I wrote myself tiny notes yesterday about what was compelling me to try to find a moment to write … now my notes don’t mean much to me. Compulsion on Christmas Day had to be ignored. Now I have time and I am back to simply feeling terrible.
“Anger is shame.” My first note to myself. She wrote that she felt shame that she couldn’t control anorexia’s restricting impulses. She felt angry, annoyed with herself–she could not stop the compulsive restriction behaviour. She couldn’t tell us about how she was feeling. She was scared, feeling ashamed, and maybe angry with herself for being stuck, and with us for being unable to decode what the ED wouldn’t let her tell us.
“Anger is manipulation.” I felt the anorexia manipulating me–that she was restricting, and being silly with it. In person: “You don’t know anything. The therapist and the dietitian give me help and instructions, I know what to do, leave me alone to do my job.” Text: “Want to go for a drive after work?” I would go pick her up outside her apartment, “Can we go up for a cup of tea?” No. Which would have been a chance to really talk I think, but which may have included a cookie or a piece of toast, social convention, maybe that was a reason it was out; or maybe because she was home all the time–so staying home was not what she wanted to do. “Can I use your bathroom before we go?” Yes. So then I would drive and point out things, the colour of the sky, the dusk, crosswalk people, airport incoming, Southland’s houses and horses, memories and meanings. She would offer insights, get on a bit of a roll about what she had read, a podcast she had heard, or a Youtube she had seen. She would say something like, Tomorrow (or Monday) I am going to follow my meal plan. She did was a participant in a study, “Next Wednesday I am going to participate in a study about autism and anorexia,” which I figured was bad, because a sufferer would want to be visibly anorexic to rate the attention. I said, Be careful you don’t lose just to fit the study? I think she was not offended, maybe even agreed mildly.
We were both angry and prickly in our way, each for our own reasons. Hunger will make one feel angry, and tension around the secret, those would be her. Puzzled will make one feel angry, that was me. I was not fully informed–subconsciously did I know I was missing information? Things didn’t add-up, didn’t make sense, so I was tough, annoyed, prickly, or irritable.
She had us think that she was just out of hospital–and she had not been in. She didn’t look like she had been in treatment for six weeks, and then two more, “no visitors.” On a drive I noticed a bit of white on her cheek, “Oh, probably from the tape from the “NG” tube.” I wanted to believe her–it didn’t look like residue from tape, it was just a bit of fluff. But she said, so my heart went up, “Why, yes, that could be true,” but I glanced at her beside me and thought, no, that’s not right, but you said the right thing to me. Did I know? Did I avoid what I knew, in case instead I could make it true by believing it? Did I want to help her somehow by playing-along, pretending to believe her?
The other thing I jotted down yesterday, before losing it–“patience is over-rated.” I was patient. I was patient as a 5 year old, waiting my turn at the trampoline park birthday, while some girl I was partnered with bounced, singing to herself, until the time for all of us was up. I felt injured but I had been patient, confident my turn would come. I was patient with Sam. He has SAD, seasonal effective disorder, “Don’t bother me (about feelings) when I am busy, don’t kick me when I am down,” (seasonally unemployed). He would blow up, “flip his lid.” Patience told me that one day he would decide to try affection, have a teasing joke and we would be best friends. We are best friends, but I mean, we could be more than friends that tolerate and support each other. My impatience came out in front of the kids when he would have a melt-down without preamble. Experience told me he would lose his temper, argue with himself, irrational, inconsolable “every 3 to 5 months,” and I said as much (which irritated him). I said something that manufactured a tantrum, and when he took the bait I admitted, “I did that on purpose.” He was mad, “What for?!” and remained annoyed but let the tension release, realizing he had been manipulated to bark at me or us, to prove my hypothesis, and for my amusement. I was patient, knowing one day he would love us in a way new to him, admiring and fun, rather than reluctantly and you-but-not-you in his irritation. About 28 years into our 30 year marriage we learned he has epilepsy (and visual migraines, though the two are unrelated). I figure the epilepsy caused the sour moods, but I didn’t know then. I barked back–uncharacteristically, not in my nature or experience, but, when called upon, to fight as loud as he can. Dramatic soap-opera style. This patience or impatience did nobody any good.
I was patient about the anorexia, the assurances, the dread (which warned of disaster). Warning her she was too frail, the hospital had not helped her, “I don’t understand,”–and she said next week she was due for another admission, “Tell me you love me, validate my feelings.” Assurances, patience. The stuff we were reading for Advent refers to not being about to see. (God, I never thought Sam and I would be involved in Bible study, of all things). The exiles, not being able to see what was right in front of their eyes–just like the anorexia, the ED playing games. The reading becomes meaningful in one’s own context. That was me–I could not “see” she was going to die? She was right in front of my eyes, physical evidence terrifying, it made me wince to say hi to her–mislead about an imaginary hospital admission, and I did not have the imagination to “see.” Able to hear but not able to understand. At the start of her “admission” she wrote emails to the dietitian, the therapist, and me, that she was in hospital, and reading Anne Frank’s “Diary of a Young Girl,” to pass the time–I found that info dark and alarming, the book is a sad record, about being in hiding. Gemma communicated in riddles. I could read what she was saying, but I couldn’t understand the coded parts. She was patiently waiting for us to ask questions, or to understand the meaning. The ED said, “You can’t tell, unless they ask.”
Anyone would get more love, respect, attention–I cannot excuse my ignorant treatment of our girl. She deserved everything. Self-absorbed, feeling sorry for myself, house for sale, passive aggressive, depressed. The dentist’s secretary wept when she learned of her death. She got Sam beautiful flowers when he went for his appointment, flowers more beautiful than anything I ever thought to offer our precious girl. Fear froze me, emotional neglect caused her to feel shame and she isolated herself. Confusion meant I felt annoyed. Certainly my immature behaviour caused her death. God forgive me.
She was irritable and angry from shame. I was irritable and angry from feeling manipulated by the ED. Our mutual patience meant she died quietly in her sleep, waiting for somebody to wake up to see and hear what she was experiencing and to help her.
“Anorexia, getting here
Anorexia is a cocoon that someone who is crying out for help wraps
It is a hell they put their bodies through when their voices are not strong
enough to say that their soul is crying and sad.
Anorexia is a dark blanket that will wrap around you.
Anorexia is also a cradle that will hold the broken body to wait for help.
The cradle will tell someone that the person needs care, care that is missing.
Anorexia is a cloud that thunders on your mind until it breaks your spirit,
and it makes a voice in your head that is telling you to run faster,
longer, harder and beat what you did from yesterday and eat less and less
and less and less and less …
And anorexia will not let go of you.
The cocoon and the dark blanket and the cradle and the thundering
cloud and horrible hell will not go away from your body and spirit
and mind and soul. It will stay until somebody comes.
Until someone comes to fill in the spaces.
The spaces that were missing, lost and wandering somewhere else.
I’m not sure.
Or maybe it will stay until someone comes to care.
The care you couldn’t give yourself.
And so you cried out.”
13 years old
BCMJ Jan Feb 2005