How are you doing? It is a question that is easy for us to quickly answer most of the time. But for my daughter, Mallory, and others who have brain injuries, the reply depends on multiple factors. I would love to have an opportunity to give you an idea, to the best of my ability, to tell you “how she is doing.”
Mallory suffered her 4th concussion in a basketball game in December of 2016, and her 5th in a car accident in February of 2017. She has seen many professionals, all with the best intentions, but not all with positive effects. She has been prescribed various therapies, supplements, and medications with differing results. So far, many have made the “Not Effective” or “Made Her Feel Worse” lists. Right now she is in the midst of a couple new therapies that we are hopeful will give her a much prayed-for breakthrough.
Since December of 2016, she has struggled with a vast array of symptoms at different degrees of severity depending on several components including the time of day, how tired she is, how full her schedule is, and how much cognitive activity has taken place that day.
There are bad days and there are “not-quite-as-bad” days, and rarely any indication of what kind of day it will be until she is smack-dab in the middle of it. Some symptoms she battles on a daily basis include a constant headache, fatigue, and insomnia. Also, her autonomic nervous system refuses to calm down, so she is constantly in fight or flight mode. She has short-term memory issues (the reason she writes in a notebook and types many reminders on her phone to keep track of what she needs to do that day, her homework assignments that are due, and even conversations that she has had because she is embarrassed when she repeats stories to people) soreness in her back, shoulders, and neck, because her brain is trying to coax her into the fetal position for protection purposes, focus problems, sensitivity to light, sensitivity to different sounds, sensitivity to overstimulation in her environment, anxiety, and because of the part of her brain that is injured, a difficult time trusting people. Add in the fact that she is a teenage girl and there is built-in stress with that and therefore…bad days can be, well, pretty bad. From my perspective, her “not-quite-as-bad-days” sometimes have me thinking (hoping) she is on the upward swing, when I can’t physically see her grimace in pain or suffer from fatigue, for instance. But it comes down to the fact that I often do not realize how bad her day has been since this young lady copes with her new life like a champ.
Quite possibly the most disturbing of all of her TBI effects is that Mallory feels like her brain belongs to someone else. She does not feel like herself anymore. She is on a roller coaster ride that she did not ask to get on. It’s as if her emotions, physical symptoms, and neurological functions conspired against her and boarded a different roller coaster that’s running right next to her. That ride is within reach, but she has no control over the ups, downs, twists, and turns.
If you don’t mind, I would like to be “that mom” for just a few moments and say that brain injury is an invisible injury that doesn’t require a cast or crutches while healing, but it is just as real. I would like to shout from the rooftops that she is not faking it, it is not an attention-seeking ploy, she sometimes just needs a break from the world and to not take it personally, and, no she is not “lucky” that she has some school accommodations to help her cope with the fact that schoolwork is all of a sudden challenging. (She would much rather have a healthy brain and no accommodations, thank you very much.) I want to say that because she seems happy-go-lucky one day and maybe not the next, it is to be expected, because it is a very up-and down-healing process. “That mom” in me wants you to know that she gears up for activities and does those activities to the best of her ability…but the “gearing up” takes a toll on her even before the activity begins, so after a busy week or a big event, her body and brain require extra time to get back to normal, or rather, whatever her new normal is. “That mom” in me wants to say that the thing she wants the most from people is understanding.
Mallory is attempting to figure out her new normal, and she is doing it while being a pretty amazing young lady. She will soon be graduating high school and registering for college classes, she is involved in many music endeavors (I believe music is extremely therapeutic) she is on the local ambulance squad, she has started a blog (mallorythielgesblog.com) which I highly recommend checking out, and she does it all (most of it) with a smile. 😉
My husband and I have said that this is a whole new territory for us, and truth be told, we are getting educated on something we would rather have not known this much about! However, the “all things work together for good” promise that God gives us in Romans 8:28 reminds us to look for the positives in this situation. The most important one is that Mallory’s faith and boldness in sharing with others about her faith have been renewed and revitalized. Engage her in a conversation, and you’ll likely be reminded of God’s plan and peace for your life.
And that is my attempt to sum up how Mallory is doing. She is experiencing something she could be complaining about; something that could make her feel hopeless at times, but at the end of the day, she is finding and focusing on the positive. She is reminding others and herself of God’s plan and peace. And this mom thinks she is doing quite well.