I recently read the book The Invisible Kingdom by Meghan O’Rourke. I read it in 24 hours, could not put it down. Meghan weaves her personal struggle of chronic illness with information on our healthcare system, medicine, science, etc. With every page I could not help thinking how much her own struggles chronicled by own. Plus she had written the book on chronic illness that I want to one day write on brain injury.

Fatigue, brain fog, exhaustion, physical pain, and digestive problems throughout our twenties and thirties.  Intense itching, night sweats, constipation, memory problems, insomnia, electric shocks in legs. Check, check, check, same with me. “You are tired a lot for someone so young,” we were both told. I went to doctors who told me to drink me to drink more water, and other people dismissed me as an hypochondriac. Western medicine was simply not adequate to problem solve our list of symptoms. When Meghan finally went to an integrative doctor, she found out she had Epstein-Barre virus (chronic “mono”nucleus), thyroid problems, MTHFR mutation (disabling the body from methylating folate), inflammation, too much of the bacterium Candida albicans- check, check, check, check. Me too.

Grief came and went, but was always present. Along with anxiety and depression from our chronic health problems. Was our mental and emotional decline causing further physical decline? Or was it simply the opposite. We both wanted kids, but knew our bodies were prioritizing survival. We both tried lots of incredibly restrictive diets and did a lot of research on our own health. Endless doctors visits, bloodwork, tests. It felt like she wrote the book for me.

Despite learning various new truths about our bodies via integrative medicine, our symptoms did not all go away for good.  “At the time I knew only that I was a somewhat anxious young woman with largely invisible and hard-to-measure symptoms that came and went and affected different parts of my body.” – Meghan

I recognized I had had a lot of health problems before my TBI, but because I internalized them and rarely discussed with anyone, in some ways I “pretended” to live a normal life despite all of these issues. Maybe if I pretended they weren’t that bad, then I was basically healthy. Reading all of the diagnoses on my medical paperwork would say otherwise. Reading this book made me realize that yes, I had been living in an invisible kingdom, with invisible illness for over 10 years. Only to be followed by a further invisible injury, launched deeper into the underground abyss of isolation and loneliness.

Chronic illness is similar to TBI struggles in that there is no obvious solution, most doctors cannot help. Primary care, ER, and neurologists had completed failed me in my first couple years of recovery, some even saying if I wasn’t better by a certain date, I would not continue to improve. This is simply not true. The brain is plastic, malleable, able to change, create new neural pathways. Searching for a clinician or doctor who could help was like finding a needle in a haystack.

Ultimately, Meghan discovered she had a tick-born illness called Bartonella (in the Lyme family). I immediately booked an appointment with a specialist. Turns out I have Lyme too.

Thank you, Meghan, thank you. Thank you for writing your book so at least we know we are all in the invisible kingdom together. PS do you want to be my friend?

Have you ever been scuba diving? I have not. BUT I know the basics. Don’t run out of oxygen! But also don’t go too deep. Stay calm so you don’t use too much oxygen at once. Plan when you must get back to the surface. You have a finite amount of oxygen and you must use it sparingly to last the longest. Imagine if you had to live under water 24/7 with this limitation.

A brain injury is the same except we have a finite amount of energy (vs oxygen) each day. Every single little teeny tiny thing draws from that energy. And each day is linked to every other day. If we use too much energy one day, it draws from the energy we have available to use the following day (or days). Unless you are in a dark room with no noise, no movement, no stimulation. And even then your brain is probably thinking so you are consuming energy. I sit on the couch, but I don’t necessarily turn the TV on because that is something my brain has to process, the movement, the light, the noise, the activity, the plot, the emotions. I have less energy than a healthy person, so I have to pick and choose what I can and cannot do in a day. If you let your tank get to zero, then you gotta go back to the boat.

For example, I need to go to the pharmacy, an appointment, have two work calls, walk the dog at least twice, pay some bills, brush my teeth, remember to take my meds, don’t burn down the house. yada yada. Well every single one of those requires in the moment me seeing if I have enough energy to do that task and will that interrupt the next thing on the list. Sometimes I have to cancel something at say 1 pm, because the 4 pm is more important and I just literally cannot do both- not enough oxygen- no choice! And when your tank is almost empty you feel like the worst hangover of your life, or as M says, just tell them a brain injury is like diarrhea. Sometimes you can’t see it coming and its a fucking stinky mess.

If home is where your dark room is with stillness and quiet, then you never want to go too far from home incase you didn’t plan your oxygen tank well and you run out early. Its like a rubber band, stay within the safe zone. Don’t do too many things in a row. Always know how far away from the surface.

For TBI (or Lyme), fatigue is like scuba. You can’t push through your lack of oxygen. You only have one tank and it does not replenish itself.

Do I ever want to try scuba diving you might wonder? I live under water. Every. Single. Day.