6-29-13 10:15pm
I feel sad. I just went walking. And praying.
(long pause)
My heart is heavy.
Janet is dead.
Libby is gone.
Joe didn’t show.
The sisters are fucking.
The ocean is cold.
My eyes are dry.
I might have cancer.
I’m alone…
Otherwise things are okay.
I want to go home.
Hear “All I Can Do (Thank You)”
The picnic was fun today.
Not sure if I’ll make it through the fair tomorrow.
© Michelle Routhieaux 2013
1/11/11 2:10am
I just got an email that says, “We have all been touched by the tragic event in Arizona.” (sigh… twice) I am so angry to keep hearing about this thing. I’ve been trying to lower my stress level. I get stressed very easily. Confused very easily. I had just succeeded in lowering my blood pressure to a non-explosive level and was calmly sitting in my aunt’s kitchen when she handed me the paper with the headline “Congresswoman Shot in the Head.” Really? I immediately could not breathe and my heart was pounding. Not because I care about this woman. It was an involuntary response. I skipped that article but read a tiny one about Obama and the whole Wikileaks thing. And I was so upset. Why? It’s all out of my control.
I’m not touched by the event in Arizona. I really don’t give a shit. The dj on the radio was freaking out about it, comparing it to the Kennedy assasination and 9/11. What? Do you not have anything better to worry about? Maybe something concerning your own life or family? Sure, I could be a news junky and devote my life to being distressed about every horrible thing in the world. But I prefer to spend my energy on doing things I enjoy and caring for people I love. Is that really such a bad thing?
I don’t watch the news. I don’t read the paper. If it’s really that important someone will tell me. I take a sweater and an umbrella if it’s cloudy. Everything else will settle on its own. Why can’t people understand that? Do not assume that I am touched.
© Michelle Routhieaux 2011
12-21-10 3:01am
People don’t get it. It just takes one. One tiny thing to change my mood. A look, a thought, a smell, a word, a song. Just one.
I work really hard to maintain my sanity, to balance all the people and memories and places, to refute the distortions, to pick out what’s real from what’s not. It’s like walking backwards on a tight rope 100 feet in the sky blindfolded during Santa Annas in the desert over a pit of hungry tigers and fire. Most days I do okay. But it just takes one thing.
Today was very stressful. I made it through my group and my meeting, enjoyed dinner with a friend, worked on the Thursday Poets Rally. And I had found a bit of peace. The sound of the rain. The feel of my breath. And there it appears – a Facebook message that reads, “Thanx for nothing!” Really? Do you have to be such a bitch? I can’t control the fact that you have no tact but I also can’t control how you make me feel. I can attempt to use logic to change that feeling, but I can’t change the seething anger in my soul. You take perverse delight in waking the colicky child I had finally calmed for the night. Just because you can! And for what reason? (Don’t reach) It’s all about you.
People don’t think. Most people I interact with don’t take the time to wonder how what they say will affect the next person. They don’t care if I’m teetering on the edge. Not their problem. I might be able to handle just one. But they’re everywhere.
I want to move away, get a new phone number, change my email and my FB, and my blog. I can’t take it anymore. People are making me crazy. I am too tired to put up with their shit. It’s too much.
© Michelle Routhieaux 2010
10-13-10 11:15pm
I haven’t written in my journal in 10 days. I knew it’d been awhile. I’m so tired.
I went to see my psychiatrist today. He didn’t say much. There isn’t much to say. I am so stressed, so overwhelmed. If my manageable stress level is a 10, I’m at a 25. I just kept thinking today, “I can’t do this.” I can and I am but I don’t want to.
I don’t remember the last time we talked but I went to San Francisco to visit a guy I met in a bar two weeks earlier. Crazy? Yes. Impulsive? Yes. Much needed break from my life that I don’t regret one bit? Yes. I need more times in my life like my weekend with Matthew. I wanted to blog all about it but my mind’s all a jumble. It was a mostly stress-free time away from this chaos. I am grateful.
I don’t remember much of this week. I’m having a lot of memory problems. But between Friday and Sunday I volunteered 34 hours at events and slept 31. My body was and is very angry. Two day psych conference, awards luncheon, gospel event and Little Italy Festa.
At the psych conference I took a nap by the pool. Just couldn’t stay awake. I really wish I was psychotic. I need to get away. The week before SF I was shopping every day. Rapid-cycling hypomania. Serious retail therapy. It’s all on cards but for some reason I don’t have enough money this month. And I don’t know why. I just know it’s one of my top triggers. I have to get away.
Just as I was leaving for group on Monday my neurologist called me and did just what I asked him NOT to do. He gave me the results of the box test I’ve been waiting for – autosomal dominant ataxia panel. He couldn’t have said more in person but I would have preferred it.
He said the results were not positive or negative. What? Do I have SCA 1-17? No. Do I have DRPLA? No. Do I have something else? Yes. What? (big sigh) A 9 base pair deletion, a “mutation of unknown clinical significance.” What? (deep breath) He was confused by the report and will mail it to me. In plain English: I was right. I have a genetic disorder in the same movement disorders realm. HOWEVER, the disorder I have is special. It is uniquely mine (and probably my dad’s.) It has yet to be named or identified. I have never been more angry not to have an identifiable deadly disorder. (My fingers are tingling.)
I wanted to talk about it in group but there wasn’t time. M- said we’ll just start a foundation and have a telethon. Not helpful. My bff said at least now I have proof it’s not just in my head. And while that’s true, it’s little consolation. I don’t need proof that what I’m experiencing is real. I’m living it!
When I thought I had DRPLA I was pissed that the specialists are in Japan. But there ARE specialists. There are people who get it. Now it’s just me. Really. And my mom’s denial is in full swing. She’s trying to convince me that maybe those genes just code for what I’ve already been diagnosed with. (sigh) I’ve never felt more alone.
When he told me I wanted to scream or cry but couldn’t. I still do. It took Xanax, 2 scoops of ice cream, group and a steak just to get through the night. I feel like the innermost layer of my skin has decided to secede from the union and is attempting to escape. It’s like my body is exploding. I can’t breathe or I’m barely breathing. I can’t get away from myself and this plus the stress of group and choir and the street team and money problems is killing me.
(crying)
I just need to go somewhere quiet and scream and cry and think. And walk. I don’t understand. I am so sad, and so scared. I thought maybe this time I’d get an answer – one that would help me out… I wish my dad was here.
—
I tried to get a pedicure this week but my anxiety was too high. I just want to get away. Mom asked why I’m crying. “Because my life sucks and I can’t fix it.” (“Unanswered Prayers” by Garth Brooks) My whole life doesn’t suck. But right now does. I don’t need problem-solving or grand ideas or positive spins. I just need to feel this. It’s big. And it’s real. Then I need to find a genetics dept that will take me on as a case study.
There’s no one to go to to ask if they’re having this too, how they coped, what happens next. No group. No doctor who understands. I told my mom, “I bet ya didn’t know you were sitting on such a mine of research data.” (deep breath… my fingers are still tingling)
I need some money to fall from the sky so I can work on some projects for me to distract. This is too much.
-M
© Michelle Routhieaux 2010
Writing Towards Happy 
