The following day Asshat's sister, Magpie, was to arrive. Magpie has the type of nasal twang for a voice that's like a diamond drill-it can cut through anything including your sanity in a matter of seconds. It's the way I imagine H.P. Lovecraft's Cthulhu to sound, that is if Cthulhu was a shrewish, invasive idiot without even the vaguest concept of tact and appropriateness. I kinda expect that even the Elder Ones have better manners than the Magpie, as to talk to her for even minutes is to make you want to run screaming for Innsmouth and all of its horror as a welcome alternative.

If her voice wasn't enough, she personifies one of the truths I realized quite early in life: the people who most want to advertise their intelligence are usually the stupidest people around. In this case, Asshat, her brother, at this point could barely be heard when he spoke if you were more than a few feet from him. Often he would yell for my mother, who was in the neighboring room, and she wouldn't hear him. My mother and I decided to leave Magpie with Asshat so 1 they would have private time together to talk 2 we could go pick up some respiratory gear.Before we left Magpie, who likes to announce every five mintues that she graduated from an ivy league college, stopped my mother to ask if she should check in on her own brother from time to time. My mother was confused, "What do you mean check in?" "Well I wanted to do some work on the computer." The computer was in the basement on the other end of the voice. Luciano Pavaroti couldn't have yelled loud enough from the living room to be heard in the basement computer room nevermind a guy who could barely talk thanks to lung cancer. In this case, Asshat, her brother, could barely be heard when he spoke if you were more than a few feet from him. Often when he would yell for my mother, who was in the neighboring room getting something for him, and she wouldn't hear him.The "work" that Magpie was referring to was the VOLUNTEER work she did helping to rescue beagles in Florida.

Now, I do not in anyway disparage people who save animals. My cat is a rescue, my mom's cats are rescue cats. HOWEVER if you have the choice between spending time with your dying brother and trying to help save animals over the internet, I'm gonna say go with your brother. I'm an only child fer chrissakes and even I understand that time with your brother is short. Not to mention that the two aren't mutually exclusive. My mother and I were coming home in a few hours. I refuse to believe she couldn't put it off for three hours. But in truth, she just didn't want to spend time with her brother despite her presence there.

However, where I would slapped this stupid bitch upside the head and said "Listen, go sit with your brother until we come back." My mother patiently explained that Asshat couldn't talk that loudly and needed help with things like walking to the bathroom and COULD NOT CALL FOR HELP so SHE HAD TO STAY IN THE ROOM. (She did not punctuate the sentence with "idiot" or "bitch" as I would have.) She grudgingly went to sit with her brother.

Before we left my mother told Magpie to be sure BE SURE to give Asshat his 3 pm pills. She told her twice and even put a note in front of a little dish filled with the appropriate pills that said "3 pm!" We gave her exactly one thing to do.

Did she do it?

No. She forgot to give him his meds which included pain medication, something he absolutely needed. I mean seriously, one thing ONE THING. Mind you my mother was the one who was giving him IV fluids, emptying spitoons filled with bloody phlegm, even draining his lungs. And this alledgedly intelligent human being couldn't remember to give him clearly labeled pills? I mean did she think the meds were OPTIONAL? Did she not get that giving a terminal lung cancer patient his medications on time is important? And if she didn't get it, why the hell not?

Later, Asshat's son, Gekko, arrived as well. We were all sitting in the living room chatting, Asshat was in the middle of saying something, when suddenly he coughed up bile. The son and the sister RAN OUT OF THE ROOM.

Let me say that again. They fled.

Being me, I thought that they had run to get paper towels or something useful. It never occurred to me that they had just run out. My mother and I cleaned Asshat up. I took the bile soaked tissues and walked into the kitchen, which is where I found his son just standing there.

Growing up disabled, it does something to you. You learn quickly that the horror of what has happened to you is not being trapped in a body that's the enemy, but how people treat you because of it. The people who should be there for you, abandon you. They make excuses not to come to the hospital. To avoid asking how you are. Or to just vanish until things are "better." To leave you to crutch home, 5 blocks in the rain, from the hospital alone. To expect you to act after a 5 day emergency hospitalization that everything is fine. The people who have benefitted from your empathy. The people who should have your back. The people who should understand. They are the ones who generally disappoint and on an epic level.

The converse rule is that the people who come through are generally those you don't expect. Some random person you barely know who sends you flowers or an encouraging email or stops and asks if you need help. Unfortunately, those people are far outnumber by those who lack basic humanity.

I threw out the tissues and washed my hands. I knew the worst part of what had just happened wasn't the lack of control over his own body. It was knowing he had become revolting to his own sister and son. To know that what had happened to him had so frightened them they had fled the room. I know what's like to see that horror in the eyes of others and that is why I acted like everything was normal. I went back into the room where he apologized profusely for what had happened. He apologized-as if he had some control.

My mother and I told him he had no reason to apologize, and of course he didn't. It wasn't like he wanted to barf up phlemg. The son finally came back into the room. The conversation started to resume a bit, but there was a problem.

Where was Magpie?

Five, ten, fifteen minutes went by and there was no sign of Magpie. Finally I went into the kitchen to get a refill of my iced tea and that's when I saw her. She was in the back garden pulling weeds and talking on the phone. She ran out of the room and didn't even care enough to check on whether her brother was OK. She just decided that weeding and chatting was more important than her brother's feelings in the same way she decided that those beagles were more important than her brother's welfare.

I have to be honest with you that incident so upset me that I was spitting mad for a week. I have no idea how a person can care so little about the welfare of a fellow human being, nevermind a sibling. As I said, I hated the man and yet I found their behavior so obherent that I literally couldn't talk about anything else for a week. It is, to me, a perfect distillation of how human beings generally lacking humanity especially when it's the most important for them to have some.

Karma, however, will pay them back as someday they will know what it's like to have their body fail and their family flee. It's what my father told me all those years ago: The one great common denominator of all humanlife is pain. If you ever wish great pain on someone, you only have to do one thing: wait. And so eventually their apathy will come back to haunt them in the form of those they will expect to support them. They will then know the horror of causing family members to flee, having family members hide from their needs with invented important tasks, and having family think your basic needs are unimportant or more importantly they don't care to protect your feelings in the least.

Personally, I would like it better if people could actually act like human beings, but having lived with disability for so long, I know I might as well wish for a hot tub filled with blue Kool-Aid and a calorie free Swiss chocolate. But will I take plain ole vengeance? You bet I will. And the truth is, if I ended up seeing them sick I probably couldn't run out on them anymore than I could run out on Asshat. Luckily, I'm sure other family members will have that covered.

Labels: apathy, cancer, death, family, lung cancer

After watching the movie, it was time to go up to bed. This was something that annoyed me. Asshat couldn't make it up stairs without help so my mother would have to help her boyfriend up, not one, but two flights of stairs all the while also lugging his air tanks all because he refused to have things set up in the bedroom. Why? Because he things to be the way they were. He still didn't accept that things were never, ever going to be the way they were again. He was trying to cling to his life as a healthy person, and while he was still alive, his life as a healthy person was already over.

I went up ahead of them to have a little bit of a snack before bed. While I was in the kitchen I head the two of them talking. I had thought they had gone up, but no. Asshat was sitting in a rocking chair by stairs (placed there by my mother for this reason), he was struggling to breathe and saying to my mother "Why is God doing this to me? Why is God doing this to me?" My mother was bent over him trying to soothe him.

Like Job, he isn't asking for his suffering to end, just for a reason. The universal question, "Why me?" Of course the answer is "It is not your place to question or understand. It is your place to accept." On some level, it's a practical answer. God isn't going to open the clouds a la Monty Python and Holy Grail and say "Well, here's the reason." So just accepting what is happening seems like the best advice. And could there even be a reason good enough?

I've struggled with the why question myself. The type of cancer I had was idiopathic* up until a few years ago. Then, thanks to the human genome project, the cause was discovered-a random malformation of a single gene. Pure chance, bad fucking luck, that was it. Now I had the answer. Did I feel anymore satisfied?

Absolutely not. So while I understand the cautionary tale of Job, I also know the advice offered is absolutely impossible to take.

I felt almost assaulted by the intimacy between them. My mother had soothed me in rocking chairs as a child. She had rocked with me as I wailed from ear infections and strep throat until I calmed down. Now she was doing it again with her boyfriend. They didn't even notice me standing there before I ran back into the kitchen to pour myself a large glass of ultra calming vodka.

My initial reaction was pure rage. I sat in the kitchen, seething. I wanted to be God's proxy and say, "Listen you chucklehead, this has nothing to do with me. YOU CHOSE TO SMOKE LIKE A CHIMNEY FOR 40 YEARS AND YOU'RE SMART ENOUGH TO KNOW BETTER so sorry your spin on the roulette wheel didn't at all work out. But it's not like divine providence forced you to smoke. This is the result of your own deliberate decisions. Not to mention, you've had a fantastic life for the last 60 years. Do you know how many people (including the 30 year old in the next room) would GLADLY suffer from lung cancer if they could only have half the life you have had? More than that tiny brain of yours could probably handle. So do me a favor. Accept your own culpability. Appreciate what you have while you still fucking have it. Now, if you don't mind you self centered prick, I now have to go listen to the prayers of some parents with infants in NICU."

Now I know this reads like David Mamet rewriting the Bible.

Part of my rage came from the fact that I got six months of health. Six months. Not sixty years. Not even one year. And my cancer wasn't brought on by my own acts. I was filled with a lot of righteous "HOW DARE HE?!"

But underneath that rage was the horror of watching my mother witness this. That she went through this every night, and she would continue to go through it until the end. The tremendous strength of her to do this, uncomplaining, unflinching.

Part of the reason it takes me so long to write these entries is I end up sobbing every time I write about this. I didn't cry when my father died. Not one tear. Not even at the funeral listening to my mother cry behind me. Where did that girl go? What is it about this?

How many times did my mother soothe me in a rocking chair while I wondered why God, who I believed in at that point, had done this to me? How many times did I think an answer to that question would be better than a cure? How many times do I hate myself for struggling up a flight of stairs? Every time. Every step. Feeling absolutely helpless-a victim of my own body. My body-the enemy. That antagonist that had to be fought and who retaliated with pain. And now I was reliving it by watching someone else go through it.

In the end, I stayed in the kitchen until the rage subsided. Afterwards I walked out the front door. It was a beautiful night outside. It was cool and clear. So many stars that it was shocking. I forgot what the night looks like in the country. The frogs, toads, crickets, grasshoppers, and other assorted critters were making a near deafening racket. I sat outside and felt sad that instead of enjoying the simple pleasure of the night, we stayed inside and watched a movie. Out here simple mindless life is going on-stars sparkling, crickets chirping-without any awareness of what was happening in the house, without any concern. The crickets and the stars had no answer except to keep going until you can no longer. Keep going.

Keep going.

* idiopathic means there is no known cause for the disorder

Labels: cancer, death, dying, god, lung cancer

After we arrived at the house, Asshat had himself ensconced in a comfy chair in the basement so he could get IV fluids. My mother hooked him up, and we sat in the basement watching the latest offering from Netflix. When someone is dying, even the most mundane of activities, watching a DVD, suddenly take on completely different significance.

We watched Much Ado About Nothing, the Kenneth Branaugh version. Asshat declared it too sentimental, as it had to be too something in his estimation. I sat there wondering if I was dying, what movies would I want to watch? Would I bother with any of my horror movies? Would I suddenly go running for the musical comedies? Would I even want to see existential movies like Eternal Sunshine of the Spotless Mind and Existenz?

And this brings up a slew of last thoughts. What would I want my last meal to be? My last book? My last vacation? My last season? My last time of day? And these are all the big things, the things we know we'll miss-real gooey hot fudge sundaes, swimming in the ocean, smelling frais du bois on the streets of Paris, having wild passionate sex (in bed, on the couch, in the backgarden, in the shower), snuggling under the covers on a cold day, hugging an old friend you meet by chance, sitting a field filled with fireflies on a quiet summer night, struggling to walk in knee deep snow, enjoying a rose scented bath filled with bubbles. The list goes on and on. Someday, I will have enjoyed all those things for the last time.

And then there are the things you don't think about. The last time you brush your teeth, take a quick shower, do the laundry, vacuum, go to the DMV, do your taxes, pay the bills, pick up the dry cleaning, change the lightbulbs, walking up the stairs...hell wipe your ass. You'll miss those too one day, you don't think so, but you will. Trust me.

A week before I went to upstate, a friendly acquaintance was watching me eat a cupcake. I offered him some, but he declined even though he really wanted some. I asked him how he had such self control, and he said "Well you're a spring chicken compared to me. When you get to my age, and you've had about nine thousand you think 'I don't need one more.'" I smiled and nodded and didn't trust a single word. How could I? One day I won't be able to have anymore cupcakes and won't I regret all the cupcakes I could have eaten and didn't? And don't even get me started on the truffle cheese, salted caramels, bacon chocolate bars, jalapeno peanut brittle, caramel apples, chubby hubby ice cream...well you get the idea. And that's just the decadent treats. What about the nights out with friends? Laughing in the park? Discovering new lovers in France? The adventures? The creature comforts? The enjoyable challenges? The hard won accomplishments? Even the horrifying farces that will turn into amusing anecdotes?

My therapist told me once that she knew some people who died of Parkinsons. "They seemed peaceful after they embraced the fact they couldn't talk anymore." How does one embrace that? I thought. How could I ever be at peace with having spoken my last words?


How could I ever have enough?


Still, I sat there watching the movie with my eyes filling with tears because Asshat had already passed so many of those milestones. He had already eaten his last meal, even though he didn't know it at the time. The cancer had knocked out his taste buds early so he was living on Ensure, soon he wouldn't even have that. A gourmande all his life spending his last few months drinking Ensure. He wasn't going to get one last decadent meal. Not even a snack. Not one little sliver of truffle. And there would be more sacrifices to come.

He was living through Hell already and he still had worse to look forward to.

I posted a question on facebook asking people what movie they wanted their last movie to be. No one responded. I suppose no one wanted to think about the reality of it.

Still, whether we want to think of it, it's coming. The last movie we shall ever watch. The last meal. The last season. The last time of day. The last thought.

The last taste of strawberries and walking in the snow.


* I started writing this entry, and the following entries, before my mother's boyfriend passed away. He died on Monday 19, 2010.

Labels: cancer, death, dying, lung cancer, movies

It started in November. Well, September really. My mother had come back from Europe with her boyfriend, Asshat, whom I hate.

I know what you're thinking. Hate is a strong word. Surely you don't HATE him. No, I do with the type of hate that actually raises my blood pressure for DAYS after I saw him. A hate that meant that I had to cut off contact with my mother for months just for my own health and my own sanity.

He had an old school Italian mentality paired with an outstanding belief that only he knew the right way to do anything.

Well, look at that, I'm already writing about him in the past tense, even though now, he's still alive. Still, his death is so imminent, the past tense seems to be more appropriate.

Once, we went to a prestigious Italian restaurant in my neighborhood. He saw zucchini blossoms on the menu, but insisted the chef was preparing them incorrectly. He gave the waiter very particular instructions for how he wanted the blossoms. When the dish arrived, he was openly and more embarrassingly vociferously disappointed. For the rest of the entire night, he would not let five minutes go without ranting about what a catastrophe the blossoms were. I found the entire night appalling and have never dared to show my face in that restaurant again.

Far more painful was his attitude toward my disability, which was "Just get over it." Having coped with massive neurological damage in my lower body, and several chronic health problems related to the damage, his callousness was upsetting. Christ, I spent most of my childhood flying to see specialists at hospitals, sitting in waiting rooms, having painful tests, waiting through winters and summers in casts and on crutches, recovering from surgeries and hospitalizations, facing an ever increasing line of doctors. And I had pushed through it. While I attended college, pursuing a BFA in Acting in one of the most reputable programs in the country, my father died, I almost bled to death, I was emergency hospitalized, had emergency surgery, had ambulatory surgery, and STILL graduated on time with honors. Furthermore, I went onto to pursue my Master's at one of the most highly ranked graduate writing programs in the country and then began my teaching career. I was an expert skier and amateur ballroom dancer. I had traveled to Europe alone. In short, I did my best not to allow the disability to interfere.

Still, it would part of that is the fear that I ever did let the disability effect me, I wouldn't be loved. The fear that the only way for people to accept me was to pretend to be something I desperately wanted to be. To be healthy. And while, I could make people believe I was healthy, it made me feel isolated and afraid. That love was tentative and came with a high price. That love meant I could never really be accepted for who I really am.

He made my position absolutely clear. I could never let down my guard. Never be truly understood. Because to do so, was to be weak, to be sick. Because sickness, disability on some level, was a choice. It was a failure of will.


Meanwhile, he thought all doctors were shysters. Of course, because if will is all that is necessary for health, then why would medicine or doctors be necessary? Strange that my mother, the ex-wife of a doctor, the daughter of a nurse, a former nurse herself would allow him to persist in these beliefs. She never saw how hurtful, how insulting and desultory his attitude was to me personally because she excused it with her excuse for everything he said "Oh, he's just that WAY." As if confronting that insidious attitude within my own family, harbored by my mother's own affection, was a minor pet peeve, like sucking his teeth. He, of course, was convinced that if he got sick, if he became disabled that's exactly what he would do. Because he was, despite his lack of experience and in the face of mine, always right.

On more than one occasion, I wished he would get sick, not seriously sick, but sick enough to actually have some empathy for the rest of us who have to cope with this kind of incapacity everyday. Sick enough to learn that illness is not a failure of will, not a show of weakness. It takes incredible strength to survive illness, not just physically, but emotionally-the abandonment of friends and family, the lack of privacy, the pain, the fear, the rage, the helplessness. To survive alone takes fortitude and faith. I wanted him to get sick enough to learn this, to appreciate how difficult a battle it really is. I wanted from him what I always want from the healthy: understanding. I understand them, but they flinch, they avoid, they deny understanding me. That's all I wanted. Back then I was naive enough to think that a bout with illness would de facto produce insight and compassion.

Illness memoirs enforce this view, particularly breast cancer memoirs. Often survivors say how the cancer helped them see their lives with clear eyes-to re-prioritize, to be thankful, to really live. I was diagnosed with cancer at 6 months old, so re-evaluating my life choices wasn't high on my list. I'll be honest. I've never been thankful that I had cancer, but I've always wondered how much of my development, my drive to help others through teaching and charity, has been spurred on by my own struggles. I accepted what these memoirs told me about the transformational powers of cancer.

I know a lot better now.


In September, my mother returned from Europe ill. At first, I didn't think it was serious. She claimed she had "travelers diarrhea." But weeks went by, she kept losing weight, and she still couldn't keep any food in her system. Finally, after a month and a half and a colonscopy ,she was diagnosed with ulcerative colitis-not a great diagnosis, but nowhere near as serious as I feared.

As soon as she recovered, he got a cough that wouldn't respond to treatment. I wasn't surprised by the cough, in fact, since he was a hard core smoker for 40 years who had only recently quit, I was shocked he hadn't suffered from a cough like that sooner. Plus with my mother's illness, I thought his illness might have been a bid to regain attention and focus. Still, my mother was concerned. Then, he got diagnosed with pneumonia. The pneumonia didn't respond to any treatment. Now, my mother told me that he was having chills nightly that were so severe "they shake the mattress like in the exorcist" but he would soak the sheets with sweat.

"I'm worried this is something bad," she said to me.

In the darker parts of my mind, I thought "Wouldn't it be ironic if months after he quit smoking, he got lung cancer?" I thought it because that kind of perfect irony only happens on "Made for Lifetime Movies" and soap operas.

Except this time, it did.

I remember calling my mother from work the minute classes got out. We knew it was cancer by now, but not the prognosis. She answered the phone and said rushed, that he had 2-5 years and then hung up. In retrospect, those years would have been a gift. It seemed horrifying then, but now, how much could have happened in those years? We shall never know because he won't even make it to the end of the first year.

That's one of the first horrors of illness. It's like life on a swiftly tilting planet. Everything changes radically day to day-one day you're hoping to die, the next day you're praying to live. My mother says it again and again on the phone now to the many people who call to inquire, "I don't know. I just don't know. Things change so quickly. I mean, I can't tell you anything because in the next ten minutes everything could change."

Everything could change except one thing: he's going to die very soon.

Labels: cancer, death, illness, lung cancer

OK here's the story behind this post:

Last night I decided to go out and enjoy a cocktail. I mean it's saturday night and why the hell not? So I am being chatted up by, well, let's be honest an idiot. He was about 6 foot 4 and kicked off our conversation with several short jokes. Brilliant tactic, if what you want to end up with your body parts scattered across NJ in unmarked baggies. To try and get my phone number? Not so much. He was also cock blocking me from the pack of hot cute guys who were drunkenly roving around the bar like puppies. (There was a big college grad group there.)

So, we end up in a conversation about what kind if insanity we have witnessed in bars. And I tell him the story where I saw a guy and girl fighting-and the guy came out with "YOU BROKE UP WITH ME WHEN I HAD CANCER YOU BITCH!"

And his response? "Well, I mean if you have cancer you are going to die. It's a death sentence, so why would you want to put someone through that?"

Um, what?

And see this is why 1. I drink and 2. I should just stop talking to people.

Incidentally this isn't the first time I've heard this. Some of my students at NYU have echoed the exact same sentiment.

So let me make this CRYSTAL CLEAR. Not all cancers are fatal. When initially diagnosed there are a lot of factors to consider including the type of cancer and how early/late it is detected. Furthermore, even with the most dire cases, you never know. For example, I know a guy who was not only diagnosed with terminal cancer, but given at best 6 months to live. That was 6 YEARS ago, and he is still hitting on chicks. I was diagnosed with an aggressive often fatal form of cancer, and, well, I'm still here. (No, I am not blogging from the Great Beyond.) Lucy Grealy, who wrote Autobiography of a Face, was diagnosed with a cancer with a 1% chance of survival. Yet live she did.

So here is it kids- cancer IS NOT always fatal. And even with an outstandingly poor prognosis, some people manage to defy expectation. Now do people still die of cancer? YES, but that doesn't mean all of us do.

This comment from an adult should make you wonder what a child with cancer might be asked by his or her peers. Their classmates are likely to be even less informed, and the parents of their classmates may be filled with misinformation, or even worse, prejudice. While it may seem strange to hate a child who is sick, hate is often caused by fear. Parents filled with a zealous desire to protect their children from unfortunate truths or the disease itself may cause an already sick child even more pain by unconsciously heightening the fear by failing to discuss the illness or some issues surrounding it. This fear driven hate can result in insults, ostracism, and even death threats, like this case of a child with leukemia receiving multiple death threats on her blog. If the child is in a school system like the one I grew up in, he/she may find the school authorities less than willing to help ameliorate the situation by intervening when bullying occurs or by relaxing certain requirements that may be difficult to fulfill (in my case by refusing to change or eliminate the gym requirement while I was in a wheelchair). And this isn't even taking into consideration the toll the actual cancer and the treatment may take on the child itself.

Now this is not to say that childhood cancer will inherently result in a nightmarish social situation. There are, again, multiple factors at play. How are the parents coping with it? How old is the child? What is the attitude of the current school administrators? Are just a few factors that will figure in to how the community reacts. Sometimes a community will really rally and be key in the child's treatment, other times it will be a hindrance.


Whatever the case, cancer is painful and difficult without having to deal with comments from misinformed schmoes. So schmoes take note.

Labels: cancer