Don't Stand So Close To Me

I think I broke my dad's heart yesterday. Or maybe it was my own heart that I broke. As I delve deeper and deeper into my new body and new identity and new persona I am trying to impress it upon those close to me. I want them to realize that I have changed. That what you see may be the same but what's inside has changed. I need company where I am. It's very lonely where I am. Realizations are washing over me like waves, rhythmic and unstoppable. Each one worse than the last. Each one convincing me more than the last that who I was in the past is not ever who I will be again. I know too much. I have seen too much. I have been in denial for too long. I have been in denial since 1998 when I was first diagnosed. I had the luxury of denial back then. I was young and strong and the disease hadn't spread so remission made it easy to be in denial.

Now not so much.

Defining life changing moments have peppered my life since this summer, some more meaningful and memorable than others. The day I went to the pharmacy and picked up my first dosage of chemotherapy was one such moment. I had just been to the doctor and he was telling me about it but something was lost in the conversation and I didn't realize he was calling it in to the pharmacy that day and my disease was at a level mandating it that day. When I went to the pharmacy to pick up my prescriptions and I had three instead of two I was confused. The pharmacist offered to explain. She took it out of the bag and started to read aloud and when she got to that word, chemotherapy, she stopped reading and looked at me pityingly and I just took the bag out of her hands and left. I didn't want her to have to go through that. I left CVS and didn't know what to do with myself. I called A and left her a rambling crazy message. That was the day of the chimichanga quest. I found a place that made them and as I was sitting at the bar in Mezcal's waiting for them to make it I kept wanting to say, "do you know what I have in this CVS bag? Chemotherapy. Make that chimichanga a good one and make it quick. My life just changed. I am not who I appear. Be nice to me or I might start crying right here right now at your bar" Awful. Awful. I was reeling, my mind was spinning so fast I didn't have thoughts. I am surprised I didn't get run over by the B61 bus on the way home. I am surprised I made it home. I could have pulled an Anne Heche and shown up rambling outside someone's door. I was that out of my mind.

The next time was when I went to the inflammatory bowel specialist who compared my colonoscopy results to a third degree burn and explained that only 15% of people who have ulcerative colitis get worse, me being one of them and then he touted 6MP - the chemotherapy for much of the visit explaining how 2/3 of people who stay on it for only six months flare immediately upon stopping. People who stay on it for a only a year have a 1/3 chance of flaring immediately and so on. Again, my mind was spinning with all of his statistics. I told him that since I had started taking it I kept getting fevers and flu-like symtoms. He said to avoid antibiotics and ride out the infections and just wash my hands more often, drink a lot of fluids and stay away from sick people. He told me I would be on it for the rest of my life. Unlike my doctor, he didn't advise getting off it when I decide to conceive. I was floored. My fate was sealed. I had gone to him as a second opinion. I trusted Dr. Lax but Dr. Lax is a gastroenterologist and this guy is an inflammatory bowel specialist so I hoped there were some nuances that Dr. Lax had missed that this guy would see. I believed he'd crack the code and it would be signed, sealed, delivered and over after my visit, relegated to the past - a near miss, a big scare, but not my life, not my future and I'd finally be able to exhale. But instead, Lax's diagnosis was confirmed and my future was now paved.

Last night I went out to dinner with my dad and my brother and then my dad and I went to the movies. I felt crappy all day but the thought of cancelling and going home to my empty apartment was too depressing. I knew I needed the company. In the cabride back to Roosevelt Island (I slept over at my parents' house), my dad said, "Briana, you said something that was very true in your email. Illness is a lonely experience. Only the person experiencing it really gets it." That completely changed the tone of the conversation we had been having thus far. I explained that that was why I sent each of my family members a copy of The Lonely Patient by Michael Stein. I need them to get it. I hope they are able to absorb Stein's words. When I read the prologue in Barnes & Noble on Valentine's Day I started crying. It was the first time in all of this that someone reached that corner of my heart that's been crying out for company. It was so validating to discover that my emotions were normal and not crazy. Anyway, our conversation progressed and we discussed me being the executrix for a family friend's will and I made a comment about pre-deceasing her. My dad vehemently disagreed that that was a possibility and I said, "Dad, I am not Jane Smith, healthy 30-year old female," and he said, "anyone could die. I could get hit by a bus tomorrow." In my quest for someone to admit to me that they are aware of the situation instead of hiding behind their packaged words of encouragement I pressed, "Dad, come on, you know my chances are higher. You can admit it or not but that won't make it less true and it won't make me fight less. You may want to lie to me or lie to yourself but it is a fact and I prefer to face it rather than live in some kind of a fantasy world." He softly said, "I chose not to accept it."

And my heart broke in half.

I didn't realize how much his words would effect me. I shouldn't have pushed. That was selfish of me. Just because I have to accept certain truths doesn't mean I should force others to accept them. Isn't one ruined life enough? It's my hell; I don't want anyone I care about to join me here. It's like how I didn't ever tell my younger siblings that Santa didn't exist and ruin it for them. What kind of jerk would do that? So what was I thinking in forcing my dad to go there in his mind? On the other hand it's so obvious what I was thinking. I was thinking about Illinois being able to leave me and the 'serious situation' we were in and how I couldn't leave the situation because it was my body that made the situation serious. And here I am again, my body has once again betrayed me and put me in peril and since it is my body I am the only person who has to deal with it; everyone else can come and go as they wish. When I am mired in it it's unbearable. I need need need someone to hold my hand and walk me back out of my head into the sun. I would take the physical pain and symptoms times a thousand rather than the emotional ramifications. That's how bad it is to be inside the new truth, the new future, the new reality, the new limitations, the new fears, the betrayal, the loss and to be here all alone.

I look great. When I feel good I can fool anyone. And I think people like to cling to that vision of me. Maybe it's time to stop convincing others that I really am sick, that I am rightfully scared, that it sucks here and I need the company. That's just mean. It's selfish and mean and I don't want my loved ones to feel an iota of what I feel. It's my body that's broken and stupid and killing its own. It's my problem. I am not in the business of breaking hearts. Let my heart be broken but I will keep on putting on my good show because it's been working so far despite how hard I've been trying to convince others' otherwise. And let their bodies remain whole and beautiful and their futures intact. I don't want anyone to understand anymore. One broken body is enough. One broken heart is enough. To everyone else now: DANGER! NO TRESSPASSING!