Monday, August 2, 2010

One glorious day....

*This is something I wrote about a week ago in a sudden "fervor". Unfortunately moving house and no internet has delayed me in posting it

There is something in the atmosphere, an air of excitement and opportunity, I’m not really sure what it is but I feel like I am sitting in a deep pool and I need to jump up out of the water and grab whatever it is before the waves of depression pull me back down into the murky waters where thoughts of pain and suicide will cloud my vision of whatever it was that was holding it’s hand out to me.

It could be just the last dying embers of a month of euphoria spent in the whirlwind of the Soccer World cup, a dream come true for me. That is definitely part of it. But the real source is what has been happening to me the last few days and resulted in an eventually epiphany last night.

I have never mentioned this in this blog because, God knows, there is enough to mention. And to talk about this subject as well as continuing to write about my daily battles with depression and anxiety would just be a bit over the top. But if I can take a break from those musings and turn the subject to something that is just as close to my heart.

A year ago I started to go blind- my sight had been rapidly deteriorating for a while, I thought it might have been the result of high blood sugar- a good enough reason to go to the doctor. But being uninsured, broke and under the dangerous premise that “it will go away on its own” I left it. Then over a period of a month my sight drastically decreased, I became deaf in one ear, was throwing up everything I ate and was in the most awful pain. This was something that wouldn’t just go away and I finally told my mother.

I saw an ophthalmologist who discovered my optic nerves were badly swollen. Having always been faithful with my research I already knew what this could mean before he gently told me I would need an MRI to see if there was a brain tumor. The other possibility was fluid on the brain. We had to wait a week for my MRI appointment. My mother and sister were devastated. My Dad hid in his office for the week. I was calm- I didn’t feel anything, except the slight and sick humor that God, having seen my soul die in my breakdown in America, had finally decided to put me out of my misery. How selfish it was thinking like that. Of course there were the usual thoughts of what legacy I would leave behind if I had to die in a few months.

The day of the test came and all the calm I had evaporated when I saw the tiny hole where my head would go to conduct an MRI. The nurse was kind enough to give me a “magic” injection. There was no tumor or lesions on my brain. My family was relieved but that was short lived because in the days that followed, I was diagnosed with Benign Intracranial Hypertension. It is a disease that causes a massive amount of fluid to collect on the brain. They don’t know what causes it and there is no cure. They can manage the symptoms with a drug called Diamox and….regular therapeutic lumbar punctures or spinal taps to drain the fluid off the brain. Not only that- we were told the damage to my eyesight and hearing could be permanent.

I have had four lumbar punctures in total. I will never forget my first one- a psychiatry student could not get the fluid t to drain landed and up poking my spinal column four times before someone took over afterwards I was in so much pain I could barely breathe. The drug Diamox- which is also used for altitude sickness had the most horrible side effects. I could sleep for 18 hours a day and when awake was nothing else but a zombie. I had constant pins and needles in my hands and feet, it alterated my taste- Coke tasted like brandy!!. And always, always there was the never ending pain sometimes dehumanizing. I was confined to my house and loneliness enveloped me like a blanket.

In April this year I told my doctors that I had volunteered for the 2010 Soccer World Cup. They had already advised me against working and again advised me that doing the World Cup would be crazy. It had been a long time since I felt so stubborn and determined and I decided I was going to volunteer- even if I had to do it sitting down…or lying down. We were trying some knew drug combinations and I had actually started feeling better so I decided to have faith that it was going to work. The World Cup was hard, exhausting but ABSOLUTELY amazing- it turned out to be one of the best things I’ve ever did. I have made friends and memories that will last a lifetime.

That ended nearly a month ago and last night was when I had my “epiphany”. I was cooking my Dad his birthday dinner and I started thinking about where I was this time last year. On my Dad’s birthday last year I had also cooked him a birthday dinner, but messed it up badly. It was right before my appointment with the ophthalmologist and I was at my worst. My sight was so bad I couldn’t see what I was doing. I couldn’t hear my grandmother calling for me. I was nauseous and I hurt so badly that I had to sit down every few minutes. But last night while again, cooking his birthday dinner, I realized that my sight was more than perfect, most of my hearing had been restored and I was absolutely pain free. I walked outside and saw the stars and I could hear the farm labourers laughing as they walked home for the night. I could see AND hear when the frying pan was burning

The last few days I had been reading bible stories from the Old Testament in my mother’s application bible. Most of these stories used to annoy me senseless in the infantile versions they were told in Sunday school. But the application bible has put them in a completely new light. Beautiful stories full of adventure, miracles and love that have been mysteriously renewed me and given me strength. If you read through this blog you’ll see that I’m a “Doubting Thomas” faith is a daily battle for me. I can go from believing God is there (but a big mystery), to believing that “something” is there but not sure what it is (agnostic ), to not believing in God or anything at all (atheist) and then back to believing again. I have tried to stop this cycle but I don’t know how.

Reading these stories I believe lead to my “light-bulb-Oprah” moment while standing at the stove. My light bulb moment: Without really realizing it, I had climbed a mountain- I was staring into the valley where I once was with a debilitating illness in front of me. An illness that nearly robbed me of my ability to see and hear. I hadn’t noticed because it happened so slowly.

I hope I am making sense here. But I am profoundly grateful for that experience. It has given me hope that over time, maybe without me even noticing it my battle with depression will be drawing to a close. Slowly everyday small steps are taken until one glorious day I’ll suddenly be staring into a valley that was my depression and realize that I am free.


  1. I want to be free too. That was beautifully put and I understand it so well. Someday I hope to be free. The atheist.agnostic split gets me as well.

  2. It is often amazing the amount of pain someone can endure and still not lose sight of his or her dreams. I am glad that although you endured some rough blows in life that you still pursued your dream. That is what I plan to do. I want to be published someday. I am bipolar1 with major depression/anxiety and an addict. I am a survivor and so are you. Life either goes on despite your shortcomings or it doesn't. Despite being suicidal many times in life and almost dying as a result of an OD, I chose life. I fight. So do you. Keep fighting.

  3. Every single time I read one of your posts the first word that I always want to start each comment with is "wow!"... which is quite redundant I know - but everything you write makes my jaw drop - everything you have been through and continue to go through. You are so brave in so many ways - in dealing with these illnesses and in SHARING such a personal struggle... you are truly inspiring to read - I hope you know that.

    Your diagnosis was such a double-edged sword - on the one hand it wasn't a tumor which was a huge relief, but on the other hand it is an illness with no cure. However, there is treatment and you can go on living a full life (granted - while being treated for BIH constantly).

    I felt for you when I read that you had a STUDENT doing the lumbar procedure on you...and the number of times it took her to get it right!!!! Just the thought of someone sticking a needle in my back gives me the chills - let alone having someone who is LEARNING how to do it and doing it over and over and over! You are so strong!

    I'm so happy to hear that your sight has been restored and you are feeling better (although I know dealing with illnesses causes ups and downs - why wouldn't it?)

    Another "wow" I wanted to comment on (well - there's a LOT I want to comment on, but then you'd be reading a BOOK :) is your experience during the World Cup - HOW EXCITING!!! To be a part of something so amazing. I'm glad you did it (despite your doctors doubts - we know our own strength better than our doctors sometimes) and this was good for your health in so many other ways! Watching the world cup was very exciting and reading that you got to volunteer was very cool.

    I know that feeling of being part of something so huge... my own personal moment was being a part of our presidential election two years ago. Normally I don't like to talk about politics, but this had a huge impact on me. When Barack Obama announced his bid for the presidency I was so excited - even though (at the time) he had little to no chance of winning - that didn't deter me at all. For the first time in my life I worked on a political campaign...something I NEVER thought in a MILLION years I would ever do - but I believed in him so strongly that I felt it was so right... I was able to meet him twice - once while he was a still a candidate (and I was volunteering at the event where he came to speak) and then again when he was president and came to our town again. I was able to be a White House Staff Volunteer and work "behind the scenes" and work with his OWN staff - and then meet him again as OUR PRESIDENT. It was UNREAL - and it did a lot for my depression - just as I'm sure volunteering at the World Cup did for yours! To be a part of something so huge is so ... so ... AMAZING! (for lack of a better word!!!)

    I truly enjoy reading about your own journey through life - you really have a gift of being able to tell your story in such a way that gets your feelings off your chest and yet inspires at the same time.

    You are an inspiration Stephi!!! :)


  4. Thanks Christine, sounds like you are my number 1 fan hehe!

    When I first started writing this blog I didn't know how blogging worked and I thought that a whole lot of people were going to read it. When I didn't get any comments at first I was like, whaaaaaa!!. But my attitude now is that I am writing for myself and if someone comes along and does read I hope they at least learn more about mental illness or that someone with mental illness will not feel so alone.

    Yep that hospital is tough- most "upper class" people are terrified of that place. But I am thankful because I already have 100 times more than millions of people on this African continent.

    The world cup was incredible and I loved every minute of it. It had been a six year journey for me that started with me jumping up and down in my lounge after hearing that South Africa had won the bid in 2004. I struggled with both BIH and depression while working at the world cup, but the blessing of being there was so great that I overcame it.

    How amazing that you worked on Obama's campaign!- by the way, I was born in the US but grew up in SA so I'm actually half- american. I was behind Obama when he was still governer. How incredible that you actually met him!

    Anyway I'm glad that you like my blog and I hope what I write will continue to inspire you in the future.

    BTW..The US is bidding for both the 2018 and 2022 soccer world cup! :)

  5. Yeah, ha! Sorry - don't mean to be creepy or anything!!!! It's just been so interesting to me - this whole "blog world" and I'm just now discovering it... there are so many stories out there...and a lot (I find) aren't worth reading, but then you come along ones that ARE worth reading (like yours)... :)

    Since I just started my own blog I too had/have the same feelings - that even though I was writing for me, I also wanting to connect with others - and it bums me out sometimes when I don't hear back, but in truth - even if no one comments on something they may be reading it (without us knowing) and it's helping them... after all we discuss topics that some people are still afraid to open up about.

    As for the world cup coming to the US - ahhh - probably won't happen - just like we lost the Olympics!!