Left Powerless

by David Goldman

A power outage. I imagine we have all lived through one or a dozen in our lives. Where I live, our power goes out on an average of about once every two years. I don’t have statistics to back this up; it just seems that way. And when it does go out, it’s usually only for a matter of hours which really isn’t a big deal. This past week though, was a whole new ballgame. We went almost three days with no electricity.  To be precise, 66 hours and 16 minutes, give or take 10 minutes. You may be thinking two days, 18 hours, and 20 minutes isn’t so bad, and you’d be right as long as it wasn’t you living through them. So how did I spend my three days of pioneer living? Read on … 

Monday, 8:00 a.m. – I’m in the shower and I can hear the storm outside. I’m thinking it must be a good storm if I can hear it in here. The moment this thought crosses my mind, the lights go out. The bathroom door is closed so it’s pitch black. Great. Fortunately by now I’m pretty familiar with my body parts and their placements so I can finish my shower. But shaving is definitely ruled out. My wife is off of work today and being a guy, my first answer to the what-are-we-going-to-do without lights question is of course, sex. Before I can broach the subject Debbie tells me she’s going to run errands. Must be that spousal, mind-reading trick she’s so damned good at. 

Monday, 9:00 a.m. – Still no power. Commonwealth Edison or Com Ed as they’re called, has an automated call line that tells you when to expect your service to resume. I know this because I’ve lived through enough outages to know the routine. I even have their number in my cell phone directory. I call and get a busy signal. This continues for the next two hours. I finally get through and start the automated process. I enter my home phone number, my name, my address and my preference to boxers or tighty-whiteys. Finally, I hear this from the automated attendant, “We have completed an analysis of the situation and have determined that your restoration time is …” What? How long? “… unknown. Thank you for calling Com Ed. And, you can access Com Ed on the web at w-w-w dot com ed dot com.” My first instinct is to shout into the phone, “How the hell am I supposed to access your web site if I don’t have electricity?” But I picture myself yelling at the computer at the other end of the line and decide against it. I figure this is probably going to go on for a while. I work from home and with no computer, I can’t work, so I take the dogs for a walk. 

Monday, 6:00 p.m. – I’m at dialysis and it turns out that most of the people there, staff and patients, are also powerless. We share stories about where we were when it happened, when are we getting the power back, and how odd life is without the background noise electricity provides. One nurse tells me that every time their power goes out her husband wants to have sex. I respond by telling her that when our power went out, my first thought was to see if there were any elderly neighbors who needed assistance.

I decide I’ll try to call Com Ed again. I enter all the critical data. Still no estimated restore time. 

Tuesday 3:00 a.m. – I’m tossing and turning in bed and I haven’t slept a wink. I’m so used to going to bed with the TV on that the complete silence is unsettling. It’s also unbearably hot by now. It was 90° today and all the cool air the AC had provided is long gone. The windows are open but there’s nothing even close to a breeze. I decide I’m going to go sit in the car with the air conditioner blowing. I tip toe past my sleeping wife and dog and make my way out to the car. Here I can listen to the radio and recharge my cell phone which is almost dead because I’ve been obsessively checking my email on it all day because I have nothing else to do.

I sit in the car listening to a discussion of whether or not a guitar that’s being auctioned off is the one Carl Perkins used on the recording of “Blue Suede Shoes”. Various experts and pundits weigh in with their theories and proclamations. I’m amazed at what I’ll accept as entertainment when I’m shut off from the rest of the world. 

Tuesday 9:00 a.m. – I’ve showered in the dark again and I’m ready to start my second day of doing nothing. Within a couple of hours I need to charge my phone yet again. I start the car, connect my phone, and let it run while I sit in a lawn chair on the porch where I can make sure nobody decides to drive off with the unattended car. I bring Homer & Frannie out on leashes to bide the time with me. I also have an iPad with the book I’m currently reading. Forty-five minutes later I’ve completed the book and because there’s no Internet connection, I can’t download another one. Instead, I start playing Battleship on the iPad. In the course of a mere four hours I work my way up from a lowly sailor to lieutenant commander, to captain! I sit back, aglow with the satisfaction of my achievement.

At 5:30 p.m. Com Ed has a restore time! My power will be back on at 10:00 p.m. Hallelujah! We go out for dinner and get home around 9:00. It’s still completely dark in the house but at least we know it’s only going to last for a couple more hours. 

Tuesday, 11:00 p.m. – The designated time comes and goes. Still, no lights. I wait an hour and call my friendly, automated voice at Com Ed. I properly answer the cavalcade of questions and hear, “the estimated time for restoration is … no estimated time” followed once again by the suggestion that I visit them on the web. Yes, they actually said the estimated time is no estimated time.

However At 12:30 a.m., Wednesday morning, my automated nemesis tells me our restoration time is 6:30 a.m. I fall asleep knowing that I have taken my last shower in the dark. 

Wednesday 5:45 a.m. – The temperature dropped so I slept well. I wake up, look at the clock, and realize the power will be back on in just 45 minutes! Silly, gullible, me. 6:30 a.m. slips in and out of existence with nary a trace. Com Ed’s phone lines are busy, most likely with other aggravated customers. At 8:00 a.m. I get through to the automated system. I go through all the steps again: name, phone number, and address. I’m asked to name a word that rhymes with “gulf”. I quickly realize it’s a trick question and assertively state, “No words rhyme with gulf!” The dejected robot voice tells me I am correct and the time for power restoration is now 11:00 p.m. that night.

I’m getting much better at doing nothing. At 4:00 p.m. I go to dialysis and find out that all the other people who had lost power now have it back. All that is, except me. But at least I’m hopeful that it will be back on late tonight.

Debbie picks me up from dialysis and we grab some dinner at a nearby restaurant that actually has electricity. I stare, open-mouthed at the electronic appliances all whirring and moving. We get home about 9:30, take our respective flashlights, and wait for the anointed time. 

Wednesday, 11:00 p.m. – Nothing. I’m still staring into the blackness. When I call Com Ed this time I’m connected to a live person. She tells me there’s no updated information. I ask if the problem is being worked on and she says that all the problems are being worked on. “So, is there is a crew working right now to get my power back?” I ask.

She replies, “I don’t know.” I tell her this really isn’t helpful information and she tells me I can check their web site for further information. I ask her if she’s joking and she seems insulted.

“Do you understand that I cannot check your web site because I’ve had no electricity for almost three days and therefore I have no way to access the web. She tells me that I can go to a library. I thank her for being particularly unhelpful and hang up.

Now I can’t sleep because I’m so agitated. I’m lying in bed devising a revenge strategy when, at 2:15 in the morning, the TV and bathroom lights come on. I hug my TV, bow down in homage to my clock radio, and kiss the air-conditioning vent. Our three day, camping in our own home experiment is over! I’m so excited I still can’t sleep, but I’m so overjoyed I don’t care.

Later in the morning I’m watching the local news and a field reporter is in a nearby area that’s still without power. She’s winding up the story and, as an addendum, she notes that in a recent customer satisfaction survey, Com Ed ranked 112th out of 124 Midwestern utility companies.

Clearly they’re working hard on grabbing that 124^th position.

Why I Haven't Written

Here's what I've been up to. See you next week! Roberta

Please forgive our absence

Roberta's been under the weather and I just got my power back so one of us will be writing soon!

Thanks,
David

The First Shot

by David Goldman

Being born with Type 1 diabetes at age one and a half was in some ways a good thing. I know that must sound a little crazy (okay, a lot), but I believe it’s much easier to adapt to radical changes in your life when you’re young. Consequently, the dietary restrictions and having to receive an insulin injection everyday were never really a big deal. I never experienced anything different, so they seemed normal to me. Every morning when my mom would wake me she’d have a syringe in her hand, and before I got out of bed, she gave me my shot and I got on with the day.

However, there was a big change coming. One that every diabetic child has to deal with: giving myself a shot.

Having my mom deliver the insulin each day was a breeze, although it did hurt a little. Back in those days there were no disposable syringes or needles. Every night my mom or dad would boil our syringes (my dad was a diabetic as well) in distilled water to sterilize them. The syringes were made of Pyrex glass and the needles were stainless steel. But because of their constant use, they were relatively wide. Plus, being used over and over again dulled their points so when they went in, you’d feel it. But it was a pain I got used to. I guess repetition either dulls the sensation or I just learned to cope with it. I knew there was no avoiding the inevitable. It was something I had to do, so I might as well do it and get it over with.

Eventually though, I was going to have to learn to fill the syringe and inject it myself. I don’t know when I first came to this realization or if I was told by my parents that it was something I would  have to do one day. The thought of filling the syringe properly didn’t bother me in the least. Injecting myself? That was another story.

The vision of jabbing a syringe into my arm or thigh terrorized me. My doctor and all the experts at the time preached teaching kids to do it themselves at as early an age as possible. Just like not eating sweets, getting used to it at a young age gave us less time to fear it, or form rejection toward it. So, one morning when I was five years old my mom came into my bedroom in the morning, carrying a bottle of alcohol, a box of cotton, and a filled syringe. She told me she wanted me to take my shot myself . I tried not to let on how scared I was.

I knew the process well. Tear off a piece of cotton from the roll in the box, unscrew the cap from the alcohol bottle, put the cotton on top of the bottle and quickly turn it upside down keeping the cotton in place and letting it absorb the alcohol. Then, wipe down the area of the skin where the needle was to penetrate, thrust the needle in, and push down on the plunger. I had already gotten used to that part. My mom would put the needle into me and I would then push the plunger in.

Now it was my turn for the whole thing. I opened the box of cotton and tore off a small piece; I unscrewed the bottle and doused the cotton piece with alcohol. So far, I was handling this like a pro. Then I took the needle and syringe from my mother’s hand. I stared at it for a long time. The clear syringe with numbers and lines carefully etched in it, the cloudy insulin in the chamber, and the frosted glass plunger inserted far enough that there was no air inside the syringe. The silver-colored needle at the end with the word Lily inscribed on it by the manufacturer, a tiny hole at the end through which the insulin would flow and keep me alive. “Come on David. Put the needle in,” my mom said, snapping me back to the task at hand.

When she gave me my shot it was always with the same routine. She held the syringe’s body between her thumb and first two fingers. She’d count, “One, two…” and move the syringe toward the injection site on each count. Then came, “… three” and she’d plunge the needle in. So I took the syringe in my hand and held it the same way. With my other hand I wiped down a small area on the side of my thigh and counted, “One…” my wrist bent quickly down until the needle was within a half inch of my leg before rising back up, “two…” down again toward the spot, “three!”. The needle came straight down toward the cleaned spot and stopped. I couldn’t make it pierce my flesh.

“That’s okay, let’s try again,” my mom reassured me. So I went through these same motions a number of times, but the longer I tried to complete the job, the more difficult it became. I just could not bring myself to insert that needle into my skin. Finally, my mom gave me my shot that day and said we’d try again later. Later was good with me. Much later would be even better.

She tried again in a couple of weeks and once again I went through each step meticulously, except the final one. I really wanted to be able to do this, but it was as if I couldn’t control my own hand. I could not move it or will it past that point where the needle hovered just above the skin. It seemed like an impossible task.

My mom and dad both tried their best to have me do it in the coming, weeks, months, and years. My father took a slightly heavier approach. “C’mon, you can do it! Just stick it and be done with it!”. But it was hopeless. I was hopeless. I thought I would never be able to do it and it embarrassed me. This was something I needed to do and I should be able to do it. That’s what I kept telling myself. But I just didn’t know how to do it that first time. I’d pretend it wasn’t my arm or leg, that there was no needle on the end, or try with my eyes close, all intended to enable me. None met with success.

I was nine years old when my mother took a grapefruit and put it on the table. She said I was going to practice giving it a shot. So I loaded the syringe with distilled water, placed my thumb and forefinger on the grapefruit and formed a semi-circle, and went through the “one, two, three” mechanics and thrust the needle in. She had me take it out and do it over and over again.

I didn’t understand how this would help. Putting the syringe into a grapefruit was not like putting it into myself.  Here’s where my mother surprised me. She went and got another sterilized syringe and needle, loaded it with distilled water again and said, “Now you’re going to give that shot to me.”

And I did. Not the first or second time, but the third time, I did it. She had me do it four or five times to her that day. It made me happy that I was able to give a shot to somebody, but I knew it hurt my mom and I felt bad for that. I also felt like I had finally broken that invisible barrier that was separating the needle tip from the skin. “Tomorrow morning you will give yourself your shot,” my mom said. And I did that too.

Between the time I was diagnosed with diabetes, and my successful pancreas transplant at age 41, I’ve calculated that I took roughly 31,000 insulin shots. The great bulk of them, self-administered. Once I crossed that first hurdle there was nothing to it. It became as routine as any daily task, but I don’t think I would ever have been able to do it if it wasn’t for my mom holding out her arm that one day and saying, “Now you’re going to give that shot to me.”

Is THIS What John Adam's Had In Mind?

By Roberta Durra

Oh, say can you see by the dawn's early light

On July 3,1776 John Adams wrote to his wife Abigail:

“The second day of July, 1776, will be the most memorable epoch in the history of America. I am apt to believe that it will be celebrated by succeeding generations as the great anniversary festival. It ought to be commemorated as the day of deliverance, by solemn acts of devotion to God Almighty. It ought to be solemnized with pomp and parade, with shows, games, sports, guns, bells, bonfires, and illuminations, from one end of this continent to the other, from this time forward forever more.”

So just as Mr. Adams foresaw, a bunch of us, well approximately 18,000 of us went out on July 2, 2011 to a sold-out event at the Hollywood Bowl to celebrate “the most memorable epoch in the history of America”. This would be done with a grand display of fireworks, patriotic music led by the Hollywood Bowl Orchestra and Darryl Hall & John Oates playing hits from the 80’s.

What so proudly we hailed at the twilight's last gleaming

My husband and I started the festive evening by parking our car as far away from our 18,000 new friends as possible. This was done in the hopes of getting our car out of the lot at the end of the concert sometime before July 3^rd. We trekked from the parking lot carrying our picnic dinner packed in a paper bag, to the entrance of the Bowl where we met four of our friends who had also braved the crowds. Together the six of us entwined ourselves with the patriotic masses. We boldly walked, took escalators, stairs and ramps up to our destination, the nosebleed section of the Hollywood Bowl.

Whose broad stripes and bright stars thru the perilous fight,

I have been privileged to sit in many different sections at “The Bowl”, from box seats up front, to mid-range sections, to nose bleed. And let me tell you the high altitude seating is the most freeing. Not only have you not paid the hundreds of dollars (and perhaps thousands some have paid to scalpers), but you are so far up and away from the show that you could be just about anywhere. There is no need to be quiet, attentive and respectful when you are leagues away from anything concert related. Why, I’m not even sure we really were at a Hall & Oates concert. From our vantage point, Hall & Oates were each about the size of a matchstick. I know John Oates is a short fella, but even he isn’t that tiny. John and Abigail Adams could have been down there playing electric guitars and I wouldn’t have known the difference. 

O'er the ramparts we watched were so gallantly streaming

Before the celebration began I stole a seat cushion for my friend. By stole, I mean took one that was on someone else’s empty seat. My friend really needed it, they were sold out of cushions and I did what seemed “best” at the moment. Karma was quick to rear its ugly head in my direction. It came in the shape of an irritating, sour faced woman hidden behind a tanker truck full of makeup with her lips lined so dark and thick, it made her vinegary expression even more prominent. She demanded we move down the bleachers so that she and her husband and two friends (who wouldn’t materialize until 30 minutes later) could have more space. We were right in the middle of eating our celebratory 2^nd of July sandwiches, orzo and fruit salad on paper plates precariously perched on our laps, and she had plenty of room to sit comfortably. Instinctively (the kind of spot-on instinct that made me steal the pillow), I leaned my entire body over my husband and rudely barked, “ARE THEY HERE YET?” I never do things like this. I never yell at strangers. I may think a nasty thought now and then, but why on this day when John Adams suggested one should “display solemn acts of devotion”, did I let it rip? Lip-lady and I continued to send nasty glares towards each other until we both got bored.

And the rocket's red glare, the bombs bursting in air,

There was a guy in front of me who really didn’t care much about the music and was mostly into documenting everything with his Nikon. He stood and contorted himself in every position humanly possible in order to snap images of his wife, sister-in-law, her husband and his mother-in-law. I know their relation since I was just about sitting in their laps and it was impossible not to become intimately associated. This was especially true when the guy turned around periodically and snapped his camera in both my friend’s face and my own. It was startling and annoying. I think he was after the kids behind us with the glowing light sticks. I wanted to say, What’s up with this buddy? But I had already stolen a pillow and had the tiny fracas with the lady down the row. I didn’t want to alienate my entire section or get a reputation as a loud mouth. So I chose the high road and let him click away in my face. A decision I think John Adam’s would have applauded.

Gave proof through the night that our flag was still there.

The Hollywood Bowl Orchestra played several beautiful and festive pieces of music. Actually, I’m guessing they were beautiful and festive because I didn’t pay much attention. My friend had just eaten one of the blue sugar cookies from the red, white and blue patriotic cookie selection I had bought from a reputable bakery, when her lips, teeth and tongue vibrantly stained themselves a royal blue. It wasn’t a soft, unnoticeable color change. Had she been wearing blue pajamas she would have been mistaken for a smurf. She was a good sport though, and laughed hysterically with the rest of us. I think this was during one of John Philip Sousa’s marches.

Then Hall & Oates came out. They played all of their greatest hits and they were duly rewarded in our high octane section by standing, dancing, arm-waving, yelling, singing patrons, some with light sticks and others with dangly flags connected to Slinky’s hanging from headbands. In the words of Hall himself, “I can’t go for that, nooo, no can do”

Oh, say does that star-spangled banner yet wave

The fireworks were amazing. When the conductor of the orchestra announced the name of the pyrotechnic director my blue friend told me she had gone to high school with him and he had been the A.V. guy. Seems like the next logical step. He put on quite a show. It was big, colorful and magical. It was the only thing extraordinary enough to actually quiet our section. We sat with our heads tilted skyward and our mouths slightly open with frequent oooohhh’s and ahhhh’s. It was a beautiful display, more I think, than John Adams ever imagined when he spoke of “bonfires and illuminations”.

When it was over all 18,000 of us hung on to our partners and politely shuffled like penguins out of the bowl, only to probably meet again and celebrate with “pomp and parade” next July 2, 2012, just as Mr. Adams would have wanted.

O'er the land of the free and the home of the brave

Stuff We Like

 Happy 4th of July! Have fun. Be safe.

Roberta & David

Living With ESRD

by David Goldman 

That’s what it’s called – ESRD. It’s an acronym for end stage renal disease or, kidney failure, and here’s just a little background. 

The latest figures I could find show that a little over half a million people in the U.S. have ESRD. The two major causes being diabetes, which accounts for about 37%, and hypertension (high blood pressure) which claims just over 24%. The other causes are diseases of the kidneys and urinary tract. Out of these half million, about 80,000 die every year. ESRD can be treated with dialysis or a kidney transplant. Dialysis patients live an average of five years. A lot of dialysis patients actually die from heart failure. When your kidneys fail you don’t process the fluids you’ve drunk Dialysis removes those fluids along with the toxins that you no longer can process out, but this is very hard on the heart. Thus, the heart problems.

A kidney transplant can add indefinite time to a person’s life. A working kidney takes the place of your broken ones and is always a better option for keeping you alive than a machine. Obviously, the preferred method of treatment is a kidney transplant, but there are not enough kidneys to go around. You can obtain a kidney from a living donor, provided they match the essential criteria, or you can receive a kidney from a cadaver. For a cadaver transplant, the kidney must match the same way a living donor’s kidney would. You’d think there would be a plethora of cadaver kidneys but for some reason, people think when they’re dead they’ll still need their organs.

I am very lucky. Overall, I feel pretty good and I’m handling dialysis well. I’ve been on it now for seven months. There are a couple of recent additions at my dialysis clinic, but I’m still a newbie. I thought by now I would have had a transplant because I was very fortunate and had several friends and relatives volunteer to donate. The best match (blood type and other blood factors) has been determined, but I had to pass some non-kidney related medical hurdles before being okayed for surgery and my potential donor must as well. The wait has been a little frustrating. My expectations were that it would be done relatively quickly – within three or four months of starting dialysis. I am however, still fully confident that I will have the transplant within a few months.

There are two types of dialysis treatments: hemodialysis, which is what I do, and peritoneal dialysis, which is less commonly practiced in the United States. Hemodialysis is normally done in a hospital or clinic and medically trained professionals administer it. It is most commonly done through a fistula in the arm. For the patient, it’s a simple procedure. You get two tubes hooked up to you. One takes the blood out of your circulatory system, goes into the dialysis machine where it gets filtered, and then goes back into you through another tube. There’s no pain and you don’t feel anything.

But enough of the technicalities. For me, there are three main drawbacks to being on dialysis. One is simply the time commitment. I have dialysis every Monday, Wednesday, and Friday, for three and a half hours at a crack. With travel time, that’s close to five hours on each of those days that I’m married to the machine. It’s a lot of time and it definitely alters your life. I’ve gone out of town twice since I’ve started dialysis and both times I had to arrange to get treatment where I’d be. This past Wednesday as I was leaving the clinic, the nurse said she’d see me Friday. I said I wouldn’t be there. She asked why and I said I just felt like taking a day off. It took her a minute to realize I was kidding, but that’s really how I feel sometimes. Once in a while you just want to take a break, but you can’t.

Then there’s the fluid restriction. Going from Friday till Monday is my longest stretch between treatments and by the time I come in Monday I can feel the fluid that’s built up in me. Remember, when your kidneys don’t work you don’t pee, or you pee very little. Given my size and weight, my nephrologist wants me to gain no more than 2-5 kg (4.5-11 lbs.) of fluid between sessions. That may sound like a lot, but pick up three half liter bottles of water. That’s how much I’m allowed to consume in fluids each day. And that’s all fluids combined, not just what I drink. It includes fluid in fruits, vegetables, and all other foods.

After my pancreas transplant my doctors told me to drink lots and lots of water. They were constantly making me drink. Before this round of kidney disease I was drinking close to a gallon of water a day. So this three bottles worth a day is tough to get used to. Each night I have a root beer with dinner, and I always save it until I’m done eating. While I’m drinking it I tell Debbie it’s the best part of the meal.

Then there are a bunch of foods I can’t eat or must eat in very limited quantities. Renal patients have to avoid sodium, phosphorous, and potassium. Sodium is the toughest to avoid. It’s in abundance in literally all processed foods and soups, so they’re all out. There are high levels of it in most snack foods, deli meats, hot dogs, cheeses and more. Honestly, most people would benefit if they eliminated these delicacies from their diets, so adhering to a low sodium diet just makes me feel like I’m following a healthy diet.

Potassium is to be avoided because when it builds up it can cause irregular heart rhythms, and the heart is already being put under a lot of stress by the dialysis itself. Some of the potassium laden foods to avoid are oranges, nectarines, raisins, bananas, honeydew, tomatoes, pumpkins, avocados, spinach and asparagus. Sometimes it feels like there’s nothing left to eat.

Phosphorus is the other mineral to be stricken from the diet. This means limiting all dairy products, colas, nuts, and beans.

So, all in all my diet is now quite bland and I have very little to wash it down with. But I do get to eat quite a bit of protein so that’s a good thing. When I had ESRD back in the 80s the science was different and I had to severely limit my protein intake. I found that next to impossible. Now, the main course is easy to choose, but it’s the side dishes that are difficult. I’ve eaten a lot of plain brown rice, white rice, and noodles with a bit of butter.

There’s a fourth element here, an emotional one. If you were to see me, you’d never guess I had a problem. But having ESRD does begin to weigh on  me. When I wake up in the morning, the first thing I think is, is today a dialysis day? And it goes on from there. I have to think to make sure everything you consume is safe for a renal diet. Because I expect to have a transplant, I feel an obligation to keep myself as healthy as possible so the surgery is successful. I owe it to myself and to my donor. Further, when I  talk to someone who knows me, the first thing they ask is how am I feeling. I know their thoughts are well intended, but the ESRD starts to become a part of my identity.

A lot of people feel sick and can become very low functioning while on dialysis. So far I’ve been lucky. Overall, I feel good. I get tired easily and feel a kind of whole-body weakness, but other than that I feel okay. I’m also fortunate because I work from home so I make my own schedule. If I had to maintain a normal 9-5 schedule it would be difficult as I get really tired during the afternoons. Often, it’s to the point where I have to take a nap.

So this is a glimpse into my life with kidney disease. I think most of us know, or have known someone on dialysis. It is a life saving process that requires, time, commitment and patience, but I am certainly grateful that it exists.