My support system post encephalitis
Eleven (11) months have now passed since my huge set-back health wise. It’s been 11 months since a General Anesthetic had for devastating effect to bring my weird wonderful brain 22 months back in time. Bringing my already fragile brain back to the state where it was following a brain infection called meningo-encephalitis aka “e” 2 1/2 year ago. It’s been 11 months of hard work to try to regain, bit by bit, some form of brain capacity. Things aren't picking up as quickly this time around. The second brain insult hasn't been so kind. Although there was some slight improvements in the month or two following the operation, it’s been months of status quo, months of plateau which further translates into months of wondering if this new baseline is eventually going to lift.
We are well surrounded. I say WE because although I’m the one suffering from the most adverse effects triggered by this new brain of mine, I can clearly recognize that it has a huge flow on effect on the people that I love the most.
At the forefront of these flow on effects you find my partner, my rock, my unwavering most ardent supporter. In my eyes, he literally needs to be awarded some sort of superhero title to be putting up with all of this nonsense, with all the ups and downs, with the countless medical appointments, with the numerous disappointments that come with the absence of answers and with all the uncertainty that lies ahead of us. When I wonder why he keeps putting up with all of this, why he isn’t tempted to run away, he is the first to remind me that WE work as a team, that WE are in this together, that WE are going to make the most of this sticky situation and that he isn’t going anywhere. I believe him, he hasn’t failed me once and that lightens the list of my worries. We may not be married, but he is a man who knows the value of the word “committed”. You can say that should you be put into a similar situation, that your loved one would also step up, but I have my doubts on that one. I know I’ve truly got myself a catch, our family super person. Since this whole ordeal, there hasn’t been a day where I haven’t been absolutely grateful to have come across this wonderful man in a Montreal bar 14 years ago. He’s a man of few words, but actions will always speak louder than words. In case I don’t say it often enough, I love you to piece my dear Greg. You are a standing example for our 3 little men.
Which brings me to our next WE...the boys, our 3 precious little human beings which are growing and have had to grow up way too fast. Where to start, you guys are the reason why it is worth trying harder everyday, the reason why I take the downs on the chin and try to turn them into positive, the reason why I work so hard to keep my mental health in check. In reading the following some might think that I’m being a bit dramatic, but I think that those who have overcome adversity, a trauma or an important challenge will relate...you are the reason why I get out of bed everyday, why I haven’t made the decision to call it quit. You are growing into fine young men and above everything (ill health and all) I so desperately want to see and be there to tell you how proud of you I am as you keep venturing through your own life journeys. WE includes a myriad of health specialists who although often puzzled, keep supporting us by sharing their knowledge, giving us precious advice, working alongside us through the various step of rehabilitation, who keep investigating to get a better understanding of what this weird wonderful brain of mine is up to, who listen to us and help us deal with all the changes “e” has triggered along the way. It took a while to find all those great persons, it required a lot of efforts and I'll also say nagging, but we are there now and they are truly a wonderful support. A few more tests are currently in the pipeline and we hope dearly that they help us better navigate our way through this ongoing recovery.
WE is also the support of a fantastic employer who has chosen to stand by us, who offers the flexibility required for the brain to cope with a return to work plan, who has adapted some of the tasks to cater for some of the ongoing limitations, who by keeping me employed allows me to keep stimulating my brain, who enables me to retain some level of independence and finally allows me to retain that very important feeling of fulfillment that goes hand in hand with completing tasks that bring value to an organisation. One can feel valued in many different ways and for me work has always been something that I find very rewarding. I am very grateful to have such an understanding employer, I realize that not all employers would manage this situation in the same manner and I feel very privileged.
WE is also a close network i.e. extended family and friends. When you get ill, you always have people that step up or propose to help in various ways. The thing is with chronic illness or recoveries such as brain injury that take place over a number of years, help is often required long after the initial onset of an illness. Not everyone realize or fully understand that. With brain injuries, you have the additional challenge that physically, you often look perfectly fine. Survivors often talk of brain injuries as being hidden disability because it’s subtle stuff that tends to resurface on a daily basis. The cognitive capacities that you have lost are not always visible. You haven’t lost an arm, you haven’t lost all your hair, you haven't got a cast or may not have a wheelchair to remind people that your brain is still very fragile and that it can’t operate like it used to be.
As the months/years go by, you find out pretty quickly who are those dear people that are there to support you for the long run. When people ask how they can support, I often say don’t underestimate the power of a text message, a phone call, an email, an impromptu visit, the offer of sharing a cup of tea, of joining in on a walk and so on. A chronic illness comes with ups and downs on a daily basis and sometimes both in the same hour. Having someone check in can make or break your day and checking-in at the right time is invaluable. You don’t expect people to check in everyday, let’s get real, most lead a busy life, but we have seen a multitude of people rise to the occasion, sometimes those you’d lest expect, sometimes when you’d lest expect it. Through being ill, I’ve formed a new network of friendship. It’s not a network built around catching up on a weekly basis, but one built around a network of people who genuinely care and understand the position we have been put in. To my absolute delight, the list of those people is much longer than what I would have anticipated 2 1/2 years on. I am probably yet to voice to all those people how important their support has been over the years and if I haven’t yet and that you have been there for us, please know that we appreciate everyone’s support whatever shape or form this may have taken. You are not forgotten, you have a special place in our hearts. It’s a long ongoing journey but WE are well surrounded. Life doesn’t always go according to plan, but we are grateful for all those good human beings that were put on our path. I’m still not one to believe that everything happens for a reason, but I do believe that if you think and look hard enough that you can find some positive even with the most dire situation...perhaps being so well surrounded is part of the silver lining that everyone keeps talking about.
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