By Herald de Paris Contributor's Bureau on April 19, 2011
SACRAMENTO (Herald de Paris) – Eighteen months ago, while sitting at my desk writing a poem, I had a grande mal seizure. I slammed my head into the desktop first (causing two black eyes, a fractured nose, split lip, and very large knot on my forehead) and then literally flipped over in my zebra-upholstered office chair and slammed the back of my head on the slate kitchen floor. No one really knows how long I was unconscious. It was quite a while. My son Grayson (also known as my personal guardian angel) was home â€śsickâ€ť from school that day. When he couldnâ€™t wake me, he called 911, then grandma (who lives two blocks away), then my niece (who worked as a nanny two doors down), then put our two rescue dogs in their crate, then opened the front door for the emergency responders, then came to lie down next to me and wait until help arrived. I remember very little of what came next. I do remember one of the EMTs asking me who the president was and I replied, â€śThe Fly Swatter in Chief.â€ť Grayson laughed â€“ he was the only one who caught the reference to Obama catching a fly during one of his first live interviews in office. I got every other question wrong. I donâ€™t recall, but Grayson tells me I didnâ€™t know the year, the day, my birthday, what city we lived in, my middle name, my dogs’ names. The ER staff would continue to ask me these questions throughout that first day. My inability to answer should have been a hint of things to come for me.
I have no memory of about the first two weeks after the injury. I was confused, had absolutely no short-term memory, no balance, almost no ability to speak, unbearable head pain, and was in a state of fatigue that can only be described as unthinkable. Iâ€™m a single mama of three school age kids, and we all moved back and forth between grandmaâ€™s house and our own, with my family doing everything for me, the kids going back and forth to school and Girl Scouts and Sunday School, while I was in a near-comatose state on the sofa. I slept an average of nineteen hours a day. Eventually, I started to rise from the fog of that injury.
We relocated to California from the Mississippi Gulf Coast after Hurricane Katrina. Iâ€™d been unable to find a full-time, tenured professorship and had been an adjunct professor, teaching composition at a local community college. But that fall semester, the city made enormous, last minute budget cuts and I wasnâ€™t offered even one class. I had no insurance. I shuffled for months with my cane and my dark glasses and my earplugs through what seemed an unfathomable amount of paperwork and long lines and interviews and finally, with no pomp and even less circumstance, was approved for MediCal. I was diagnosed with Traumatic Brain Injury. I have a coup contrecoup injury with diffuse axonal shearing. In laymanâ€™s terms? Shaken baby syndrome. You would never know by looking at me that there is anything wrong with me. At this point â€“ even on my worst days â€“ I appear completely normal.
I remember explaining TBI (Traumatic Brain Injury) to people early on. No one had ever heard of it. Good heavens, even I had never heard of it! I Googled Traumatic Brain Injury obsessively, read everything I could find about it â€“ every blog, every news article, every letter to the editor, every scientific study. I couldnâ€™t remember what day of the week it was, but I could spout TBI statistics like a neuroscientist-savant. I came to realize this was one of the reasons TBI is so difficult for people to comprehend. I do remember telling people â€śThey say they wonâ€™t know how bad it will be until Iâ€™m at six months.â€ť I have no idea why I said this. Did a doctor tell me this? Did I read it somewhere? It isnâ€™t true. If Iâ€™d known what I know now â€“ that there is no cure for TBI, that it is a disability that I will be affected by for the rest of my life â€“ I would have been devastated, unable to go on.
TBI is a very isolating injury, an invisible disability. Every person who has TBI knows the frustration of this conundrum â€“ appearing normal while sometimes barely scraping through life. Every single day is a struggle. How so? My sense of time makes it difficult to get everything together and get out the door some days, no matter how well I plan ahead. Inability to make decisions can trip me up in unexpected ways. I might choose my clothes and breakfast, print out a map to where Iâ€™m going, set two alarms, but then Iâ€™ll realize I need to bring supplies to my meeting, and I get lost in the simple decision-making of what to bring. Sometimes my balance is off and I simply fall down over and over again, banging into walls like a frustrated drunk. Sometimes, despite my daughter writing the next dayâ€™s and date on a whiteboard every night before she goes to bed, I wake up absolutely convinced itâ€™s Monday when itâ€™s actually Sunday. Sometimes my migraine is so excruciating my heartbeat blasts in my ears and it feels as if someone has struck a frozen axe in my skull and I simply cannot move. And sometimes, it takes twenty minutes to figure out how to hook my bra (this is the kind of ridiculous TBI symptome one does not like to confess). Â Sometimes, my mind gets preoccupied with my ex-husband telling me, â€śI donâ€™t have any PLANS to take you to court for custody, even though youâ€™re brain damaged and disabled.â€ť Sometimes, I just get caught up writing a poem. I write a new poem almost every day. Again, the TBI conundrum. As time goes on, I learn to manage my TBI. Though I feel better, my life grows smaller. I usually donâ€™t drive at night or accept invitations to social affairs. Sometimes I break the rules and push my limits, as I did when I hosted a surprise party for my momâ€™s 75th birthday. People see me and think, â€śShe seems completely normal to me.â€ť What they donâ€™t know is that I have no memory of the party afterward (except from pictures) and that I have to â€śpayâ€ť for it by a three-day agonizing migraine and six to eight days of bed-ridden days of crushing fatigue.
Tomorrow morning I have my first day of TBI rehab. Iâ€™ve learned so many tricks to compensate on my own, but Iâ€™m thrilled to benefit from the knowledge and wisdom of therapists who understand Traumatic Brain Injury, who have the tools to improve my life so specifically. The simple act of calling the Mercy TBI Rehab clinic is a curious, amazing sensation. Having someone on the other end of the line â€śget itâ€ť that your mind is impaired in ways both complex and bizarre is profoundly satisfying. I canâ€™t quite believe that a state grant from the Department of Rehabilitation will allow me to receive, after 18 months of very aggressive self-advocacy, TBI rehab completely free of charge. Tomorrow! You would think Iâ€™d have been excited about it all day, wouldnâ€™t you? I wasnâ€™t. Actually, I forgot about it. I had to call, in a panic, at the last minute, to find out what time I was supposed to be there. Iâ€™d lost the paper I wrote the information on and I couldnâ€™t remember. I finally reached the director of the program in the late afternoon, long after the clinic phone hours. She was remarkably patient and kind with me, explaining my schedule for each of the therapies I will receive â€“ occupational, physical, and speech.
It isnâ€™t that Iâ€™m not excited. I am. Iâ€™m profoundly grateful. Iâ€™m starting this column to help other people with TBI and the people who love them. Itâ€™s a life-altering injury and a soul-stirring challenge. That there is someone who is going to wake up tomorrow, ready to help me reconnect the circuits in my brain, make my life easier, gives me great pause, great hope.
I just lost track of time today â€“ I was occupied with something else. As I can no longer teach college writing, Iâ€™ve been exploring other ways to make a living. Iâ€™m working on a book project, reaching out to amazing women all across the country. Each and every one of them has been through some sort of enormous personal crisis, and has triumphed. They have battled cancer, heart failure, domestic abuse, poverty, and worse. Theyâ€™re not survivors – theyâ€™re outright warriors. They are prize winning, superstar, famous, wealthy, well-traveled, outrageously talented alpha-women. Theyâ€™ve been to hell and back, and lived to tell the tale.
Funny, you wouldnâ€™t know by looking at them.
Herald de Paris Literary Editor Alice Anderson, author of a collection of poetry titled, “Human Nature,” is a past-winner of the Elmer Holmes Bobst Award for Emerging Writers.