- Diseases, Disorders & Conditions
Major Surgery: Last Minute Terror
My Story and Resolve
I know what it’s like to have pain 24/ 7 and have to go on anyway and be happy. I know how it feels to lose parts of your body to paralysis, numbness, cramping and severe pain and not have the use of them anymore. I know how it feels to look fairly normal and get those looks when you pull into a handicapped space and have people stare you down as if you are taking advantage because you don’t “look” disabled.
I know what it’s like to go from independence to almost losing all if it. I think that’s been one of the hardest things for me. I always wanted to be the one to be there for everyone else. I wanted to be the hero – not because I need the acknowledgement… far from it. Everyone has always been there for me; I just want to be there for them – especially my family. I’m 41 years old – My parents are almost 30 years older – they need me – they shouldn’t have to worry about taking care of ME. But that’s what it’s turned into…
Two days before a major surgery, and I am terrified. I have kept such a strong countenance until now. I’ve been working with neurologists and doctors for so long; I can’t believe that finally I’m getting the operation I need. I’ve fought so hard to make my case. It’s a tricky surgery…forgive me while I get boring with medical details but this fatty tumor has been growing on my spinal cord since birth so all the nerves below my waist are running through it. It also has long strings stretching from it attached to the base of my spine holding my spinal cord so tight that it caused my spinal column to bend (Scoliosis) as I grew. It’s called Tethered Cord Syndrome and if you haven’t heard of it, I’m not surprised and don’t feel bad, it’s not common. But there are people like me that do have it, and there aren’t many neurosurgeons who really know what to do with it, and the diagnosis isn’t wonderful. There isn’t a cure, just hopefully some relief. I have a lot of faith and I’m willing to work with whatever I have to make the most of my life.
Since 2003, when I was first diagnosed, I noticed the slow deterioration until 2007 when none of the exercises, posturing or medications seemed to make a difference anymore. My neurologist said surgery was now necessary before the damage was too great. In November of 2008, I had my first spinal surgery to de-tether my spinal cord and to remove as much of the tumor as possible. Unfortunately, the neurosurgeon was not qualified or prepared for such a complicated surgery and after he opened me up, he realized this. He did what little he could, and then closed me up. I went to physical therapy but over the next year, my lower back and leg pain worsened. I was losing feeling in my feet, toes, thighs, knees; having shooting pains from my hips through my thighs; and my entire lower body below my ribs was extremely weak. I was falling more, having balance problems and could no longer rely on my own body to do basic things. I didn’t know a day without a cocktail of drugs and lots of pain in my muscles, nerves, and bones. But I refused to hand over my happiness, hope, spirit, and faith. I would not hand over my independence either, without a fight.
I saw a woman on TV yesterday (and I’m sorry that I didn’t catch her name or the name of the show) who was run over by her mother, accidentally, when she was 4 years old, and most of her internal organs were crushed. She had to endure multiple surgeries throughout her life. What struck me about her was her smile and energy, she was absolutely radiant! The light that came from her spirit was so contagious and made you just want to know what made her so happy. Her answer was “Positive Pain” and I need to share that here because it’s so important. In fact, I think her exact or almost exact words were, “I am in pain 24/7. I can either be a cranky son of a bitch, or I can be positive in my pain. I choose to be positive and happy.”
I love that. It’s like she was speaking directly from the book I would write if I could. I always look for things that are beautiful, in people, in nature, in art, (machines, music, movies, paintings, any work of the imagination in any form including dance, writing, comedy, acting, making a card, drawing, finding a present, card, choosing the right words), I could go on and on and on. When you are in so much pain, and feeling so much of yourself slipping away – it is too easy to be angry or irritable. But no one deserves that, not you, or anyone else you love, certainly not anyone who is trying to help you. It’s a wonderful and beautiful distraction to look for the beautiful, wonderful, kind, sweet, artistic, and natural beauty in people, places, things etc.
But I warn you – sometimes it makes the ugly things in the world stand out farther too and you may have less tolerance for them - but you will gravitate to the beautiful, spiritual, and faithful that gives you comfort and happiness when you need them most. It’s also funny how it makes it impossible to hold onto anger or negative feelings. You have to let them go quickly so that you can let in more things to make yourself feel better, and it makes you feel better physically too. I don’t claim to know how it works, it just does.
But back to the surgery, it is two days before my second major surgery and I am overcome with new emotions. I was so relieved and excited to finally have found a talented neurosurgeon at Johns Hopkins willing to operate on me. I’m feeling happy, blessed and still amazed. I’m so thankful. I have faith, hope and my Mom and Dad, will be there with me and taking care of me; an amazing family and lots of wonderful friends to carry me through, but I still feel alone in my own body and terrified. It will pass, I know, it does. I have to feel the pain, and do all the work in therapy, but I am not afraid of that. I’m not even afraid of dying. I’m more afraid of leaving a mess for everyone else if I go. And these emotions are just the anxiety that comes from being alone preparing for the hospital and the operation.
So I called my best friends. All of them. And I cried. A lot.
I called my parents. And I didn’t cry. I told them about my anxiety and then we moved on to everyday things, happy things and we laughed. They are full of anxiety and trying to be strong for me, I’m sure. So I’m strong for them.
I finished my own eulogy - an exercise, to get the feelings out. And if something does happen to me, I feel okay now knowing that I’ve said something to everyone. I have not said enough to my family in it though. But that, I cannot do. That’s an exercise that would REALLY upset me. I can’t let go of my family, my nieces and nephew – I cling to them in my heart. I cannot let them go now. It makes Death all too real. I cannot even prepare to say goodbye to them. So maybe that means it will all go okay…
The surgery will go fine. I’m ready to face it. I’m more than ready. And I’m happy about it. And I’m strong. And when I’m not, I’ve got back-up. And I have to rely on lots of people for a while to get me through this challenge, but they keep reminding me that I’d do the same for them. And I know I would. I guess that’s really what it is all about. Love and being there for one another. No matter who we are, what relation we have with one another, we’re all in this together. It’s still hard to learn how to be a gracious receiver when I would rather be the selfless giver. I’ve realized though, sometimes you have to just let go.
See you all on the flip side.