A Cure for Schizophrenia: Genetics Versus Angels

Currently there is no cure for schizophrenia. Currently, there are not even actually anti-schizophrenic drugs. Most schizophrenics are treated with anti-psychotic drugs. Those drugs are used, often in combination with anti-depressants, anti-anxiety drugs, and drugs for bi-polar conditions. These ‘cocktails’ of medications can lessen symptoms, but they carry a host of side effects, and they are far from a cure for schizophrenia.

Since the 1970’s, doctors and scientists have searched for a genetic link for schizophrenia, and even earlier, they were seeking hereditary factors for the disease. Science today seeks out root causes of illness in order to treat and cure that illness at its roots. ‘The New Yorker’ published this article which shows that dedicated scientists are growing ever closer to establishing a genetic link for schizophrenia.

But I am not jumping for joy.

tumblr_lzcsv8iBPY1r5q04zo1_500 The cure for schizophrenia might be worse than the disease.

The question that burns in my mind is ‘how much of my Self am I willing to trade to be cured of schizophrenia?’ The answer, it turns out is that I am completely unwilling to trade any of myself, the good, the bad, or the ugly in order to seek a cure.

Schizophrenia is not only a condition I ‘suffer’ with, it is a huge part of who I am. There are dangerous lows which I must traverse with great care. And there are crackling highs where my priestess-self emerges incandescent from the flames of madness. In the lows dwell my voices, my hallucinations, my angels. From those lows come my poetry my word-weaving…from those lows, I can tear my heart open and hand you the verbal viscera of my soul. And science offers me…a cure?

I know that our society does not value the lives of the mentally ill very highly. It is a struggle to jump through all the hoops to simply remain in treatment. Sometimes I am not in any mental shape to vault through those hoops alone. I’ve said it before, and I’m sure I’ll say it again: if it were not for the love and dedication of my housemate, I don’t know where I’d be right now, but it certainly would not be an improvement on where I am…but anyway society does not value the lives of the mentally ill. We must struggle to get the care we need, often if we are able to get care the hospitals and outpatient services are so understaffed we get only the most brusque and cursory care. And that is hard, so hard to deal with when we are suicidal, delusional, vulnerable and frightened. A percentage of us will not make it. And that is hard to live with.

Black and white painting of a figure running through clouds of nightmare. The cure for schizophrenia might not be an answer.
Panic! By Sri Lankan artist Sujith Rathnayake

But when you offer us a cure that is based on genetics, a cure that is based on preventing the onset of the disease that might be perpetrated on children who have shown no symptoms of schizophrenia you start scaring me, Society. I know you hold my life and the life of others like me to be of little value, but you might be surprised that I do value my life greatly. I value my life enough to go to endless appointments, to check myself in when I know I’m not safe, to call this number if I can do nothing else to save myself. It may surprise you, Society, to learn that suicidal people value their lives enough to use these resources, but we do, we do.

So would I trade my personality for a cure for schizophrenia? No way. My living Gods created me to be as I am. And I believe that to the very fiber of my being. I believe that my schizophrenia, in some small way, serves my God’s higher purpose. I work with my treatment team to manage my symptoms, but even there, the treatment is not designed to turn me into a mindless Thorazine Zombie, I remain somewhat symptomatic, but much more functional. And my personality, the rhythms of my illness remain intact, albeit somewhat blunted. And, yes, I live in the world of side effects. My mouth is perpetually dry, I have tooth loss and gum disease related to years of dry mouth, my intestines have a will of their own, I am dizzy, drowsy, and faint by turns…and the list goes on and on. But I have my Self for good company on this journey through life. I have knowledge of my Gods. I have still my voices and my angels, and much less of the dangerous voices and much less of the dangerous hallucinations.

In J. R. R. Tolkien’s excellent book “The Fellowship of the Ring” Frodo offers the One Ring to Galadriel. Here is what happened:

“And now at last it comes. You will give me the Ring freely! In place of the Dark Lord you will set up a Queen. And I shall not be dark, but beautiful and terrible as the Morning and the Night! Fair as the Sea and the Sun and the Snow upon the Mountain! Dreadful as the Storm and the Lightning! Stronger than the foundations of the earth. All shall love me and despair!”

She lifted up her hand and from the ring that she wore there issued a great light that illuminated her alone and left all else dark. She stood before Frodo seeming now tall beyond measurement, and beautiful beyond enduring, terrible and worshipful. Then she let her hand fall, and the light faded, and suddenly she laughed again, and lo! she was shrunken: a slender elf-woman, clad in simple white, whose gentle voice was soft and sad.

“I pass the test”, she said. “I will diminish, and go into the West and remain Galadriel.”

And that is how I feel about a cure for my schizophrenia. It has the appeal, the power of the One Ring. I think of all I could do even yet…I think of how I would be, the dragons I might slay. But then I consider the cost, the loss of my Gods, my angels…all of my spiritual self might be traded for that elusive cure. I pass the test. I will diminish and go into the West. I will remain Pam.

 

A Beautiful Ugliness: Musings on Being Ugly

My friend and teacher has been sharing some of her daily writing with me this week. She is writing about beauty, and her writing is captivating. All the beauty makes my head spin. I love beauty: beautiful music, beautiful art, beautiful architecture, you name it, if it is beautiful I probably love it. My entire being vibrates when I see beauty.

I think my love of beauty is because I am a homely creature. I was an actual ugly child, a really ugly adolescent, and as an adult, I’m still pretty ugly. I have pictures to defend these statements, trust me. That is not negative self-talk, or me running myself down. In a culture obsessed with beautiful women, I’m a proudly ugly one.

Photo of the Author
Photo by: B. Van Meter

It has been a long hard journey to embrace the fact that I’m never going to be pretty. But I have fought and learned how to be my own sort of ugly. It was not easy to get here. When you are in mental health care, you can find a support group for ANYTHING! Anything except being ugly. I guess it’s good that I’m no fan of support groups, because there is not one for me.

There are also not a lot of therapists who will let you alone about being ugly. I find this weird and distressing. I do not, I emphatically do not want a therapist who is gonna blow sunshine up my ass. Years ago if a woman said she was fat, some Little Mary Sunshine would immediately contradict her to tell her she had ‘big bones.’ No she didn’t. She was fat. And finally people are allowed to self identify as fat. Finally. So why can’t I self identify as ugly?

There is no good reason that I can not say I’m ugly. The fact of being ugly does not actually hurt my self-esteem. I have a few good points and I cherish them. Often I am at odds with my body. I have always felt like I was trapped in it. Truly, I want to live as a being of pure spirit-I would fly straight to my Egguns (beloved dead) and dance with them forever. My lack of love for my body is not based on anything as happenstance as its appearance.

I do think that there are a lot of circumstances where ugly people face some discrimination. That being said, I don’t think discrimination against the ugly is an insurmountable obstacle. If my looks don’t win you over, you are not alone, but I can win over almost anyone with my humor and intelligence. So I don’t worry too much about my looks putting me at a disadvantage.

The obvious exception to looks not being insurmountable is dating. As a heterosexual female, men expect me to display some beauty I do not possess. I am clever with my make-up brushes and my clothes, but I don’t get asked out very often. It would be very lovely to be dating someone, but I come equipped with the ‘baggage triple threat:’ I’m crazy, I’m ugly, and I’m weird. So thundering herds of eligible bachelors fail to beat down my door with predictable regularity.

But what does all this whinging about ugliness have to do with my struggles with schizophrenia?

A lot more than it should, sportsfans. A lot more.

There is no psychiatric harm in identifying oneself as ugly-unless you aren’t. (but that is someone else’s struggle, not mine) I should be able to discuss my ugliness with my treatment team, and have the fact be respected. But if I try it, I’ll end up in some self-esteem support group telling lies about new hairstyles just to escape. That is not fair.

There really is not anything wrong with my self esteem that I’m going to discuss on the internet, and what is wrong with my self esteem is wholly unrelated to being ugly.

We are all made up of layers and layers of facets like fine cut gems. Some facets are right on the surface, easy to see, possible to touch. But the facets that flash the brightest lie deep inside the gem. Some of those deep surfaces are bright and some are dark, but they all lie deep inside where surface contact will not disturb them.

The surface of my gem was poorly cut, the angles line up wrong to be harmonious to the eye. That is as it is. In my deeper layers, the lines are often jagged where they should be smooth. The lack of pleasing aspect on the surface is the ugliness the Gods gave me as a gift. The jagged lines that are deeper are the schizophrenia warping my light and darkness subtly so that I see a very different world than most. The same gem, two very different things.

And, yes. Yes. I did say that I consider my ugliness to be a gift from the Gods. And that is true. My surface is displeasing to the eye. I can rest secure in knowing that if someone loves me, they don’t love me for what is on the surface. I know that the very few people who love me love me on a very deep level, and I know I can trust that love to be load-bearing, because it has not reached my heart from a shallow place.

I will listen to anyone and everyone about balancing the schizophrenia, and I will try almost anything-from psych meds to psychotropics, I’ll listen and work to get better. That is a promise.

Just let me be ugly, I’m happier this way. That is a promise, too.