Quote:
Originally Posted by Mark in Idaho
Kim,
Sorry to hear of your bad day, especially on your birthday. I understand your need to vent.
Regarding your stepmom's comment, I don't think it was directed at you like you suggested. From how you described the day, it sounds more like your stepmom was saying, "I don't want you coming back until I don't have to be subjected to you limitations. I don't want to be put in the position of needing to make accommodations for your condition."
I am sorry you have to deal with this kind of attitude. Maybe your stepmom needs to watch the "You Look Great" YouTube video series. In fact, those extended family members who were there will benefit from watching it, too.
I bet your boyfriend will be a bit more proactive after this event. But, you should discuss this with him to arrange the protocol. Something like: When he is concerned by an event, he pulls you aside for a private conversation to ask if you can handle it. Or, if you are concerned, you pull him aside. Together, you two decide if the activity/event is too risky. If you decide it is, he makes the explanation for you. It would be better to not put the load on his shoulders alone to act. He needs to know that you are ready for him to step in and speak up.
And, remember that your extended family and other social contacts do not understand your condition. Sometimes, there might be an opportunity to have a teaching moment where you can explain the struggles of someone with PCS. When people learn a bit, it can empower them to be compassionate. Most people will not react negatively. Those that do will expose themselves as the jerks they are and you can take steps to protect yourself from their attitudes.
If you need some tips for how to explain the struggles, let me know and I will assign some brain cells to the need.
Well, time for me to got get some Tylenol. My head ache is just getting worse.
My best to you.
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Thanks Mark! I hope that headache is gone now!
I'm not exactly sure what my stepmom meant by her comment that I shouldn't visit for a while... and she was actually telling me what my dad said. I can't ask her until I'm doing better. She and my dad have been very supportive of me during this ordeal, it was probably just my perspective that made me think the comment was anything but.
I get really weird when I'm so exhausted; I tend towards really negative thinking with some added confusion.
I'm feeling much better today, but I'm still really tired and need more rest than I have in recent weeks.
My boyfriend and I talked about it; he didn't feel comfortable suggesting that I not to the hunt because it was my stepmom who instructed that it was going to happen! So he felt just as obligated that I try to perform the way I was expected to by her as I did! Pulling me aside like that is a very good idea, I will mention it to him. Hopefully we can both remember to do so. My stepmom has already promised not to have any more scavenger hunts. She just didn't realize I wasn't doing better.
I think she and my dad want me to be better than I am, so they kind of assume that I am. And I'm not so great at talking about the challenges I face everyday because I prefer to focus on the positive - so I've really only told them about my improvements over the last few weeks.
I think people living with brain injuries and PCS have to deal with a lot of miscommunications - at least that's been my experience. But when I add miscommunications with sheer exhaustion it can be a personal recipe for emotional disaster. (And another word that I can't quite remember right now! But it's on the tip of my tongue!)
And it's just another lesson on how I need to stay vigilant and pace myself now matter who I'm with. I'm able to do so at work and at home and when I'm visiting friends for the most part, but now that needs to be transferred to my parents house. I think a part of why it was extra difficult for me on Saturday is because they are my parents and they were in a place of authority for me for so much of my life and this condition has got me all discombobulated.
I don't think you need to allocate any brain cells towards helping me to educate my family or friends at this point. They don't get really it, but they're do the best they can. Thanks for the offer! I might take you up on it someday in the future.
