Thursday, April 24, 2014

The Right Words Correctly Felt

There is a popular story amongst PHers, although I do not know that it is exclusively ours but it could be. The story goes that there are two women friends out to lunch. One of them has PH, the other is healthy. The healthy friend is curious and wanting to be supportive, asks what it's like to live with PH. The friend responds by getting up from the table and collecting all of the spoons off of the other tables in the restaurant (probably quite slowly) and brings them back to her friend. She tells her that each day she starts with a certain number of spoons and that each thing she does takes away from that number. Start the day with just a few spoons and it doesn't take much to run through your supply.

Personally, I never liked stories like these. Too....cutsie.  But it gives a quick language between PHers that provides comfort and immediate empathy. The story also narrates to others outside of our world what it's like for us. But still, spoons just aren't my thing. I guess I am a little grateful that the woman didn't grab all of the knives from the other tables. "The Knife Story" seems like it should narrate something a little different. Although the facebook posts could get interesting. "So many things to do today, and I've already run out of knives."  Or if they had been at a cheap fast food place, thus naming it "The Spork Story".

Last month my family and I staid the weekend in Beavers Bend. We used to do this every year, but over time - actually almost all at once, many of us left home for other states.  Now some of us are back, all of us are older, and having these weekends together is even more special. At least to me they are. I'm not doing any roller skating in front of the cabins anymore, and I don't think any of us own a tennis racket. But we did sit outside and blow bubbles. We went on a train ride, grilled, played games.

I've found that family relationships get trickier and yet simpler as I've gotten older. I still hope the best for everyone, but it seems to hurt my feelings more now when I see them making excuses for unfortunate behavior. I know the reality of my situation, and I think my family does too, and not talking about it is kind of my way of staying positive. But too much watching others behave poorly kind of weakens the resolve to stay private. Well, that and tiredness. Tiredness always spills the beans. I bet some extra spoons would help clean that mess up. That paragraph barely makes sense. Must need nap.

And so I divulged to a few family members in a weak moment that things were not getting better. I am not holding stable, that everything I do in hopes of this has showed little effect. I told them I felt like I was caught in a mudslide moving quickly down a mountain and there was nothing I could do to stop from being devoured.

This month our PH support group meeting was a little different. We spoke to a group of people with various other lung conditions. During our story sharing it very unexpectedly came out that many of us do feel like we are at the edge of some presipice looking down. Walking on the edge of a cliff, at the top of a roller coaster about to drop down. How's that for relatable Spoon Story?