Hope vs. Fear

The wall clock was ticking almost imperceptibly, thought I heard each time the hands notched forward. The mild discomfort had transitioned into a deep ache in my lower abdomen. I held still and counted the ticks on the clock. I let my mind wander and desperately tried not to think about it. My wandering was interrupted by the doctor. In his broken English he told me it’s just in your head. Go. go to the bathroom. My mind was trying to process what he was saying but I had lost track. This couldn’t be possible. Why in god’s name would I do this to myself. He reinforced his order for me to go to the bathroom. I rolled over and tried to get up but my body was just too shaky. beads of sweat rolled off me. In a half hunched over limp I slowly made my way back to the bathroom. Nothing. I stared at the walls and pleaded with my body to cooperate. I thought to myself how fucked up my head must be if this is what I was doing to myself. More minutes ticked by. I roughly calculated in my head how long it had been since I last urinated. That morning? or was it the evening before? I couldn’t think. My hands were shaking and the discomfort was edging fast toward pain. I looked at the bed. I could just curl up there. But they will just ignore me. No I have to be somewhere visible. so I returned to the hard bench I had been laying on. Least it was out on the unit and not behind a door. I curled myself into a ball and listened to the clock ticking. The sweat had soaked my shirt before the clock met the next hour. I was dizzy and disoriented. I had lost count of the minutes. As the next hour passed I couldn’t move anymore. To breath was deeply painful. I held on tight to the cheap molded plastic and began to think this is really bad. Up till that day I had had a pretty good relationship with my body. I’d had surgeries, but I had never been really sick. I was feeling sensations I had never before felt. My heart would race and I’d sweat more, but it wasn’t a normal sweat. This was an icy strange sweat. I was getting really scared. The staff just watched. I was starting to slide in and out of the present. I forgot the clock. The grip on that bench was all that mattered. I told myself, don’t let go. Hang on to the bench. It’ll be okay. You’ll be okay. But I knew I wasn’t. I had tried to plead with them. I had explained it had been too long. I couldn’t pee. Nothing. Evening arrived. I kept hanging on till I heard her voice. I had lost all focus at that point though I do remember her hands on my cold sweating body. Hey? I tried to look at her. I couldn’t move and was trying so hard to breath softly so as not to move at all. I heard the echo of steps away. No, don’t leave. I don’t want to be here with the clock and the bench and this pain. I didn’t do it. I don’t understand. But she didn’t leave. She just went to get the charge nurse. The one that had been ignoring me for the better part of the day once the dr said it was in my head. They were waiting me out. Waiting to see when I gave up and went to the bathroom. Sadly, I couldn’t. Instead I suffered. Instead I curled in on myself terrified of all these strange sensations my body was using to tell us just how dire this situation was becoming. I got lost again. I couldn’t stay awake. I didn’t want to feel anymore pain. My partner was chastising the staff as they took my blood pressure. I saw the nurse’s eyes as she looked in disbelief at what the vitals were. I was sick. Really sick. Not in my head but in my body. The drugs they had given me to try to halt my depression had just made me completely unable to urinate. In the course of a day my body had slowly crept toward a medical emergency. I didn’t know it. I knew something was very wrong. They told me it was my fault. It was my deciding not to go. Over the course of the day as my discomfort transitioned to pain and onward toward shock I was left alone. I was reprimanded for not going. I was told to stop. The sad thing is I didn’t know if they were right. As the nurse ran off to call the medical team I looked at my partner and prayed they’d fix it now. I feared they too would just say go sit in the bathroom. Instead I got a catheter. My vitals stabilized and the relief was immeasurable. The cold sickly sweat that drenched me earlier dried and I was able to get up and walk upright for the first time in many long hours. It was a lesson in feeling completely powerless. To my body, my mind but most of all to a system that writes off a psych patient’s complaints. I wish I could tell you that it was the only time that happened to me. It isn’t. The whole awful scenario repeated itself. I lay in the same ball praying for someone to fix it. The same hours clicked off the clock. The second time I was just somewhere way down the list of some overworked nurse practitioner. I begged the nurses, staff to go find a catheter. I told them just fucking find one and I will do it. I had the skills because the first round had fucked up my bladder enough that I had to know how to catheterize myself. The said they’d call the nurse practitioner again. Nothing. The same sickly icy sweat. the same racy heart. The same fear that this would go on forever. The same feeling of being worthless and small. In the same strange twist a visitor showed up and pitched a fit on my behalf. Sad how it takes an outsider to advocate before anyone responds. My begging fell on deaf ears. Her demands moved them. 1500ml drained. The average human bladder holds about 300/ 350 ml. In all the hours I was left to wait and told to drink water my bladder stretched to 4-5x its normal. Sad thing is that leaves permanent damage. As in forever. Not a week goes by where I don’t have reminders of that. The minutes sitting waiting to go. nothing. or the start and stop. the going so many times and not completely going. That is forever. That is the cost. So where is the line? When is enough enough? When have you tried hard enough, or not enough? Every drug has a cost. Every single one of them. Is it bad enough to create a medical emergency? maybe. maybe not. In the past 20 years, and the almost 30 meds, I have seen most side effects, both common and uncommon. I’ve had the side effects the docs shrug and say not possible. Like the urinary retention on Paxil. I’ve had colors in blocks float across my vision. Shrug. Only later to find out, oh yeah, that is from the higher dose of Wellbutrin. Don’t they all read the same fucking manual? I am sick of feeling like a crazy person when side effects come along. That indian doctor I met so many years ago chastising me for not going to the bathroom. His voice is what echos in my head. every time. Maybe I’m just nuts. Maybe it is my fault somehow. Try harder. Ignore it. I stopped reading inserts, and info long ago. They all cause something. Is it worth the cost? Guess from the dr standpoint it always is. The dizziness, the stomach upset, the weight gain/ loss. If the drug gets you to stable they are all worth it. If they haven’t killed you. When did it become okay for a medicine to cause 20+ lbs weight gain (average), metabolic changes and possibly diabetes. Is that ok? Is the trade off worth it? Being physically unwell but mentally more stable is fine. In what galaxy is that okay? In mental illness it is management not cure. This isn’t like chemo where the doctor can give you a course of tx to control/ kill the cancer cells. If you have 70% chance of recovering and getting to remission but you will go through hell physically to get there that is a decision. The decision is based on those odds. We have no fucking odds in this. None. It is a roll of the dice. Most of these drugs perform no better than placebo. A fucking sugar solution. Let me sum this up. I have, for 20+ years, subjected myself to more drugs than I can count with nothing more than a leap of faith to guide me. To trust, sometimes blindly my doctors as they write out script after script. That is trust. That is laying yourself out there while desperately seeking a better life. A more stable life. I have so many regrets. So many awful experiences along the way, but I keep coming back. I keep looking for that magic bullet that will somehow make my life better. There may never be one. I may never find stability. What I know I have found it more questions than answers. More harm than good. More risk than gain. That is what my journey has been.
Here I stand on the next step looking out on another journey. Do I walk this way or that way? There are days I look at the multiple pill bottles crowding my cabinet and think WHY? why do I do this? Is it all worth it? Each time I swallow those pills. It is mechanical and robotic. Completely without thought most days. I subject my body to everything in those little chemical nuggets. I swallow them with the faith that they can help me. I need them to work for me. As we have worked through each different medication and discarded it for another I try to think back over each one. What was good or bad. what was neutral. Some stand out, others are just a blur. I know it was a thoughtful and carefully plotted course. Each one was chosen for its likelihood of helping me. All had side effects. It is the ones we cast aside due to these effects that I ponder. Did I try hard enough? should I have just sucked it up and taken whatever it was? Is it my fault we are at yet another crossroads? Even if it is for lack of trying why should I feel guilty? Why should I feel like it is somehow my fault? It is my right to choose my suffering or lack there of. It is far harder to make a choice when you have no odds, no timetables, no proof any of them work. I watch as a friend goes thru chemo. I have seen her go from healthy, albeit with cancer cells lurking, to looking like death is waiting. I have watched her make choices and submit it weekly treatment in hopes of eradicating the cancer. The oncologist can give her pretty hard fast facts and numbers as to how effective the taxol is for her type of cancer. He can tell her this is what you will go thru after each infusion. He can even tell her you have this many weeks. That is something to hold onto. A way to push thru the illness and pain. The evidence to enable enduring it all. This isn’t like that. There is no timeline, no specific side effects that the majority tough out. There is no end in sight. All there is is faith and taking a risk. Nothing beyond that. That is soul crushing at times. Without a timeline decisions to continue or give up are difficult at best. Without a solid profile of efficacy there is no proof to hang onto. There is nothing. This is what it is to be a patient in this system. From the dismissal and the questioning to the never-ending request to take risks with little information to go on, it is what makes this road so hard. I have tried hard to trust, even when I have been let down and YES harmed. I come back each time. I return with the hope it will be better. That hope has been tested and even extinguished at times. It has been pushed and it has been bolstered. It remains. I only ask that it be acknowledged. I ask that the decisions I make be seen for what they are. That the risks assumed be noted. All I have done and all I continue to do is based on that hope.
My reaction to the email was in part a look back at this journey. Seeing all it has been and all it will continue to be. I try hard to remain hopeful. I force myself, even when scared and discouraged to try again. I don’t even want you to lose sight of the costs at my end. It isn’t just a piece of paper. It is another road untraveled. Another risk. My path thus far has left me with scars I will bear forever. They will never ever be just a pill. Please see that and know I get scared. The unknown has been unkind to me in the past. I no longer have blind ignorance to cling to. Nothing remains for me but the cold hard truth and the reality that this is my life and will be forever. That the hope and the fear both step off together onto a new path with each script.That takes a lot out of me every time. All I ask is that you see my fear and my pain. that you realize how difficult the choices are both to continue or to change. There is always doubt and there will always be fear. This is a long road and at times that fear eclipses my ability to remain hopeful. I do not refuse medications out of stubbornness or wilfulness but out of fear. It is a constant companion during this journey even as I try my hardest to make the right choices. My past and my experiences will always linger when another change occurs. I have been hurt and nothing will ever erase that. I want to get better and be stable though I often lose sight of it beneath that fear.

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