Tuesday, October 20, 2009

Reality Bites

This is what makes me different.

I don't always feel isolated and separate from my "regular" friends but the sensation has been more pronounced lately. Maybe I'm in a bit of a funk after E's death, or there is just a fresh wave of reality washing over me. Whatever the cause, I'm just trying to experience it and not do too much dwelling.

I've never been too concerned with being part of the crowd and, in fact, have for the most part avoided group interactions, preferring one-on-one social situations. I find groups overwhelming, with too many conversations whizzing around, my hearing loss making it more difficult to keep up with all the chatter. Give me a nice heart to heart with one person and I'm in my element. Nevertheless, I do have a group of women friends that I dearly love being with and see on a regular basis.

This past weekend, during the drive up to our dinner I was really feeling like the odd man out, not because I wasn't taking part in some of their activities, but because my life is just so very much unlike theirs. I know there are people who understand my unique situation, but even for them, it's impossible to fully grasp. I have trouble taking on more than I already do, though it is unfortunately my nature to want to. A good 4-5 hours of my day is taken up with self-care and equipment maintenance- such as washing sterilizing nebs, a major chunk by any standards. I don't think anyone can imagine the burden and tiresomeness of the routine, twice a day, every day of my life. Luckily, I'm able to back-burner it (as I think most cystics do) and just dwell on the time that is spent not doing treatments.

I remember a time when I was a teenager that I didn't want to have to "rely" on any medications. Yes, I took them as prescribed, but pushed my doctor to get me off them. Looking back, I wonder why I ever felt so strongly? I have come to realize they are part of my life. There are certain things about the internal workings of my physical body that are defective or missing; if there are pills to take that replace or "fix" these defects, why wouldn't I take them? So, I do.

I'm not sure of the purpose of this posting, other than to jot down some of these feelings I have. I imagine it must be difficult for a non-cystic to understand why we form these tight, intense relationships, usually over the internet ('cuz we're not supposed to be face to face due to infection control issues) but this feeling of being different is really it. It's comforting to speak to others in the same situation who have a level of understanding that nobody else truly can. The relationships are no less real or heartfelt simply because they aren't face to face, and they have been invaluable to me in my life. So, thanks to Paul, Kelly, Ellie, Laura, Laura, Shawn, Tina, Tamara, and Liz; some of the best people around. My whiny rant is now over and I'll give myself a good kick in the arse and start my day now that my nebs are finished. Edited to add: A huge omission! I had the feeling there was someone very important I was forgetting but for some reason couldn't figure out who it was. I'm lucky she let me know -- Lisa!! Now how in the world could I forget her? We share a name :-) Sorry, Lisa, you know I love you!!!


Tina said...

Oh Kim! You are the best ever. I am so grateful that I know you, that we met on-line and now have the ability to "see" each other whenever we want to. I feel like I take it for granted. My new place is even closer to you so there shall be no excuse!! I love you and hope to see you soon!
I have to see you soon, we are almost out of soaps and things will get smelly around here. Yours are the ONLY soaps we use!!

environmental fiend said...

Thanks, Kim! You're on my "A" list, too. :)

Clamshellmuni said...


CowTown said...

Thanks Kim! :)

I see some amikacin on your table. I wonder though, why don't you have 3 nebs plus your red amikacin neb on the table? Your display looks so much more tidy then mine! SO much stuff.