Authors: Beth Ditto
I wasn’t fine. I got to Portland and couldn’t stop crying. I missed Jeri something terrible. I’d left my best friend since I was fifteen behind in Olympia, and I hated to be without him. He was and is my absolute support system, and I had no money to call him. Freddie tried to be there for me, but he had his own challenges going on. He was also adjusting to a new town, a new scene. I was waking up at 5:30 and taking the bus to whatever crappy job I’d scored that season. And in the still morning before Portland woke up, before the sun cracked the sky, in the cold and lonely darkness something happened to my brain and I started wanting to die. I started thinking about how I could do it. I could throw myself out of the bus, I would think, wondering how to get a window open. Or in the Gossip van, or a friend’s car, I could just pop open the door and hurl myself onto the road.
I had moved from a place where I knew what would happen every single day to one that was more of a city and less of a one-horse town. In Olympia, the buses stopped running at 9:45
P
.
M
. In Portland, the buses ran late, and they crisscrossed the entire startlingly huge city. A city! I was living in an actual city! Go ahead and laugh at me, New Yorkers and Londoners. I had grown up on a glorified dirt road and from there moved to an insular town with a three-block main street. Portland gave me a panic attack.
While Olympia didn’t ultimately have very much going on, Portland actually had quite a big scene, or really, lots of smaller scenes that sometimes overlapped and sometimes didn’t. I didn’t get my driver’s license until I was twenty-five, so the buses became my friend as I learned the routes and zigzagged my way around town.
But then, as I was starting to get the hang of my new surroundings, something happened to my body. I became stricken with this mysterious, awful illness. I suddenly needed glasses. I couldn’t see anything and I was frighteningly skinny. So skinny that years later Freddie found a photo of me from that moment and wondered,
Who is this girl sitting on my lap—I better not show Beth, she’ll get pissed
. It was me. I was so skinny I could fit into a pair of Kathy’s pants. It was like one day I woke up and I weighed 140 pounds. This person who had weighed 200 pounds had, for no apparent reason, lost almost half her body weight. I had a funny taste in my mouth all the time, something sickly sweet and wrong.
The fucked-up thing was, I didn’t realize I was skinny. I think that growing up fat-empowered gave me another kind of body dysmorphia. I had no idea what was happening to me. I later learned that my weight loss was caused by issues with my gallbladder, and I wound up having my gallbladder removed, but at that moment it was just another mysterious symptom that made me feel like I was losing my mind.
I started cutting myself. I never knew how good cutting could feel until I felt that bad, there in Portland. Until I felt so bad and so numb that the only sensation I could really register was pain. It broke through the dark still cold morning that had leached into my heart and made everything quiet and deadened and numb.
Nighttime was awful. I would have nightmares, dreams of my mom and my uncle and my dad, absolute wretched nightmares. I would wake up crying in the night. I didn’t want to fall back asleep and face my imaginings and I didn’t want to stay awake in the rotten darkness with my mind so broken and alive.
I got skinnier and skinnier and my vision worsened, and one day I woke up and was snow-blind, like what had happened on tour, only this time it stuck around for terrifying minutes, not just brief, shocking seconds. Imagine how slow a minute creeps by when your vision has been sucked out of your eyeballs. Imagine a whole bunch of snow-blinded minutes, all piled up on one another while you go mad with fear. My vision would begin to tint purple, and then the purple would flare into blinding whiteness and I would fall to the ground. This happened once, and then again and then again and then it happened again. I would scream for whoever was near me, Nathan, Kathy, Freddie. And then my vision would come back and I would try to pretend it hadn’t happened. Until it happened again.
In the midst of my falling apart, Freddie and I started to have problems. I was so easily threatened, so easily triggered by everything. Freddie would be having sex with me and I would haul off and punch him in the face for no reason. He was the only person I had to lean on, and he became too exhausted to deal with whatever was taking over my mind and my body.
Freddie wrapped his hand around the thickest part of my arm, gone scrawny.
You are very little
, he told me.
I don’t feel little
, I said. I didn’t feel little, but my dress size had dropped to 8 and I couldn’t see. I went to an eye doctor. He said,
There is something wrong with your eyes, and you need to get it checked out
. He wanted me to go to a specialist. But I didn’t have money to go to the doctor, I didn’t even have the money to pay him. I took the glasses he prescribed and I never went back.
But it didn’t take long for the glasses to stop working. My vision was deteriorating. There was a redness in my eyes, a red ring inside the iris, circling the pupil. I let it all go for about a year, until I couldn’t get by without a stronger pair of glasses. I went back to that doctor, still skinny, growing blinder. Half my face was paralyzed; it looked as if I’d had a stroke. I couldn’t close my mouth, couldn’t drink water unless I tilted my head way back. The palsy
would switch sides, immobilizing one half of my face and then the other. The eye doctor was alarmed.
You never went to the specialist
. It wasn’t a question. Obviously I hadn’t gone.
I’d lost 30 percent of the vision in my right eye. It was so crazy. I still can’t see out of it well. In my left ear I had lost 40 percent of my hearing. And now my throat was beginning to malfunction as well. I had tried to eat a donut at work and was horrified to have it come right out my nose. The muscles in my throat had stopped working. It made it so I couldn’t swallow, and that made it so that I couldn’t talk. Without those muscles your vocal cords can’t vibrate, so my voice came out my nose like that donut—tinny, nasal, a scary joke of a voice. I remember when it had first started happening, I’d asked my co-worker if he could hear my voice. He looked at me like I was crazy.
Yeah, I can hear your voice
. But something was wrong, in my voice or in my head. Or maybe I was just losing my mind, or everything at once.
On that second visit to the eye doctor, he said to me,
If you don’t go to a specialist right now, you are going to go blind. And if you tell me right now you can’t go to the specialist, I am putting you in an ambulance and sending you there
. The eye doctor had looked inside my eyes and found huge growths there. He told me I had this crazy disease called sarcoidosis.
After the specialist was done investigating me, he plopped into his chair and faced me frankly.
If there was time, and I didn’t think you would be damaged from the experience, I would call in a fleet of medical students, because I have never seen anything like this in my life
. With sarcoidosis, a special sort of helpful cell my immune system produces gets out of hand, and the cells gang up into massive clusters called granulomas. Then a little strain of microbes, which have learned to thrive inside the granulomas meant to kill them, start multiplying. Hence the creation of yet more granulomas. On and on it goes, a whole crazy war being fought microscopically inside my body. Inside my eyes, inside my brain.
I was apparently the rarest of the rare, such a spectacular case
that the doctor fretted about his inability to show me off to the sarcoidosis scholars. Granulomas had formed on my eye, causing part of my pupil to flatten. To have it affect your brain is the most terrifying and terminal situation. The disease causes your brain to tell your organs to stop working. So far my sarcoid gray matter had told my eyes and my throat to call it quits. It had radioed my ears and told them to take a break. It’s as if a slow sensory deprivation takes over your body, your brain shutting the systems down, sense by sense. The specialist prescribed me a steroid, a sort of wonder drug that vetoed my brain’s orders and restored my body to normal, more or less. Sometimes the sides of my face go numb, and I just wait for the feeling to come back and try not to freak out. And the feeling always comes back.
My friend Lyndell is an amazing hairdresser, and she has recurrent dreams that her hands are cut off and she can never work with hair again, slicing locks into feathering cascades, blunting a bob, building a sculpture with a can of hairspray and a fistful of bobby pins. I tell her I know that fear, having lost the ability to talk. Knowing that the sarcoidosis is there beneath the steroids, that it never goes away. It becomes dormant, and you hope that it stays asleep and docile, but it can always flare up again. Bernie Mac had sarcoidosis in his lungs that went into remission until he got sick with pneumonia, and then it killed him. It is a really, really, really rare disease. And finding out that I had it was what pushed me straight into a nervous breakdown. I had no money, no nothing. I had already been flirting with suicide, and now it seemed that my body was a step ahead of my mind.
I’ve always been really prone to depression. When I was growing up, it felt like no one in my family wanted me. Well, maybe Aunt Jannie had, but she was such an abusive person, and she up and died anyway. My mom shacked up with a loser. She lied to me about who my real dad was, and I was worried she’d pull a
similar deceit on my little sister. I’d been molested since before I could remember and had followed it up with a bunch of abusive sex partners until Anthony. I was totally gay and afraid of hell and afraid of God. I fell in love with my best friend and she started dating my brother. My friends all moved away and I had to choose to either stay behind and get knocked up or be impossibly brave and follow them.
It was Freddie who told me I had to deal with all these feelings I was having, this backed-up lifetime of festering sadness and hurt and betrayal. When you’re intimate with someone the way I was with Freddie, you let the other person in so deep he sees everything, things that you can’t see. Freddie saw my hurt, my terror, he knew the source of my loneliness, he could connect the dots between the struggles I had today and what I’d survived in Arkansas. As obvious as it was, I couldn’t see it. I was too deep in it, drowning in it. He helped me get so much clarity about where my head was at and why, and he gave me the support to start handling it.
I couldn’t deal with talking to my mother. I was angry because my younger sister was hitting the same age I was when I’d been left alone in this world of abusive boys who had been so absolutely awful to me. To see her at that age, vulnerable, unprotected, was so triggering to me. And I’ve got to tell you I hate that word, “triggered.” People who use it annoy me. I hate the word, but it explains where I was at, what was happening. My sister was turning that age. The age my cousin was when she let someone know that Dean had raped her. That age. The same awful things had happened to my mom. Kids at school said she was easy and other, worse things. Maybe my mom was trying to protect me by not making a huge deal out of what had happened to me and potentially dragging me through the same sort of courtroom drama she’d experienced, but the lack of action only made me feel like shit and responsible for what I’d lived through. The fear of her repeating that with my little sister made me shake with how powerless I was to do anything. For any of us.
My mother had multiple chances to intervene, to put a stop to my sexual abuse, and she didn’t. I woke up with the pain of it every day and went to sleep with it every night. The way my mind was taking my thoughts and weaving them into blankets to smother me, it was killing me, I had to make a change. My mom wasn’t going to suddenly come to her senses and try to make up for what she had or hadn’t done. No one was going to do that. Freddie couldn’t save me. I had to save myself.
Every morning I would wake up and say,
You have to get up. You have to go to work. You have to make your stupid kava kava tea that smells like a rotting birthday cake but calms your nerves enough to get you out the door
. I have a panic attack just at the smell of that tea, which is the opposite of what it’s supposed to do for you. I drank and drank that awful tea, but what I really needed was a babysitter. Someone to stop me from cutting the huge gash into my arm. The one so deep I could see the meat of my body. The one that had me thinking, If I can do it this deep I can do it deeper, and if I do it that much deeper I can do it deeper still, and finally I will have the courage to kill myself.
Freddie said to me,
If you die then we all have to live without you
. That little sentence kept me alive. Freddie being angry kept me alive. As for my other friends, they were pretty checked out right around then. Kathy was engaged to marry this guy she didn’t want to be with but she couldn’t bring herself to tell him. When I told her I was feeling suicidal, she sent me flowers. It was her way of letting me know she loved me. Nathan was off in his own world. It was his girlfriend at the time who took me to the hospital in a cab. That’s where you go when you’re all grown up and you need a babysitter. I needed a babysitter, badly. And so I went to the hospital.
In the hospital I met crazy people. Someone screamed at me,
That bitch with the black hair, I’ll kill her!
I was locked inside with that caliber of crazy. People who had been in there for a long time, who had literally not seen the outside in months. People who acted like children, who came up to me in the cafeteria and demanded to know if I was going to finish my hamburger or could they have it.
While I was being babysat, a horrible snowstorm was happening outside. It was like all the drama of my own interior landscape became a weather front manifested in the real world. Things froze, pipes burst, cars skidded all over Portland. People couldn’t leave their houses. Power went out. But inside the hospital all ran smoothly, as it always did. The bright overhead fluorescence highlighted the worry wrinkles we’d put on our faces. Our skin was dry from all the salty tears run down it. Stress gave us pimples and our nerves compelled us to pick them. Everyone looked like shit in the hospital.