs don't stay in held in place exactly where they should, giving me a warped, bulging shape and pulling at my spine.

So it makes me wonder how much easier my life would be if I had no lower body at all? Dragging around all the dead weight of two useless legs keeps me utterly dependent on others. I'm being held prisoner in my own body, with useless limbs being my human ball and chain. That brings me to the next issue, which is particularly painful--I feel akin to Johnny in the sexual department.

Long before I was struck with paralysis, I viewed some of Johnny's personal art. There were a number of pornographic style drawings found after his death that fascinated me when considering his dilemma. What happens to a person is missing reproductive organs? Or if they don't work at all? Is there still a desire for sex if you have no bodily response at all? I don't mean to imply that all sex requires a penis and vagina. But the reproductive organs as a whole are a driving force for desire. (Or are they?)

I don't actually know what Johnny's situation was for sure. I just know his body ended at his ribs and he was born that way, as an incomplete twin. I imagine on psychological level at least there must have been a massive amount of repression throughout his life, and his fascination with drawing cartoon-like penises seems to show a disconnect from mature sexuality. The pictures below are described on one of his websites, The Johnny Eck Museum:

"These drawings were done by Johnny Eck during the winter months when he was at home for the off season. They date from the late 50's to the late 70's. These drawings are highly sexually charged and offer an insight into the repressed sexual feelings Johnny felt. They also offer a commentary on the negative, changing face of the neighborhood which Johnny had called home for so long."

One of the things that I am bitter about in regards to my situation, is that I feel like I have been ripped off in two ways. The first being that I am paraplegic. Ok, fine, I'm paralyzed. There are plenty of para and quadriplegics out there who deal with their accident or whatever robbed them of use of their limbs and they go on to live wonderful, full lives. The gradually make their homes more comfortable and obtain vehicles. They can exercise and build strength in a number of ways.

But I don't get that consolation prize of life. I cannot exercise because the hospice staff is afraid my bones will break (since the cancer is in my bones and seems to be making me weaker lately). The nurse told me one of her past patients with similar case tried to wave goodbye to her one day as she was leaving, and then toppled forward in agony. Simply waving goodbye caused a number of bones to spontaneously shatter in her arm. They are becoming more concerned with me that my time in the wheelchair is getting risky.

Ok, so that is the first rip off--I have to get a death sentence, in addition to paralysis. The other rip off is that many people who are told they have "X" amount of days to live, end up spending the rest of their time doing the things they always wanted to. Like the Make a Wish Foundation. They go to Disneyland, maybe Hawaii. They can go to another state to see someone's baby born. They get backstage passes and meet-and-greet with a band they loved since high school. They can take a dream cruise.  Those aren't all the things I would do necessarily, but I sure do have a list of things I WISH I could do, some very simple (and yes that does include sexual things). However, due to this stupid paralysis I can't even do the whole Hollywood ending that movies and TV have been promising for years with their tearjerker films about "The Big C." I can't even take a walk on any beach and feel the sand on my feet, never mind Hawaii or Tahiti.

I'm just sitting out here in the middle of the desert, hoping there will be enough money to get a medical transport to Denny's, followed up with an exciting trip to Walmart in the next week or two. So I call that the other major rip off.

But back to the latent sexual desire. I must admit, when facing death, there is usually a massive need to reaffirm life in some way, sex is one of the most obvious. I've felt frantic several times in past, like the night before my left breast was cut off, to just do SOMETHING with the damn thing before it was gone. This disease is so cruel. It chips away at your sexuality, and even your gender identity. In the doctor's care one becomes a hairless, boobless, sexless alien creature. Even my toenails have started falling off due to lack of circulation. I can't even be allowed to have nice feet! WTF?

So I may start drawing cartoon penises soon.
In the meantime, friends, please promise me you will put me out of my misery if I ever start acting like that cancer patient Chloe in Fight Club. I'm sure you all remember...
                           JACK (V.O.) 
Ahh, Chloe.  Chloe looked the way
                 Joni Mitchell's skeleton would look
                 if you made it smile and walk around
                 a party being extra nice to everyone.

Well, I'm still here -- but I don't
                 know for how long.  That's as much
                 certainty as anyone can give me.  but
                 I've got some good news -- I no
                 longer have any fear of death.

     APPLAUSE from around the room.

But... I am in a pretty lonely place.
                 No one will have sex with me.  I'm so
                 close to the end and all I want is to
                 get laid for the last time.  I have
                 pornographic movies in my apartment,
                 and lubricants and amyl nitrate ...

     The LEADER gingerly takes control of the microphone.

Thank you, Chloe.  Everyone, let's thank Chloe.

Tuesday, October 25, 2011

D-Day (Diagnosis Day)

I wrote in a previous post about the last day I ever walked, earlier this year. On that day I didn't actually know what was wrong with me until a couple weeks later when I finally went to the hospital. However, if I would have accepted the diagnosis and advice they gave me on the first day I visited the emergency room....I am quite sure I would not be here even writing this blog today. I had to challenge their initial diagnosis based upon my instinct.

Two events caused me to take the step of going to the emergency room. Aside from latent fear of the cancer returning,  I wasn't enthusiastic to visit the hospital for more pragmatic reasons. First of all, I knew exactly what they would say if I complained about back pain--they would just take my money and then blow me off and send me home with some Motrin. Even though my feet and legs were feeling numb, the real pain was in my back, shooting up my spine. The numbness was just a strange nuisance at that point. I was so busy trying to take care of my kids, run errands, and work somehow in between, that I grew accustomed to being in pain a lot. I would have to be literally disabled before I would stop and take care of myself at that point. And that is what it came down to.

While interviewing a friend of mine who happened to be a nurse, for research on a screenplay, she began watching me with a lot of concern at the way I was moving. I staggered around like I had a wooden peg leg instead of a real one and had to use a cane. She urged me to get it checked out. So I decided to just look up the problem on the internet and see if I could diagnose myself. I was still convinced that if I went to urgent care or anywhere they would just tell me to get rest and take Motrin, like the many, many times before when I sought help. I didn't want to pay money just to hear that again. I've learned time and time again that they simply refuse to do anything for "back pain," and often become suspicious that you are hunting for prescription meds just to get high. However, I noticed online that there was one back pain situation where one should definitely go to the emergency room immediately. That was cauda equina syndrome. If I had that, nerves at the end of my spine were being compressed and if there was not immediate surgical action I could become paralyzed forever. When I looked at the other symptoms for cauda equina, I realized that they matched up with mine. I had just recently had some strange bladder urgency issues. Maybe it was just a UTI, but I wanted to rule out cauda equina at least.

Finally I called up a nurse hotline to try to get a second opinion to justify an emergency room visit. The nurse said that yes, I needed to go directly to the emergency room and I should go to the one in Joshua Tree. Of course I didn't go directly there. I picked up my daughter from ballet class, ran a load of laundry and sent off a couple important emails--just in case by some chance I ended up stuck at the hospital for several hours. Finally I left the kids and drove myself down to the emergency room and checked into triage where I was promptly told to pay a $100 copay.

When the doctor finally examined me, I brought to his attention that I was very concerned that I might have cauda equina compression because of the symptoms I described. I also brought to his attention my history with breast cancer. The last occurence was in 2008, but I had a mastectomy with clean margins and was negative for lymph node involvement. The doctor did a CT scan of my lower body and left leg. He then declared that I just had sciatica pain and that was causing numbness in my leg. He said that it should clear up in 2-3 days and he gave me a small prescription of Vicodin and some antibiotic to treat a possible urinary tract infection. I asked if the CT scan was clear and he replied that there was some little "artifact" showing on my lower spine, but that after consulting with radiology he decided it was too perfectly circular in nature to be anything but an artifact, so don't worry about it. It was the equivalent of a speck of dust on a lens.  I thought he should clarify with an MRI. But he was young and treated me with the dismissal  one gives a hypochondriac who looks up illnesses on the internet and becomes convinced of infection.

I hobbled back home on the crutches they gave me to replace the cheap cane I was using. I was kind of surprised that sciatica could be bad enough to require crutches to walk, but whatever. On one hand I wanted to be relieved. A doctor told me it was nothing serious! So it was NOT the return of cancer and the end of the world! And it wasn't cauda equina.

Oh how I wanted to believe all that! But my mind kept nagging me. Why didn't he give me an MRI? Considering my history, an MRI was in order. Well he didn't because HMOs don't like to pay for those and it's like pulling teeth to get one. I was restless all night, uncomfortable with the way my feet were ice cold to touch and the creepy anesthetic feeling. I just couldn't accept the diagnosis. I've had sciatica issues many times before, and my body was telling me this was not sciatica. I decided to return the next day, to the same emergency room, and just pressure the hell out of them to give me an emergency MRI. I was a little afraid they might turn me away since I had just been discharged the night before. But they were happy to take another $100 from me.

So upon my return the next day I got an older  doctor. He sat down with me as I explained all my symptoms and outlined why I felt an MRI was in order. I was ready for a fight, but he couldn't agree with me more. He was even surprised I had not been given one before, considering my history. So I got my MRI, and then laid on the gurney to wait 2-3 hours for results. Part of me was not happy that I had gone and done this. I felt like bolting from the room and driving home and pretending I had sciatica for a little longer.

The doctor opened the curtain to my cubicle, sat down next to me and told me I had "lesions" on my spine, lumbar area. He didn't have to explain to me that those "lesions" were most certainly cancerous tumors and that meant I had just catapulted to Stage 4 of the disease and that I was likely terminal now. He looked at me and we both knew that I knew what the deal was. I would have to be immediately transferred to the nearest Kaiser facility that had a neurosurgery unit, which meant Fontana.
I said "Ok, I understand. May I please have a Valium?"

"How many milligrams?" was his reply.

All I could think about was my children, and that I hated myself and my stupid body for letting them down. This was the last thing they needed after all they had overcome and dealt with in the last year.  There was a tidal wave of agony inside that would be so easy to give in to and cry for hours. Instead, I reined in all emotion immediately. But there would be no way to function if I fell apart. I told myself I would grieve about it another day, when there was time. (That day still hasn't been fit into my schedule)

I did have one small hope about my condition at that time. From what I understood, the lesions on my spine were small. It was located very low in the lumbar region (and I was right about it being a cauda equina related issue as well). It might be possible to deal with it surgically. I would still be at Stage 4, but perhaps my life could be extended longer that way and maybe more sensation would come back into my legs. With that in mind I made a number of phone calls to arrange for care for my children as the ambulance came to remove me to Fontana. For some reason I only anticipated being gone for maybe a week or two. I had no idea it would be months before I could return home, and that I would returning under hospice care. And just in case everything wasn't bad enough, another set of bad news was coming my way soon...

Fontana turned out to be a waste of time. It was a very old, overcrowded hospital and I wanted out as soon as possible. I was supposed to receive a more extensive emergency MRI while there, but they did not perform that, even after I had an accident due to the clutter of equipment jammed into that tiny room. Three days passed without the "emergency" MRI, and I could feel the paralysis starting to crawl up my legs and set in further, which frightened me. I insisted they send me to their Irvine hospital, so that I would be near my Orange County family, and also where I knew I could get an MRI quickly. Irvine had a beautiful brand new facility that I had stayed in before. But that idea got shot down because I found out that there were only three locations in the entire system that had neurosurgery units. And each one was at the oldest, most primitive facilities they had - Fontana, Sunset Blvd, and Anaheim. I voted for Anaheim, although I had very bad memories of going to chemo in the basement there and hated that location.

Upon arrival there I got my MRI, and then I received the next set of bad news. I didn't realize the first MRI I had out in Joshua Tree didn't even cover my whole spine. As it turned out, those lesions on my lumbar region were child's play compared to what had grown up in the middle of my back in the thoracic area. Those were much larger and developed, and we still didn't know if I had developed a secondary bone cancer or if it was the original breast cancer metastasized into my spine.

It seemed like they should have operated right away, because the paralysis was crawling further up my body by the day. But they messed around for days upon days upon days waiting for various other tests and scans (each with a backlog of patients ahead of me) and then accommodating strange insurance loopholes, such as the one that said I could NOT have a PET scan if I was an inpatient of the facility. I would have to be discharged first and made into an outpatient and then I could come back in a week for my appointment to have my PET scan at the hospital. It was the most insane thing I'd ever heard of. And it resulted in me being discharged in a bad state, dumped into a filthy nursing home where I promptly had an accident again soon after. I was returned back to the hospital via ambulance, with a severe pressure ulcer on my tailbone and they finally magically waived that outpatient requirement and graciously allowed me to stay in the hospital for the next days until my name came up on the PET scan waiting list.

By the time they did operate on me to try to remove or "debulk" the tumors in my upper spine, and perform a laminectomy, I was already fully paralyzed--which means the chances of ever regaining sensation after the surgery are pretty much shot. The surgery only gave my family, or my father in particular, the false hope that it would fix me somehow and I would walk again as soon as they did that. He did not understand that the surgery was merely for palliative reasons at that point.

That surgery was the worst I've had in my entire life (and I have had many surgeries). The pain afterward was so unbearable that I could hear myself screaming at times, but didn't realize I was the one making the noise. The ICU nurses were horrible and without the slightest bit of mercy. They under-medicated me by a long shot and did not understand my tolerance was already high despite constant referral to my charts. I heard all the other people in that ward suffering terribly also for several nights and it was like a scene from the movie Jacob's Ladder. Even when I was finally sent downstairs to the regular ward again, I was so weak that I couldn't even pick up my iPhone. The worst part was that I went through all that for seemingly no reason.

The surgeon could not remove the tumor because it was wrapped right around my spinal cord, and thus impossible to mess with at all. I was now fully paraplegic, and it was determined that I could not receive any more radiation treatment due to the placement of the tumor. It was at this point, when the pathology reports started coming in that the Oncologist visited me and dropped the news that he anticipated I had about 60 days left to live. We were both pretty matter of fact about it. I said, "6o days?? Damn, that's not enough time. You really think that's what I'm looking at?" He nodded, and urged me to wrap up my affairs promptly. We shook hands and he took off to go hand out some more death sentences before his shift was up I imagine.

In the days after, the next epic meeting would come, in which my entire medical team and the social worker came into my room to discuss how I wanted to handle the remainder of my life. I wanted to have that meeting alone with them, as I have always faced all of my medical decisions and announcements alone, without family members that might become emotional and distract me. But I was strongly urged by the social worker to include at least one family member, so I went ahead and allowed my Dad to come. That turned out to be a torture session for my father to listen to, and he had to leave the room a time or two because the news was so upsetting. I don't think he really thought I was terminal. I still hadn't shed a tear over my fate and I was businesslike as usual, taking notes.

I think in the end, perhaps it was good for him to hear the news from the whole medical team so that it would be believable.  Just coming from me he might just think I was pessimistic. To this day he still sends me articles about possible miracle cures. If someone's cousin's maid's friend's stepbrother had any type of Stage 4 cancer and then lived on ten years, I'll be told about it. I don't mean to always shoot him down by pointing out details like the fact that it's a different type of cancer or that nothing about their cases match mine.

As far as death discussions go, that is where it really becomes difficult to speak frankly. I believe that if you know you are like 99.9% likely to die soon due to an illness, it is better to be able to spend quality time with those you love, to be able to say your goodbyes in a fun and peaceful way, and work on overcoming all of the fear related to how things will go down in the end game. Other people consider that to be a negative attitude, and think it is better to deny that outcome completely and seek that miracle cure that must be out there somewhere. There is a lot of burden placed on cancer patients to have a "positive attitude," and though I am all for positive attitude in general, it also implies to many cancer patients that they are failing if they can't keep it up. We often say that people "lost their battle" with cancer if they are die, and I find that rather disturbing. We didn't choose this disease. We are not LOSERS because our bodies eventually give out. The constant denial of reality can stress a person out and have an even worse effect in some cases. It is also a front that we put on to help keep other people from experiencing stress. But why should the cancer patient have to expend so much energy always pleasing other people. THEY are the healthier ones.

I believe that there is strength in facing reality, and then planning your demise on your own terms as best you can. And hey, if a miracle happens and we beat the odds, that is only a bonus. Facing reality doesn't mean denying a possible happy outcome. Look at my case for instance--I have surpassed 60 days, and I am not dead yet. I haven't counted how many days I am past my expiration date, but one could say that each day is a miracle now.

How I actually feel about facing the idea of my own death is probably not at all what you would imagine. There are many layers of feeling surrounding that issue, that are constantly taking shape. I recall long ago before I was diagnosed with this disease asking myself and others a macabre question that I think many have considered at least once in their lives. If you could choose which way you wanted to die, would you choose a long, drawn out (and possibly very painful) death through illness, or would you prefer to die quickly with no warning through a car accident or something similar? Of course the quick death seems much easier. But if you knew you had say six months to live, you could say goodbye to everyone, you could wrap up affairs and make sure family is taken care of, maybe even do a few things you always meant to do before dying. However, you may experience months of massive physical pain, lose all "dignity" (usually meaning loss of bodily functions), and maybe you would not even know who your relatives are by the end of it.

So which is better? Quick death by accident or the long, drawn out one? I'll tell you what my choice would be in an upcoming entry. I'd be interested to know if anyone else has ever considered that, and what their answers may be.

Sunday, October 23, 2011

Introducing a new guest blogger: JUSTICE

I'd like to introduce everyone to an amazing artist, poet, and designer - my daughter Justice. She has volunteered to be a guest writer on this blog, so you may hear from her time to time.

Death is not a subject we avoid or step on eggshells around in our household. We've had many discussions about it, and she is also willing to fill in and help write for me if/when there comes a time that I am no longer able to. It is my wish to document everything that happens right up to the last possible moment. More importantly, hearing what life is like from her point of view and her thoughts in general should be enlightening.

I've really learned a lot about my daughter during this last bout with illness. She showed a side of herself that I've always known was there, but it still moved me so deeply to have her really step up the way that she did. There were a couple times in particular that I don't know how I would have made it through the night without her help.

Truthfully, my illness at this point is kind of a pain in the ass to some people close to me. I can't blame them. If you are sick long enough it is inevitable that you will become a burden, even to those with the best intentions. It just gets old. I understand that and have learned to accept it. On top of that, facing terminal illness also makes everyone's true colors come out. People that you assumed would be there for you might all be M.I.A.. But then others, maybe a distant friend you haven't seen for years will go far out of their way to spend some time with you or support you in some way. It's always surprising.

Considering what a drag it is for a teenager especially, to be stuck in the position of part-time caregiver, Justice is an amazing anomaly. She jokes around when emptying my catheter each morning and evening. She calls or text messages me during her breaks at school to make sure I am OK. If she catches me over-exerting myself in the wheelchair, she scolds me and takes over. I often feel bad at night, when I know she is very tired but I still need help being put to bed--which is a quite a process using a Hoyer lift that has to be pumped by hand, putting on my heel boots, straightening out my spine, making sure my reacher tool, oxygen and various paraphernalia is on hand. It doesn't take all that long once accustomed to it, but it is tedious all the same.

Justice has a very bright future ahead and I hope that any friends who care about me, will also come together to help my daughter down the road with opportunities, mentoring and support. She is part of me that will live and carry on in the world. I hope to stay as long as possible to be part of it.

Tuesday, October 18, 2011

The last day I ever walked

The last day I ever walked was in Spring of this year, in Joshua Tree National Park.

I suppose as far as last things go, I did this one right. I took my children and my camera out to Cottonwood, stopping at the cholla cactus gardens on the way. I showed the kids some of the places that I camped when I was in my nomadic mode and did not have a home. Originally I sought to finish some of my writing projects while living out of my car, but there was always a problem that interrupted my best intentions--that was pain. Back then I had a constant searing, burning sensation in my chest that I would do anything to keep under control. Regardless, I was always drawn to Joshua Tree for inspiration.

Walking around on that final day was not easy, because I was still dealing with nagging back pain. But I was determined to have a good day with the kids and get some great pictures, so I pushed myself. And I did get some beautiful pictures of the kids.

I took some video that day also, but I will have to dig to find the tape. In the chaos that followed in the coming weeks, all of my belongings would be ransacked - by people and even animals - which is a story in itself. One never expects to leave their home for a quick medical check and then not return for months on end. Little did I know that cancer had spread at that point, and it would be the last time I would be able to gaze at some of these views. My whole life would change drastically. Again.

Cholla Cactus Gardens
I know precisely when the first moments of paralysis began. It was at the end of that day. The kids wanted to make more stops, but I could not handle more because my hip was locking up as I climbed back up the hill from Cottonwood. That was not too unusual, but a strange sort of tingling occurred in my feet. It felt like my toes and feet were becoming frostbitten. Yet it was at least 85 degrees outside. I could walk, but it was a plodding sort of walk, as if walking on prosthetic feet that weren't mine.

Later that evening the sensation crawled higher up my left calf and I recall having to pick up my feet with my hands to sort of toss them into bed that night. The frostbite/anesthetic feeling was very uncomfortable, but not incredibly painful. I thought I must have overdone it with the hiking and assumed the numbness would go away by morning. But it didn't.

I'm sure part of me knew that I was in trouble. I wasn't ready to have it made official yet, because I know all too well what happens the moment cancer has metastasized. More than anything, I knew what it would mean for my children. They had just suffered a terrible tragedy in the last year on the other side of their family and I had to swoop in and move them to California to reboot and stabilize our lives. It was like a miracle that we actually pulled it all off, and the kids were settling into school. It was a challenging time, but I was so happy to have my kids with me again. I cooked family dinners, hung their laundry out on the line to dry, tucked my son into bed each night, helped my daughter dye her hair and expand her artistic expression. I would have never imagined that a year later my son would be putting ME to bed at night, using a Hoyer lift.

For me to develop cancer mets and become terminally ill was the worst thing I could do to the children at that juncture. Dying or becoming an invalid would mean I failed my children in their greatest time of need. Could the timing be any worse? What did my poor children ever do to deserve so much tragedy? I HAD to stay strong. I refused to be weak or show fear.

There was momentary hope when the numb feeling in my right leg seemed to recede. I assumed my left leg would improve also, and that perhaps the frostbite effect was just a temporary fluke.  The numbness did not improve though. Instead, I became fully paraplegic by my birthday on April 4th.

The view of Cottonwood below was the very last scene I viewed standing up on two legs. Little did I know that being paraplegic would be the least of problems, in comparison to the other news I was about to receive.

HOSPICE - a brand new reality show starring ME!

I can't take it anymore. I want to talk about DEATH and SUFFERING. I need to.

No sugar-coating. No censorship.

There is so much bullshit one has to go through once reaching that end-game state as it is. When the "authorities" dole out your medical death sentence, an entire process takes place which begins with a massive amount of paperwork and bureaucracy that seems never-ending. Perhaps it is a blessing of sorts, to bury the initial emotions and just focus on the business portion of a terminal cancer diagnosis. However, I am now entering the emotional landscape of this condition, which is a wicked and thorny territory.

I need an outlet. It's becoming rather awkward, to upload a status update on Facebook or Twitter about how I'm pissed off at a social worker for over-pressuring me about my burial plans, or how it feels to sign another "DO NOT RESUSCITATE" form. My morbid life updates end up mixed in with newsfeeds from others showing their latest trip to Vegas, teenagers lamenting how their life sucks, an ex-boyfriend kissing his perfect new girlfriend, friends going on an exciting archeological dig, wine tasting and jazz concert coming up, a writer's convention, a picture of what someone ate for lunch, a family member posing with champagne on a yacht in the Bahamas with a group of bikini-clad friends, a group of drunk people at an Irish pub with funny hats on....Everyone so blissfully ignorant of how lucky they are, and so blissfully ambulatory.

Funny to think, but I don't think I ever really used the word "ambulatory" before this year. Now I see the word everywhere. Anyway, the point is that I need an outlet where I can express my current reality and dig deep. This is truly the ultimate reality show. It has all the right traits - you don't want to watch it but like any train wreck, you can't look away. There is a cast of kooky characters that you will meet, and there is a competition within the theme - staying ALIVE. (We would have used the title "Survivor", but it was taken).

I will soon relay all the dirty details that led up to this high water point of disease and disability, and reveal some of the most intimate details of how I have dealt with losing use of most of my body and how I cope with the daily knowledge that I am on hospice care for a reason--I'm not expected to live for much longer. And you never know, maybe there will be some type of corny enlightenment moment like in the movies, or I'll suddenly meet my soulmate. But don't get your hopes up. Everyone, please just keep your hands and feet inside the vehicle and we will take off shortly....