Diagnosis to Healing Part Two
A Room of One's Own
In April of 2010, my second surgery was performed at Johns Hopkins hospital and was successful as far as removing most of the tumor and de-tethering my spinal cord. I regained sensation in my right leg immediately, the pain in my spine was reduced, but unfortunately I lost all feeling and ability to use my left leg. But, my neurosurgeon said it may not be permanent – it could be up to two years before we would know exactly what I have to work with as a result of the surgery. Time, therapy, medication – another round of hope, faith and hard work. Was I up for the challenge? Yes, this time it was different. I felt different. Completely different somehow. I knew this was going to be the biggest physical challenge I had ever faced, but I was going to learn so much through this. And I was determined to move through it with my eyes and mind wide open, despite the fog of medication. Despite my loss of feeling, somehow along with the tumor they had somehow taken away my feelings of isolation and entrapment.
Taking me in
I spent a week after the surgery in Johns Hopkins hospital recuperating and then an additional week at Good Samaritan hospital going through their rehabilitation and more healing. I realized that I don’t do well in confinement; my anxiety level was higher than ever. But later, I found out it was another reaction to medication; this time it was steroids. Still, there was this other feeling…as much as I was going through this mental and physical anguish, I knew it was only temporary – it would pass – and I never felt alone. My family and friends were appearing, I received calls, emails, cards, messages, and everyone in the hospital seemed to genuinely care that I was not suffering. This was a new world for me; I was never this open before. I felt part of something bigger.
After those two weeks, I went home to live with my parents since that was the one place in this world where I could have the love and care I needed in a protected environment. I felt so vulnerable after that surgery. For the first time in my life, I could not run away. It took two weeks before my intense anxiety started to drop but for two months I still battled these intense feelings of paranoia, fear and anxiety. My nerves were raw. I felt like everything around me was collapsing and my parents were like rocks, steady and unyielding. I had a lot of love around me those first few months when I needed it so desperately. I felt really trapped then. Not only could I not depend on my mind but my body was completely foreign to me now. Only, my world was really changing.
I was struggling to walk, climb stairs, not trip over my dog, and just go to sleep. At all hours, I was noticing that the people in my world were reaching out to me, and I wanted to keep in touch and make new friendships now. I was always too far away – physically and emotionally before this. I couldn’t make many phone calls, or keep up with what was going on with appointments; I lost track of days and nights – but I was never alone. I didn’t have to ask for much and I didn’t worry – life went on around me and with me. I was being carried along by my family and friends. I was never forgotten. And it wasn’t a drain on anyone person outside it seemed, (at least I hope not) but rather like a dance – a little attention from each person in my whole circle made it seem like there was a constant influx of people in my life. Like weaving a tapestry of different colors, and the one they were making for me was telling a beautiful story.
My parents have shown me more love and patience in the last six months than you can imagine. It is a huge act of love to take in an adult child again to care for (and her giant, loving but hairy dog) when life springs these little surprises on us. When I went in for surgery, I had no idea what to expect – but me being me – I always think the best outcome will happen. I didn’t prepare for this situation – but I guess no one can, really. Now we’re doing what mom calls “making lemonade out of lemons”. J
I never realized how much love and compassion and support I would have all around me. I had friends and family who care for me and love me – but, there really are times, even now when I can’t do even the simplest things that most people do without even thinking, and I still have to ask for help. A year ago I never could have imagined the outpouring of help and compassion people in my life would show me, and how many people would really come forward and honestly, I couldn’t even imagine where the help would have come from. The “tribe” (I love that word) I feel I walk with now has so many different faces that I didn’t even know last year, or wasn’t even in touch with, and now I can’t imagine my life being complete without them.
I can’t think of a time when there hasn’t been someone there to help me. I am so grateful for all the love, compassion, smiles, and hugs from everyone. Let me say, that there is a lot to be said for someone who can accept a heartfelt “thank you” with a simple acknowledgement. So many times this year it’s been all I’ve had to offer, and I’ve wanted to acknowledge my sincere appreciation for any gesture, help, company, call…and it honors me when someone can simply recognize what a difference they make in my life and that whatever their gift, or presence – it’s made a real difference to me at that time. Even a text message has made my day when I see who it’s from.
Let me express my heartfelt gratitude, for everything…no matter how big or small, “Yes, I do notice everything. It’s just who I am, and I’m not being dramatic when I say – I do appreciate your presence in my life and I do thank the heavens and the earth that we have crossed paths in this journey of our lives. Thank you for helping me through this rough part of my journey.”
I have been working with my neurosurgeon, rehabilitation counselors, physical therapists, psychologist, neurologist, pain management doctors, and a physiologist. Mom, Dad, and Aunt Gerda had to take me to a lot of appointments, help me through a lot of rough times, and practice a lot of patience when I was up every night until five in the morning. During this time, we also had to say goodbye to my dog, Teddy – my faithful companion of 11 years. That was hard on all of us; a lot of my friends remember that. (When I’m ready, I will write a memorial hub to my best friend, but I can’t bring myself to do it yet.) It was a hard summer for all of us – with Dad and I trying to hold our own and Mom trying to hold us all together, sometimes we didn’t know if we were coming or going. But we made it through.
Not only was I surprised by how much support and love came my way, but I was surprised by the direction from which it came. I didn’t expect to see so many faces around me so often, so many smiles and so many strangers smiling too. After my operation, all my nurses and techs in the hospitals, the therapists, doctors, residents and other health care workers I’ve had to deal with since then. See, there is a difference. I wasn’t disabled before I went in, and I was after the operation – so I’m seeing another side of life. I didn’t know it was such a different world, I didn’t want to believe it (because I’m not someone who treats people differently based on ability, race, gender, education, color etc – and if anyone feels differently about my statement please bring it to my attention) but the world is a different place. Strangers either are too nice, or stare – I like the ones who seem to know you really need to be addressed as a person and looked in the eyes. More people talk to me now, I think I have become a safe person in a lot of people’s eyes. Somehow I have been initiated into a secret club of people who have seen suffering and pain – it’s as if I have been inducted into a secret society of disabled, poor, tired, (all the people listed at the bottom of the Statue of Liberty who are yearning to be free) who do not see color, race, gender or religion and funny enough it’s called the Human Race. “The Others” is the group I used to belong to but I had no idea I was there, because I never knew the secret society existed. The Others are the group who appear “normal” and inadvertently place themselves outside of the real group by trying too hard to be one of the “beautiful people” and pretend to live in a world where suffering and the pain of life don’t exist. They may rage against the storm instead of living in harmony with it. Anyway, in this secret society are the real Human Beings and there is more love, laughter, and tenderness. I like being part of it but I don’t know why I was never admitted before. I just didn’t wear my suffering on the outside or “look disabled”. I’m healthier now than I was before though. I don’t get it.
I think what I received most out of this whole situation which was most surprising to me is the ability to trust and to love even more – my heart has opened even farther than before. I thought that I would be more afraid somehow, or that I would be more careful after surgery – instead I feel as if I want to embrace the whole world. I feel as if I’ve been shown so many faces, seen so much suffering through all of this, and been given back my heart, mended in new indestructible material – it’s now unstoppable, unbreakable and so much stronger than before. I’ve felt the darkness lift and I don’t have the fear that I once did; I’ve come into my power. Perhaps I faced death and lived through it somehow. Perhaps I had a vision or met some people in those travels outside of my body. But I feel a new strength and wisdom in such a profound way, I cannot even put in into words. But I do know that I can face whatever comes my way now – I used to say that I believed in “whatever did not kill us made us stronger” but now I know it.
Continuing the Journey
So I have attacked this problem the way I’ve attacked every other problem ... I came back with a vengeance to get well and whole again. There are parts of my body that I have to have patience with, accept that nerves only heal so fast, but I do all that I can to help them along the way. As far as my spirit is concerned, its growing by leaps and bounds as I have been taking in the sunshine; all the love surrounding me; the faith, hope and healing energy that is cast in my direction; and all of the magic that flows around me in life’s unending circle. I’ve grown to love my body again and we’ve forgiven each other for all the disagreements and pain we’ve put each other through in the past. We’ve decided to push ourselves to be healthy and alive and not let anything or anyone put any kind of limitations on us as to how fast or slow we grow. I’ve been in every kind of therapy imaginable and my parents provided that safe place for me to grow strong again. I had a lot of help from my family, friends, and therapists to get me through to the point I am now, and after returning from my rehabilitation vacation to Bavaria…I was ready to begin a new chapter.
Now, I look on this map of 2010, but the map I’m standing on says “YOU ARE HERE!” and I smile because I feel I’m making smaller steps toward independence again. I can walk now. I still have a lot of pain, but I can do most things on my own. I go to physical therapy twice a week. I get my massages, I work out, I spend my hour in the pool, and I’m exhausted when I get home but I feel so great because I’m moving and I can feel the tightening and strengthening of my muscles. I’m driving – I can go shopping (for groceries and to the drug store with help) with a brace on my leg. I’ve had lots of help setting up the house and it’s not done yet but it’s getting there. There are curtains on the windows now and I cooked this weekend! I’ve still got a lot of healing to do, and I’m still on lots of medication, and I have lots of limits – but it’s another milestone for me. I’m here.
With the help of all my family, friends, physical therapists, doctors, and the guardian spirits who are looking out for me – I’m living on my own again. I’m relishing – in a way that Virginia would be most proud – the room of my own.
Now, back to writing my book…Namaste’ and Kubiando!
Lots of love, Erin LeFey
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