Betty bakes a pie

Remember I once, at the suggestion of an ill friend, adopted an old lady alternate identity? Betty. My friend had adopted Mabel. At times Betty and Mabel hang out. But, that's not too often because we, uh, I mean they are pretty decrepit. Mabel visited this week and she and Betty had a piece of Betty's pumpkin pie she baked over the weekend. Mabel knows how difficult such a project can be for someone in their situation and Betty was pleased she got to share her pie with someone who understands.

So anyway, on Saturday I, er, I mean Betty baked two small pumpkin pies and it wore her out. See, Betty hasn't had pumpkin pie in two years and has been craving it. She spent last Thanksgiving in the hospital and didn't get to make a pie. She is gluten-free and has an aversion to pies from the stores--read the list of ingredients in one and you'll understand why. A wonderful friend picked up gluten-free pie shells for her from the store to make her pie-making easier. And, her dear husband got down all the spices, took out the eggs and milk, pulled out all the measuring items, and the handheld blender. He also opened he can of pumpkin and placed a chair in the kitchen. He then went outside to work on fall-time chores that Betty can no longer help with.

Betty mixed up pie filling and poured it into the shells. She opened the oven, pulled out the oven rack, and tried to place the cookie sheet with the two pies on the oven rack without melting her IV tubing or her oxygen tube. All the while she was trying to mind where her face was so she wouldn't blow up from being so close to the inside of a gas oven. However, balancing and bending was too much and filling spilled over the edge of the shells and onto the hot cookie sheet.

With the cookie sheet now on the oven rack, Betty grabbed some paper towels and wiped as much as she could off the cookie sheet. She then had to get the oven rack pushed back in but she was light-headed and out of breath by this time. So, she sat on the chair next to the oven for a time, oven door open and unbaked pies sitting on the protruding rack. From her chair she slowly tried pushing the oven racks back, being mindful of her oxygen and IV tubing. The pie filling spilled over the shells again. She wiped up what she could manage without getting too far into the oven and finally closed the oven door.

Betty started the timer on the oven and took a nap without cleaning up her mess on the counter. She dreamed of a time, not so long ago, that she shopped for, prepped, and cooked a whole Thanksgiving day meal. And cleaned up the kitchen afterwards. She really misses being able to do all of that.

No Whining

There was a time I was too busy. Too tired. So sore. I complained about the daily hurdles of life--grocery shopping, cooking, cleaning, etc. I kept thinking that I had to push through it so these things would get done. Because, well, you know, who is going to do them if I don't do them? If I didn't sacrifice my time and energy, I would have piles of stuff, unopened mail, dusty corners, un-returned library books, and dirty dishes. I'd have no groceries and nothing to cook and my family would suffer.

I complained. Yet, now I realize there were very few times I had ever really felt pain I couldn't work through. And, I never knew what fatigue really was. See, if I had really known what pain and fatigue was, there would have been no working through anything. If I was truly in pain and that tired I wouldn't have been able to cook, clean, or go grocery shopping.  Because, when it gets down to it, true pain and fatigue stops you in your tracks. You cannot do what you want to do. And, you cannot do what you need to do. Things pile up and don't get done. Meetings go unattended. Events and holidays never make it on the calendar. And, even though one's brain knows these things have to be done, or should be getting done, there is no time or energy to sacrifice. All time and energy has to be focused on just surviving the day, trying to accomplish the basics like brushing one's teeth, eating, showering, and breathing.

When I am well enough I never want to catch myself whining about the daily hurdles of life again. Please stop me if I ever exclaim, "Oh, I'm just so busy." And, remind me that if I'm that busy, the universe is probably trying to tell me something.

You look good...

I used to see people, who appeared perfectly healthy, park in a handicap spots. "They don't look handicap. They don't look sick," I'd mutter to myself.

Who was I to judge? What does handicap look like? What does illness look like? What does dying look like? It seems I was totally missing a virtue that should have stuck with me through childhood and into adulthood: Don't judge a book by its cover.

I read a couple stories recently about nasty notes left on cars parked in handicap spots. Suzanne Perryman, a mother with a disabled child at a park, and Matt Milstead, a quadriplegic who was playing wheelchair rugby at a YMCA, received snippy notes about how they were clearly not disable or couldn't possibly be disabled. Yet, the authors of the notes failed to see beyond the cover. They assumed. They jumped to conclusions. "I've had people swear at me when they see me leaving a parking lot. Or when I pull in and they walk past me, they roll their eyes," Matt Milstead said.

By the time I was in heart failure and on oxygen 24/7, it was a blessing to have a handicap placard and be able to park closer to facilities. In the brief time I spent as a driver, I was stared at, glared at. Even now I catch people watching my family get out the car... my healthy young husband, and my bouncy daughter. Then my husband comes around the car to help me out. I see their faces turn when they see my oxygen tank.

Most of the time I can make my IV tubing disappear, tucked along my shirt and into a waist pouch. If I didn't have a cannula up my nose, I'd look fairly normal. A little pale, a little disheveled, but somewhat normal. I don't look like I'm dying. But then, what is dying supposed to look like?

I've been told I look good. I know it is supposed to make me feel better but lately I've become more sensitive. A lady I knew of through one of my support groups died recently while waiting for a life-saving organ transplant. And it happened quickly. She was having some difficulties, ended up in the hospital, and in less than two weeks she was dead. Her friends and family were shocked. "How can this happen? She looked good," they exclaimed. They failed to look beyond the cover. They failed to see the frail, brittle pages. Worse yet they spent the last few months unknowingly invalidating the seriousness of her illness with comments such as, "You look good."

She was thirty-something, likable, and her life was turned upside down due some some random illness which was no fault of her own. She was a devoted wife and mother. She was fighting for her life, fighting to stay here for her young son. On the inside her heart and lungs were failing and she was on strong IV medicines and oxygen. She was dying but they said she looked good.

In his book, The Last Lecture, Randy Pausch chronicled his life as he was dying from cancer. He was pulled over for speeding shortly after moving his family to Virginia. When questioning his out of state license and his move, Randy explained that he was dying of cancer and thought his wife and kids should be closer to her family. He just hadn't gotten a new license yet. The policeman said, "You know, for a guy who has only a few months to live, you sure look good."

Randy realized the policeman was trying to figure out if he was telling the truth. "I look great on the outside, but the tumors are on the inside," Randy tried explaining. He then pulled up his shirt to reveal surgical scars to prove his story

Why do we often base our assumptions on how a person looks? Are we judging a book by its cover? I wonder how many Randys, and Matts, and Suzannes are among us.