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PLEASE DO NOT READ THIS IF YOU PLAN ON SEEING US IN HUNTINGTON, L.I. OR IN WALLINGFORD, CT AT THE NAMI CONFERENCE AS IT MAY SPOIL YOUR EXPERIENCE THERE. [Sue M. this means --->YOU<---]
I thought you might like to see what we do during our speaking engagements, since it is most likely you will never hear us speak, especially since we have mostly been turning down requests recently, wanting time to write and simply live normal lives again. Of course, I can't reporduce our whole "routine," so these are only our speeches -- from our usual presentation in 2005 thru 2006 (spring). We are currently working up something new. In any event, both presentations are or will be longer than just what appears below. Sometimes we incorporate an audio-visual, a powerpoint presentation, sometimes readings from the book. Usually a bit of twin-stuff, fooling around, a joke with a true story ending that never fails to put the audience at ease, that sort of thing, with the whole thing followed by a Q and A session. But the speeches are the most important part and they come after all the above. I speak first followed by Lynnie, whose speech ends the entire presentation and you will see why. Those of you who have read my blog from the beginning may have seen parts of my speech before, but most of it has been reworked and redone from that earlier version.
I could be your daughter or your son, your sister or brother, your mother or father, your friend or your neighbor. I suffer from schizophrenia.
For decades, I’ve lived, along with almost three million other people with schizophrenia, in a desolate, dark, little room with a large padlock on the door. The room is stigma, the darkness is fear and the lock is ignorance.
I want to speak to you today to break down the walls of fear and suspicion, unburden you of the myths and mysteries that lead to stigma and get you open that door. I’d like to tell you some reasons why medication compliance is such a difficult issue in schizophrenia and a little about how I began to recover.
Medication. What a struggle! I was never going to take medication. Medication meant I was sick. I hated that word, I hated the label, I hated the very idea of a label. But I hated the side effects most. Never mind what medication did FOR me, I hated what it did TO me.
For starters, there was, and I have a whole list here: dullness, deadness, lack of motivation, feelings of impending doom. Then: not being able to swallow my saliva, overwhelming sedation, a sixty-to-seventy pound weight gain. Drooling or dry mouth, stiffness or shaking, an agonizing restlessness, a permanent movement disorder.
Well, given all that, what would you do? Time after time, I stopped taking first one pill then another and another.
Predictably, I became psychotic again. People with schizophrenia are faced with this all the time. Either they choose psychosis or they suffer side effects that can sometimes be as bad or worse than the illness. Side effects have to be reckoned with or compliance will be zilch, even with meds that obviously help.
The right medications can help, though, and when the side effects are tolerable, they make the difference between chronic illness and recovery. I wouldn’t be standing here today without them.
But if, as I believed in the mid-1980s, the CIA and FBI control me through a microchip implanted in my tooth, how do I know pills could resolve that? If I hear invisible voices that sound real, and think bizarre thoughts that feel true, how am I to understand medication is relevant? The solution is obviously to get rid of the radio in the wall or go to the Middle East, find 22 linguists, and translate Gray Crinkled Paper?
I asked the dentist about my tooth. For a moment, he looked taken aback, but he regained his composure and answered, “I understand you believe there’s a microchip in your tooth. I don’t think that’s possible. I think it’s a symptom of your illness. But I’ll take a look if it will make you feel better.”
The technician, on the other hand, passed over the tray of probes then backed a safe distance away. From that appointment on, she made sure I was sequestered in the last cubicle as soon as I arrived and made me stay there instead of the waiting room...
Stigma. Did you know the word “stigma” originally meant the brand from a hot iron that they would burn into a wrongdoer’s face as a mark of disgrace and shame? Did she think I wouldn’t understand?
Side effects, lack of insight, stigma -- each can lead someone to stop taking medication and compliance is usually a necessary first step towards recovery. But what about talk therapy? Doctors in the 80s and early 90s frowned on it. Therapy was for neurotics; if a person were psychotic, by definition psychotherapy would do more harm than good. Better to use Haldol or long acting Prolixin and leave their psyches alone. But people with schizophrenia are often frightened, lonely and confused. At the very least, we needed someone to talk to. Thank god, I had Lynnie. Sometimes, when I was having a difficult time, she called every night.
Once someone is stabilized, discussion can be even more profitable. The Esteemed Dr O still tells me ad infinitum that I have an illness, a brain disease. She insists that hallucinations originate in the brain and that delusions are not real just because they feel real. She always treats me not as a schizophrenic, but as a person with an illness that we happen to call schizophrenia.
This is important. We don’t call a person with heart disease a cardiac, do we? Or a person suffering from meningitis – another brain disease -- a meningitic. No illness is all there is to a person or erases the human being inside, no, not even schizophrenia.
In September 2004, voices compelled me to pour lighter fluid over my left leg and set it on fire. I had 3rd degree burns, a skin graft, the whole terrible shebang. July 2006, in again. This time the voices wanted me to burn the rest of my body.
I’d been admitted and committed to psychiatric units for a total of more than 8 years by then, not including the years of halfway houses and day hospitals. I’d been sent away, locked in, shot up and tied down more times than I could count. But “institutionalization” is as much a state of mind as a statement of fact. In the end, it came down to a simple decision, black and white.
Life. Or death? Which was it to be?
It’s too long a tale to relate just how Lynnie helped me make the choice, but you see the results before you. If staying out of the hospital meant taking 22 pills every day, then, I finally decided I was going to have to swallow those 22 pills come hell or the whole of Long Island Sound lapping at my door.
35 years after my first hospitalization I’m in the process of recovering from this lifelong illness – and I think that’s what it is, a process, with ups and downs and different for each individual. I no longer count hospitalization as a failure, but as a mere blip on my way. A lot of life passed me by in 35 years. I’m 53 years old on the outside but inside I’m no more than fifteen. Sometimes I feel a lot younger than that. I lost so much of my life...35 years. Will I ever catch up?
It’s sometimes very hard, but I’ve chosen life, and that means I go on, no matter what. Still, when I look back, I don’t know how I survived all those years. I tried many times to avoid living. I tried to become a statistic. But Lynnie’s hope and Lynnie’s faith and Lynnie’s love pierced the darkness and made a life’s worth of difference.
Life is for living. Today is all we have and all we know. Enjoy what you enjoy; when you suffer, suffer well. Remember, as my piano teacher used to say, it’s all in the wrist.
Those are not bad lessons and you can learn them from the same people you keep locked in that dank little room. We have so much to teach you. That’s what I mean you see. Don’t keep us locked away. Wondrous things can happen when the doors open and the walls come down.
In the early twentieth century an 18 year-old girl showing symptoms of a dread disease was sent far away from home. She would never see her family again. She may have died from the disease, but not until many lonely years had passed.
The affliction was Leprosy and there was no remedy. For millennia, no disease was more stigmatized, more feared. Lepers, and those merely thought to be lepers, were publicly shunned and legally exiled to colonies to protect the rest of the community from infection. This may or may not have been justified but the cruelty with which they were handled makes one certain medical quarantine wasn’t the only motive. Where stigma is involved, it never is.
During the book tour for Divided Minds, in the lobby of a public radio station, waiting for a noon interview, I quickly recognized the face of a columnist well known for his satiric angle on political issues. I nodded hello and sat down. He asked to see our book, and after he read the title, he peppered me with questions. I told him that Pam had been in and out of hospitals. He looked over at my sister who sat next to me but wasn’t talking and watched as she ran her hands nervously over the tops of her thighs.
Turning back to me, he asked about medications and did she take them and had she had shock treatments. I started to give him my usual explanation about electroconvulsive therapy and Hollywood when he interrupted, “Does the title mean you both have schizophrenia?” I told him what the book was about and this man who had been eagerly engaged in conversation, abruptly went silent. A moment or two passed. Then he said, in a quiet voice but unashamed, “My mother had schizophrenia. They put her in an institution for thirty-five years. I never knew her.”
Patients with schizophrenia and leprosy don’t fit our Norman Rockwell picture of American society; their lesions, their behaviors are odd, ugly, they disturb the superficial harmony we work to maintain. Leprosy is now curable with antibiotics, but schizophrenia defies both precise definition and cure. In the twentieth and even now in the twenty-first century we still treat patients with schizophrenia like lepers; we may not exile them to island colonies, but we relegate their illness and treatment to a lower status. We treat them as dispensable, especially when money is tight – and when i ask is that ever not the case? But I’ll paraphrase 1 Corinthian’s Ch12 verse 22 (bible scholars in the audience please pardon me) The body can’t say to one part I don’t need you, a finger is just as much part of the body as an eye, an ear as much as a knee. Just so the social body, that is, society. We can amputate parts, we can exile lepers and people with mental illnesses, but we are incomplete without them. We may not see them, but we are still handicapped without them, still wounded. Isn’t it better to keep the part and try to heal it than simply cut it off? This is what organizations like Fellowship Place, NAMI, Fountain House, Community Partnership of Southern AZ etc are all about -- helping patients recover their self- respect and reconnect with their communities.
People ask me; what’s it like to be a psychiatrist and have a twin sister with schizophrenia? Fifteen years ago a friend of the family took me to a meeting of families in the basement of a church in southwestern CT. After coffee and introductions I spoke to the group about schizophrenia and my twin sister Pam.
Pam, older by five minutes, was brilliant, creative, had a gift for writing that had been recognized as early as elementary school, while I had been slower to develop, shyer, and during our childhood had seemed more fragile. Pam had been expected to lead, and during our early years, I kept myself safely in her shadow.
Pam was supposed to have become a physician. Instead she spent decades suffering the ravages of psychosis and had been in and out of hospitals for years. Meanwhile I took her place in medical school, got married and started a career as a psychiatrist. I knew Pammy was desperately ill, I recognized all the symptoms of Sz, but I was her sister, not her doctor. What could I do? In those days, members of the family were not only discouraged from talking to the psychiatrist, we were rarely allowed any contact at all. Even though I was a psychiatrist myself and sometimes knew the current treatments better than her resident-doctors, I felt somehow…the enemy.
Confused, I turned to that meeting of families. 15 years ago - it was the first time I’d ever spoken about my sister’s schizophrenia in public. I cried. The others cried. The woman, the friend who took me to the meeting, died unexpectedly that summer. I never went back. I should have.
Instead, I waited until this book came out before I started speaking in public again. Now, talking about the memoir, about schizophrenia, about my feelings about Pam and the illness and what it has done to her and to me, what Sz has done to our family has been the most liberating experience imaginable.
It has not been easy. Pammy didn’t ask for Sz, but she’s had to deal with it for over 30 yrs and so have I. For too long, I tried to deal with Pammy’s illness alone, shielding my family from most disturbances, inconvenience, and care. After 2000, all this changed and even more so with the publication of our memoir.
Schizophrenia is no long a taboo subject in our family. We talk openly about Pammy now. I am mute no longer. Sz is a fact of my life and theirs. It may not be fun all the time, but the more you know, the easier it becomes.
Schizophrenia has the power to destroy brain tissue yes, and with it much cognitive and other functioning. But schizophrenia’s power to destroy a person, a relationship, a family, is only as great as we allow it to be. It almost destroyed our family. Almost. Why? There are myriad reasons. In the 1970’s, no one understood that Pammy was psychotic. When someone is accusatory and bizarre it is very difficult not to take it personally even if you know the person is psychotic. If you don’t, it is that much more difficult.
In the 70’s, there wasn’t much to be done for schizophrenia except a few barely tolerable antipsychotic medications and hospitalization, which Pammy will tell you did more harm than good.
Pam’s journey, my journey, our journey, is shared by every one of you, ill or well, whether the disease is schizophrenia or Alzheimer’s disease, depression or Parkinson’s. Our journeys differ only in the details. We’ve all been through the highs when we think, “This is it. This time we’ve got it beat. No more relapses. This time no more dickering with the damned medication!!!” We all recognize the gut wrenching 16 story free-fall of the 3 AM phone call, the sleepless nights, the fists into the pillows or walls, or dashboards. The missed school conferences and games, the angry calls from the coach or sitter or neighbor or spouse who had to take up the slack one more time and doesn’t understand your depression or your depressed kid or brother or wife.
And every single one of us has known discouragement, frustration, rage, and that black wall of despair, and finally each one of us can remember deep inside just how close we have come to giving up …maybe more than once…
But all glimmers of hope are hope, just as all drops of water are water. Hope, dreams, and billions in pharmacologic research have brought us out of the dark ages of blaming mothers for causing schizophrenia and the back wards for chronic mental illness. It’s only because of hope, dreams and pharmacologic research that has brought a sea-change to the treatment of neuro-psychiatric disorders, that illnesses that used to lead to a lifetime in hospitals now can be completely treated and kept in remission.
Where once there was despair there is now hope and and a door to a full normal life. Remember, until this year Pammy was in and out of hospitals more than 60 times. In her entire adult life until we started the book tour in August 2005 she had never eaten in a restaurant better than a diner, had never stayed in a hotel, had never tolerated a crowd except crowded psychiatric units, and public speaking? Well, she had given poetry readings to tiny audiences, but speak before more than 300 people as we have....
It’s only because of hope, dreams and pharmacologic research, a lifetime of treatment and a network of friends, family, visiting nurses and dedicated case-workers, therapists, and helpers of all kinds that Pammy stands here today [she stands]....but stand here she does on her own two feet. As close to well as she has ever been. A year ago I thought I might lose her. One year ago. And today? Trust me. Miracles happen.