It's been over a month since my last blog post, mostly because I've been so paralyzed with anxiety and grief, depression and fear that no words could make their way through the haze of my scattered psyche. After all I've lost these past sixteen years, I feared that perhaps the weight of it all had stolen my words. And they are gems to me. I require oxygen to breathe, but when I can't write, my spirit is suffocated. I was lost, and had nothing to write, my broken heart a prisoner of my broken spirit.
Truthfully, I'm healthier than I've been in years, but certain struggles remain. My esophagus continues to constrict, requiring almost monthly dilations. On top of that, I have adhesions throughout my abdomen caused from scar tissues from at least a dozen surgeries. I was hoping to find answers when I met with my head surgeon the end of June, but he told me there was nothing he could do. Doing more surgery would only create more scar tissue, which can then create more adhesions, and more adhesions can create more pain. It's a vicious cycle.
He suggested that my pain doctor raise my medication to help with my abdominal pain. The pain doctor told me that as long as I have to wear oxygen, he won't increase my dose, as higher doses of narcotics can decrease respirations. I spoke to my pulmonologist, and she said that until I stopped aspirating my food and medicine due to my esophagus constricting, more scarring to my lungs would happen, and I would have to live with oxygen, most likely indefinitely. And then we come full circle.
To say I've become a homebody would be an understatement. More accurately, I have become a shut-in, with only the occasional weekend outings with my mom. My driver's license expired years ago. Until recently, I've been on too many pain killers to drive safely. Now that my pain medicines aren't a risk, I can get my license, but I must first take both the written and driving tests over again. It's a project for the near future, but for now I'm a passenger.
My self-inflicted alienation isn't just from a lack of transportation, though. I've developed a ridiculous amount of anxiety anytime I go out, especially if it's someplace new or unfamiliar. Even when I go out with my mom, who is my best friend and ultimate caregiver, I still get nervous. I'll make plans and then cancel later on because I'm too scared to leave. Scared of what I do not know. It's completely unfounded. I want some semblance of a normal life back, so one would think I'd be overjoyed to get out and about. I finally realized that until I work through some of these emotional issues, I could consider that normal life a pipe dream.
The armor I wear to deal with my physical pain unfortunately doesn't translate for my emotional issues. I can be calm and cool right before a surgery, but the terror and anxiety I've felt just sitting and looking out my living room window recently is immune to my protective garb. Time is suspended, and hours can pass as I hold my legs close against my chest, rocking gently as I try to tell myself I have no reason to be afraid. It's like an emotional epidural. Every cell is shut down, with only an endless spiel of anxiety-laden thoughts playing on my nerves like an old picture show.
I see all my negative traits, my character flaws, my many limitations, and I wonder how I can have even the tiniest hope of meeting a special someone when I'm such a mess in my own eyes.
I started to feel paralyzed with fear and depression. Even blinking took more energy than I had. I never thought I could be so exhausted from doing absolutely nothing. I was constantly afraid that something bad was going to happen to one of my loved ones, and I was scared shitless that I'd never be able to shake off the ominous fear that gripped me.
In the midst of all this physical and emotional madness, I had a falling out with a someone I love very much. The stress of our situation even penetrated my dreams to the point that I was having night terrors. I would repeatedly be roused by my mother shaking me awake, because I would be screaming and crying out in my sleep, soaked and clammy from cold sweats. As painful as it was to walk away, that relationship became too debilitating. The collateral damage was too great. I had to act in self preservation. It was the piece of straw on the camel's back.
So about three weeks ago, I made one in a series of calls to find a therapist. I could remain alone and crippled by my issues, or I could seek objective advice to learn some coping skills. My physical issues were compromising my emotional health, and my emotional issues were compromising my physical health. I needed help breaking the cycle. I've fought so hard to survive the physical battles that have come my way. I wasn't about to give up fighting now. Yes, my body has been weakened and repeatedly attacked, but it was my spirit that was truly hurting.
There have been hours where I've been too exhausted to move from my seat. The scope of my physical issues and the long-term reality of their existence suddenly overwhelmed me. When my brilliant surgeon confirmed that there truly wasn't anything that could be done, other than symptom control, I felt something akin to hopelessness. The idea of facing my pain every day, at various degrees, for the rest of my life was mind-boggling. I started to question what quality of life I could expect. How could I continue getting out of bed every day when the prospect of pain is the norm?
It's said that asking for help is the hardest battle. I only somewhat agree. While asking for help is hard, it's hearing your own cries that is the hardest. There is so much noise in life, from both internal and external sources. It's hard to hear quiet crying, especially when it's coming from within. I've built up a shield over the years, my first defense against the continued onslaught of physical conditions. Part of that allows me to cope with repeated procedures and surgeries with some degree of calm and bravery. The negative aspect of that shield is that it drowns out those soft inner cries. Until my spirit is screaming, I just go through the motions.
Last week, I met my counselor for the first time, and we had a great connection. The emotional frailty that motivated me to seek help was suddenly replaced with a spiritual pride. No one can save me but myself, but that doesn't mean I can't seek help and utilize the tools I learn in therapy. The Jessica I was 16 years ago when I first became ill is not the same Jessica I am today. Not even I know who she is. That's what I'm in the process of finding out. The person I am after all that's happened, the woman who has been knocked down repeatedly but continues to stand back up; she is a work in progress.
I'm learning that working through weaknesses is a way to discover great strength. Nobody's life is free from challenges and turmoil. I'm seeking the person who resides beneath the stress. And I'm learning to love whoever I am, despite it all. No one else can figure it out but me. My search for Jessica is perhaps the greatest journey I'll ever undertake. She's in here somewhere.
