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.