The Disease of a Thousand Faces by Miriam Feldman

By April 23, 2019Blog

I just got off the phone with yet another psychiatrist. I spent the good part of the weekend squirreling around the internet looking for doctors who will take patients with schizophrenia.. I have piles of buck slips all over my desk with pencil written names and phone numbers. I cannot accept that there isn’t a doctor out there who can help my son. My husband says I have to accept it and I scream NO, I’M NOT ACCEPTING IT. He shakes his head and says something softly that I can’t hear. Don’t want to hear.

I talked for a long time this morning with Sarah, Nick’s caregiver, who works for an agency that is contracted by DHS to care for the disabled. She seems to be the only person who gets it. She is appalled when I tell her they won’t give him therapy because it is not protocol for schizophrenia. She gasps when I tell her that they have cut his time with his case manager because he won’t talk to her (an obvious feature of the disease they are supposedly treating) so they deem it a waste of time.

“I talk to him all the time, no matter what,” she says. “Sometimes he smiles and once in a while he responds.”

I describe how I chatter away to him when we do errands and I believe he enjoys it. She says, “I know!” So Sarah and I will talk to him, and we will not be discouraged.

The medical professionals all take the position that as long as he isn’t harming anyone or himself then it’s a success story. A success story where the protagonist sits on a black futon in his apartment, all day every day, watching You Tube. Interesting concept of success.

The kind doctor who returned my call has been practicing for 48 years. He tells me that the simple truth is they don’t know how to treat schizophrenia. “We call it the disease with a thousand faces,” he says, and I feel that pressing heat behind my sinuses, bearing down on my eyes, my nose…crap, I start crying.

“How can it be that we give up on a human being at 33 years of age?” I ask, my voice cracking. “How can it be that there is nowhere for him?”

He clearly feels terrible, He promises to shake some trees and get back to me at the end of the week. I am grateful to encounter a person who cares, but I know he won’t find anything. No such tree exists. I’ve shaken them all myself.

Sarah and I finish our conversation by trying to figure out a protocol for Nick to manage his groceries and food intake, because things are out of control. The world is full of doctors, psychiatrists and social workers, but when it comes to my one son and his one schizophrenia it boils down to Sarah and me: two moms (one the mother of the patient, one a mother with a boundless heart) who must try to cobble together a treatment plan for one of the most serious mental illnesses. I realize what a grace it is to have Sarah in our lives and decide to focus on that.

And the snow falls outside my window hiding a thousand blemishes and softening the world into a dream.

3 Comments

  • Alex says:

    Oh Miriam, I share your pain and frustration. I too have an adult son with this terrible disease. So many hours spent searching for some doctor who may have more to offer than increasing medication because she “can’t stand hearing the same thing every session “. I don’t want pity, I want proactive treatment. How blessed you are to have Sarah. My prayers are with you

  • Deborah D says:

    Miriam I do know exactly how your feeling as my partner was being treated but only by them giving medication to try and stop the voices & alot of other feelings which is all well & and good for Dr’s & other professionals who did not know the loving,kind,& extremely intelligent person who I was beginning to see less of this side of my partner because the they were given made it impossible to stay awake long enough to have a conversation let alone anything else.So when she decided not to have the injections any longer, I didn’t try to pursuede her to carry on having something that was stopping her being able to communicate with anybody, but because she did not want the injections any longer the people who were there to help her said that they were not able to treat her, and subsequently discharged from the unit that she had been under for30 years.Now she doesn’t trust anyone including me & I am doing my best to look after her as best as I can until can get a professional to agree that what has happened is wrong and find somewhere whsomebody will give the right treatment and I will not give Good Luck I hope you find. someone to help your son

  • Marnie says:

    Miriam, reading this brought forth memories of my life six years ago, when my 22-year old son’s counselor just stopped seeing him even though he was diagnosed with schizophrenia and had been seeing her for a year and a half. Funding had stopped and there were no other qualified people available in our town. My son had been existing but unable to keep a job, and he withdrew from his friends and life in general, and finally in the ultimate final way. Apparently, things haven’t changed since then. My heart goes out to you. It is the biggest challenge just getting through a day when you can’t find help for your son.

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