Part 1. The Why.
Meditation is my best piece of advice. I’m leading with that, in case you don’t read any farther. Just do breathe, release and allow for 10 minutes a day, you will never regret it.
The next part of this comes with a heavy trigger warning. It’s safe to say that many of our “WHY” stories do.
My why is pretty straightforward. I needed to create massive generational shifts to save my own life and fully advocate for my family. I needed a job to create that, while being constantly available and on-call to a bigger job 24/7, for the foreseeable future.
As of now, I have one job, and it lasts a minimum of 12 minutes a day.
Dasha, my partner in business and best friend in life, has the same job. We both smirk a little, because 12 minutes, how bad can it be?
It’s actually not bad. It’s very, very good, and like a good workout, it’s not something that I ever regret afterwards. It’s simple but not easy. The one “rule” in our business is this gets done every single day. Preferably with documentation, but that’s secondary.
Everything else is secondary.
I thought my “one” thing would be something else, something sexier, newer, exciting, but life had plans for me.
When my son was diagnosed with schizophrenia at 18, I became his legal medical guardian, support and advocate. It was a full time job. The first years of learning to live openly with this disorder were brutal. Brutal as they were, they were nothing compared to the prodromal years we had just survived. With a diagnosis, there is treatment. Before, there is constant fear, terror, self-doubt, anxiety, trauma and, under it all, grief. Because something, even without a name, still *is*.
It’s a wide, wavy line; it’s a shifting desert, with a constantly moving target to cross. At what point do you “call it”?
I Googled “symptoms of schizophrenia” a full year before I ever said the word out loud, but I decided that I was the crazy one. My mom had told me once that she had schizophrenia, and I’d told her she was a hypochondriac. How could you hide schizophrenia? As it turns out, it’s not like a tumor- you can’t point at it. It is more like gravity; pushing whether you understand the forces at work or not.
To say it out loud, to confirm it, is tricky stuff. What date on the calendar do you effectively kill your kids future? When do you paint the scarlet letter, and stick him with a stigma he can’t really outgrow? When do you stop pretending that it’s hard to be a teen (and have a family suffering from all kinds of other addictions, mental illnesses, divorces, deaths, etc) and admit there is something, really, truly, horrifyingly, wrong?
One day, it’s the fear that does it: you know that he will die if you do not tell the truth about it, shine the light in all the shadows.
In the midst of that day, a judge asked me if I was afraid of my son. I hesitated, and told him, honestly, that I was afraid of the symptoms of schizophrenia, of psychosis. He said I was hedging, saying something without saying it.
Schizophrenia is a disorder of subtleties. You must become gently honest, discreet and kind with truth- but firm.
I couldn’t say I was afraid of my son, I wasn’t. I was terrified for him. By then, I understood that schizophrenia wasn’t a violence issue, it was a reality issue. I had raised a young man that was polite, generous, kind, articulate, honest, and like anyone, had a will to survive. So he reacted appropriately to whatever was coming at him: in psychosis, I could not assume I understood the stimuli he was reacting to. I wasn’t scared of him- he was scared of what was coming at him and would, like anyone, defend himself, try to keep himself safe.
Every time he left the house, I didn’t know if I would see him again. He was living in a world of stimuli I didn’t understand at all, but the symptoms had started out subtle, like a sledgehammer.
But this is a story about work. I left my job when he was eighteen, when the scales tipped and I could no longer do both effectively. I could see, from my initial reading, and what I could gather from intuition and practical logic, that you couldn’t deal with a disorder of this magnitude AND be homeless, home-insecure, afraid, stressed.
From what I could tell, the best prognosis depended on one thing: insight from the person suffering. Insight doesn’t happen in a state of terror. Stress brings me anxiety- I suffer for real, and it’s terrible. Stress brings my son horror beyond anything I have ever experienced. A rush of adrenaline comes complete with olfactory or auditory hallucinations, paranoia, delusions that range from innocent but not reality, bizarre and not reality and f*cking terrifying and just as real to the person suffering as anything else, even as it’s not reality.
Insight happens when symptoms abate. Symptoms run the gamut, but stress is fuel to all of them. It was absolutely crucial that he have a safe, stable place to recover, without fear of being thrown out, or treated poorly for things he cannot control.
I should point out here that I am not someone who signed an 18 year contract for parenting. My soul made a commitment to the human I brought forth. There were times in the Prodromal phase that my son was awful to me. It was often ugly, scary, gut-wrenching and in those years I dragged myself for every mistake I had made since I had him at 19 years old.
And there was plenty of fodder for that fire, I had many demons I fought in my own growth. But those were self-loathing, trauma, ptsd, that I was responsible to myself for healing. I had not given him a stable life in many ways- there was chaos every which way as I stumbled through as best as I could, but one thing was stable as a rock- I always had his back.
It wasn’t about “giving up my life” for him, or being a martyr of any kind- it was a supreme honor to help him, and it still is. It’s hard. I am not going to lie. But ultimately, it isn’t about him, it’s about me. It is hard for some to understand, but there isn’t a version of myself that goes on to “live my life” while he suffers. At the same time, he has a similar responsibility to himself to heal his hurts and accept his shadows, and ultimately, his life is his own to live, as mine is mine.
It is right in my life to be the best advocate, support and caregiver that I can be for my son.
So I started reading, and reading, and making phone calls, and joining groups and talking to people- but most of all, I really started listening to my son.
Most people are surprised to find that schizophrenia (and other psychosis spectrum disorders) has a lot in common with Alzheimers and Parkinsons. Although we don’t yet understand the many, many factors involved, but whereas Parkinsons and Alzheimers seems to have to do with a lack of dopamine, schizophrenia features an excess of it.
If I had been taking care of an elderly parent with Alzheimers, it would have been easier to explain. People have a hard time understanding staying home to care for a healthy looking young man. A smart, articulate, well-spoken well man who wanted absolutely nothing more for himself than to be free- independent. He was ready to start his life but life as either of us knew it was ending forever. The words are true, it’s a new normal.
I don’t know how anyone with a debilitating illness with symptoms as diverse as hallucinations, delusions, anhedonia and as frustrating as cognitive blunting and anosognosia can also navigate the healthcare system, manage medications (this is a lot of my life, even now), insurance, housing, a job… For us, it took a real commitment to just be the support in all of that, much less the person suffering.
For us, we could not manage to get care in the city we were living, so we moved back to my son’s hometown in Alaska. He had an easier time in a familiar city, so I made him a deal.
If he would agree to all recommended treatment from the psychiatrist, agree that I would be his medical guardian so that in the case of psychosis I could get him emergency treatment and sign a contract for a few very simple living rules (no violence, no smoking in the house, that’s about it), I would scrap our life in Seattle, buy a trailer in Alaska, and never, ever force him into hospitalization if it were up to me (we both understood there are other forces that can supersede my wishes on this, like if he breaks a law).
I also agreed, to the best of my ability, to give him as much support and advocacy as he needed WHEN he needed it, and to withdraw that as needed when he didn’t need it. When not suffering the symptoms of schizophrenia, he was and is a normal young adult man. Which means, back off, mom.
Once we’d moved and established care for him, and I had been awarded legal medical guardianship, I tried to go back to work. It was a wonderful job but it was awful. My husband ended up leaving his job constantly to put out fires, to give rides, and just to be there- of the biggest risks of schizophrenia for young men is suicide. Being there is support.
So I quit, and I got a boat. I decided to teach him to troll for salmon, which I’d learned summers in Alaska as a child with my dad. Then he would always be independent and would always have a place to live, if I taught him some simple skills.
This ended up being complicated.
One, a month after I decided to fish with him, he had bilateral, unprovoked pulmonary emboli. This is treated with a lifetime supply of blood thinners, because if they don’t know what caused it, it could happen again anytime. It was debatably related to second generation antipsychotics, but, as the psychiatrist at the big hospital we were medevacked to told me in no uncertain terms, untreated schizophrenia was more dangerous than bleeding lungs, so I should accept, as soon as possible, the fact that he had a lifetime rx for both.
He told my son, with a sweep of his arm indicating the tent cities lining the streets surrounding the hospital, that the difference between them and him was support. He needed medication, but without support, his odds were poor (I personally do not believe this- I believe he has strong intuition and inner-strength, he is loving and genuine, and he would have found support without me, but at perhaps a longer, harder road with avoidable suffering).
The second complication was revealed to me clearly during our week in the hospital, but was confirmed by my son’s psychiatrist back home. I could see, spending 24–7 with him in a crowded, stuffy hospital room something I had never seen quite so closely and clearly before: he was fighting it all the time. More than I knew, and more than he let on.
Vulnerable to voices coming from the beds, from tv’s throughout the floor, the PA systems… lack of sleep and unfamiliar people treating him in ways he didn’t always understand was awful. We were treated wonderfully, but I could see the truth of it- the schizophrenia was much harder to take even than what I had witnessed the week before- my otherwise healthy, twenty-year old son coughing up copious amounts of blood and in the worst pain I had ever seen anyone in.
In those early hours at the hospital, he’d looked at me in a bit of wonder, and asked me if this was going to take him out. He looked surprised, scared, as if, how could it be so simple, and how could today be the end of my life?
No, I told him. No, this was not the day for that. But things had changed, markedly, once again, forever.
Not only would he need to avoid activities that could cause him to bleed (blood thinners are much better these days but the chances of not clotting can be high, and the anti-dote has just been invented for his particular blood thinner, and is not yet available), but he would never, ever, be safe, alone, on a boat. With me, yes. Alone, no.
At 38, I became the captain of a salmon boat, with a reluctant deckhand that couldn’t be stressed or operate anything potentially physically dangerous. That was a fun couple weeks, and then two more years of running the boat alone. For my sense of self, I did things I did not know if I could do until I had done them. I ran that boat, in the ocean, in alaska, by myself, I faced some demons. Once more, I found my demons were not people, but my own self-doubt.
As for a career, it was decidedly not fulfilling to fail at both fishing and what I by then realized was a full time job as advocate on a good day and caregiver on the not-so-good days.
At 40, I had what I will briefly describe as a break-down. Things were going better and better for Michael, I had released the boat to another woman captain, and I was finally free. But I wasn’t. I was more and more debilitated with anxiety. I was crushed with depression, hopelessness. I had some major healing to do. For every person who suffers or supports someone through schizophrenia, trauma is a comorbidity for the entire family. It can be some scary shit.
After a year of…life. And a lot of soul searching and work, I emerged realizing that I needed to redefine and reframe my life, once again.
I could be the support and advocate I needed to be, and I still had a lot left over- in fact, the more energy I spent, the more creative I was, the more I had.
I could be there, do the right things, follow all the instructions and directions, but i could not make myself small enough for someone else to grow.
I knew a lot about schizophrenia, and symptoms, and psychosis, and support but I had missed the mark on my role.
It wasn’t my job to kill my kids dreams, and it wasn’t required of me to kill mine.
I was so busy trying to keep everyone safe that I had missed the point: schizophrenia is our truth, our reality, but it doesn’t have to be the end of our story.
Next, Part 2, The How.