Posts Tagged ‘resilience’

The anniversary of my brain surgery is two weeks away. In one sense, it’s been a long year, but in another, it’s passed by in the blink of my one good eye.

Even though I am blessed to be alive and still making improvements to this very day, I have been mourning deeper than I ever have before. Just the thought of how my life so drastically changed one year ago, causes pause, brings tears to my eyes, and a lump in my throat.

My mother told me the first year of grief is always the hardest. My neurologist explained the looming anniversary will inevitably prompt deep emotions. And even though I know all of this, I harbor this unexplainable emotional obligation to be more resilient than when I actually experienced the brain surgery.

My unflinching strength at the time of my surgery was undoubtedly a survival mechanism. I had to believe I was going to live. I had no choice but to think I would be okay.

But where is my survival mechanism now? The intuitive fight has fizzled, and I now am dealing with the reality that I almost died, that there was a strong possibility I may not have been okay.

I’ve been told that I’ve experienced more in this past year than many people do in a lifetime. Knowing this is consolation, but very little. I have no idea what would serve as significant consolation.

The only thing I do know is that I’m here. Despite the bad days and the uncertainty of the next day, I’m still here. And that must count for something.

I have not done any writing lately. I have not been cursed with writer’s block, actually the exact opposite: So much to write, but not knowing where to begin.

In recent weeks, my life has been consumed by fibromyalgia or chronic pain. My doctors have not been able to control my pain effectively, as I was taking up to 14 Vicodin Extra Strength on a bad day, and five on a good day. They are now experimenting with other medications that will hopefully help ease my pain.

I have not made any motions towards writing, my body paralyzed by this pain. The pain taunts me every single minute of every single day. I even wake in the middle of the night moaning in pain. With its lasting presence, it consumes most of my thoughts and actions, and most detrimentally leads to the waning of my passions and questioning of my dreams.

I know writing in my lifeline. I maintain that without writing and the support of others, I would have undoubtedly not made it through this ten-month ordeal. Not just the physical devastation of my body, but the emotional toll of this natural disaster.

About two months ago, I emerged from the shock, denial and self-preservation mode only to realize my life is utterly unrecognizable. I knew my body was not the same, I have always maintained a keen awareness of this fact, but what I did not anticipate was the emotional breakdown I would suffer, a domino effect triggered by my illness, causing relationships to fall despite my efforts to carefully align them as my close inner circle.

I have dealt with the utter devastation caused by the loss of several friendships, the fracturing of familial relationships, and an inevitable feeling of isolation. I look around, and none of the people who I thought would be here are actually here. For one reason or another, they are not here. I feel betrayed, abandoned, dismissed. I have been hurting intensely.

The only thing preventing me from harboring hate and ill will is the knowledge that we are all dealing with our own issues. These lost friends are dealing with issues, which have prevented them from being there for me. Though I do not understand and disagree with their actions, I cannot fault them anymore than I can fault myself for my flaws. I know I am living with certain things every day that seem insurmountable, and I have to assume the same for them.

As my 32^nd birthday approaches, I am excited, yet in utter disbelief. I look back on my life one year ago, and it was totally different. I think back to my brain surgery, realizing that I have beaten the odds; I joined the 30 percent who actually survived this illness. I look back on my recovery from my stroke, and I am striding beyond all of the expectations of my doctors.

And I look at now. My biggest battle is my pain. Maybe it will go away, but likely I will be living with this painful condition for the rest of my life. It’s a painful prospect, even more painful than my recollections over the past ten months, primarily because of hazy uncertainty.

I cannot imagine living like this for the rest of my life. But then again six months ago, I never thought I would be able to walk without a walker. So maybe, just maybe, I can walk through this pain, and dispose of it like have done my wheelchair and my walker.

There is only one thing I know. I can’t stop fighting, despite the fact I am more emotionally and physically tired than I have ever been in my life. I know the path God has paved for me, and I am just trying to figuring out how I will muster up more strength to keep walking.

But it has to be done. Because anyone who knows me, or even read my writings, knows I just done lie down and die, I just take extended breaks from time to time. But I always get back up, and start walking. Albeit slowly, but I will finish this medical marathon in my own time.

My condition is anything but cut and dry. I am triply disabled, and with each disability is a different set of deficits and conditions. It is an interwoven web of symptoms I am tediously attempting to untangle. However, to solve any problem, it must be clearly defined and stated.

Brain Surgery
My brain surgery has left me with a few of lingering issues:

• Vertigo (unlike dizziness, the room spins)
• Lack of balance (partly related to the vertigo, and a disconnect with my brain and body movement)
• Double vision (my eyes spun about my sockets like out-of-synced pin balls, settling unaligned)
• Memory deficits
• Disrupted fine tuning skills (the aneurysm and AVM was in my small brain, which dictates motor skills and the ability to “dot I’s and cross T’s)
• Inflammation of brain surgical site (which disrupts blood flow through blood vessels which contributes to vertigo)

Stroke
The resultant stroke during brain surgery left me with the following deficits:

• Loss of hearing in right ear (not fixable)
• Facial paralysis on the right side (my second surgery corrected the drooping, making my face more symmetrical, but I can only hope to regain functional movement)
• Numbness on the right side of my head (not fixable)
• Lack of coordination of right arm (less precision in using my dominant hand, which affects writing and handling objects)
• Lack of coordination and weakness in right leg (affects balance and precision of foot, which makes walking/stepping difficult)

Chronic Pain
This is a byproduct of my facial surgery and labyrinthectomy, caused by changes in my central nervous system, which causes the following:

• Extreme aches of my whole body
• Joint pain
• Disrupted sleep patterns (the pain often wakes me in the middle of the night)

Residual Symptoms/Ailments

• Excessive tearing in right eye (result of platinum weight inserted in eyelid to help closure)
• Scar on face and leg (results of facial surgery and tendon removal from thigh that was implanted in my cheek)
• Fatigue (caused by traumatic brain injury, vertigo, chronic pain, and medications)
• Weight gain (caused by steroids, lack of mobility, and lots of chocolate)
• Depression (do I really need to explain?)
• Complex Post Traumatic Stress Disorder (previously diagnosed, but exacerbated by my recent physical traumas)

Now that the arduous task of stating all of my medical problems is over, now comes the really hard part: researching each condition, learning possible remedies, practicing proposed treatments, and evaluating its effectiveness.

I have embarked on a holistic journey, which has already proven to be extremely time consuming and physically exhausting. To date, have been practicing the following:

• Nutrition plan
• Physical therapy for my vestibular, balance, and chronic pain issues
• Meditation
• Neuropsychological therapy

Going forward, I will provide a detailed account of my overall wellness plan and progress, which ranges from diet to exercise to stress management techniques.

I want to provide a clear understanding to all of my conditions, as resources are scattered and sparse at best. As I have sought to understand more about vestibular issues, chronic pain issues, traumatic brain issues, implications of strokes, and possible treatments, I have found either overly convoluted medical speak or vague allusions for treatment.

While I am well aware most people reading this are dealing not with the litany or complexity of my illnesses, I want to provide a resource for holistic, healthy living regardless if you are suffering from one of these conditions or none of these conditions, as these practices can be utilized by any and all.

I have been writing this blog for the last year and a half, and the direction of my writings have shifted from primarily writing advice to a written account of my personal struggles, now it will focus on how I am trying to overcome my struggles. However, the essence of the blog remains the same: for the many, not the few.