Definitions

A week or so ago, I read a piece on the site The Mighty, which is where people talk about life with chronic illness-or their lives with a family member who has it. I can't find the link for this particular story, but it was written by a mother who talked about how her daughter's illness did define her--and she was sort of glad it did. 

I gotta say, I don't agree. 

I'm a lot of things. 

I'm Catholic. I'm a girl. I'm an American. I'm a dramatic contralto. I'm mathematically impaired. I'm near-sighted. 

These are all things I would list before I say "I'm a girl with a lung transplant." "I'm a girl with CF." "I'm a girl who can't hear."

Why in the world would you want to describe yourself by what you are not, or by what is wrong with you? Why define yourself in a negative way?

There was a student at my college who had a chronic illness. But unlike me, this person definite him/her self (yeah, I'm being really vague, here) by the illness. It was the first thing his professors knew about him. It was the thing she led with. 

This repelled me. My professors didn't know anything about my health until I was in the ICU for two weeks and I was missing class. Then I  (well, my parents) told them. 

Sure, there are things that I can't do. But why would you define yourself that way? "I can't do differential equations." "I can't spell." "I can't swim." Why in the world is any of that important? 

I'm not tossing out the old rag "everyone can do whatever they want!" "You can be anything you want to be!" Because that's crap. It's not true. I can't play in the WNBA. I can't be a swimmer like Michael Phelps. I can't be a prima ballerina. 

Everyone has limitations. It's part of life. None of us are perfect. But why you would lead with that, or make that the focal point of your life, is beyond me. I don't get it.

Is this part of me? Well, yeah. It's a part of me like my hair color or my eye color or my height. But I don't let those things tell me who I am, and that's not what I lead with at a party. 

Pre-transplant, I never really talked about my CF in public at all. Now, I do it because I want to spread awareness of organ donation. But I also think that's there's a fine line between talking about it/raising awareness, and over-talking it to death, and making it the KEY POINT IN EVERYTHING. 

If I could tell parents of kids with chronic illness one thing, it would be to let your kids live their lives as normally as possible. Don't coddle them. Don't make them afraid of life. Don't baby them. And also--tell them that they are more than the strange outcome of their genetics or malfunctioning cells. Yes, they might need some accommodation. Yes, they might not be able to do everything everyone else in their class can do. But that doesn't make them less. Don't define yourself by your limitations. 

Yarn Along No. 45

So, here we are, back to the Wednesday Yarn Along!

I'm on the second book of the Mitford series, and I'm really liking them. They remind me of Alexander McCall Smith's books--everyday happenings, people living lives in their small towns, but you can't stop reading about them and immersing yourself in their world. Mitford is the American version of the Gabarone or Edinburgh of McCall Smith's stories. 

 (And yes....using up that washcloth yarn!) 

Seven Quick Takes No. 105

I. 

The snow is melting! The snow is melting!

Really, I don't mind snow--around Christmas. I do mind it when it's crazy cold and I have to scrape off my car whenever I want to go somewhere, and deal with the ice around my car. But it's going to be 50 today, and almost 60 tomorrow! Yay!

II. 

I'm glad about that 60 in particular because tomorrow is the Columbus Catholic Women's Conference, and last year a huge snowstorm kept me from getting there. It starts at 8, but you have to get there early to get a decent seat--and registration opens at 7. So that means you get up early. And getting up early plus dealing with snow? Just, no. But this year, no snow! No ice! Yay!

I'm especially excited because Jen Fulwiler is one of the speakers.

At Edel with Hallie Lord (L) and Jen Fulwiler (center)

III. 

This week I went to my audiologist and got my cochlear implant (CI) tuned up. That's not the technical term, by the way. I hadn't been to see her in awhile, so I went it and we "reprogrammed" my processor. 

The big difference between a CI and a hearing aid is that a hearing aid just makes sound louder, while I CI helps you understand what the sound is. And if you're like me, and your hearing is basically shot, you need the CI, and not a hearing aid, becaus making sound louder won't help you. The cells in the cochlea have been destroyed, and thus the sound isn't getting processed correctly by my brain. Thus--the CI. An "array" was threaded into my cochlea during surgery, and that relays the sound I get directly to my brain, bypassing the broken bits. 

So anyway, with the programs, I can have various settings depending on what I need at the time. I generally use one that allows me to get a wide array of sounds, but there are ones for when I want to focus on quieter sounds, or when I want to focus the microphone to just the person or people directly in front of me (meaning, where my head is pointed is where I'm going to pick up sound.) 

After we fine-tuned the programs (they're called MAPS, if we're being technical, but I forget what that stands for), my audiologist took me to the booth where they run hearing tests. If you are hearing-impaired, these booths are generally awful because you feel like an idiot. But with the new program, I was able to hear a really wide range of sound at various levels (meaning I detected the sound--I could hear it at all) of pitch and volume. So yay! 

IV. 

The other thing about CIs? They're covered by insurance. Hearing aids aren't. 

V. 

I've been doing a TON of drawing this week. Bust out the paints and pencils! 

This is my Atlantic Puffin. I didn't get quite the result I wanted on the black parts, but I did it on watercolor paper, which has that grain. So, whatever. But how cool is this animal? Orange eyes!

I'm also working on sketching and painting teacups. I need to take some pictures of those, though, to show you. 

VI. 

Reading: Not a whole lot, sadly, other than my Lent books. But when one gives up book buying for Lent...also, the library hasn't had any interesting books on the ebooks roster lately. I love that you can borrow ebooks. No worries about returning things on time!

VII. 

This week in CCD we're doing Sacraments--we've broken them up into parts. The book does a chapter on the Eucharist when we talk about Holy Thursday, so that's coming up. This week we're covering Baptism, Confirmation, and Holy Orders. Next week: Marriage, Confession, and Anointing of the Sick.  

Hitting Rewind

So, 2016 started out with me being sick, but I could still make progress on my goals. 

Then we got a week in to 2016, and that all went out the window. 

I'd forgotten how much pneumonia takes out of you--the whole if I try to get dressed/put on make up/make a meal, I spend the next day wiped out and paying for it. I am feeling better, in that there's much less pain, I can breathe regularly, my heart rate is better, and I can take deep breaths! I'm sure my PFTs will be better on Monday. But as far as "normal activities", not a lot is happening yet, beyond the basic basics. 

That's OK--it just makes my goal tending Powersheets page look a little forlorn, these days. :) 

I go back to clinic on Monday for a follow-up, and assuming we don't see anything terrible, I will slowly start increasing things. But that, I don't just mean activity, I mean daily things, like writing/editing/reading--things that don't sound terribly strenuous, but can be when you're dealing with a limited supply of energy. 

One thing that has progressed, so far, is my art--I'm really glad to have decent brushes now, and to be playing with color and form. I will finish my Sketchbook Skool class by the end of the month, and that was one of my goals for this month, along with editing Tempest (and I did that, too--at least a first pass edit.) So this month wasn't a complete waste, goal-wise. 

And this might sound odd, but--the nurses I had in the hospital were pretty great. I don't mind spending time with good nurses. :) 

So I'm going to ease back into goals next week, and start February with renewed vigor--and hopefully a rescheduled California trip!