Parties, Weddings, Family Events – Oh My!

Going through my old pics I realized how few pictures John and I have together. Granted, John doesn’t like having his picture taken but most of the time the issue is that I attend social gatherings alone – kid’s birthday parties, family BBQs, weddings, graduations, and so on – places where couples are generally photographed.

It’s hard going to these events solo. I think this would be tough for most types of people but I am an introvert and, while John is too, he is outspoken and more comfortable starting small talk. This talkativeness is a nervous reaction in him that actually has increased because of his TBI.

Social gatherings are hard for John. This is for a number of reasons, all of which are common TBI symptoms:

• It is difficult for John to multitask.
• Background noise is hard for John’s brain to filter out.
• The meds that John takes allow him to function and focus but they also make him extremely talkative.
• John’s filter is gone so he can use bad language or be offensive, when he doesn’t realize he is doing so.
• If John is interrupted by anything: someone else, me jumping in to add to a story, music playing in the background, plates clinking, it’s hard for him to remember what he was talking about.

All of these things make him tired very quickly and he cannot bounce back or power through like a healthy person. If he gets distracted too much or stays too long, or any number of things, he starts rapidly becoming symptomatic.

After any social event he attends, he pays for it the next day. His brain gets so exhausted that he spends the next day, sometimes more, in bed sleeping and resting, in pain. Doing the simplest of tasks like getting up to wash the dishes, answer an email, or pay a bill can be too draining. Regardless, he is guaranteed to have a bad brain day. (I will explain in another post our lingo for him – good brain days, fuzzy brain days, or bad brain days.)

A bad brain day for John, in his words, is explained as, “The only way I can explain the overwhelming and all encompassing pain of my headaches and symptoms is that it feels like you drank so much alcohol that you got the spins and have the worst hangover you’ve ever had. Then, you step out into direct, glaring, bright sunlight, you feel as though you’re in constant motion, though you’re standing still or laying down, tinnitus is ringing so loud and constantly that you feel like a bell is being rung right next to your ears, and you can’t swallow.” The pain of a bad brain day is so bad that all he can do is lay in bed, in a dark room, and try to rest.

As his wife and support person, I have to live with the fact that he cannot attend many social events with me. I have to remember not to give him a hard time or pout about him not coming. I need to adjust my behavior when he is having a fuzzy or bad brain day – wait to do the dishes until later, speak softer, not talk to him until he’s ready, wait to talk to him until our daughter has gone to bed because she’s too distracting, etc. I have to put my own needs aside until he’s rested.

I also have to attempt to explain and sooth hurt feelings about why John doesn’t come to events. I haven’t yet found an easy or simple way to do this other than just, “He knows he’s welcome and wanted, it’s just too hard for him because of his TBI.” I know this doesn’t explain the why to our family and friends but its close to impossible to explain. There isn’t enough time in a conversation to explain and it’s very, very hard for someone who doesn’t already know about TBI’s to get it, really.

This is a hard aspect of being John’s wife and sad on many levels. It’s part of our life though and one I have accepted. Thankfully, he manages his meds and energy levels extremely well now so severe bad brain days aren’t as common as they used to be.