It’s hard to believe how much time has passed… or perhaps the amazing part is how fast it goes by… maybe both. 

In any case, the approaching Christmas holiday is an easy time to get lost in “to do”s. For me, it’s a special year for several reasons. It has been a long time since I have felt up to the preparation for this Big Event of Christmas. In 2009, with the passing of my best friend – my Mother, I lost a lot of steam for the family traditions and cooking that would have characterized my preparations with my Mom. That was a hard year without her, the first year. Then in 2010, I had only just been released from the hospitals after my stroke and I was barely able to maintain my hygiene and my daily tasks. So that Christmas was certainly a challenge.

This year, I am able to cope with some of my old traditions so I have sent out the Christmas letter (thanks largely to the pressure and encouragement from several friends and family members). I also baked again for the first Christmas in three years. This year the motivation was to take some home baking to church for our children’s school Advent mass last week. My children treated me like a hero and were proudly munching on “the best cookies in the world.”

My husband still does have to carry an unbalanced shared task list as he is our family’s only driver so I contribute the lists of things to purchase (groceries, gifts, household stock) and he runs around the city picking kids up, dropping kids off and shopping… in fact, the shopping this year all by himself took him to the point of wearing out his card! That’s a sign for sure!

My health remains a challenge although I am finding my way to take advantage of my abilities and to respect my disabilities. I haven’t had a social engagement with friends all year. I miss my friends but I count on love and understanding for friends to be comfortable with my new situation. Visual and auditory stimulation are still a challenge and they still create fear and that results in my heart beating faster as I deal with the stress of the noises and people and my vocabulary challenges (harder to word find when I am in a social setting so I still stutter and have a cadence to my speaking that is not natural).

As for my heart beating faster, who cares? Right? Well for me it’s an issue. As you know, I still have a clot in my brain and my clot is on the drainage at the back of my head where the brain releases its “used” blood supply. We had been hoping, medically, that the clot would dissolve in the first months after my stroke and when a period of time has passed without change, it becomes more of a permanent situation. So… with only one drain instead of two, blood pressure etc have an effect. They cause me to get headaches which, I have learned, are a warning sign. Since my stroke I have had one suspected TIA and three sessions with seizures (most recently in late November).

I was told by a doctor that my brain damage (in addition to the clot) is largely permanent. Let me first say that the human brain celebrates “plasticity” (a term meant to describe how our mind can adapt and rewire and morph to recover from trauma). My brain’s plasiticity is why I have retained verbal skills at all and why I no longer cry in the car from things moving past the windows. But there was scar tissue that formed where they completed a successful brain surgery and there was some other damage from the flood of blood in my brain – these two situations have created a scenario where rapid messages (thoughts and processes) move in our brains like electric pulses for me, just like for you. Unfortunately with some of the scar tissue and damaged parts the electric pulses get misdirected, misfire, or simply get all screwed up and short circuit causing a seizure.

The last two episodes were both due to over stimulation – in both cases I was working on my computer and had recently attempted social gatherings with family. I was tired from the family gathering (one was a children’s birthday gathering and the other was a dinner with only adults and my kids – nothing huge … but still too much for me). I can feel it coming on. Typically, I am overtired from the event and then, as a seizure approaches I get confused, have trouble reading and feel frustrated because it’s like my engine suddenly starts to run out of gas.

The last seizure was in late-November when I was alone at home with the boys. It was a PD Day for them so they were laughing and playing and a TV was on in the background (I still can’t watch TV) and there was music from a computer. I was trying to do some basic things on my laptop when I started to feel the “signs.” I debated what to do because I didn’t want to alarm the boys but being home alone with them I knew they had to be told that I wasn’t well… just in case.

I walked into the room where two were playing and asked them to just be very quiet because I wasn’t feeling very good. Immediately they started to cry and crowded around me. I was trying very hard to reassure them that I would be fine but I could feel my words slipping and I have no idea what I wound up telling them but the last I remember is seeing my eldest dialling the phone.

Some time later I “woke up” (although I was not unconscious) and my house was full of the usual suspects – paramedics, police, firefighters… The boys had had the good sense to follow our plan and they called 9-1-1, then called a neighbour since they were home alone with me, and they reached their Daddy on his cell phone. Good boys!!!

So I spent the rest of the day and that night at the Civic Hospital. I slept mostly – seizures are physically and mentally exhausting. I was scared (and I still am). Not sure what lies ahead for me but I do know that every morning when I wake up is a good start.
I am posting all of this three days before Christmas to remind you that our massive “to do” list is likely unnecessary. Take some time today and tomorrow and the day after that to talk to your loved ones and to cuddle with your children. Walk your dog, take a bath or do whatever it is that makes you happy.

In this period of Advent, let’s not forget that it is a time of spiritual preparation for the most wonderful gift we could ever have been given some 2000 years ago. So when you are racing around looking for the “perfect” gift – stop and close your eyes and say thank you for all the gifts you have been given – especially the “perfect gift” whose birth we prepare to celebrate this Sunday.

Be well,

Jen