I have to get this done.
“Come on Charlie, you can do this.” I say. I find talking to myself, out loud, helps me focus. It seems to catch my brain’s attention in a way that just thinking to myself doesn’t anymore.
“Just write it out. Get it done.”
But what do I want to say? What should I say? What needs to be shared, and what needs to be held back?
About a month ago, I bought a plane ticket to visit my mom (discussed here Tripping). It will be the first time we see each other in almost four years. More importantly, it will be the first time she will see me since my second mTBI – the one that pushed me off the cliff of almost-functioning into a deep canyon of barely functional that I’ve spent years trying to climb out of.
So, some preparation is necessary. A letter, to set realistic expectations about what I can or can’t do. Something to discuss my limitations and giving her a chance to get on board with what I’ll need when I visit. Even though we’ve talked about my fatigue, my over-stimulation, and the continuing limitations of my life on the phone… that’s different than dealing with it in person.
Gone are the days where I can just go with the flow, avoiding conflict, pleasing other people. Now, I have to be in control. Now, I have to plan and strategize and decide every move I make. That change in behavior, along with my changes in ability, are going to seem very abrupt for people who have known me for decades. So, I want to give them a chance to adjust to a different me, and ask them to help me make my trip successful.
That’s an important point. Asking for help. It is difficult to be so vulnerable, but I do need the help of the people I’m visiting – in this case my family. Asking for help in my letter gives them an opportunity to be my teammates, for us to work together to make the visit a success. I’ve never done that before, and it feels awkward and scary. But necessary. If I have learned anything from this injury, it is that I cannot do it alone.
I manage to write one draft. A little bit of time, then I write a second draft that is completely different. Another few days, help from my friends, and the third draft seems to do the trick. It hits all my points, crosses all my Ts, does what I need it to do.
My counselor gave me the key to my success – keep it simple. Focus on a few main points, the most important things they need to know, and let the rest fall by the wayside. People can only take in so much information at a time.
Being the scientist that I am, it makes the most sense to me to present the information using a cause and effect model. Here is my symptom/limitation (immutable fact), and these are the best ways for us to manage it (strategy).
For example, my #1 is:
I need a lot of down time to rest my brain.
My corresponding solution?
Throughout the day, I’ll need to take breaks and rest either in a darkened room, or by returning to my rental apartment. This rest allows my brain to reset, and helps me be as functional as possible when we spend time together.
Brilliant, right? First the thing that is always true – I need to rest my brain – and then what that’s going to mean for our visit.
Here’s my other ones:
Second, too much stimulation makes me confused and foggy.
I’ll need your help decreasing the stimulation in my environment. While I’m visiting, I’ll need us to keep the television and radio off. Multiple people talking at once also makes it hard for me to follow the conversation. Loud noises tire my brain, so I need to avoid them. Electronics like the computer or cell phones can quickly overstimulate my brain, so I need to limit my exposure.
Third, public places are often overwhelming
I will need to limit my time in public places. I can do a few things out of the house when I visit, but I’ll need to plan those excursions carefully. Places like stores, restaurants, or large crowds can exhaust me quickly. After being in such a loud or busy environment, I will need to rest alone in my apartment. Daytime activities are easier than nighttime activities.
Fourth, I do best with routine and a schedule
Making decisions in the moment is hard for me, so it works best when I plan ahead. Here is a tentative plan for my visit: I will come over to your house in the late morning and visit for a few hours. Once I start to tire, I’ll return to my rental to rest. Then, I will come over again in the late afternoon or early evening for several more hours, then return home. We can adapt these plans to fit your regular schedule, and for any special event or activity. I want to make sure you both still do the daily activities you love, like swimming.
Those are my four main points. My letter starts with a request for help and an expression of excitement for the visit, and ends with a thank you for being willing to help and I’m excited to visit. Below is a copy of the whole thing – feel free to use it for your own personal situation. If you share it with a group or post it online, please be sure to give me and my blog credit.
My next blog post will actually happen while I’m out in Oregon. Wish me luck, my friends!