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Diagnosis into Healing Part One

Updated on October 10, 2010
Celtic cross
Celtic cross

A Room of One's Own

A Room of One’s Own

Virginia Woolf knew the value of a room of one’s own. She wrote a book about it – a wonderful one at that. You won’t find such eloquent words here…I haven’t got that kind of time right now. But I have to take the time to acknowledge how wonderful it feels to once again have a room of my own…to be living on my own again.

The Main Event

For those of you who know my story, please bear with me while I bring the other readers up to present day. I had been suffering since 2003 with a fatty tumor on my spinal cord. It’s called Tethered Cord Syndrome. Diagnosed in 2003, I was treated with nerve pain medication and mood stabilizers until the tumor and my spinal cord were incapable of both occupying the same space in my spinal column. Surgery at that point would be my only option.

Finally, in 2008, the impact on my life, my work, and my relationships with everyone was too severe – I was actually scheduling my life around my pain… only keeping my head above water enough so that everyone didn’t know how I was suffering – and for what? Depression hit me, pain grounded me and the doctors said it was time because the medicine didn’t work anymore. I would have to increase medication, need more help and even then it was only a matter of time. I was losing feeling in both my legs and had severe pain in my hips and lower back, so I gave in to surgery.

Unfortunately, the surgeon who operated in 2008 didn’t do me any favors. He wasn’t as good a neurosurgeon as he professed and in hindsight, I should have been concentrating on my surgery and gotten out of that river of Denial then – but we all live and learn. Therapy and rest after surgery didn’t help.

When I tried to go back to work and resume my schedule and life – I found that everything was worse than before. Not only was I still healing from surgery, but the original problem still existed. This was an even harder journey for me. I pushed myself thinking I just wasn’t trying enough. Luckily for me, all the negativity I faced was overshadowed with positive input from my family and friends who did love and care for me. They got me through the rough part and helped me find the strength to seek out better medical attention.

Feelings

So began a year of search and rescue. Paperwork, phone calls, appointments - Ups and Downs, Ins and Outs of specialists, tests, poking, prodding, and my medical history went from a few sheets to a binder full and sheets of MRIs, X-rays and all kinds of acronyms I’d heard somewhere in life before. They were changing my medications every few months so my body felt like it was alien to me and I kept falling, I felt like I was trapped in a body that was falling apart before my eyes. I no longer recognized my own image in the mirror.

Its funny how educated you can get so quickly about a condition when you have to. I felt like I was repeating myself over and over and over again. Then I just wanted someone to listen to me. There were times when I really appreciated a sympathetic ear on the other end of the phone; and some days I didn’t want another phony person to speak to me. I wanted to speak to a rude, abrupt person with straight forward honest answers so I could be rude and straight forward back and no one would have hurt feelings. I learned to just press “0” instead of trying to listen through another one of those damn automated systems for my convenience – I didn’t find it convenient at all. When my body ached in places I didn’t even know I had, and my muscles swelled and my head was pounding, the last thing I wanted was to be awake while the room was spinning around me – much less trying to sit up and talk on the phone or worse wait on hold for twenty minutes to some static-filled music that I didn't recognize or like. And if one more person told me to go to a web site, I was going to throw the phone through a wall!

Before the operation, I felt alone and isolated, I really did. My moods fluctuated. I felt like no one could understand my frustration. I was tired of listening to what was going on in my life, I couldn't imagine another person on this Earth who would want to hear about my day. I would go days without really seeing other people because I lived near where I used to work. I didn't see anyone I used to work with though - it seems once you stop being productive at work and your work friends don't find you convenient to talk to (like passing by your office every day) you fall out of the work circle.It was my second time on disability. Mostly I felt trapped. I was locked inside my failing body that couldn't even stay on two feet and locked in my own head most of the time, needing medication to even move – nothing was comfortable anymore – I couldn’t sit, stand, lie down, or sleep.

It’s funny - you really want to be nice to people. But no one seems to know what it’s like to be you. They can empathize, even sympathize, but they don’t know how you feel right now and what it is to be YOU right now. And the last person I want to hear from is the person who has never had a sick day in their entire lives – you know the person who can travel to a third world country and drink river water with a straw they found in the gutter and never get sick; hike through the rain forest in August without a tick, mosquito, or spider bite; and doesn’t even believe in depression, bacteria, or God because you can’t see them with the naked eye. And they are not reluctant to tell you all about it and brag about this stamina - over and over as you lie there dying.


Me during a round of testing at the University of Virginia Fall of 2009
Me during a round of testing at the University of Virginia Fall of 2009

Storm before the Storm

I hated my body; there were two parts of me; me and this tumor. We had become archenemies, joined in a constant struggle in who was going to win each day. In the beginning, I won more days. In the year before April 2010, I fought the hardest, but it usually won out overall. But in my pain and constant struggling, I had become determined, strong in faith, willful, and somehow had formed a list in my head of all the things I was going to do when I got well. I knew though, that without the surgery, I was just biding my time, so I filled up my days trying to learn new things like sketching and painting, keeping my mind sharp,and writing both creatively and in my personal journal – but the pain kept me locked inside myself. I didn’t like the things I had to say out loud. I did like the things I was thinking because they all happened outside of my body in the place my mind went to when it escaped. When I slept, I traveled. I left my body in search of new things, distant places and others like me who only felt freedom when they left the shackles of the physical world for a place of spirit. I made promises here, devoted my spirit to finding a deeper meaning for my life - if I ever did escape this pain and numbness physically, I would find a deeper meaning in life. I had to laugh at that. Anyone who knew me knew I looked at life pretty deeply as it was, but I wanted to live it – I wanted both feet in the sand, my whole body immersed in the warm water, feeling the sun on my face and running at full speed into the wind. No, it didn't matter whether I could physically do this or not, but I wanted to feel everything, go through life, live in love, not miss a single experience and touch as many lives as possible and really know what It felt like to BE. I wanted everyone to know they were never alone, and that life and that greater love is such a gift and that when we close our eyes to it, we only hurt ourselves. The message was so clear, but I didn't have the words...maybe when its all over, I will. We're all connected somehow...if we all just knew how much.

There are times when you are contemplating whether or not you can actually make it through the night because you are afraid you have maxed out your tolerance for pain and the medication isn’t working anymore. You haven’t slept in three days and there is so much stuff spinning through your head - you can’t even close your eyes. You don’t have the physical or mental strength to do even a third of what is on your list but somehow you will anyway - only you aren’t sure you want to because there are just more things where that came from; and you feel so damn lonely in the center of your heart because you just can’t bear anymore darkness.

You can’t keep the darkness away anymore - when you are surrounded by people, you have this “thing” (whatever your particular ailment/sickness is) that sets you apart and no one will ever be able to take any part of it from you, except your God, your higher power, your guardian, your Lady. Only that spirit which sees into the heart of your heart and sees you through the darkest of your nights can understand all the things you can never say and understand. Still, you find within yourself the hope, joy and light for life that everyone else seems to catch in your eyes. Everyone comments on your grace and charm in the middle of adversity – you wonder why you don’t see it. You certainly can't feel it.

Continued in "Diagnosis into Healing Part Two" coming soon...the conclusion of "A Room of One's Own"

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    • Nell Rose profile image

      Nell Rose 

      7 years ago from England

      Hi, I understand now, you poor thing, what a horrible nasty bloody little tumour! thirteen years ago, I had to have my kidney removed, restored and put back in the right way! evidently I had an upside down kidney! along with other medical problems from when I was born, this one really took the biscuit! it took a good year to drain it, turn it upside down and insert tubes, take them out, heal etc etc, and as you say, people are sympathetic but they just don't get it, I will go and read your second installment now, take care, nell

    • Erin LeFey profile imageAUTHOR

      Erin LeFey 

      8 years ago from Maryland

      Thanks so much for all your love and support! I don't know what I'd do without my circle! I'm truly blessed

    • profile image

      Nece 

      8 years ago

      You will never be alone because you are loved beyond measure by so many people, Kat. love you, necey xo

    • profile image

      Mom 

      8 years ago

      You will never lose the support of your loved ones, including me!

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