Living in the Moment of Anxiety and Fear (final)

I think when a person allows themselves to feel vulnerability they start to understand that even if they want to they can’t do everything on their own in life. I’ve had to trust total strangers more times than I care to admit, doctors, in emergent situations, surgeries, etc. Having surgery a few days ago I was writing about the experience before I went into the procedure room. I stopped writing quite abruptly as the relaxation medications took me to a place of complete calm and started causing black spots in my memory. You can find that blog here.

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They covered me in warm blankets, still stiff and slightly off white - a color that you can’t quite decide if it’s how it’s supposed to be or if it’s been washed and is now dull like all those detergent commercials. The medicine entered my veins and immediately I felt warm and comfortable. Not that my surroundings suddenly became lush, but that I “knew” I was safe. All the tension seemed to lech out of my body and melt away as my weight just relaxed into the mattress. The stretcher felt like a warm cloud, comfortable and comforting. I felt at ease like I hadn’t felt for days leading up to the surgery as my nerves were on hyper alert wondering what pain my body would experience later. My anxiety that I had been trying to curb the previous days was blissfully gone, my smile no longer felt forced, I felt like everything would be alright. Hell of a drug to do all that, it’s not much wonder why people search them out, why they prefer the feeling of blissful ignorance over that of a scrambled worried mind. I feel out of control if my mind isn’t working in a thousand different directions at once. I feel out of control when worry isn’t in the back of my mind pushing me forward. When I don’t worry, I don’t fight. If I don’t fight, I don’t live. This day it was a different worry than what usually drives me, but they all stem from the same place. I was afraid of pain so unbearable like I had felt previously during this surgery. I was afraid my worn down body couldn’t handle the extreme pressures of pain again this year. I was afraid that this surgery wouldn’t fix the problems I was having. If I cannot get rid of the kidney stones, I cannot fight toward my ultimate goal - survival.

I can only fight so many battles at once. Sometimes I am not there for everyone I want to be there for. Sometimes I have to put some of my own issues on back burners to simmer because I do not know how to solve all of the problems at once. Sometimes I have to compartmentalize my life into different priorities because otherwise it’s too overwhelming and I don’t know where to start the battle.

I was rolled into a room with so much equipment and so many lights on the ceiling I didn’t take in much else. The cool air touched my nose for a minute as my brain caught up with my body. Taking in my new surroundings for less moments than I could comprehend. I believe the surgeon who was going to do the surgery was there while I was being drifted off to sleep, I remember thinking that didn’t happen too often. Most surgeons are in with another patient as a new one is being prepped, our medical establishments are not personal anymore, we are computers and engines that need to be worked on.. as many as quickly and efficiently as possible.

I detest being a machine for doctors to work on, I want the personalization, I want the bond, I want the relationship that humans build. I want that with everyone who comes into contact with me, I will not be another body. I need to feel humanized. I chose my doctors and hospitals wisely, I see different doctors and I tell them how I feel. I am not someone who has no input on my health, I am the leader of my health team and any doctor who is not willing to get into line with me, will not be on my team. We have to be able to discuss my care, I have to have doctors smart and willing enough to teach me their expertise and answer my questions. I need to know we have a common goal, a goal to keep me alive and living my best life possible. I need my input to be taken seriously, to be considered, to be understood. When people do not listen to me, I’m not the nicest part of my team. I am my own biggest advocate. Being quiet in the game of your life is passive, passive can be dead. If I didn’t fight for new doctors, new treatments, new ideas, new people to teach, and guide me, I might not be here. If my doctors can’t understand that, then they don’t stay my doctors for very long.

The mask was placed over my mouth and that’s always the first inkling I have that we are moving on to the next step of our procedure. The mask is filled with air, like cool pillows completely covering my nose and mouth. The bitter tang of anesthesia fills my nose and coats my tongue, filling me with the quick dread of “times up”. The time has come for me to have absolutely zero control. I have done everything I could do up until that moment to trust those I have chosen to do the procedure. I have picked the hospital, I have talked to the doctors, I have asked all the questions I could think of. I have chosen them to do the job they are there to do. I reach out my hand before I will give over control. I will not allow myself to fall asleep until I have felt someone grab my hand, I find the eyes that hold my hand and meet them. I’m asking that person to watch over me in that moment. I squeeze their hand and feel their hand squeeze back. I calm myself, taking slow deep breaths in through my nose, out through my mouth. I close my eyes. It’s time to allow myself to leave my body, it’s time to put my consciousness to sleep and stay calm and restful so my body has the strength and energy to heal after I’m done.

Before you even open your eyes your brain turns back on, you start to hear and smell the things around you. Feel the presence of other people in your room. Your conscious slams back into your body hard and you feel assaulted physically, confused mentally, and drained emotionally. Many people don’t know whether to laugh or to cry when they wake up. Not because they are happy or sad, but because they are overwhelmed.

I felt the pain in my jaw first, the feel of something abnormal in my throat. I tried to speak, but someone stopped me right away. “Hold on Whitney, not yet.” The tube was removed from my throat and the instant relief I felt was overwhelmed by the irritation of my lungs and throat. Things were hazy over the next few minutes, asking the time, how things went, where my mother was, etc. “We’ve called your mother, she’s on her way.” Knowing she is there I know that my body is safe in her hands, it’s my green light to go back to sleep. The exhaustion beats all else and I know sleep is the best thing to clear my head. However, my mind snaps back to that place one year ago.. with my mother and my best friend walking into my hospital room and the pain tearing through me. The looks on their face as I cannot calm them, I cannot protect them from my pain as I so often try to do, because they are there to witness it first hand. I cannot save them from seeing my pain, I cannot prevent them from feeling it. I reached my mind out to that so familiar place of pain, and there it was. The throbbing growing stronger, the pain searing through my side. I whimpered in the moment too afraid that this procedure had complications again.

I had complete faith and trust in my surgeon, he could not help the way my body and stones were made up. He could not prevent my kidney from bleeding. I saw the pain reflected in his eyes during the out patient appointment weeks later. “I’m sorry for your pain, I’ve never seen that happen.” He hurt because he hurt me, but he did not hurt me.. He caused me temporary pain to help my body heal. I was pain free for nearly ten months after his last surgery, the pain was temporary.

“It hurts,” I cried, feeling the mental pain more strongly because of my previous experiences. I was terrified. The meds blissfully took the pain away easily, I settled down to sleep some more. The pain came and went, I had moments where there was no pain at all and times where the pain was severe. I talked with all of my doctors, my surgeon told me the procedure went well. The stones were finally gone. My pain should be gone in a day or two. I wanted so badly to believe him, I trusted him.. but I didn’t trust my body.

Sleep was my friend that whole day, I had no idea of the time and no idea of who was with me most of the time. I knew my mom was there, I could see her when I looked, I could feel her hand on me, I could hear her tell me it was ok, I knew I was safe. I didn’t know if the pain would try to tear me open from the inside at any given moment. That’s when the first huge twinge hit me that they didn’t do anything about. “what’s wrong?” my nurse asked, “my side, it hurts!” I forced out. Words not forming correctly in my mind, let alone forcing them out of my mouth. All I could feel was the pain, all I could think of was how it was going to get stronger and stronger until I couldn’t bare it again. “We’re going to give you anti-spasm medication, sounds like your kidney is spasming.”

“no…it’s not…” All of these words rushing through my brain so quickly I couldn’t speak them. The doctor said there’s not stint so it wouldn’t spasm, the doctor said I would have pain for a day or two because they flushed the kidney and all the stone dust would need to pass, the doctor telling me it went well. The nurse telling me the exact opposite. When doctors don’t read each others notes and expect me to tell them everything that was said, usually I can comply. Usually I am my own biggest advocate, in that moment.. my anxiety was building. They aren’t doing what needs to be done.. They aren’t listening to me… The pain is going to get worse the longer they dither about what to do.. Why aren’t they listening to me? Why aren’t they reading what the doctor said? Why wouldn’t they listen? I wasn’t speaking. The things that were screaming in my mind weren’t coming out. I was moaning and mumbling half a word. Working myself into a panic. Why can’t they understand how much this hurts? Why aren’t they helping me? “Mom! Tell them! I can’t tell them!” I feel her rubbing my back and telling me it’s ok. I can feel the intense pain building like I felt last year. The pain I thought would kill me from sheer shock. The pain that almost did kill me in an overdose while trying to get it under control. I couldn’t help asking myself how I was so weak. why I was letting this situation control me.

I was shaking and sweating and gasping for breath, “I… CAN’T… BREAA…BREAAATHHH.. HELP ME, I CAN’T BREATH!” My voice was weak, I found somewhere in me to scream out, I could feel myself tumbling down into the panic.. I felt it overwhelming me. I had a full blown panic attack because I couldn’t get my words out. The pain I was feeling was probably not 100% physical, I was feeling the pain and worry of the year before. Where no matter what anyone did, it wasn’t helping. I remembered screaming in pain. I remembered tears flowing down my face. My body shaking without my control. I had never been in that much physical pain, I had dealt with many surgeries, many procedures, many pains - but that was beyond anything I had ever felt before. I was terrified of that pain returning.

“You’re having a panic attack, you need to breathe.” My mom kept repeating to me as she rubbed my arm. “I can’t, I can’t, I can’t..” I managed to get out every few seconds. The breaths coming so fast, my heart rate so high. I had to calm myself, I had to fight. I was angry. I was scared. When I’m scared I get more angry. It’s always about control for me, I can control where my anger goes, if not always where my fear comes from. I fell asleep, I was exhausted. Mentally and physically drained. I couldn’t control my self anymore.

My emotions weren’t rational. I said things I should not have said to my nurse, I yelled and screamed and probably cursed. I was angry because the doctors didn’t listen to me. I was angry at my nurse for not telling the doctor what I said so my words were misconstrued. I was angry at myself for giving in to fear and being unable to communicate how I felt. I was wrong. I should not have yelled. I should have controlled my pain and my fear, I should have spoken eloquently and wisely. I was not the person I want to be that day in the post-operative room. I owe the doctor and the nurse an apology for my behavior.

I’m not strong. I’m weak. I make horrible mistakes and don’t always represent myself well. I don’t want to make memories for someone that are not happy. I’m afraid I did that, that day. I was out of control and out of my mind. It’s important to acknowledge our mistakes and to apologize for them. Maybe I’ll see that doctor and nurse one day, maybe I’ll get the chance to tell them I’m sorry. Right now I can’t, so I’m writing down my imperfections. I want to remember them so I can work on them next time. I am far from perfect, I am far from wise, I am far from strong. Many people think I am and I don’t want to let them down, but inside my head is always a mess, my heart is always on fire. I control my emotions not because I am strong, but so I can work towards strength.

I’m sorry to my mother, she has had to deal with me at my worst moments more than probably anyone else. I’m sure I embarrassed her that day with my behavior. I didn’t represent the person she raised, I got lost in the anxiety and fear. The pain is gone, the surgery went as well as I was told it could. The surgery is over, hopefully taking my remaining fears with it.

#lungs #hospital #invisibleillness #cysticfibrosis #surgery #fear #anxiety