To put things into perspective, it’s been twelve weeks since my last breakdown. That’s eighty-four days since I was admitted to the psych ward, seventy-two since I was discharged. Just a little over ten weeks of being on my own in the New World of a daily anti-psychotic/depression/anxiety medications cocktail. To put it mildly, I’m still adjusting. This is not a game for the impatient.
People ask me if I’m feeling better. They don’t ask me how it feels to be dealing with the effects of being medicated. I get smiles from well-intended individuals who have no idea what I was going through or what it feels like to have survived it, and if they were to inquire, and if I were going to answer, again, not for the impatient. It’s a lot to process and I’m in the middle of it.
First off, how do I draw a comparison for you? I’d have to begin by telling you what it’s like to have schizophrenia. Which means I’d need to have the experience of not having schizophrenia in order to explain the symptoms from the outside. A bit like asking a fish if it knows what it’s like to live underwater; the fish has no point of reference, being that it’s never lived on dry land. It’s born into the water and lives there all its fishy life. So I attempt to draw a picture of a mind trapped in psychosis for the larger symptomatic view, and break it down into smaller, basic components for the day-to-day living. I have to use metaphors because actually describing how I feel or what I experience would be metaphysically absurd. The well- meaning person would have to listen to seeming gibberish as I spoke about sounds being generated from nothing, thoughts which only correspond to experiential data and not to a specific reference point, and the chemistry of panic and depression running simultaneously like equal pulls from a water faucet, and now we’re back to the fish.
In my experience, when it comes to schizophrenia most people only know movie and television stereotypes. They’ve seen the crazed killer on the loose from the insane asylum, the comic book lunatic scribbling nonsense on their dorm room walls, or the mad professor with a penchant for over-explaining obtuse theories. In common, each has an imaginary friend or receives conspiracy information from the Beyond, and eventually men in white coats take them away in a straightjacket, kicking and screaming while being hoisted into the ambulance. They’re characters from films and plays, a script writer’s imagination enacted by a sane person, directed by a filmmaker with a feel for the macabre. These are characterizations based on the viewer’s worst fears of loosing control, of loosing friends and families and all that’s precious. There’s also a kernel of the social bias that the crazy person is in control of their madness, another stigma-induced prejudice thrown in for extra measure which is less than slowly shifting toward a more realistic understanding of the disease. Did I mention patience?
The tool I use is research. I start with myself as the subject and follow the breadcrumbs. For example, my therapist is a solid sounding board—I can discuss my feelings as colors, sounds, interpretations of interconnected minutia, and go from there. She has a professional comprehension of my disorder and can suggest to me ideas which are in line with my internal dialogue. I can talk with her about the voices I hear and we can use another language to describe them as “audio hallucinations”. I can go online or to the bookstore and research articles on the subject to get a deeper understanding of where people like myself have been before concerning said voices. I can talk with a friend who has symptoms in common and ask how they deal with them. My psychiatrist can prescribe medications meant to balance my chemical states when they’re askew. I can educate myself, participate in groups, and share my ideas openly with a trusted friend. It doesn’t ensure that I won’t have to deal with the symptoms of my disorder; it means that I have a fighting chance of surviving them.
Back to the question of how I’m feeling. Well, it’s not like having the flu and getting past the barfing stage. It’s not like having a sports injury and, after enough rest and ibuprofen, getting back into the game. It’s more like being from another planet and trying to assimilate the culture and customs of the native population of an uncharted solar system on the head of a pin. While spinning plates overhead on a stick. And dancing on a high-wire without a net. I’m feeling different from that day when I broke down and lost contact with what everyone around me knows as reality. I recognize myself as being worth not dying at my own hand. But I’m currently living without joy, and that, I understand, is something else which I’ll need to relearn. Not the “without” part, but the “with”. My psychiatrist assures me that this drug-induced anhedonia will fade with time.
Patience, young Padawan. Patience.
I love you, man.
Hello again, Henry. As I was reading this piece, I kept thinking how clear and sequential and specific and informative and emotionally honest your writing is. Writers not coping with symptoms/medication would have a hard time writing this well. Perhaps when you verbalize your experience it seems like gibberish to describe it, but when you write, you give me a very clear understanding of your feelings. Your writing thrills me every time; your honesty and brilliant way of putting it down on paper lets me feel some of your journey and know you a bit. Thank you, again. Deborah
Thank you very much, Deborah. It’s true—when I write I do a much better job of communicating my feelings. Even medicated, I tend sometimes to get a little derailed verbally. A lotta years of confused behavior. Lately, my friends tell me thank my focus seems tighter and maybe that’s what’s showing up in the blog, IDK. Thanks again for commenting.
Henry, where to begin? I love your blog. My son is surviving schizophrenia. And his family is doing its best to help him. Endless rounds of reassurance: ” no one can hear your thoughts” ” the police are not after you” ” you have done nothing bad, you are a good person” . Add a traumatic brain injury just for fun. Your writing ( this blog in particular ) helps inch me forward in what little I can understand and reminds me to maintain the patience. Thank you from the bottom of this mothers heart.
Thank you for such kind words, Alex, and for sharing a little of your story. Your patience is such a vital component in the maintenance of balance. I love hearing from parents who “get it”—it gives me such hope and lets me know that the conversations are out there happening and changing people’s lives. Thanks again for commenting!
Henry! Once again I am humbled having read from your heart and soul. I feel when you write. I feel your words and descriptions and metaphors and I am grateful. I praise you, your courage, your unique talent and ability to describe what it is for you to be living with schizophrenia, and the tremendous gift that you bestow on your readers, upon me, every time!!
Thank you for being you. Thank you for surviving schizophrenia the symptoms that inherently accompany this illness. Thank you for writing about your experience, sharing about your journey, and gifting us time again with your powerful words of love! ~ Jocelyn
Thank you, Jocelyn, for your encouragement. The feedback lets me know that people are open to seeing the world a little differently, and that’s a good thing. Bless you.
I don’t want to recall or remember anhedonia, that’s how bleak it was for me to experience that period of years when I was sick and highly medicated. What little joy I can bring to mind from that time of my life was joy I imagined.
Strong doses of medication acted like a plaster cast might on a broken bone, holding my mind in place so it could heal properly.
One of my earliest experiences of authentic happiness came when some students my age in a community college class I was taking noticed me and invited me to go ice skating with them. They were explicit in stating one of them struggled with depression, and that they wouldn’t need me to pretend to be social or to have feelings I lacked. They were just offering companionship… imagine that!
I remember anhedonia as a thick heavy blanket that suppressed both my symptoms and my emotions, and even my intelligence, at least initially.
I remember how after several months, my intelligence and focus re-emerged and I could read a book again. I don’t recall the specifics but imagine that a doctor must have reduced my dose sufficiently so that the weight and blunting of my mind was eased.
Today I am free of medication (I use it as needed but not daily). People tell me they’d have no idea I have struggled with mental illness. So it’s pretty impossible for them to grasp that the right set or combination of stressors can induce a psychotic episode again. Even I get complacent… it has taken a friend who has symptoms of schizophrenia to sort of stay on my butt about the importance of seeing a counsellor, having meds available, etc. Unfortunately, I’ve had to relapse a few times to get over the complacency that sets in with (almost) complete recovery.
Undoubtedly, Henry (is that your real name?), such a state of health and well-being seems remote and far away from your present situation. For whatever its worth, every single one of my relapses preceded a rapid burst forward in my health. I’m hoping your recent episode is also a precursor to such forward movement.
I remain mostly certain that recovery from even schizophrenia is far more possible than is generally understood. I can explain why, as well, I have this conviction, but it is based on a psychoanalytic interpretation of what the illness *is*, and therefore is debatable, or controversial, especially in an era that relies more typically on pharmacologic than psychotherapeutic treatment modalities.
Fortunately, my family threw considerable money and hope at my illness very early on; I had good meds, good talk therapy, and family who believed in my ability to heal. My stubbornness and persistence were invaluable, too.
With all that being said, my journey was/is my own. And yours is/will be different and unique to you. Do remember that every appearance of suffering conceals a jewel of wisdom and – I mean this in the least romantic or idealising way possible – your illness will in time represent the very portal to a fantastic life.
Thanks for sharing your story, smileandrelax. I would suggest that, if you haven’t already, you consider writing a version of it to contribute to our Stories segment. Your insights deserve a wide audience, and your words might encourage just the right person(s) to view their diagnosis from a new vantage point. I appreciate it; I believe others would, too.
Yes, my name is actually Henry. 😉 Cheers!
Weird synchronicity, as I read this “You don’t know how it feels” by Tom Petty came on Pandora…
I’m glad I found your blog, I followed a link from your article on EveryDay Health.
Gotta love the synchronicity, Jim! I’m happy that you found my blog. We have a number of other writers contributing to the site, and maybe mine will lead you to theirs. Lots of good info and stories to share. Take care!