For those with health problems support is one of the greatest gifts we can receive.
The weekend just passed saw the Northwest Walk/Run for Epilepsy take place. I am proud to say I was part of it. I didn’t organize a team to walk with, I had just signed up to support the event in my own way. I didn’t have purple to wear I was simply helping out with the refreshments. However, as the morning went on it became an encounter that I hadn’t prepared myself for.
I found myself just looking and looking at all the people. They were all so individual and the majority are battling the impact of epilepsy upon their lives. It’s not often that I don’t have much to say but this was one of those occasions! So many people dressed up in fun purple outfits representing their loved ones and were jovial as I was introduced to them. It was when I uttered the words out loud to someone that I realized I had never been in a place where there were so many people with epilepsy. This wasn’t met with any response at all and I was left wondering whether what I had said was appropriate.
I’m not ashamed to say that I found the event overwhelming.
It has sadly taken so many years to accept my condition and still that remains a new concept to me. Saturday really brought that home with the unexpected reaction and emotions I felt. Although I’ve come a long way I’m not quite at the finish line. Acceptance that it has affected many areas of my life will be a life-long mission. At work, I would fiercely defy that epilepsy interfered with my daily tasks. I was lucky that I had the utmost support from my colleagues and boss. The truth is, whilst of course I remained very able it was silently shadowed by a lack of concentration, memory loss and absence seizures leaving empty holes at regular intervals throughout my day.
The process of beginning this blog with the other creations that go hand in hand has taken a great deal of courage. However, to share my experiences warts and all with those that follow my journey is somewhat cathartic. Most importantly, I hope people reading this who suffer with a condition be it epilepsy or otherwise will be able to relate and feel supported through my written voice.
The walk commenced with a speech from a variety of sources related to the foundation. I was slightly saddened and disappointed (I’m sure I was alone here when I felt this!), that in one speech it was said that seizures were absolutely hated. I understand where that would originate because they are by no means pleasant. Given the opportunity we would all be without them; however, with the venom with which it was spat demonstrated negativity in a situation where we need to muster as much positive energy as we can to keep spirits up. There is much research being undertaken and it’s wonderful to see the money raised being dedicated to moving forward with this, but as they say, ‘Rome wasn’t built in a day’.
There wasn’t anything in the speeches about how blessed we all are. Although life is hard at times and quality of life can diminish, with seizure activity it comes with an appreciation and relief when you are even one day free. That’s where I got lost as there wasn’t anything mentioned about that. I can’t help but refer back to the situation in Cameroon. It is much easier to get care here and of course it doesn’t lessen the impact of seizures. However, there are many options that we have to experiment with to potentially improve our condition. Brain surgery, different medications, neurologists to visit, vagus nerve stimulation, EEG’s, MRI’s and other technical methods are used to detect problems. Then there are alternative avenues to pursue: lifestyle changes, nutrition, complimentary or alternative therapies and financial benefits to name but a few.
I did end up completing the walk by myself contrary to my initial plan. It was a time to reflect upon my own journey, the journey of others and how epilepsy has shaped their lives. I took the time to dedicate the walk to myself, my family members and to those whose lives have been cut short because of it. It felt rejuvenating to walk alone as I began thinking about the steps I need to take to reach the place where peace can be found.
It took me a long time to attend a support group with the knowledge that by opening up it would benefit me. There is nothing like being surrounded by people who know what you’re going through. Whatever condition you live with, to feel supported and to interact with people who can relate to your emotional challenges is a feeling that’s absolutely priceless.