I love celebrations. I love my friends. I love when the two combine (what, you never sit down in your TV room and snarf cookies because it’s Twinkie Tuesday?)
So now that my 50th is right around the corner (read: November), I’m amazed, blessed and happy as hell that a friend volunteered to throw me a birthday shindig. Up in my ‘hood. AND PEOPLE ARE COMING. I’m beyond gobsmacked. My friends really are the best.
One thing: no kids allowed. Why? Because November is in cold & flu season + I’m immunosuppressed/immunocompromised. I don’t want to 1) end up in the ICU, 2) lose my kidney transplant, or 3) all of the above. But though I assume that everyone invited — folks I’ve known for years — understand my plight, almost immediately after the event was posted someone commented “hey, why didn’t you invited [insert kids here]? They’re awesome!”
Um. Okay. Perhaps I’ve never been very clear. So here goes.
- I’m sorry that I’ve never been very forceful about my illness, and the problems/accommodations surrounding it. I’m still embarrassed by it, mostly because I have an ex-husband that for 14 years told me that I wasn’t good enough/would never find or keep friends/would never find or keep another man (true so far!)/would never get anyone to understand me because I’m broken thanks to my illness. That embarrassment and lack of ability to get real without crying is something I’m still working on. 29 years and counting.
- I cry about this. A lot. Every time I have to change plans, cancel plans, figure out who I can hang out with during what time of the year (hooray flu season! Not.), and/or find out that I can’t make something I’ve been dying to get to because I’m either sick or exhausted? I cry. Every. Single. Time. So when someone brings up something — oh, say “why aren’t you inviting kids?” when the invitation says please leave ’em at home and you know that I’m chronically ill — I cry. Again. And I can’t get that comment out of my head. EVER. Again, I’m working on that.
- If I do spend time with someone who’s sick, there’s a 90% chance I’ll be sick. That includes “I’ve just been sick, but I’m on cold medicine!”, “I’ve been sick for two weeks, I’m sure I’m not contagious now!” and “I’ll just talk to you from three feet away, that’ll work!” So please, please, PLEASE bear with me, and don’t think I’m a dick for asking if you’re sick before we hang out. I’m simply trying to stay alive. Yes, that sounds dire, but it’s the truth. After spending time in the ICU for pneumonia and having doctors tell me “next time you get this sick, you may not recover”? I’m testy. I apologize.
- I try my best to lay out my whole “chronically ill, immunosuppressed, I get sick easily” thing, but I probably don’t do it well enough to let it sink in. Probably because while I have no problem telling everyone all about the stupid minutiae of my day, I have a very hard time discussing anything as deep as my illnesses
- Having a kidney transplant for almost three decades gives you more than a respite from dialysis. It’s given me high blood pressure, high cholesterol, hypokalimia, skin cancer, thyroid cancer, issues with short-term memory, and a few other things. So while yes, you may know someone who is a star athlete, or who has 4 wonderful kids and a kickass job as an attorney/brain surgeon/restaurateur, and has been rockin’ the transplant? Every one of us is different. That was me 15 years ago, at least with the kickass job. That’s not me now. And I’m still heartbroken that I can’t do what I love anymore.
- Forgive me for being testy, or getting quiet after the discussion goes on and on about how I really could do so much more/make money/find a job if I simply thought about it. I love you very much for those ideas, but I’ve thought ’em to death years ago. I was also a handicap placement coordinator back in the day. And I had to retire on disability when I realized that even I couldn’t find anything I could do after my illness decided to take over completely.
- I love you. I really do. Please love me back. And understand that this illness sucks…but hopefully you don’t think I do.
So yeah, I deleted that comment, took a deep breath, and sat down to write this. This rambles, but rather than sitting on this post for months and then deleting it, I’d rather just put it out there.
Chronic illness sucks. Chronically ill people try their best not to. And we hurt like hell when we’re called out on our problems. Questions, comments, concerns? Ask your local chronically ill chick or dude. We’d be happy to help you sort things out. Oh, and read up on Spoon Theory. That shit’s brilliant.
UPDATE: btw, I freaking love kids. They get me. Because I have the brain (and attention span) of a sugared up 5-year-old. Come summer, you can’t keep me away from kidlings. Let’s go watch My Little Pony!