This is some of what I wrote about Mis in If Women Rose Rooted:Sometimes, madness seems like the only possible response to the insanity of the civilised world; sometimes, holding ourselves together is not an option, and the only way forwards is to allow ourselves to fall apart. As the story of Mis shows, that madness can represent an extreme form of initiation, a trigger for profound transformation.
During the course of her revival, her towering spirit, encaged in a frail body could not fight and eventually she gave in. It appears that during the surgery, her diaphragm may have got punctured. She developed septicemia, pneumonia, that deteriorated into acute respiratory distress syndrome (ARDS) and brain stroke.How did it happen, especially to a person who was the fittest amongst us all; who was the anchor and strength of our family; who was deeply loved and respected by whoever she came in contact with – we have absolutely no clue, only a few guesses.While she fought for her life, I wrote to the World ARDS Foundation (firstname.lastname@example.org) in sheer desperation, whose president, Eileen Rubin (email@example.com) was a survivor and had been on both sides of the bed to come back and devote the rest of her life, helping other ARDS patients. She explained that the Foundation does not offer legal advice (as it varies from one country’s jurisdiction to another) but they can initiate group prayers for my mom.
To those who do not completely understand and think we’re making excuses, please know that recovery can take YEARS — and may never be full and complete. Next time you’re tempted to imply that we’re making excuses, understand that most survivors will be left with a combination of these symptoms:Short-term memory lossTrouble focusing our attentionNeuro-fatigue (running out of energy)Dizziness and balance issuesCognitive deficits (processing things slower than before)Aphasia (trouble recalling or understanding words)Not being able to handle overstimulation (lots of people and noise)Anxiety about the simplest thingsDepressionChronic painIn short, we are NOT making excuses, we are simply doing the best we can with what we have been given. All of us want to get back to work, back to a meaningful life, back to the way we were before our injury. It’s a long, lonely road, which is not made easier by other people’s ignorance. Remember, compassion makes the world go around.I have a brain injury, what’s YOUR excuse?!
Feeling the weight of it all, this past week I Googled “brain injury and suicide.” No, I have no intention of cashing in my chips. Rather, I was more than a bit curious about how many others died from traumatic brain injury long after the initial injury. The numbers were staggering.
My new life these days is defined by living close to complete transparency. I share more than most ever will, knowing that my own complete disclosure will help others to feel less alone and less isolated. As my wife Sarah has shared since life forever changed in November of 2010, “the curse will become a blessing.”The process of evolving from one person to another almost completely different person is often hard to describe to those who have not lived it. But it is a process. There will be good days, and there will be tough days. On the tough days, it helps to remind myself that I have a 100% track record of success in making it through the tougher days.
How much is known about the level of injury the brain can recover from? Over what time period does the brain adapt to an injury?A lot is known about brain plasticity immediately after an injury. Like any other injury to the body, after an initial negative reaction to the injury, the brain goes through a massive healing process, where the brain tries to repair itself after the injury. Research tells us exactly what kinds of repair processes occur hours, days and weeks after the injury.What is not well understood is how recovery continues to occur in the long term. So, there is a lot research showing that the brain is plastic, and undergoes recovery even months after the brain damage, but what promotes such recovery and what hinders such recovery is not well understood.It is well understood that some rehabilitative training promotes brain injury and most of the current research is focused on this topic.
For people battling chronic disease, sleep is a complicated thing. On one hand, we often don’t get much of it on an average basis. Or, at least, not quality sleep. On the other hand, there are folks with conditions like depression, or those on medications that cause drowsiness, who sleep a lot. Our relationship with sleep is one where we regularly swap between not getting enough and getting what many people call “too much.”I can’t count the number of times people tell me I’m lazy because I sleep 10 hours a night. Or the number of times people claim I’m lucky that I “get to sleep so much.” I understand that being able to sleep 10 hours a night might seem like a wild fantasy to many folks who only get to “sleep in” maybe a day or two a week, but for us, it’s necessary.