Rose Coloured Glasses

March is Epilepsy Awareness Month and time for an update on our guy. I am thrilled to announce he has been seizure free for 3 years and is now off medication as the result of two “twitch-free” EEGs a year apart. This is fabulous for him after so many years of enduring numerous seizure types and lethal medication to control them. I am happy to announce he is fine now.

REALLY?

When friends and relatives learn that our guy is seizure free/off meds they tell us all we must be so relieved now that he’s better. It’s easy to look at a seizure disorder minus the seizures with rose coloured glasses. Human nature wants everything to be hunky-dory, but this isn’t a fairy tale and it doesn’t have the promise of a fairy tale ending. Because he no longer has alarming visible seizures, others can’t see the residual damage and daily challenges our guy bravely faces.

A syndrome is a combination of symptoms and signs that occur together and characterize a particular abnormality and so it is with myoclonic astatic epilepsy or Doose Syndrome (our guy’s specific albatross.) It consists of numerous and various types of seizures but it also brings with it a number of afflictions secondary to the seizures, some of which may disappear over time (as the seizures currently have) and some of which will be with him forever. That’s the best possible scenario, the worst being a return to seizures and a new struggle to control them, which happens in about 20% of cases.

We walk on eggshells and are often considered pessimistic/overly dramatic. The reality is, our guy is a thoughtful, engaged ten-year-old who participates enthusiastically in daily activities but often falls asleep before dinner because he’s exhausted with trying to keep up with a normal school-day routine. He’s an optimist, willing to give everything a shot but his muscles are weak and he tires easily. Some other components of the syndrome include his tremor and sensory issues. He lacks the ability to focus, has poor impulse control, and difficulty with emotional regulation – a result of impaired executive functioning. Add to that, a global learning disability and a developmental coordination disorder which causes severe fine and gross motor delay and you have an inside view of our outwardly fine little boy. Our smart wonderful guy who once tested as gifted is now challenged.

Years ago, when our guy first became very ill, I had a dream. I was sitting on a beautiful beach with golden sand gazing at a horizon of peaceful ocean. I was holding our guy, pointing at the waves and seagulls. He seemed happy but could no longer speak. Then, on the waves, life rafts appeared but they were drifting away from us. We watched them and gradually the people that we loved began to materialize in the boats. They all floated away – our guy’s parents and brothers, Grandpa, aunties and uncles. Soon they disappeared and we were alone on the beach. I awoke terrified, knowing that there was no life boat for our guy and terrified that I wouldn’t be able to stay with him. The dream haunts me to this day.

Our guy has a small but dedicated group of people who surround him with love, encourage his efforts and cheer his accomplishments. He loves swimming, Taekwondo, cooking and video games and in the past year has become a very good reader. He was gone for a couple of years back then, disappeared, missing in action. We like to think he is slowly catching up, that he will get to where he’s meant to be but it will just take a little longer to get there. Reality is harsh but our guy’s family is allowed rose coloured glasses too.

 

For further information www.epilepsy.ca and www.epilepsycalgary.com 

Water-bearer

Amazingness is relative to the situation and in this day of instant everything, it is sometimes difficult to maintain a perspective on what is really important but four years ago, while visiting my husband in the hospital, I met a lady who altered my view of life.

While at the hospital, we often escaped my husband’s tiny space and sat on one of the benches provided for hall-walkers. Mostly we discussed the state of the health care system, the dinginess of the hospital and the friendly and efficient but overworked staff.

One day, we heard a woman humming as she approached our bench. Dressed in hospital scrubs, she was pushing a cart loaded with bottled water which she was distributing to patients. Friendly and enthusiastic, she radiated joy.  “How are you today? Are you thirsty? Would you like a bottle of water?”

We’re fine, no thanks, we said, but she stopped to talk. “Do you know,” she said, in her sing-song accent, “that I have the very most important job in the hospital? I am the water-bearer. In my country there is no life without water and the person who brings the water is the most important person in the village. Where I come from, we spend our lifetime searching for it. I must go now and take the water to these people.” In a sweeping movement, her arm indicated the rooms in the hallway in front of her and, continuing to hum, off she went.

The whole conversation took about one minute but it had a huge impact on me. While I spent my time thinking about what I didn’t like or didn’t have, she was content with her life and what she could give back. Her service to others fed her spirit and the pleasure it gave her shone through her eyes and landed on all who met her. I envied her selflessness and the peace she conveyed.

While I was complaining, this lady was doing the most important job in the world and was happily at peace with her ability to perform a service for others – a lesson in how to bloom where you are planted and in the reward of giving to others.

                               from airdrielife magazine (Spring 2015 issue)