Parties don’t do much for me. Other than a few minutes with a good friend who knows how to communicate with me and some good music.
So much about ALS isn’t just losing motor function, it also creates more and more isolation. Physically, no one gives me affection (hugs, holding hands, etc) and I can’t reach out to initiate it. I get two proper hugs a week when my sister really holds me close for a minute or two when she says hello and goodbye. Verbally, strangers assume I’m mentally incapable and even loved ones often don’t wait for me to respond for it to be a true conversation.
I used to joke that I was a wallflower sitting alone at a table while my sweetheart mingled – and I was completely content with that. After a week of interacting intently at work, I enjoyed just observing. Plus I could get up and join him if I wanted. Now a perfect arrangement would be mingling with him while friends talk to him in front of me so at least I could listen in. But space constraints rule out mingling for me, and even when I am by a friend’s side, people don’t think to include me in the circle of conversation – they stand beside or behind me, literally talking over my head, and don’t make eye contact. I feel almost shunned. Now I get jealous of friends socializing without me when we’re out. There are the rare instances when someone approaches me and realizes how to work with my speech device and we have an almost normal conversation. Those are treasures I can count on one hand. So all that considered, I’d rather stay home with facebook.
The reason I like facebook is that it’s like a party, but everyone has to communicate the way I do – by typing. No one cuts me off, talks over or around me, or walks away while I’m talking/typing. They don’t talk literally behind my back when it would be just as easy to stand in front of me so I feel like part of the conversation. I have a chance to connect with them and they have a chance to see my personality. Friends interact with me more in person when we also interact on FB. I don’t have to miss conversations because I can’t mingle. In person people are reluctant to approach me and uncomfortable waiting for me to respond – if they even realize I would like to respond. On FB we’re both comfortable.
Song of the week: Tonight Tonight by Hot Chelle Rae
4 thoughts on “When A Party Isn’t Fun”
Wow, best blog yet!! Your info is so helpful and eye opening. Thank you for taking the time to provide this very personal insight
You are right. I will hug next visit
Thanks for sharing.
Mara, you are amazing — this blog is life changing! Thank you for your generosity in sharing your thoughts, feelings and experiences, and for inspiring us all to be better people by your courageous and loving example. God bless you! I love you and am HONORED to call you my dear friend!