Every day starts out the same: my comforter and sheets are soaked from night sweats, and pushing them off feels like what I imagine lifting a car would be like. “Drug sleep” redefines what I used to know as slumber, but then the effects of my medication seem to be redefining so much more than I’d expected that it’s not surprising that something as simple and natural as sleep should become a different experience. Disorienting. I fall asleep without the gentle nod of the Sandman—I’m just down for the count, unconscious. Then I’m suddenly awake, soaking wet, pinned down by two tons of bedcovers.
Waking up doesn’t exist—I’m just awake. Not alert, not marshmallow- headed, just middle-of-the-day awake…at 7am. Shower, breakfast, medication, all by rote. Like a programmed automaton following its morning protocol. I sit down to write and forget that the morning ever existed, that I was ever asleep, that I am sitting down to write—it’s all clear and sharply focused, but on nothing. Nothing at all. There is a distinct lack of something human in my actions. It feels akin to depression—and it may well be—but if it is, I don’t get to feel it. No grief, no sorrow, just the emptiness of being a zombie on a treadmill, marching steadily toward nothing, no goal, no ending, no happy, no cookie. Nothing. It’s supposed to be better than living with my symptoms, but I’m not certain about that. I consider that life with highs and lows, life with thoughts and actions had something more to offer. All I have now is my art, and I’m worried that I may be losing that, too. Pleasure seems to be missing.
So where’s the tradeoff? How is my medicated life supposed to be superior to my life with symptoms of schizophrenia? I can feel them scratching at the back of my brain, the paranoia, the fear and anxiety. Occasionally a voice might cut through the wall of robotics to annoy me with some asinine pronouncement or cruel jibe. In eight short weeks I’ve been forced into the experience of compartmentalizing, of attachments and boundaries, experiences and concepts which I used to struggle with because I couldn’t comprehend them. Now it seems as if I’ve had to learn a new language and pass for native in under two months time because drugs. Yay. Again, disorienting. What might take a normal person their lifetime to learn, I’m picking up at the accelerated rate of a high-end droid. And for what, I wonder? To be the B-movie monster from the late night double feature? It’s Alive! It Walks Among Us! The Schizophrenic From Beyond the Ward!
I jest, but I really do feel more alienated as a sedate person because my reactions and responses to everyday stimuli seem so appallingly flat to me now. This can’t be the way that so-called normal people live, so numbed to the world around them. How would anything ever get done? I can live with the night sweats, I know how to do laundry, but is life really meant to be so lackluster, so purposeless?
I understand that over time my meds and I will find a cohesion that feels balanced, but how can that really be predicted? If every human being is different, and those of us with distinctly different wiring are given compounds to short change the symptom banks, how reliable is the outcome? The sleep is new to me, but so is the dullness. I’m no longer afraid of people, I don’t get flustered or go into confusion at the grocery store, reading paperwork doesn’t boggle my mind, but I still live with the effects of schizophrenia, the micro-short working memory, the echolalia, the overt social awkwardness. These well-worn components of my life are still there, I just don’t—or can’t—respond to them in the same way. Did I mention disorienting? It’s not as if my memory of my lifetime was replaced by better working circuitry. I can remember the dark times, the terror, the urgency to react to panic, the suicidal thoughts. They’re like stories now, someone else’s story, but somehow mine nonetheless.
I’m told to be patient, and I’ll take that under advisement. The positives have outweighed the negatives thus far, so I find a glimmer of hope in the structured life I’m living since my hospitalization. But the lack of joy, the sense that something is missing—those thoughts won’t leave. When I try to consider my future as a medicated man, I ponder a love life, a family, the possibilities that might have not been mine before, and I find hope. On the other hand, if I’m going to continue to live underneath this car and wake up to the weight of a somnambulist’s twilight, how will I ever find myself? I’m here, I just don’t have the map.
I hear you, Henry. Sounds like Hobson’s Choice to me. I see my family member going through this, as well-but, to a lesser extent. He’s still in his mid teens. Ignorance is sometimes bliss.
I would love to see you achieve your dreams. After all, isn’t that why we’re here? My child speaks of his dream of having a family. Having lost his first family to court intervention, and our subsequent adoption, he is very aware of how tentative life is.
You are extremely bright, talented, and precious to the world. Keep us posted on how you are doing. Keep shining, Henry!
Thanks, Carol. I know what you mean by Hobson’s choice, but my playful mind wants to take it to “Calvin & Hobbes’s Choice”, which would mean more exuberance and wonder, and that’s what I’m trying to focus on, to strive for. This newfound flatness is so reminiscent of my shcizophrenic flat affect that it’s kinda creepy, but as it’s on a continuum, I’m beginning to grok its importance. Hopefully your teenager will find a way into medication and the time it takes that won’t be as disorienting as it has been for me. I have a hsitory behind me with SZ and my impatience is what I’m strggling with the most. I guess we all need to remember to breathe. Thank you for sharing, and for your support. 🙂
My son is living with this and your willingness to share this is very helpful for me. Thank you~Bless you and please continue to write. Cathy
Thank you, Cathy. My heart goes out to you and your son. Things will and do get better, this much I’ve learned. Bless the two of you.
Your writing gift has not been dulled even one degree, Henry. I get so excited when I see you’ve written something new. Nothing stays the same; give it a year to get perspective on this part of your journey. Hopefully you’ll continue to share your journey with those of us who care about you and have loved ones walking on the same road. Just keep going.
Thanks, Deborah. It’s nice to receive such encouragement. You are right when you say that nothing stays the same; I’m mostly frustrated with my own impatience to feel better. Still, sharing the truth of this journey is why I write, so that others can see a new or different perspective, as you point out. So thank you. I appreciate this very much.
PS: Henry, by your beautiful writing along your journey, you are writing the map for so many others. I know you can’t see the way ahead, and I feel the concern you won’t find yourself under that car. But your gifted writing is light. So many of us are following you through our own darkness. I and so many others are walking with you, Henry.
“…but is life really meant to be so lackluster, so purposeless?”
Uhm, no. But as I recovered over a period of several years, it became clear that many of my pre-disease routines (both the kind made up of actions in the world, and the kind made up of thoughts or ways of thinking about things) had to evolve.
The purpose and joie de vivre that I cultivated after-disease aren’t what I had beforehand; they are superior. They are built on a solid foundation of self-awareness acquired through the use of talk therapy with a good counselor.
Illness has taken a lot from me but much of what is gone I am happy to no longer carry as a burden: copious self-doubt, insecurity, uncertainty, and unease.
Recovery has been really hard at times but has allowed me to find a life with higher levels of contentment, gratitude, self-esteem, and well-being.
Thank you for your insights and story, smileandrelax. Much of what you say resonates with me. In the week since I worte this blog, I have reached out to two trusted friends in addition to my case manager and therapist of seven years. Foour days in a row with four unique perspectives helping me find a little more of that joie de vivre that I am currently longing for. Relief from boredom, worry, and concern is something I am already grateful for, and there is more to come, I believe. Thanks for your endorsement of those all-too true tenents. Cheers!
Too, I am also awakening to fears I had only formerly repressed. Not sure that part of our human journey ever ends. I need to be aware of *all* my feelings.
Henry: You and your writing are new to me so I see only, depth, honesty and the kind of unfiltered conversation everyone craves; not just those of us with mental illness. Fear of loosing creative expression is my greatest hurdle with medication. I, too, understand ‘marching toward nothing’ as I peer ahead. But each morning I wake and hear the birds and feel the tug of my dog and just begin again. Maybe I’ll find a new mushroom or blossom to smile about and that is enough for now. Thanks.
As you mention, Barb, it’s those simple, basic events that light up our daily lives. For as much worry as I’ve expended around losing my creative touch, I’m sensing that the truth is to the contrary, as evidenced by the lovely comments this week. Thank you for sharing. I hope you continue to find what we write here at BC2M to be of value to you on your journey. 🙂
You write and express yourself beautifully, Henry. You don’t have a good choice here, meds or full-blown symptoms, but I believe you are making the best choice you have. And I believe that sooner or later, and I hope with all my heart that it is sooner, research will lead to better meds that don’t flatten you or do all the other negative things the current meds can do. There will be a better understanding of what is happening in the brain and body and there will be better meds.
Thank you, Linda. If I’m sure of anything it is that we need to trust that our doctors are helping us make the better choice when it comes to meds vs symptoms. When I was in the hospital I received such positive care. My medications were tuned to my condition, and I was released with confidence. It’s only been in the past couple of weeks that I’ve felt despondent, and I have to assume that this is a natural part of the healing and learning process. Future meds can only improve—we’ve come a long way from the ice-bath treatments of earlier days! Thanks again for your comment.
Wow just wow…This describes much of what I have felt w depression/anxiety, especially with meds. I recently did a genetic swab and learned that the three antidepressants that i have taken DO NOT work w my chemistry. You can imagine my reaction after 13 years of meds that I hoped would help. On to one that is suppose to work w my chemistry – I’ll see.
It really helps to know I am not alone. Your message and congruence are powerful. Thank you.
Betsy
You are definitely not alone, Betsy. I do hope that your new chems work well with your system. That news had to be a lot to take in, and it sounds like you’re a strong person and will do fine. Thanks for sharing this with us!
HBJ… Just wow—you seem to have a light in to the lives of those who live this life as well.. For me as his mom..this particular blog gives me insight in to how my child may be feeling and when he explains this to me, with you wording it this way it helps me more understand…we walk this journey together my son and I , I as his care taker but more importantly his mom who will be here with him for the duration…for him the meds have sustained him and held him in a better quality of life but also the trade off of loss of finding joy in the simplest of things seems lost…he struggles daily with that but we also work tirelessly to find it…keep on keepin on my friend because in our experience it continues to get better with the passing of time… So like you the positives out weigh the negatives and the quality of his every day deems fruitful!!! Thank you once again for the gift you give us in your writing..as I always say, I look forward to your next writing with anticipation because you just bring the light of the subject to the forefront!!!
Be blessed
Monica
Monica—I am happy to hear that you and your son feel that the positives outweigh the negatives at this juncture. It’s so important, I believe, to find joy in those tiny things. My chems still seem to monkey with that aspect of my life, but I work hard to keep my focus. I remember being happy, so I know that it’s possible, as your share explains. Tireless efforts seem to be the way to finding one’s self in the medicated life. Bless you and your son, and thanks for writing!
I see my son as you are right now. He has been just merely existing in a way since his hospitalization, diagnosis, and medication. I don’t mean that YOU are merely existing! You are a talented writer. I just can’t imagine my son doing anything like that, at least not yet. He’s been like a zombie in some ways a robot, as you described, for three years. 🙁
Henry, my son was a reader and a writer.
Thanks for your comment, Jean. I’m sorry that your son feels stuck and robotic—it’s taking everything I have to try to combat those feelings myself. As for the writing—and perhaps this will be true for your son, too—it is my best way to communicate, through art. I’m not the most confident when it comes to one-on-one verbalization, but words in print seem to be easier, even medicated. I guess I’m saying that I have hope for your son’s talents. Recovery after hospitalization, the maintenance afterwards take a lot, but the art will find its way back. That’s my prayer for you. Take care, and thanks again for writing in.