Ok, so it's not as depressing as the title would make you believe, but in a way, it is true. I have been confirmed to have the disease that may very well kill me.
Ok, yeah. It is depressing.
The trip to Durham was quite bittersweet. My aunt and uncle finally got to meet Georgi, and they loved her. Seeing them reminds me that having a small family is ok, because there is still a huge amount of love. Knowing now, essentially, what is to come, makes me want to spend so much more time with them. I found a note in a box of old letters my mom had been saving (filled with stuff that even my grandmother was saving) that was from my Uncle Shawn. My mom and he never seemed to be that close. I was told they weren't close while they were growing up, and, as I was growing up, I can only faintly remember any times spent with them. In fact, most are only through the few pictures we had. The note, one of the only ones I think he's ever written to anybody, was to my mom after his first child, my cousin Wesley, was born. He wrote how he wished we could all be closer so that he could see me grow up and my mom could see Wes grow up. Such simple words, but coming from my uncle who is a notorious joker and rarely serious about anything, showed such a desire to reach out and be closer to his family, or at least to have that close extended family that so many other people are able to have. Almost 20 years later, that closeness is finally being sealed. Unfortunately, neither my mom nor my uncle got to see the others kids grow up the way both had wished, but we're here now, and now is all that truly matters.
I love that they live in Durham, and I love that Duke has an ALS clinic. It means that I do not have to face this disease alone. It means that after an emotional day of being told things I didn't want to hear, Georgi and I could go back to their house, eat pizza, watch my uncle pout like a 5yo for my aunt to make something freshly baked for dessert, listen to her give in, and laugh like the previous 8 hours didn't happen.
The clinic was as good as it could have been. The neurologist bears the resemblance of the typical British rocker and is very straight forward with what he says. I don't know if it makes me have confidence in him or just feel an odd connection because is hair is all a mess - on purpose.
I don't know how this all makes me feel lately. It's very hard to say in fact. My meds have kicked in full force and bad things don't seem so bad lately, even though they truly are. Nothing has changed, only my chemical imbalance has been corrected. In reality, things are worse. I don't feel a hope to hold onto. A hope for Lyme's disease. A hope for cancer. A hope for pinched cervical nerves. I was even told to hope for HIV. Eh. In the words of Julia Roberts in Pretty Woman, I'm a safety girl.
I can't tell if it's the drugs or something else that make me ok to talk about it with other people now. I smile, I joke, and I say "It's ok!" when people express sorrow for what I'm going through. I don't think this is denial, but I think this is my way of shielding my emotions. If I take any time to really sit and think about it, I'm still terrified. I still can't believe this is real. I still have trouble believing it's really happening. I have an arm brace now to help me type and my foot has started catching when I walk, and yet I still pretend sometimes that nothing is wrong with me. I don't want people feeling sorry for me and I don't want people worrying. I want things to go back to the way they were.
The doc said I will probably progress slow, although there are no guarantees. He said 10% live over 10 years.
10 years.
I'd be 38.
If I had a child tomorrow, she'd be 10.
What?
Nevermind about watching other peoples' kids grow up, even if they are family members. I just want to see my own grow up. I want to see them in school plays and talent shows, soccer games and ballet recitals, debate team and homecoming dances. I want to be there in PTA meetings and chaperoning spring break trips. All the milestones and then some.
I hate sometimes that the one thing I want so badly may come at such a price, and I can only hope that the doc's statistics are sorely outdated.
Ok, yeah. It is depressing.
The trip to Durham was quite bittersweet. My aunt and uncle finally got to meet Georgi, and they loved her. Seeing them reminds me that having a small family is ok, because there is still a huge amount of love. Knowing now, essentially, what is to come, makes me want to spend so much more time with them. I found a note in a box of old letters my mom had been saving (filled with stuff that even my grandmother was saving) that was from my Uncle Shawn. My mom and he never seemed to be that close. I was told they weren't close while they were growing up, and, as I was growing up, I can only faintly remember any times spent with them. In fact, most are only through the few pictures we had. The note, one of the only ones I think he's ever written to anybody, was to my mom after his first child, my cousin Wesley, was born. He wrote how he wished we could all be closer so that he could see me grow up and my mom could see Wes grow up. Such simple words, but coming from my uncle who is a notorious joker and rarely serious about anything, showed such a desire to reach out and be closer to his family, or at least to have that close extended family that so many other people are able to have. Almost 20 years later, that closeness is finally being sealed. Unfortunately, neither my mom nor my uncle got to see the others kids grow up the way both had wished, but we're here now, and now is all that truly matters.
I love that they live in Durham, and I love that Duke has an ALS clinic. It means that I do not have to face this disease alone. It means that after an emotional day of being told things I didn't want to hear, Georgi and I could go back to their house, eat pizza, watch my uncle pout like a 5yo for my aunt to make something freshly baked for dessert, listen to her give in, and laugh like the previous 8 hours didn't happen.
The clinic was as good as it could have been. The neurologist bears the resemblance of the typical British rocker and is very straight forward with what he says. I don't know if it makes me have confidence in him or just feel an odd connection because is hair is all a mess - on purpose.
I don't know how this all makes me feel lately. It's very hard to say in fact. My meds have kicked in full force and bad things don't seem so bad lately, even though they truly are. Nothing has changed, only my chemical imbalance has been corrected. In reality, things are worse. I don't feel a hope to hold onto. A hope for Lyme's disease. A hope for cancer. A hope for pinched cervical nerves. I was even told to hope for HIV. Eh. In the words of Julia Roberts in Pretty Woman, I'm a safety girl.
I can't tell if it's the drugs or something else that make me ok to talk about it with other people now. I smile, I joke, and I say "It's ok!" when people express sorrow for what I'm going through. I don't think this is denial, but I think this is my way of shielding my emotions. If I take any time to really sit and think about it, I'm still terrified. I still can't believe this is real. I still have trouble believing it's really happening. I have an arm brace now to help me type and my foot has started catching when I walk, and yet I still pretend sometimes that nothing is wrong with me. I don't want people feeling sorry for me and I don't want people worrying. I want things to go back to the way they were.
The doc said I will probably progress slow, although there are no guarantees. He said 10% live over 10 years.
10 years.
I'd be 38.
If I had a child tomorrow, she'd be 10.
What?
Nevermind about watching other peoples' kids grow up, even if they are family members. I just want to see my own grow up. I want to see them in school plays and talent shows, soccer games and ballet recitals, debate team and homecoming dances. I want to be there in PTA meetings and chaperoning spring break trips. All the milestones and then some.
I hate sometimes that the one thing I want so badly may come at such a price, and I can only hope that the doc's statistics are sorely outdated.
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