Skip to main content

When the dust settles…

From reading my blog you might get the impression I’m a neat freak. The truth couldn’t be further off the mark. Yet, as the daughter of the original cleaning Nazi - Mrs. White Glove herself - I feel as though I’ve failed at life as a grown up if my apartment isn’t straight and spotless. It’s a goal that, even before Pinesol made me a respiratory disaster area, seemed impossible to meet. I just couldn’t ever clean well enough. There was always something I missed, something I didn’t see or something I just plain forgot about.

I remember the first time my mom came to visit me as an adult – someone graduated from college and living in an apartment as opposed to a dorm. Knowing I’d be getting the white glove inspection, I took the day before she arrived off of work and cleaned in a frenzy something akin to a military operation – systematic and thorough so as not to miss a single thing. I cleaned the fridge, the oven, took everything out of cabinets and cleaned them and made sure the ashes from the fire place were taken out. I thought I’d thought of everything.

But Mom’s dirt radar prevailed. I’d forgotten one thing – the inside of the microwave. I’d cooked something and had forgotten to wipe down the inside after I was finished. As if the tiny particles of food were some kind of homing beacon, mom found them. She walked around my tiny apartment and commented that it looked “cute.” But, then, as if drawn by some unseen force, she stood in the galley kitchen and opened the microwave. It took her less than five minutes to find the infraction. We weren’t even cooking anything! Who walks into a kitchen and automatically opens the microwave door anyway?

Nowadays I hate it when people drop by. I know they often mean well, but without a chance to clean beforehand I envision the dust and the hair and the dirt that I can’t see just screaming out to people that can see well. I can almost hear my mother’s voice in the air, pointing out all the things I missed. Or, my schedule overwhelms me and while I might be aware of the dirt, it pales in comparison to work deadlines and HPS’ers in crisis.

In recent years the problem has been made worse by the fact that cleaning seems to make me short of breath. The kicked up dust, the smell of cleaning fluids – it all just wears me out and makes me tired. What used to take a focused Saturday afternoon now takes an entire weekend.

I work a full-time job, work part-time on the side as a freelance writer and help to run the HPS Network. Frankly, many evenings I’m either too tired, or too busy, to do my chores in bits. And, when you do them that way you never have the sense of satisfaction that everything is “done.”

So, while talking to an HPS friend recently, I could whole heartedly empathize when she confided that it drives her nuts when her relatives just drop by. She wasn’t the last HPS’er to mention this by the way.

For some of us, trying to not live in a total pig pen is a matter of personal dignity. Outsiders discovering our digs in anything less than a neat state is cause for embarrassment. For better or for worse, we care what other people think. We know the standard by which we are sized up and measured. It doesn’t matter if people say it doesn’t bother them, or it isn’t that messy.

It bothers us.

For me, it’s a matter of expectations. To this day I am occasionally reminded of the state of my dorm room when my family had to pack me up and move me out because I was in the hospital for several months with a serious, life threatening, bout of colitis. Never mind that in the weeks leading up to this event I’d been so ill that my friends had to bring me food from the dining hall because in the evenings I was too tired to walk up the hill. Or that just going to class took everything I had, or that my readers would have to wake me up when they were reading to me because I was so anemic I’d just fall asleep. I failed to meet the standard, to meet the expectations and no one will let me forget it.

If I dropped dead tomorrow, I honestly fear I’d be remembered for the dust and unfilled papers in my apartment and not the impact of my life.

Another HPS friend recently complained, “No one understands how tired I feel sometimes. People just drop in unannounced and they don’t understand how I’ve been feeling. All they see is the mess.”

Yet another expressed frustration with her spouse who wanted everything ship shape for holiday guests, yet she was exhausted trying to make it all happen and care for the kids.

These are problems everyone faces, to be sure. But people who never think about breathing, who never are aware of each breath as they take it, don’t truly appreciate the situation.

There are times when we try to stand up for ourselves. We try to express our needs. But more often than not no one listens. They don’t take us seriously because we may look and seem very healthy. Or even worse, everyone is an expert on what you ought to do. Often the most loving well-intentioned people try to help in their own way, but because they don’t listen, their help can be misplaced or sometimes even hurtful.

My advice: It isn’t an HPS thing. It’s a common decency, human dignity thing. Listen. Understand. Take a hint when it’s given. Know that if there’s someone in your family who hasn’t been well it can be hard to do it all. Don’t create additional pressure. Ask them what they want or what they need. Don’t put them in positions where they have to be rude to get the point across. Have a little empathy. Don’t assume.

Comments

Popular posts from this blog

Ratner's Cheesecake

Here's another recipe from Toby! Thanks Toby......and I'll get the others posted soon! Ratner's Cheesecake and plain cookies Ratner's was a Jewish dairy restaurant in the lower East Side of Manhattan. This recipe, from my disintegrating, no longer in print Ratner's cookbook, is the closest I've ever gotten to reproducing the rich, heavy cheesecake my mother made when I was a kid. It's worth the time it takes to prepare and every last calorie. Dough Can be prepared in advance. Makes enough for two cakes. Can be frozen or used to make cookies – see recipe below. 1 cup sugar 1 teaspoon vanilla extract 1 cup shortening 1 teaspoon lemon extract 1 cup butter 2 eggs 3 cups sifted cake flour ½ teaspoon salt 2 cups all purpose flour 1 teaspoon baking powder 1. In a bowl, combine all ingredients with hands. Refrigerate 3 -4 hours, or preferably overnight. Filling (for...

Some good news about Pirfenidone

Below is a press release from Intermune, the company that makes Pirfenidone. They have essentially reviewed the various clinical trials going on, and decided that Pirfenidone is safe and well tolerated. That would pretty much go along with what we've observed in the HPS community as well. We have a few folks that have been on the drug since the late 90s and continue to do well. Of course, as a journalist, I do have to say consider the source - but at the same time, as someone in a Pirfenidone trial, it's good to know. Results of Comprehensive Safety Analysis of pirfenidone In IPF Patients Presented At European Respiratory Meeting - Analysis shows safety and tolerability of pirfenidone across four clinical trials - VIENNA, Sept. 14 /PRNewswire-FirstCall/ -- InterMune, Inc. (Nasdaq: ITMN ) today announced that the results of a comprehensive review of safety data from four clinical studies were presented at the 2009 European Respiratory Society Annual Congress in Vienna, Austria...

The next generation with Hermansky-Pudlak Syndrome

I'm so behind on posting about the trip to Puerto Rico. Since the episode of Mystery Diagnosis on Hermansky-Pudlak Syndrome ran right after we got home, it's been a little busy. These, however, are my favorite pictures from Puerto Rico. I know, not pretty senery etc - but these little guys and gals inspire me. They are the next generation of folks with HPS, and if we keep up the hard work, they will live better lives because of it. They motivate me.