Sunday, November 29, 2009

Schizophrenia is my new cause

I'm a survivor of colon cancer (11 years). My wife and I have contributed liberally to the American Cancer Society since then, although it is only recently that I started to get caught up in more active support (via the Walk for Life).

It's a great cause, but I'm re-thinking my personal priorities.

As I noted in my last post, my son has been diagnosed with schizophrenia. Prior to the diagnosis, he had been thrown out of two colleges, in trouble with the law, fired from several jobs, thrown out of his apartment, and unbearable to have back at home with us. He had been seeing counselors on a regular basis, but things only continued to get worse.

Since his diagnosis, which was harder to hear than my own cancer diagnosis, my wife and I have been frantically trying to learn about this illness, and we know understand that the behaviors that have disturbed and angered us are not his fault. We're also discovering that schizophrenia is badly misunderstood, ignored, and under-funded.

Some facts:

The Prevalence Rate for schizophrenia is approximately 1.1% of the population over the age of 18 (source: NIMH)

NIH research spending in the US is less than $75 per individual affected by schizophrenia, vs. about $169 per person for colorectal cancer and $2,240 per person with HIV/AIDS.

As many as one in five (20%) of the 2.1 million Americans in jail and prison are seriously mentally ill, far outnumbering the number of mentally ill who are in mental hospitals.

The vast majority of people with schizophrenia who are in jail have been charged with misdemeanors such as trespassing.

Approximately 200,000 individuals with schizophrenia or manic-depressive illness are homeless, constituting one-third of the approximately 600,000 homeless population

I should point out that I lean right politically, and therefore might be thought of by some as a heartless bastard. But I think we, as a nation, can do much better than we have been.

In the single case of my son, we have an individual who anyone (including himself) might justifiably call a "loser". But if we had known a couple of years ago what we know now, we might have prevented the costly failures and the hours in court. Shouldn't we be trying to do that as much as possible?

I don't have any solid answers, but it seems obvious that with earlier detection and treatment, we can divert people from jails and homeless shelters into productive lives, and save a few bucks along the way.

So the American Cancer Society will be seeing a bit less of me, while I devote some time to a neglected illness that needs some positive attention.

Tuesday, November 24, 2009

My son has schizophrenia

On Friday my wife and I learned that my son has been diagnosed with schizophrenia. The first reactions were shock and grief; now we're trying to learn a whole new landscape. I'm hoping that chronicling this experience will help someone (including myself and my family).


My wife and I have two children, both adopted from Korea: a daughter, 25, and our son, 23. Our son was an active, happy child who seemed to light up at the simple pleasures in his childhood. He was diagnosed with ADHD in second grade, and it was sometimes a challenge to guide him through school. But what I most remember is the happy, outgoing child who charmed strangers on sight (and maybe then wore them out with his endless energy).

Eleven years ago, I was treated for late stage colon cancer. I bring this up only because I'm finding parallels in my reaction to that diagnosis and my son's.

My son made it through high school OK, although there seemed to an increase in anxiety during senior year, especially after graduation. At the time, we attributed it to the normal anxiety of choosing and preparing for college.

He entered college (a quasi-military school) and seemed to thrive, but got into disciplinary problems mid-year and was under considerable stress for the remainder of the year. He ended up flunking out, and we learned (later) that he developed a considerable substance abuse problem during that spring.

After that, he was nearly intolerable to have at home (by abusing the privilege of being at home alone), and he "couch surfed" for a while until he ended up in an apartment with a couple of friends while he held a reasonably steady job. Eventually the job and apartment situations deteriorated, and he ended up back at home.

We worked to prepare him for another try at college: he started seeing a counselor, and was accepted into a new school. We delayed his entrance until the second trimester on the school's schedule, in hopes of stabilizing him further (via counselling). The signs weren't all positive; he lost a couple of more jobs during this period.

Three weeks after starting school again, he was arrested for drug possession. We turned him out of the house; he couch-surfed a while longer until his court date. When he was given two year's probation, we helped him get a studio apartment of his own for the benefit of his probation (and our sanity), and he started getting counseling again (mostly at our expense).

After a year in the apartment, he had lost a couple of more jobs as well as the lease on his apartment (due to unacceptable behaviors on his part). We took him back into our home (mainly to keep him out of jail for probation violation). He landed a job at a local fast-food restaurant a.

In just a few months, his behavior deteriorated to the point that he lost even that job. We were starting to suspect depression or even bipolar disorder, and were encouraging him to follow up on psychiatric care referred by his counsellor, but he resisted.

Finally, we reached a breaking point where we had to call the police to our home (not for the first time), which eventually resolved itself into a court-ordered emergency psychiatric evaluation; he was referred to a psychiatric hospital for a more complete workup, which resulted in the diagnosis of schizophrenia. At this writing, he's still there, starting on medication.

Our Reaction

Many friends and family members have wondered why we had put up with so much misbehavior over the past four years. Frankly, we were at the end of our rope; we hoped to keep him from violating his probation and landing in jail, but could not envision tolerating his behavior past May (when he would have completed two years). We had even started on counseling of our own to try to figure out how to manage the situation, because May seemed a long way off...

[Thankfully, my wife and I have been mostly on the same page in dealing with our son throughout the ordeal; we've been slightly out of sync at times, but, for the most part, we've supported each other. We're lucky: I have friends whose marriages have broken up over similar ordeals.]

When we heard the diagnosis on Friday, my reaction was bewilderment (frankly, I didn't understand what "schizophrenia" really meant), and my wife's was denial; she had read up on depression and bipolar, fearing those outcomes, but had not entertained anything as serious as schizophrenia.

The next stage, as predicted by the case supervisor, was grief. Our expectations for a happy life for our son, even adjusted by his failures, were shattered. Frankly, I think we also feared how this would affect the remainder of our own lives.

At the advice of the case supervisor, we quickly purchased the book "Surviving Schizophrenia", by E. Fuller Torrey, and started some web research of our own.

Our denial was quickly dashed: on reading the informal diagnostic criteria, we realized that they described our son's recent behavior exactly.

The next stage was recrimination. Although we had suspected mental illness in some form (like depression or bipolar), we completely missed the depth of his real problem, and, in retrospect, were perhaps aggravating it by pressuring him to get out, find a job, etc.

Next came resolve: he needs help, and we're going to get it for him. The prognosis for schizophrenia can be pretty daunting, but there are treatments, and there is hope, and we are going to pursue it. I expect that this blog will be mostly about this journey.

We drifting back into recrimination: we found some journal entries and other writings by my son from the past few years, and they paint a stark picture of his dawning recognition of his mental illness, and the despair he felt when the people around him (including us) failed to recognize his pain. There is much discussion of suicide in these writings; I can't imagine the guilt I would have felt if he had acted on those impulses and we had found these writings after the fact.

Looking Ahead

My son is hospitalized and has been receiving medication for a few days. It's too early to expect any positive effects, although he is noticing the sedating effect expected in the early days and not liking it. It doesn't help that he refuses to acknowledge the diagnosis, although we understand that this is not unusual at this stage of the process.

In the next week or so he will be transferred into a different level of care (we don't know what that will be yet), with a new cast of caregivers (which will afford us a second opinion, although we have few doubts). We will continue to encounter his denial of the diagnosis and the rejection of the treatment we believe he needs.

I wish we knew how to talk to him. How do we encourage him to accept the treatment? When he resists, should we persist or back off? Is confrontation helpful or harmful at this stage?

We have tried to contact local support groups, but have had no response yet; until we can talk to someone who has been through this, we're flying blind, and I fear the consequences of well-intentioned action with unintended negative consequences.

There's lots more to talk about. I will fill in the rest of the history (hopefully in an organized manner), and provide updates on our progress.