My fiancè’s struggle with chiari malformation: My journey too

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Before I begin, I need to say a couple of things first, disclaimers of sorts. First, thanks Chipo for giving me space on your blog. I have been an avid reader since day naught. I’m delighted and humbled to be given space to contribute.

Second, writing in English like this is foreign. I’m now used to communicating, nay, expressing my feelings better in vernacular. Don’t get me wrong, I can communicate in English, I just don’t like it. There is something about writing in Shona that just brings certain words alive. I digress. So, if I don’t make sense, do forgive me, English isn’t my first language. This post has been a long time coming. After I read your post about your journey with Chiari Malformation and syringomyelia (See post here), I was moved, ok fine, I cried (a little). What struck me was how honest you had been with your struggle and how you had been trying to manage the condition. I had been a part of the journey with you, but just reading about it made me realise that one can be a part of something but still be oblivious of the same thing. I’m not one for talking about personal stuff, moreso on cyberspace, but perhaps someone will read and benefit, so here is my journey alongside you:

How it started

I remember it started off as a common cold. I remember that you were buying a lot of oranges (for Vitamin C), Med-lemon, as it is supposed to be the go to cure for the cold. 3 weeks after the first symptoms, you were still sick. When you went to the doctor and he said that it was pneumonia, I got a bit of a shock, as pneumonia is usually a pre-cursor to other diseases. Yet I didn’t worry. The doctor assured us that all you needed to do was to take your antibiotics and you would be fine. I was at ease. Then you started to feel pain in your arm. I would watch you writhe in pain when I or someone else would shake your hand. No longer where you able to arm wrestle with me, or type on a computer for extended periods. You started withdrawing from hanging out with friends. We had to cut down on doing things that we loved, like playing pool (ok fine, I love playing pool, you just went because you enjoyed my company!). I was still at ease.

Thoracic Outlet Syndrome

Then the other doctor said you had Thoracic Outlet syndrome. I had no idea that such a disease existed. I tried to read articles on it but couldn’t make sense of what the disease was. All I knew was that you were in pain, always. I wasn’t fine anymore. I could see you trying to put a brave face to do things that would cause you pain. I could see you trying to lead a ‘normal’ life in spite of having a horrendously painful arm. I remember the day you went for physiotherapy and you swore never to go back again as the guy was literally wrestling with your arm. I tried to help you as much as I could then by doing whatever thing was most difficult for you, but it wasn’t enough.

Chiari diagnosis

Just when I thought I had heard all the diseases with the funny names, in came Arnold Chiari malformation. There were three things that I got from the new diagnosis: 1. You had a cyst in your spine. 2. Your brain was putting pressure on your skull. 3. You needed to get a piece of your skull removed.

To be honest, I really didn’t know what to do. Why was God doing this to me, I thought to myself. What had I done wrong? It seemed to me that your disease was a punishment of sorts for something that I had done. Herein lies the problem. I took you out of the picture and began focusing on myself. I forgot for a while what you were going through and focused on myself. I thought to myself that this isn’t something that I signed up for. Why cant we have ‘normal’ couple problems, like having arguments about whether or not I should shave, or whether or not you think buying an Xbox is a worthy investment. I certainly didn’t sign up for all these other things. Thinking like this made me realise what an ass I was being. I couldn’t believe that I was thinking like this. Does one love someone just because they aren’t sick? Surely can you only love someone in the good times and when the going gets tough you think of bolting? If that was love, then I certainly didn’t want it. I had always prayed and hoped for someone to love me through thick and thin. I thought to myself that this was the opportunity to show my love, that no matter what you were going through, you weren’t alone. I was with you.

I was with you the day you went into surgery. In fact, I had a small procedure of my own that same day, in the same hospital, but all I could do was think of you. I was thinking whether or not you were comfortable. Whether or not you were scared but didn’t have me to hold your hand. I remember when my procedure was done and I rushed to your ward and I saw you sedated with machines hooked up to your body. All I could do was watch as I was powerless to help. If the operation was what it took to make you better, so be it. You wouldn’t have to walk alone. From your experience with chronic pain, I saw a different side of you that I hadn’t seen before. I saw a brave girl. In spite of the seemingly insurmountable challenges, you held your head high. You would face the world everyday with renewed verve. I saw an optimistic girl. Yes today you were in pain, but tomorrow you may not. I was inspired.

Lessons from being a part of this journey:

  1. You can be a part of someone’s story, yet you don’t know much about what they are going through. It is important to check up on each other.
  2. Big boys do cry. There’s no point in trying to remain calm when things aren’t fine. It’s ok to admit to yourself that you are not fine. It’s ok to let out a cry or two to get all the feelings and emotions out.
  3. Get support from other people. Life is tough as it is. You cant go at it alone, get a group of ‘cheer leaders’ around you to egg you on.
  4. Don’t wallow and do nothing. If you are in difficult situations, do your best to find solutions.

 

“Life isn’t about waiting for the storm to pass, it’s about learning how to dance in the rain” – Vivian Greene

In the immortal words of my childhood hero Porky Pig, “that’s all folks!”

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