Evilsciencechick

Previous

Intro

Beginning

The fight begins

fighting the good fight

Losing

We were quietly usherd to a nearby “greiving” room. It was a small room with comfy, plush furniture. A small part of my brain thought “this has been here the whole time! we were sleeping on hard couches!”

My brain was…pudding. I just couldn’t think. But we were all crying. Tissues! we need tissues! I found a box and passed it around. That became my job for the next week. I was tissue girl. It was something I could do, something to help, because otherwise, I felt so helpless.

After a few minutes, one of the nurses came in and asked if we would like to see A with all the IV’s, trach, and tubing removed. Everyone went but me. I couldn’t. That wasn’t my brother laying there anymore. It was his shell. In a few minutes, I was glad I didn’t go. My parents and E came back and my mother could hardly stand on her own. She was hysterical. “Grey! He’s so grey!!” She wasn’t calming down. Panicked, I ran to the nurses station. “Can someone get a doctor? My mother…my mother…she’s…” I didn’t even know what to say, but they knew. Their faces were red and swollen with crying, too. I think A had been there longer than any patient they had ever had. They’d all become so attached. A few minutes later, one of A’s doctors appeared with the adavan (attavan? I wish I knew how to spell this), the same drug that kept my brother calm. He sat with my mother as she swallowed the pill, holding her hands and speaking calming words.

I don’t remember how long we stayed there. Eventually, the decision was made to go home. Dad and mom in one car, E and I in the other. I would take E to his dorm room so he could collect some things, and then get back home. Some friends of my parents had showed up, the H’s They would stay with my parents, and collected names of people to call and notify, so my mother didn’t have to do it.

E took forever in his dorm, while I waited in the car outside. Almost an hour. I was so irritated. What was taking so long? I want to get home. But we had just lost our brother, he lost his twin. He could take all the time he needed. I sat and waited and watched the rain on the windsheild.

When we got home, the H’s had picked up a bucket of KFC. It was the middle of the afternoon, and none of us had eaten since the previous day. In spite of everything that had happened, I was famished. Fried chicken: comfort food in a time of much discomfort.

Over the next few days, friends and relatives poured in, bringing food and tears. Seriously, we had so much food. Lasanges and lunch meats and casseroles. I guess people figure it’s the best they can do. Our pastor came over for lunch, and we shared with him stories of A, so he could prepare the memorial service. Some of them were funny and usable: remember the time A and dad went hunting and A shot a pheasant, but it didn’t die, and they whacked it against a tree and it STILL didn’t die and dad had to wring its neck, and they told us the whole story BEFORE we ate it for dinner, and nobody ate it? Some were funny, but not so usable: Remember the time A took one of my old skirts from the attic and put it on at school as some kind of protest against the dress code? and the principal called my mother, who had no clue because A left the house in shorts, and when he told her, she asked “well…is it against the RULES for my son to wear a skirt?” and the principal just sort of stammered and said well, not really, but he is creating a disturbance and he’s wearing shorts underneath so we just made him take the skirt off, and my mom said what is it you want me to do? and he said that she should just be aware. All his friends said they’d wear a skirt the next day, but of course they never did.

A’s memorial service was full of laughter, as the stories poured forth. He was such a funny, quirky guy.

While we were still in the hospital, right after A died, our social worker warned us that some people will say the stupidest things to us. They will mean well, but it will be stupid. And we were under no obligation to be polite to these people. We were in deepest grieving, and we could tell off the stupid people without fear of retribution. Those words stuck with me. After the memorial service, as we sipped on punch and nibbled on sandwiches in the reception hall, this dumbass guy who’d been hitting on me all spring at church came up to me and asked “So, are you glad?”

“what?”

“are you glad? that it’s over for him. that he’s at rest.”

and I looked at him, and those words came back to me, and I thought NOT ONLY has this guy been inappropriately hitting on me while I’ve been going through all this for months, he has the NERVE to ask me if I’m happy about my brother’s death?

So in my most irrate and disdainful voice, I said:
“NO! I’m not GLAD!!! I want my brother BACK!”

And I walked away.

I laughed and cried, but mostly cried. My brother, who’s life was looking so good, who had turned things around for himself, who had SO MUCH to look forward to, died one week before his 19th birthday.

18 year olds are not supposed to die in bed, covered with tubes and needles. They are supposed to be reckless and stupid. They are supposed to be running around with their friends, drinking and making poor decisions. They are not supposed to die slowly and painfully, while their family watches in anguish, helpless.

Tomorrow will be the 6th year anniversary of my brother’s death. Not a day goes by that I don’t think about him. I think about how he’d react to some situation, or what he would be doing now. How nice it would have been if he’d been at SCAD and I could just drive a few hours and visit him on the weekends, or he could have visited me. Sometimes I catch a glimpse of someone walking, and he looks just like A, the short hair, big nose, ambling gait. Adam Sandler, actually, kind of looks like A.

For the next few weeks, I think we all felt hollow. For so long, all of our lives had revolved around the hospital, around A. And now, we didn’t have that anymore. I would think “I dont’ have to go back to that place anymore! I don’t have to smell that smell!” and then I would remember why and I would start to cry all over again.

Slowly but surely, we picked up our lives. Not like before, things would NEVER be like they were before. But we had to find a new way to move on. Fresh, but with a heavy weight on our hearts.

Next: long term aftermath

previous:

Intro

Beginning

The fight begins

I don’t remember much about my last semester in college. I don’t even remember what classes I took, besides biochemistry. I think I pulled away from my friends slightly. They didn’t really know how to deal with what I was going through, and I found their petty internal bickering and over dramatic dating issues annoying. My tolerance for bullshit went WAY down. One of my friends was dating a guy who was emotionally abusive, and eventually cheated on her. She would AGONIZE over this…HE LOOOOOVED her, blah blah blah. I couldn’t tolerate it, the pettiness of it. DONT’ YOU KNOW WHAT I’M GOING THROUGH? AND YOU’RE WHINING ABOUT THIS GUY????

I went home on the weekends alot, to help out my parents and to see my brother. His first round of chemo began soon after his diagnosis. He spent a lot of time napping on the couch. A had been keeping his hair in a buzz cut for years, so it wasn’t immediately apparent that he was losing his hair. But if you came up behind him and pulled on a few hairs, they would come out. I teased him about it. “pick pick pick! like a monkey!” “stop it!!!” Again, it was how we coped.

In spite of it all, our spirits were high. All tests were pointing to a good recovery. His leukemia was responding to the treatment, and by the time his first round was over, there were no detectable cancer cells in the samples. A was going to beat it. He had to beat it. Of course he would beat it.

I finished school in December and moved back home. I think I filled out some applications for jobs in labs at UPMC, but I didn’t have any immediate plans. My grad school applications were in already.

After a few weeks, A’s body recovered enough that his normal activities resumed. He and E would go hanging out with their friends, causing trouble, the usual. He tired easily, though. That Christmas, we celebrated all being together. A got me a margarita set: 4 glasses, salt, mix, even chips and salsa. I don’t remember what else I got, but I remember that margarita set. He was so proud of the gift.

Christmas night, E and A went to hang out with their friends and C, A’s girlfriend. Probably to smoke and drink, and then terrorize the staff at Denny’s for awhile. But they came home a little earlier than usual. A’s face, well, once side of it, had gone numb. Weird. He kept flicking his cheek with his fingers. “I can’t feel it!”

Hmmm…maybe a weirdo side effect of the chemo? He had another doctor’s appointment the next day, so we’d solve that mystery then. It was unsettling, though.

But the doctor’s were just as puzzled as we were. And worse of all, the numbness seemed to be spreading. Soon it was affecting the other side of his face as well, then moving to his torso. A’s speech was affected, because he couldn’t move his lips properly. More tests. Palsy? Bell’s Palsy? Every time a potential diagnosis would come down, mom and I would hit the internet and try to find as much info as we could. After the new year, A was checked into the hospital. And we finally had a diagnosis: this.

It is a disease where your immune system attacks the insulation around your nerves. It starts at one end of your body (usually the feet) and works it’s way to the other. There was a spectrum of severity, from partial to full paralysis. It was rarly fatal, most cases were due to patients not getting hooked up to a respirator in time, since the condition could affect the nerves controlling the lungs. But it isn’t permanent. Usually, after a period of time, the insulation would repair and movement and feeling would be restored. A moderately famous celebrity had this.

There was no cure, but there was some treatment where they pumped him full of gamma globulins. But his numbness kept spreading.

I remember sitting in the hospital with him in early January. He could still get around, and we joked about how you have to give up any sense of modesty and pride when you’re in a hospital. You just have to provide body fluids whenever and to whoever asked.

My graduation present from my aunt and uncle was a trip to visit them in NY, and I was leaving soon. I told him that he’d better kick this shit before I got back. He said if we went into the city to go to Chinatown and get him some comic books. I said I’d do my best. I gave him a hug and said I’d see him in a week.

That was the last day I heard my brother’s voice.

While I was in NY, going to see broadway musicals and opera at the Met, the disease kept up it’s course of destruction through my brother’s already weakened body. A few days after I left, he had to be intubated. A few days after that, they put in a trach (not sure of my spelling). A had lost the ability to breath on his own.

He couldn’t walk.

He couldn’t move his arms.

He couldn’t FEEL his body.

Even the muscles controling the pupils of his eyes were affected. It was the worst case of the disease any of the doctors there had ever seen. They searched and searched for any kind of connection between the leukemia and the disease, but found nothing. It was just two freak accidents that converged on my brother.

By the time I got back from NY, he was already in neurointensive care. He had lost all muscle ability, except two: he could still shake his head, and he could wiggle his legs. My brother
was a prisoner in his own body. And my family became a prisoner of the hospital.

Thus started our schedule. My mother would go sit with him during the day, my father would take over after work in the evenings. I was the sub, and would go in whenever either one needed a break. I also took care of communications. People were always stopping by the house, dropping off food. We survived on a steady diet of pot roast and potatoes. It was nice of them (mostly people from the church) but you’d think they would have cooridinated the menu better.

Days blended into each other. Time at the hospital was slow. Doctors going in and out: neurologist, optomistrists, dermitologists. A’s leukemia was coming back, he needed another round of chemo. Could he handle it? There was no choice, he had to. So another port was put in to feed the chemo in. He had ports all over his body, the tubing of fluids going in and out, keeping him alive. Beeps and blips on a monitor above his bed played a constant background music.

We tried many things to keep him entertained. Mom and I both read to him. We tried earphones and a cd player, but he didnt’ like the earphones. I think they shut him off further from the world. All he could do was hear: he couldn’t see or feel. Hearing the every day sounds around him reminded him he was alive. So we got a stereo and played music for him that way. My dad developed a way of communicating. A would wiggle his legs and shake his head when he needed something. It was usually one of about 5 things. Dad wrote them down on a piece of paper:

Do you need more pain medicine?

Do you need more adavan? (it was a drug that calmed him, not sure on the spelling)

Are you itchy?

Do you need a nurse?

Do you want the music on/off?

Then for more specific requests, we’d slowly read off the alphabet until he shook his head a letter, and slowly spelled out his request.

How did we survive it? I hated it. I hated every day in that hospital. I hated how it sucked up our lives. I hated the world for putting my brother through it.

Worse, I hated my brother. Like it was his fault. I hated when his head was itchy. Because his head was oily and the skin just flaked off. I wanted to yell at him GET UP!!! GET BETTER!!! STOP DOING THIS TO US!!!!

I hated myself for thinking those thoughts.

I hated the smell of the room. I don’t think I will ever forget that smell.

We were all in this hazy purgatory. Hospital eat sleep hospital eat sleep hospital eat sleep. Seems like it went on forever.

After his second round of chemo started, mom noticed a rash on A’s stomach. It was yeast. A yeast infection. On his stomach. Because the chemo was killing off his immune system. It was our first sign of things to come.

Previous

A (who’s name really isn’t a secret, I’m just taking precautions about potential familial google searches. He has the same name as…moses’s brother. I’ll be taking even more anti-google precautions as this goes on) was technically the “youngest” in the family, born 5 minutes after E via cesarean section. He was so tiny that he was in neonatal intensive care for a few days. I was 3 and a half, and (so I’ve been told) was afraid of him because he was so tiny.

Of the two, A was the more submissive twin. When they fought, he was usually the one to back down. He was a little slower than E. NOT that he was stupid, it just took him longer to process things. He liked to think things over carefully, which, when he was older, made him the philosopher of the family. A didn’t do as well in school as E. Both were diagnosed with ADD and depression, but what that really meant is that they were both smart, artistic, and rebellious.

I had a very rocky relationship with my brothers growing up. I was the good child, they constantly misbehaved and therefore, got all the attention. They were ALWAYS getting into trouble. It was very embarrassing for me, especially when I got to high school. However, of the two, A was my favorite. He was sweeter than E. E and I are similar, in that when something upsets us, we sit and stew about it for a long time. We hold grudges. Not A. His temper was explosive. He had a short fuse and got frustrated very easily. However, as soon as his anger was vented, just like that, it was over. No grudges held. A was a little more thoughtful than E. He was the first of the two to have a girlfriend, and the first to have a serious girlfriend, C. I’ll talk more about her later.

A was, in a way, kind of a renaissance man. He was an artist: he loved to draw and make up comic books, and even started making jewelry. He liked to work with his hands. E preferred different medias, computers and video, but A liked to work with his hands. I already mentioned that he was a bit of philosopher. He also was a little more…Masculine than E. He liked the outdoors, and enjoyed going hunting with my dad and great uncle.

A didn’t do very well in school. Taking tests was difficult for him, because if he didn’t’ know an answer, he would get frustrated and just freeze up. He was given special attention, more time for tests, and he managed to get through OK. High school was very trying for him. He (along with E) was always getting into trouble. He believed that the principal and vice principal had it in for him (probably true). They were always getting their chains from their wallets confiscated (it’s a weapon, don’t’ you know. Even though a PENCIL could be used as a weapon. so stupid). High school was very trying for him, and he really didn’t hold much hope out for getting into a college. A wanted to draw comic books, though. And there were only two schools on the east coast that had majors in comic book art: Joe Kubrics, in NJ, and Savannah School of Art and Design (SCAD) in Georgia. My parents took my brothers to Savannah to tour the school, and A fell in LOVE. Suddenly, he was very excited about school. He wanted to graduate so he could go to SCAD. We all held our breaths when his application went out. Would he get in? Would they count his bad grades against him?

We breathed a collective sigh of relief when he finally got the acceptance letter. He was so excited. I had never seen him so happy about school. I was in college at the time, and my relationship with my brothers had improved significantly when I was no longer living at home and dealing with them on a daily basis. PLUS, after I turned 21, I was “upped” the cool scale, because THEORETICALLY, I could buy them beer. I never did, but the potential was there.

Everyone in the family was sure that going to SCAD would be A’s salvation. There he would find direction and purpose. Where before he was always bucking the system, in college that artistic drive would finally fit in. It was a good feeling.

That year, E started college at a school in Pittsburgh in August. SCAD didn’t start until October. I started my final semester in college in August. I had started college with 18 credits due to all the geeky AP classes I took. Plus I took a loaded freshman year, reasoning (correctly) that I wanted to get as many required core classes out of the way as possible while my major classes were still relatively easy. Because of all this, I had the opportunity to graduate a semester early. I decided to take it, thinking that maybe I could work for a while to save up some money before starting grad school, or some bull shit like that. I remember regretting the decision almost immediately after signing the paperwork. What had I done? I could just take bullshit classes and hang out with my friends and drink!!!! Gah! I didn’t’ know at the time how grateful I would become that I wasn’t in school that spring. I consider that to be one of many small signs that even though we were about to go through something that no family should have to endure, God was with us.

I had spent that summer doing undergrad research that would look good on a grad school application. I had received a Pfizer Undergraduate Fellowship Award for $5000 (sweet!), but part of that award was that in the fall I had to travel with my advisor to Pfizer headquarters in Rhode Island to present a poster of my data. Yay…did I mention I had no data? Nothing I did worked that summer. Looking back, there were a thousand things I could have done differently, but I was a stupid undergrad who didn’t know any better, and my advisor was apparently lazy and didn’t do a proper job advising me. But that is a rant for another day.

Since Pfizer was footing the bill, we decided to fly out of the small airport near the college, which meant a 3 hour layover in Pittsburgh. I walked around the airmall for a while, and then decided to give my mom a call. This was the dark ages, before cell phones, remember, so I whipped out my trusty student calling card, sat down at a pay phone, and rang her up.

We chatted for a bit about my upcoming trip, school, etc. I asked how my brothers were doing. E had started school a few months ago, but A had just started the week before, and I was eager to know how he was doing.

Mom said he was enjoying it so far, that he had made a few friends in the dorm. But he had missed classes the past couple of days because he wasn’t feeling well. Probably strept throat, mom thought. He had a headache and a sore throat. Poor guy. Mom and I chatted a big longer, then it was time fore me to head to the gate. I said I’d call her when I got back from my trip.

I spent the weekend with my advisor in RI. That is a post for another day, but while my data sucked, the overall experience was pretty cool.

I returned a few days later to my dorm room (a single room, I was sick of living with a roommate) and a blinking answering machine. It was my mother. She and my dad were flying down to Savannah. A was very sick and the doctors said that they needed to be there. She would call me later when she knew more.