Most of my posts are written about the past, they are reflective, written when I am in an introverted phase of time. They don’t often describe the state of current affairs. Because I still feel like I have a lot of explaining to do about the past. Because in turn that explains why I am the way I am today. I’ve written all these posts, but I still don’t feel like I’ve done it justice. And maybe this writing will help others who are still back in that place, who can’t communicate well and feel alone. I am extremely lucky to have resources and a loving family & partner, I know most with brain injury and chronic illness are not so lucky. The first time I discovered another person’s blog on brain injury, it was revolutionary for me. I hope this does the same.

Years ago, I did not have the language ability or perspective to write the way I do now. When I go to that dark reflective place, I still have raw emotions, intense emotions. My sense of time blurs. Sense of time in general with chronic illness blurs without career or other life milestones. But on a daily basis I don’t feel all of these raw emotions. That would be impossible. I focus on the present moment. It’s too overwhelming to think about the big stuff all the time. I (we) would drown.

Luckily it’s not as hard to stay focused on the present as much as you would think. My brain still isn’t great at multitasking. When I am doing something, it requires 100% of my brain power. So I am forced into mindfulness in a way. Thank god I don’t have to choose. It’s one way my brain has saved me. It’s protecting itself. Recovery is far from linear, but each year I do more and more and the quality of my life improves. The worst is over.

Annie Liontas’ new book Sex with a Brain Injury arrived coincidentally on January 20. You can listen to her on January 9 episode of NPR’s Fresh Air. Some quotes so far…

-“A head injury will take a lot from you. Loud music, perfume, storms, sprinting, pride, but what it takes from your partner is unbearable.”

-“During this time, I hide a lot from my wife, much of my pain.”

-“Back then I must have been especially hard to come home to. Most days she would walk through the door and I’d be in bed, the blue scarf wrapped around my head to keep out the light. No TV, no drinks at a bar, no strolls through the city holding hands. I was too weak for any of that. It was years like this, me in sickness, her in doubt. I remember a fight over a tea bag. I remember days of being jealous of the sick cat. After a decade and a half, we had never really had the opportunity to truly disappoint one another. Now my head injuries had turned us into strangers, me wondering who had roamed into the house, she thinking the house empty until she turned on the lights. It baffled her, why I was not getting better. There was nothing I could say to erase that look on her face. We had become suspect to one another, opposites of who we were when we fell in love, my strength turned into weakness, her kindness into quiet.”

-“Pain, language- the things that make us most human are too often what alienate us, keep us apart.”

-“There is having to explain the failures of your body to those closest to you over and over again, even when you know they won’t understand.”

-“Disability, whatever our gross assumptions and beliefs about it, carries legitimacy, whereas chronic illness, especially when it cannot be seen, raises flags.”

-“Somebody in my family says, ‘Jeez, you act like such an old person now.’ ”

-“Doubt hangs perpetually in the space between belief and disbelief.”

-“Are you sure this isn’t in your head?”

-“My love … I want to be understood.”

-“I begin to doubt all connections, as one does in periods of isolation. I doubt the point of my work, my place in the world- how necessary it is- my own resilience.”

-“The injured self, wanting to be heard, emerges in all kinds of ways. Sometimes temper tantrum, sometimes dirge, sometimes raw memoir, noise from a window, lyricism.”

-“The single gift of these voices in your head- doctor, family, wife- all saying the same thing, is that a little light goes on. You’ve never trusted yourself before, but now, stranded in the interstitial, you’re the one you listen to.”

-“In their living room.. I watched Parker fuss over his new baby… But for the moment I was inside unintelligible, muffled words, somehow both close and far off… I struggled to find any words at all. I fought to hang on to her story of the birth, to appear normal.. My body was vibrating of weakness.. I kept my coat on to hide how much I was sweating… In those days, lying was the binding that kept me from falling apart.. Even now, I do not wonder at the need to lie to these kind friends, good people who would have happily let me rest in a quiet, dark room.”

Thank you, Annie, for putting yourself out there.

Today is the anniversary of my accident. Five years. That’s right FIVE. I don’t have anything incredibly moving or visionary to say, although I thought this date deserved a post. I am still trying to figure out life as a sick person, how to navigate each day, how to navigate my relationships, my emotions, and my desires.

As with many brain injured, I have suffered from an inability to communicate effectively for many years. I did not have the energy to speak up about anything. Sharing my opinion would only take up energy and make me feel sick. So the easiest thing was to keep my mouth shut. I lived purely in survival mode for years. Additionally when you feel bad all the time, you don’t always want to talk about it. So you lie, say you feel fine sometimes. Every day you must do things when you feel bad. So when asked how you are doing, why would you tell the truth? You can’t never do anything, never try to do anything. Sometimes you want to do things when you feel sick and others you don’t. But you certainly can’t explain all this every time. To this day, I still have a limited, finite and very less than average amount of energy. To this day, it’s still sometimes easier not to speak the truth. You learn to go with the flow. Survive. However, this is the lesson of the boy who cried wolf. We all know that communication and trust go hand in hand. If I speak the truth now, who will believe me?

I often think of the past, and I certainly dream in the past, of my life before, when I knew who I was. My identity was defined by what I did on a daily basis, who I spent time with, conversations I had, activities I was passionate about, nonprofits I gave my time to, and certainly not least my career which I gave time and energy. When we think about who we are, usually those are the things that come to mind, how we spend our time. After a catastrophic accident with brain damage, life is defined by looking for answers, trying to find doctors who can help, doing therapies, trying to survive. Life revolves around appointments, conserving energy and trying to take care of ones health. Who am I now? What am I beyond a patient? What is my purpose? At this point, I don’t even know what I want my life to look like if I were healthy. What what I do for work? What would I be passionate about? Do I still care about the things I used to care about? The things I used to love, I am still mostly unable to do (or only in tiny doses). So your brain is like a blank slate, and while I thought about this years ago, how should I fill this plate very intentionally, I am still wondering those things, and haven’t started to fill my plate.

I usually think of my body as quite weak, unable to do the things normal people do in a day. Often being confined to the house, a place of quiet and still with the least amount of stimulation. However, a little over one year ago, I was diagnosed with Lyme disease, and so I have to think of it in the opposite way. I am actually incredibly strong and resilient. Not only has my brain been having to work harder than a healthy person, but on a cellular level my body is in fucking war every minute and every second of the day, fighting off bacteria fuckers that invade all of your systems and your brain and can cause breakdowns in a whole host of of basic bodily functions. So while my immune system is weak, and I can easily get sick, and my white blood cell count is extremely low, my immune system is fighting for its life every god damn day. And my body is working really fucking hard. So actually I am strong. I am a warrior. And I get out of bed every day.

Chronic illness requires the navigation of the fine line of accepting one’s new life and things are different vs remaining hopeful that there is a better future ahead and that recovery is possible. I’ve been doing this for five years, and I still don’t have it figured out. How to plan when health is unpredictable day to day. How to plan with and for those around you. I’ve been labeled as a hypochondriac, been told  by doctors I would never get better, and even those closest around me have not believed I would get better (and some couldn’t tell that there was anything wrong!) So while there are many negative feelings around the fact that’s it’s been five years, taking me from age 33 to almost 39, I must give myself a pat on the back (or one million) for waking up every day- not giving up. Continuing to look for answers and doctors and science that would help me get better, even if I was the only one doing it and the only one who believed it. This was not easy, it was torturous. I don’t know how to put into words. I have don’t how I did it. Harder than any fucking thing else. I am no super human, if I can do it you can. I have retrained my brain, I am getting better, and so can you.

I leave you all you survivors with this note: Don’t forget brain plasticity is real. It’s slow and painful, but it’s real. Prove everyone wrong. FIGHT.

To you caregivers out there: your work is even harder. You have a choice. You don’t get enough credit. I don’t know how you do it either.