Happy May Long, too everyone! As a general rule, I avoid going to social gatherings where I don't know the majority of people. It's not that I don't like them, I do . For one, I don't work a room well, I am not sure I ever really have. Obviously, I don't move around the room and socialize with new people. I'm not really sure this was a good idea, I think to myself. There was about fifteen people in which I know three people, the two married friends whom owned the house and were generous enough to invite me and a friend who I've known since high school but have only seen a few times since my diagnosis. I didn't have anyone specifically staying at my side, I'm a grown ass person and I don't need a babysitter to help me. It didn't take long for someone to come up to me and start talking to me. There was nobody with me but I can do this? So the conversation started something like, "Hey I noticed you had a walker, did you just have hip surgery?" Oh ya, this is the part where I'm suppose to reply. My response was "No." that's right, a one word answer. I looked around the room desperate that there was someone nearby that I knew, who could help me talk to this person who literally has absolutely no idea that I have a neurological disease and holding a conversation in this already loud area is not exactly my strength. I think to myself, "Darrin, you're going to need to elaborate. This person is going to think I'm a complete jerk if I don't say more." I gave this person the hand gesture for one moment.
I respond with a smile, " No , I have a rare condition that's neurological that effects my speech and my mobility. So I don't use the walker (FYI, it's called rollator , but that's a another blog.) for my hip. I usually use a cane but this place is a little crowded for me and I don't want to end up on the floor." Pheww, I broke the ice and our conversation continued for about fifteen minutes. It was slow and I used a lot of body language to help me communicate. I tried to pull a few jokes that poked fun of me to help her relax and to try and let her know it's ok to talk about my condition.
The evening went on I didn't talk with a lot of people, but I attempted to talk to a few. There was food, but I can't move around a table without touching and dropping everything. It's a very clumsy ordeal. Usually someone I know would fix me a plate and, the offer was there, I just didn't want to go through any embarrassing moments, and yes it did feel like everyone was watching me.
All in all I managed. I am not certain I would do it again. I don't really feel like going into the washroom situation. I need to plan out a lot more things than the average person. Are there stairs? If they do have stairs, is there a railing that can hold my body weight? Going up isn't usually the problem, but coming down is. Where is the washroom? How accessible is the door from my car. How in the way am I going to be? How unpredictable are people going to be? The anxiety is not usually worth it. It's not an ideal situation and I think I get left out because of this disease. Really it's likely just me because I don't want people to make plans/accommodate because of me.
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