Epilepsy and Hope renewed…

I got a letter from the hospital today. When I saw the envelope I didn’t want to open it because I thought it was just going to be the written version of last week’s session. It wasn’t. It was an appointment with the person at the hospital who can perhaps help me find the link between my epilepsy and my sleeping problems! Yay!

Year-1. Renewed hope. A tweak in attitude. The continued support of those around me. New beginnings. In order to have the rainbow, you need to have the rain. I can’t quite remember who said that (memory issues are still abundant!), but I have the feeling it was Dolly Parton! Feel free to correct me if I’m wrong! The point being that, to truly appreciate joy, experience wonder, or find peace, then having endured the opposite is what makes that possible. Of course, you can feel all of those things anyway, but the experience is sweeter, sharper, and more potent if you’ve experienced the opposite. So, should we be actively looking for pain and problems??

I believe, in the course of living life, pain and problems present themselves naturally as time passes. How we choose to deal with the issues is up to the individual. That said, our own actions occasionally (often) exacerbate the issues that knock on the door to our life. I haven’t always viewed my life, life itself, that way. It’s often easier to push responsibility onto another, either actively or passively, rather than shoulder the consequences or confront the situation. I know I’ve done that in the past. I know there are certain situations in my present that I’m struggling to confront for fear of the consequences. But, this is Year-1. The past is gone, the future isn’t promised and all there is, is the present.

When I think about my childhood, I think about my Gran. Ever-giving. My brother and I would spend a few weeks in the summer with her during school holidays. She took us to Portobello beach, the zoo, the castle and gave us endless stories to laugh about well into our adulthood. She would knit us jerseys that implied she thought we had pea-sized heads and arms like an orangutan! We often talk about Wee-Eenie. She was hospitalised after a stroke in 1998. My brother and I visited her every single day the entire time she was in hospital. He would feed her, I would make sure she always had clean clothes to wear and would read to her. Towards the end, she didn’t really know who we were. There was not one day that one or other of us, or both of us were not there. It wasn’t easy. She had provided for us unconditionally; I had lived with her when I first moved to Scotland. It was the very least we could do. The nurses were amazing in the hospital, they got to know us and they pretty much allowed us to come and go as we pleased. I’m grateful for that. Her main source of nourishment was given to her through a tube. The day came when the decision had to be made as to whether food should be withdrawn. My Dad made the decision that it should be, over the phone with the hospital, and my brother and I went together to formally request that the feeding tubes be withdrawn. The hospital had assured my dad that there would be someone at the hospital, a nurse or doctor that we knew, who would be there to see us and who would explain the procedures. That’s not quite what happened.

When we arrived on the ward, there was not one nurse or doctor there who either of us had seen before. We had to explain who we were and why we were there at that time. We stood next to my Gran’s bed. Without a word of warning, the nurse pulled the tubes out of my Gran and just walked away. My brother said to me “I can’t be here” and bolted from the hospital. He never went back. We both felt like we killed her. I stayed, but I understand why he didn’t. That was a Tuesday evening. She wasn’t lucid very often, but she did have moments. She said to me one evening, that she would see her birthday, “but I’ll not see past it”. The following Saturday at 5.30am the hospital phoned me to say she’d had a bad night and I went straight to the hospital. Wee-Eenie died on October 17th 1998. Her 85th Birthday.

I often wonder if my Gran is looking down on me and is proud of what she sees. It is my Gran’s side of the family that possess the epilepsy gene. One of my cousins had a seizure when she was a teenager, but nothing since and 1 episode is not enough to be classified as epilepsy. To my knowledge, I’m the only one of my family that has/is displaying the telltale signs of epilepsy. I’m the special one…When I reflect on the time I knew my Gran, the lady I remember was one with a great sense of humour, a great giggle, a ready smile and a generous heart. The memories of her make my soul smile.

My Year-1 is going very well so far. I’ve made some tweaks. I feel hope. I feel a sense of connection to my present that has been absent a long time. I feel joy in my heart. We are each of us responsible for our own happiness. It is not the job of someone else to make me happy. It is up to me to actively seek out that which brings me joy and peace. I know what those things/people are likely to be because I’ve experienced the opposite. The pain and struggle of the past, will make the joy of the present and the plans for a future not promised, sweeter.

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