As a mental health blogger, sometimes you run across people with a story you simply must tell. Such is the case with Will Jiang of Mental Health Books.
Will is a long-time sufferer of schizophrenia. His story is one everybody interested in mental health should read.
Fortunately, Will accepted my invitation to ask him some bold questions about his life. I jumped at the chance.
What follows are my questions and Will Jiang’s answers. Prepare to be moved by his amazing courage, perseverance, compassion, and intelligence.
What it is like to have schizophrenia? (This seems to be the most popular question on Quora)
Having one’s first psychotic break from reality definitely is a shocker. The good news is that most survive their first psychotic break and with early and consistent treatment, they get much better. Without early and consistent treatment, if one has schizophrenia, one will see, “How deep the rabbit hole goes.”
Schizophrenia is preferable to a death sentence because it is a very painful state of mind, yet its depths are not necessarily permanent. People can recover from schizophrenia with treatment, not so death. However, I have sometimes wondered if people who commit crimes against humanity could be punished with my disorder for the remainder of their lives. It is a hard brain disorder to live with. But, all that said, with breath, there is hope.
My particular diagnosis is paranoid schizophrenia. When I am in a paranoid state. I see conspiracies everywhere and everybody is in on the conspiracy but me. It is scary.
How did you discover you had schizophrenia?
I was a top applied mathematics student at State University of New York at Stony Brook, I was in line at the financial aid office. After being told I did not qualify for financial aid, I slumped to the ground, so agitated due to my grief and shock and consciousness of my poverty, that my mind snapped and, in that moment, just days before Labor Day 1992, I spiralled down into the abyss of madness and paranoia which has not totally left my mind to this day, twenty-five years later. However, medication helps me cope.
How did your loved ones react when they found out you were mentally ill?
Severe mental illness will test any family’s resilience. Hours and days after finding out about my mental illness, Mom took it hardest. She ultimately became my most supportive family member, saving my life multiple times over the years. We still are at odds frequently, but we ultimately have a loving relationship.
My brothers were strongly supportive when they found out about my mental illness. To this day, I trust my brothers with my life. Dad was a mostly a hands-off kind of parent before the schizophrenia; he did not change after my diagnosis.
However, it was Dad’s discipline that helped me eventually get through graduate school with a Masters in Library Science. Love does not have to be gentle to be love.
I thank God for my family. Of course, every family has its flaws and weaknesses and things it can do better. But, given the severity of my problems, they could have foisted me off onto the system and not looked back, and I would be much more lost and alone in the world today. I am happy the initial shock and realization about my mental illness were quickly replaced by my family’s support. Life would be much more empty without the love of my family.
What has been your most difficult challenge with schizophrenia?
The most difficult challenge with my schizophrenia is not one but legion. First off, the medicine I take to stay in the land of the sane causes horrible side effects such as severe fatigue and weight gain. In my forties, I see why many people with schizophrenia die twenty-five years early.
I was a strong, athletic youth. Now, I’m forty-four with diabetes and other physical issues, in large part due to the strong mind-numbing medication. However, I have something that, to me, is priceless – my mental health. A doctor once said to me, “You can’t have something for nothing.” I fight for every ounce of mental and physical health with natural techniques I have researched and written about as a Columbia University Library Chief.
I have written books to help educate myself and others about mental and physical health such as Guide to Natural Mental Health and Natural Weight Loss and Diabetes Control. I am very proud of being an influence for good in the world, in my little way.
Thank goodness there will probably be a new class of antipsychotics out in 2017, the first of which, if approved by the FDA, is called Lumateperone. I think this drug will help some as a stand-alone treatment, but I think it could be used really, really well in combination with other existing treatments. They are saying it is about as effective as 4mg of Risperdal. For me, this is exciting because the side effects of this drug are supposedly comparable to a sugar pill!
What’s the most valuable lesson you have learned from having schizophrenia?
I have learned that everybody is special. Everybody has a gift to bring to the table. Nobody has all the answers: not me, not you, not mom, not dad, not the doctors, not the researchers. All you can do is your best. The disease has humbled me and given me a respect and reverence for life and health. You can’t buy health. It can take a million years for the earth to create a diamond, minutes of flame to destroy. Life is a fragile, elegant, wondrous gift. I could go on, but then somebody might accuse me of waxing poetic!
In terms of schizophrenia, I have learned that without schizophrenia, humankind would not be as intelligent and creative as it is today. How so? Much of intelligence and creativity is related to the DISC-1 gene (disrupted in schizophrenia) which is one of the major genes that is part of the cause of schizophrenia. So, in short, without the scourge of schizophrenia, we would probably be as intelligent as your average chimp. Not bad, but not human.
What have you accepted about yourself as someone who was diagnosed with schizophrenia?
As somebody with schizophrenia, I have accepted that I am not perfect, my family is not perfect, my girlfriend is not perfect, nothing in this world is perfect. This is a hard lesson for an idealist. Also, I have learned – a more concrete lesson – that when I need help, to ask for it. There is no shame in effectively and intelligently getting the help one needs.
Say I’m symptomatic. Ok. If I do not check myself into a hospital for acute care and maybe some medication management, what happens if I stoically and strongly refuse help, because I am such a big man? Probably jail or worse. Death is a real option which I would prefer to defer as long as possible. Jail also is a place I do not wish to go.
Jails have become the de facto long-term mental health care centers in the United States. This is not optimal, economic, or right. There are people whom I respect immensely who are fighting this abuse of the mentally ill by the law.
One is Judge Lerner-Wren, the first mental health judge in the United States in the state of Florida. She is a Twitter friend of mine, and she can be for you too. @JudgeWren . She has an amazing news feed, highly recommended.Beyond the abuse of prison, keeping people with mental health issues in jail is not sound
Beyond the abuse of prison, keeping people with mental health issues in jail is not sound economics. Putting somebody in prison is very expensive in comparison to effective mental health care. When one knows that the cost of a psychiatric hospital admission can easily be over $2,000 per day, you really have to wonder how expensive jail is.
So, why do I check myself in when I know I need help? I have some wisdom and knowledge about the matter and I owe it to myself, my family, my friends, and society to get the help I need and deserve.
What is still hard for you to accept about yourself?
I was one of the most popular kids at Stuyvesant High School in New York City. At the time, it was the number one public high school in NYC. I was popular because I was good to a lot of people. I had a good heart. I used to be able to read 500 pages per day, run half a mile in under two minutes, and do 1,000 pushups in about two hours. I miss that guy. I miss my abilities.
However, despite some bitterness due to loss of raw ability, I have never lost my loving, kind core. This is a blessing. Did I mention that I’m one of the most humble guys you’ll ever meet? Not really. I feel I have of which to be proud because I’ve done a lot despite huge challenges. As a girlfriend once told me, “Will, you have done a lot with a little.” I am just glad to be breathing and happy and relatively healthy and still contributing.
Why did you write A Schizophrenic Will?
Thank you for asking about my first person autobiography. I wrote my bio A Schizophrenic Will: A Story of Madness, A Story of Hope to give others walking in my same path, some hope. It is ultimately a (hopefully) inspiring story of what might be accomplished despite a devastating and dangerous disease.
Another person I should mention when mentioning A Schizophrenic Will is Dr. Jeffrey A. Lieberman (@DrJlieberman) the former American Psychiatric Association President and my former boss at Columbia Psychiatry. He is to this day a constant source of inspiration and support for my writing.
In my book, I quote his NARSAD speech about the fact that if somebody who has schizophrenia does not take their medicine after a first break, for whatever reason, they will probably relapse and they will probably get worse, probably much worse. This speech contains the knowledge that could have kept me much safer as a youth.
After my first break, I did go unmedicated for three days with the blessing of my psychiatrist. I was lucky I survived the subsequent second psychotic break and did not do anything that made me go directly to jail. Many are not as lucky. Furthermore, my brain got weaker as a result of the second psychotic break. I lost a lot of ability. I regret the decision I made with my psychiatrist to go unmedicated. I feel he should have known better.
What questions did I miss (and what are the answers)? What else do you want people to know?
I want to share some wisdom from my mom that might help a lot of people. Everybody needs love. Just because some people have schizophrenia does not mean they are monsters, that they are no longer people.
Of course, if someone is acting dangerously, one should intervene or somebody may get hurt. Most people with schizophrenia are not violent; they are more likely to be hurt or killed than to hurt or kill.
I think people with schizophrenia need to keep with the program, to find the medicine that works best for themselves. Everybody is different this way. What might be the best medicine for me might not be the best for another.
I’m taking three atypical antipsychotics now. Low-dose Abilify, low-dose Navane, and low-dose Risperdal. This combination works well for me, given my current challenges. To those who are seeking help, I would say get a therapist until you get some insight into the illness and then some. And, know that success and a fulfilling life is still possible for you with early and consistent treatment if you suffer from schizophrenia.
For those who struggle a lot even day to day, I would like to say that I had a hard decade in the 1990s. What kept me going was music, school, structure, and the story I Never Promised You a Rose Garden because life was hard and stories have always inspired me.
When all else failed I told myself: God gives burdens, also shoulders.