After Sunday I had the chance to take a good and hard look at what kind of a friend, neighbor, daughter, sister and aunt I have been. I am not beating myself over the head; I am just being honest with myself. I didn’t do all I could have done. I could have taken family leave while my mother was dying; I was afraid of having no money coming in -- the joke’s on me -- look at my financial situation now! I could have, and should have, moved in with my parents and taken care of them; my dad was recovering from hip surgery while my mother was dying, and was in another hospital when we got the news about my mom. Instead, I chose to work, going to the hospital every evening and on the weekends, and even going to rehearsals for a play I was in.
Was I an exceptional aunt? No. I did what any aunt does and nothing more. Ditto for the kind of daughter I was to my dad after my mom passed away. And now, I couldn’t be an attentive daughter and aunt if I wanted to. I can’t talk, drive, nor walk. I am literally of no use to kids. I was a mediocre employee, always concerned with “taking care of me” and not wanting to do anything extra that would take time away from ME. I was really not a great friend; I did what I had to do, and no more. In short, I cannot be angry that nobody is really “there” for me now. I wasn’t particularly caring to my elderly and infirm neighbors either, so what right do I really have to expect anything from any of them?
I am at more peace than I have ever been. I am not angry with friends, neighbors, family, or former co-workers. The next time I get depressed because it is a holiday or occasion and I have nowhere to go, I can ask myself instead “If the roles were reversed, would I do anything for anybody?” And the answer is “probably not”. We never think anything like this will happen to us. We think “my family, friends, and neighbors should _________” but why SHOULD they? I never put my life aside, so why should anyone else? Knowing this, facing it, and admitting it to myself has been liberating for me. I can look at myself at a function or event for ALS, and instead of wondering “why did nobody come to support me?” I can say “Why SHOULD they? Would I have been there? Or would I have also made a lame excuse and do something more fun?” I am ashamed to admit my response. I would have written the same lies to people that they write to me-- “I am thinking of you (yeah right!!), praying for you (also a lie -- I didn’t pray at all for anything), and I will be there to see you really soon and we will go out and have fun (yeah sure, I figured you would be dead by now) but I have been so busy (yeah right --I have no husband, no kids, and a studio apt to clean -- who am I freakin’ kidding?).
On the other hand, I am thankful for people who really HAVE put their busy lives aside for me -- Andrea Bryant, whose ex-husband died last summer from ALS, and who came over with pastries, and to help me sift through old photos to decide what to keep and what to discard (why DID I take a picture of that animal/building/person anyway? And what WAS I thinking when I cried for weeks or months when that guy dumped me, and I swore I would never meet anyone as perfect as he ever again?). I am thankful for the tulips Haley and family sent to me, and to Stacey who sends me little-- and sometimes big-- special surprises in the mail to brighten my day, to Andrea’s sister Marisa and Jennifer Bush for their surprise gifts, for Jeanellen, Barbara, Maureen, and Beth for their BIG gesture to make life easier for me. And to the Ride for Life people for helping me on the Ride, along with Ellita, because they saw that I didn’t have anyone with me to help me hydrate, go to the bathroom, and eat my lunches (Ellita was riding in the van, so I needed someone to walk beside me to attend to my needs -- drinks, sunscreen, breathing challenges etc). For everyone who really IS thinking of me and not just saying it to “do the right thing”.
I’ve stopped emailing anyone anymore to ask “how are you?” My attempts to connect are interpreted as “Why did you abandon me?” And I laugh, because I wonder what the messages really want to say. Hmm. Let’s see
“I haven’t been in touch because the idea of spending an afternoon/evening with someone who has to type conversation on a computer and who gets more food on her shirt or the floor than she gets in her mouth, is just not very appealing to me”.
“ I have been having regular barbecues or outings with people but the idea of bringing someone in a wheelchair who can’t talk anyway, is really not something I want to look at and need to expose my family and friends to. It’s just so unpleasant.”
Or maybe just this:
“It’s just too much trouble to have you and, after all, you weren’t such a good friend anyway”
But most people would just say “Aren’t you dead yet? Wow, I know I said we would get together, but I didn’t really mean it and, quite frankly, I figured you would die before I would even have to make good on my promises. Oops.”
Or just like the end of a date “I’ll call you”.
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