A Mother's Story
© Copyright 2023 by Nicole Corey
Photo by Diana Polekhina on Unsplash
I’ve been waiting thirty-four years for someone to ask me, “What’s it like to be the mother of a mentally ill son?” But so far no one has.
My memory returns to a day in 1989 when I expectantly waited outside my ex-husband’s house in California for my son to join me. He had been living with his father since I went back east after the divorce and I was there to visit him for a few days. When he finally emerged my first reaction was that he looked very scrungy and unkempt, but I assured myself that 19-year-old boys often looked that way. We went to a favorite Mexican restaurant in the Oakland area and I was ready to have a “catch-up” conversation with him, eager to hear about his activities in more detail than the somewhat monosyllabic answers I got over the phone. As we looked at our menus and ordered, I found I was having trouble getting my son to look at me. He seemed to be looking over his shoulder at something that I didn’t see. During dinner, he could barely sit still, going outside to smoke almost constantly. I told myself to be patient and that he was just having trouble connecting with me, since we had a year’s separation between us.
After watching him pick at his food for as long as I could take it, I got the bill and went outside, where, at least, he was waiting for me. My frustration caused me to confront him about his behavior and he lashed out at me, saying that he would walk home if I wasn’t “going to be nice”.
I was completely unnerved. He started to walk away and I quickly got the car and followed him, sticking my head out the window to plead with him to get into the car. After another twenty steps, he got in and allowed me to take him home. I wished that my ex-husband had prepared me for this, but a lack of communication was only one of the reasons for our divorce. My heart told me that something was terribly wrong and the young man I took out to dinner was not the sweet son that I knew.
When I got back to my hotel, I made some calls to friends back east and was able to get the name of a local psychiatrist. Luck must have been with me the next morning since I was able to get an appointment for later that same day. I don’t know how I did it, but I convinced my son that we were going to a special doctor to discuss any issues that he was having with me and he agreed to go.
I remember nothing of the long hour waiting in the doctor’s office. I do remember being numb when he called me in after my son stepped out and told me the diagnosis was schizophrenia. I had never heard that word before.
The doctor said that he would prescribe some medication for my son which involved bi-monthly injections and gratuitously suggested that I might want to apply for SSI for him since he might not be able to work for a time. I did accomplish filling out the paperwork before I had to leave, which turned out to be a godsend in the long run. When I got back to my hotel, I called a friend who was pre-med at the school where I was finishing my bachelor’s degree. I told her my son had just gotten a diagnosis of schizophrenia and she was silent on the phone. “I’m so sorry” she managed after the interlude. She then gave me some parameters of what the disease was about, which had been only a word and now became a threat to the very existence of my youngest child.
Back in New York City, I tried to keep in touch with him but he made it very difficult. He visited once six months later and seemed somewhat normal until I found out that he was taking a lot of drugs that were not prescribed for him. We lost touch again for another six months until he showed up at my door in New York City and said that he had no intention of returning to California.
So what is it like to be the mother of a mentally ill son?
Being on a roller coaster of emotions. Dealing with an incredible need to help your child when you don’t know what will help. You start by thinking that the drugs the doctors prescribed will make him better, but the side effects that come with them cause him to stop taking the meds and you’re back to square one. He is hospitalized for the second time, unable to take care of himself or relate to the outside world. They send him home with different drugs but after a while he decides that he likes some of them but not all of them and finds a way to get more of the drugs that he likes.
He is pretty much “out of it” all the time. Back to the doctors. A new diagnosis. Addicted to the prescription tranquilizer Zanex, he is now classified as a ”DD”, dual diagnosis, schizophrenic and addicted. He sleeps a lot and when he finally wakes up he consumes food like a bear coming out of hibernation. His communication is minimal.
Years pass with no improvement. He is hospitalized again.
They wean him off the Zanex but don’t give him a drug that makes any difference in his ability to think, focus or take care of himself. He is thin and irritable when he comes home. I find out that he is smoking pot whenever he leaves the house. His eyes are constantly dilated. He sleeps a lot.
Years pass with no improvement.
He goes missing in New York City. I call everyone I know that he knows, as well as all the city agencies and beg the police to find him but, please, please, be gentle. Eighteen hours go by. My cuticles are chewed up and raw. I get a phone call from Bellevue Hospital. They found him in Central Park scooping up dog doodoo. They have him on the psych ward and will keep him there for some time.
Two months go by. I visit him daily. He finally comes home on some new med. He’s quiet and seems resigned for the moment.
Not much changes other than the new med gives him a weight gain of thirty pounds in one month. He turns thirty. I wake up one morning and find him extremely agitated, raging and intractable.
He scares me for the first time. I barricade myself in my bedroom and call the police. They come and take him to Beth Israel Hospital. He doesn’t seem to care where he’s going.
Four months pass. I visit him daily. It starts to feel like he will never be released, never be normal, never return to the real world. The doctors start him on a new medication, Clozapine. They tell me that this drug is powerful, reserved for treatment resistant cases like my son’s, but will require a blood test every two weeks because it may cause a condition called agranulocytosis, which destroys white blood cells causing infection and possible death. This scares me but I accept it because I am desperate and still want to hope that there is something in this world which will actually make him better.
He finally comes home. Ever so slightly I see improvement. He starts communicating more, he showers, he goes to the dentist, he sometimes eats dinner with me. He still sleeps a lot.
He has improved enough to start feeling confined by my mothering. He expresses a desire to have his own place but is not yet well enough to function alone. He needs to get into the system of care that the city provides since I don’t have the financial ability to house and feed him separately, but how to do that? I investigate and find out that homelessness is the criteria to get housing within the system. For five nights in a row he goes out to a shelter to be documented as homeless. He comes home in the morning and tells me it is awful and that he thinks he has lice.
We succeed in getting him into the system. He is offered a single apartment in the Bronx which he is excited to move into. When I see it, two months later, I’m appalled by the size and condition but he suffers through a year there and then they move him to Brooklyn in a better apartment with two roommates. Things seem to be going well until I get a call from the monitoring agency that he has been hospitalized again, this time in Brooklyn. I find out that he had a relapse and was in a paranoid state of believing that spiders were attacking him in his bedroom.
I visit him but not daily. While he’s in the hospital, “ they” decide that he shouldn’t return to his old apartment and when he’s released he goes to a different apartment with a new roommate. The bathroom is so small that his overweight roommate can barely fit on the toilet.
He continues to improve. His next goal is to prove to “them” that he can take care of himself and his apartment, have a bank account, pay his bills, and be able to live on his own.
He does this. They move him into a single apartment on the top floor of an old building in a questionable part of Brooklyn. (Brownsville?) He’s doing well until some thugs come down from the roof and threaten him with a gun. He is traumatized but talks about the incident and doesn’t have to be hospitalized.
The agency is apologetic for putting him in harm’s way. They move him to the Jewish Orthodox section of Brooklyn into a newly renovated apartment on the first floor. I buy him furniture, give him rugs and pictures to hang on the wall and try to make it a home for him.
He continues to improve. He has to have surgery on his shoulder from an old skiing accident and I take him to the hospital and stay with him after the surgery. I leave the next day thinking he’s fine but the anesthetic they gave him for the surgery throws him into a psychosis. He is hospitalized.
He picks up the pieces when he gets out of the hospital. He actually starts a little business selling 3D souvenir items that his brother manufactures. When I visit again I find that his kitchen is full of cockroaches but it doesn’t seem to bother him.
He starts to have issues with his monitoring agency. He says that they put him in the hospital for no reason. I believe him. When he comes out after only four days he expresses a desire to move up to my relocation in Columbia County, NY and leave his agency behind.
I find a reasonable apartment, rent a U-Haul and move him into a space that isn’t governed by any agency other than his landlord.
I get bronchitis from the stress of the move and can’t help him settle in for two weeks. He is overwhelmed and decides not to take his meds. He is hospitalized in Putnam County, an hour and a half away.
I visit him three times in two weeks. I bring him home and he picks up the pieces. Life returns to a temporary normalcy.
Then he has trouble with his landlord. The woman living below him, who works nights and sleeps during the day, complains that he’s too noisy. She’s been there longer than he has and the landlord doesn’t want to renew his lease for a third year.
I find him another apartment in nearby Hudson, rent another U-Haul and move him again.
Things are okay for about 18 months. He can walk to shopping, doctor’s appointments and meet up groups and is assigned a fabulous social worker. Then he loses his roommate, and I am forced to subsidize the missing half of the rent. We manage to get a temporary person in for two months but again are strapped with paying double rent. I investigate subsidized housing in the area but I am told that the list is long and he would be lucky to get a place in two to three years. When his lease is finally up, I have no choice but to give him the guest room in my house. I rent another U-Haul, conscript some helpers and move most of his belongings into my garage, since my guest room is already furnished.
That was four years ago.
Today, I can truthfully say that I have my son back. Our journey has been unique but not uncommon for someone with his diagnosis. He has not been hospitalized for seven years and I am finally taking that breath of relaxation to believe that only extraordinary circumstances would send him back to the hospital. In the past eight years, I found support and education through the Columbia County chapter of NAMI (National Alliance on Mental Illness) and subsequently became a teacher and president of this organization. And although my son and I were sparring roommates to begin with, we have now become a team of mother and son against the world. During the isolation of covid, he started to write about his experiences and managed to get his first book published, appropriately titled “A Survival Guide to Mental Illness”.
And now you know something about what it’s like to be the mother of a mentally ill son.
Life is good.
Corey currently lives in Nassau, NY with her son Bryan and has been
writing fiction, non-fiction and poetry her whole life. She
relocated to Columbia County when 9/11 happened after spending thirty
years in New York City. She is an avid gardener and enjoys the
challenges of keeping deer, woodchucks and bunnies out of her
vegetable garden. An inveterate reader, she supports her local
libraries and doesn’t remember a time in her life when she
wasn’t excited about reading a new book. She hopes that some
day mental illness will not be stigmatized and encourages people to
share their stories, as well as joining their local NAMI affiliate.