Chapter Six: Mist Tents and Scotch Tape

         At six years old my bedtime was at 9:00 p.m. That was always a struggle for my parents, as I was one of those “ten more minutes, pleeeeeease?” types of kid. This was especially true in the summer, as often I’d be sent off to bed before the sun had completely set. It had never seemed fair to me that my day had to end before the sun’s did. My sister Maureen, although 2 years my senior, had the same bedtime, and that always annoyed her. Truth was, neither of us was happy to go to bed, ever.

         This was especially true tonight. Tonight would be the first for Maureen and I in our new mist tents. It had been a hot, sticky late June so far that year, and the rest of the summer was predicted to be the same, if not worse.

         Our small experience in the tents so far had been less than stellar, and we had discovered that they had a major flaw, and that simply was that they were little hothouses. That made perfect sense, actually; since the tents main purpose was to keep the atmosphere inside as controlled as possible. But the controlled air in the tent was heavy with moisture, hence the big problem. Because you know what they say, “It’s not the heat; it’s the humidity”.

         I glanced at our wind-up clock. 9:00 p.m. was approaching fast, and my mind had already been spinning for a while with schemes to make my little hothouse livable. I knew that my mom would tuck Maureen and I in bed, as she did most nights, but especially tonight.

          Tonight she would make sure that everything with the tents was functioning properly, and that Maureen and I were properly positioned to receive an optimal benefit from our machines. That meant that I would have to mess that up as fast as I could after she left the room, and I had assured myself she wasn’t coming back any time soon. I was confident that I could figure some work-around pretty easily; it would be a cinch.

         I discussed none of this with Maureen; as I was not sure of her position on the whole ‘say one thing-do another’ strategy I was planning. We had both agreed with mom that we would give this tent thing a try, and I would, I guess, but I had to have a safety net in place. If it got too hot in there, I was going to bail out, no question about it.

         But watching my sister, and the way she was looking at her tent, I had a feeling she was on the same page as me. At one point, I watched as she practiced how hard it would be to throw her tent’s front flap up and back while still lying on her back in bed. She made several attempts, and it was surprisingly difficult to throw the flap hard enough to wrap it around and stay on top of the tent.

         I watched as she attempted this feat, once, twice, three times, finally saying to her, “Whatcha doing, Maureen?”

         “Nothing,” was her sole response. I just nodded. I knew what she was up to, but was curious if she would say anything to me about it. She was apparently planning her escape too, and had no intention of discussing it with me. Seeing that made me feel a little better.

         The light was fading outside, and I had hatched my plan. It was a simple one. My bed was closer to the window than Maureen’s was, and therefore closer to the window fan. I would simply push the front tent flap so that it would billow forwards, like a sail, and that would catch the breeze from the fan and bounce it into the tent. If I heard anyone coming down the hall, I would pull the flap down tight against the bed, and no one would be the wiser.

         I waited until Maureen went to the bathroom to change into her pajamas, and took a test run. I lay down in bed, and grabbing the bottom of the front tent flap pushed it up and to the side. It created a nice, billowy sail; that was immediately filled with the wind from the fan, and the breeze was then directed right on top of me. It worked like a charm. Best of all I could hide my subterfuge quickly, as I proved to myself when I heard Maureen returning down the hall. I grabbed the bottom of the flap and pulled, and the sail immediately disappeared. Maureen came back into the room, and gave me a look as I lay in the bed.

         “Whatcha doing?” she asked.

         “Nothing,” I replied. She stared at me a moment longer, then returned to watching the TV. She had her plans, and I had mine. It was not up for discussion.

         Mom stuck her head in the door. “Ten minutes, then bed.” she said. The countdown clock had started, just like the one I had seen on TV when I watched the NASA rocket ships. T-minus ten minutes till blastoff, but that was okay, I was ready for launch, you bet.

         It was my turn in the bathroom getting into my pajamas. This being the summer, I was wearing my short pants and short sleeved set, which were normally cool enough except for those really brutal summer nights. But with my sail strategy set, I had no fear that I would be okay. I was quite full of myself actually, I had everyone fooled. I looked up and I could see in the bathroom mirror I was not just wearing my pjs, but also a sizeable smirk. But all too soon I would have that knowing grin wiped right off my face.

         I shortly returned to the bedroom, and gave a quick glance to the clock between our beds. It was T-minus two minutes, and counting. I sat down next to Maureen on the floor; the Addams Family was just ending on the TV. She glanced at me, then looked at me even harder. I looked back, grinning.

         “What’s with you?” Maureen asked.

         “Nothing, why?” I answered, and continued to grin. Maureen just continued to stare at me.

         “You’re weird,” she finally stated. I just sat and smiled.

         Then sadly right on time, mom suddenly appeared. “Okay, bed, let’s go, bedtime…” she stated. Dad followed behind, a rather unusual occurrence. Our normal routine was to get the high sign from mom, and then go down the hall to the living room, and give dad a kiss goodnight. Not tonight. I guess they both wanted to be present to make sure everything went smoothly with the tents. I could understand, but it made me a little nervous. There was entirely too much scrutiny going on, and it made me wonder just how much of my plan I was going to get away with. At the very least, things were going to be more difficult than I had planned.

         Maureen and I kissed both mom and dad, and jumped into bed. Then dad flipped down my tent flap, as mom did with Maureen’s. We were now enclosed in plastic from our heads down to about our knees. I was already starting to feel hot.

         Then dad went over to the compressor, and flipped the “on” switch. It roared to life, and we all winced a little. I wondered if we would ever get used to that sound. I can now say with the distance of time, we never really did.

         Smartly, mom and dad did not say goodnight, as we were all aware we would not be able to hear them. They just waved at the door, and turned off the light. As was the custom, mom left the bedroom door slightly ajar, normally to allow a cross breeze from the fan in the window. But with the exception of a gentle wind on Maureen and my lower legs and feet, that now had become a complete waste of time.

         The compressor sounded even louder in the almost-dark room, if that was even possible. After what had only been a couple of minutes, I already could feel the sweat beginning to run under my pajama shirt. I felt it on my face, too, but it was hard to tell if it was sweat, or mist from the machine condensing on my skin. Either way, I was really starting to get extremely uncomfortable.

         The worst part was on my upper legs. There, the bottom part of the front flap of the tent lay right on top of me, heavy thick plastic sticking to me like a pair of synthetic boxer shorts. The weight alone was almost painful, and the fact that its sheer mass prevented any air from getting to my midsection was already starting to drive me crazy.

         I looked over at the iridescent face of our clock, and tried to make out the time through the plastic. The clock read about 9:07 p.m. That had to be wrong. It had better be wrong, or I was in big trouble.

         Five minutes later I had had enough. All right, I thought, I tried, I really did, but it was as bad in this thing as I was afraid it was going to be. It was time to launch the back-up plan.

         I gave a quick look towards the hall, or as much of it as I could see through the partly opened door, and accepting that the coast was clear, I pushed the flap up and to the side to create the “sail”. Two things happened almost immediately: A cool breeze from the window fan blessedly rushed into the tent, and almost all of the mist that had accumulated inside blew out.

         Almost immediately Maureen took notice of my game plan, and even through the half-darkness, I could see her smile of approval. Taking quick note of my method, she proceeded to copy it, almost exactly. Thus having solved the tent problem with creative expediency, I smiled to myself, closed my eyes and rolled over on my side, now sufficiently cooled off to fall asleep.

         I began to drift off, the roar of the compressor slowly beginning to drift off in the distance, its drone taking on a white-noise quality that was almost bizarrely soothing. Then, suddenly, I felt a sensation that caused me to be jarred instantly awake.

         My eyes flew open and I realized my father was standing next to my bed, “adjusting” the tent flap, which meant he was closing it securely again. “You have to keep that closed, okay?” he sternly stated; more than asked. I just lay there and nodded.  I looked over at Maureen’s bed, and apparently he had done to same thing to her tent before he had done mine. She just lay there, and I couldn’t tell at first if she had fallen asleep or not. Then she rolled over facing me, and even in the dim room light I could make out how mad she was.  I’m sure my expression was the same.

         The sound of the machine was so completely enveloping that I realized that with my eyes closed, there would be no way I could possibly hear my dad or mom in the room, let alone coming down the hall. And since I couldn’t sleep with my eyes open, it would now seem that my plan contained some major holes, large enough to fire a NASA rocket through.

         I looked over at the clock. It was just past 10:15 p.m. I guessed that my dad had checked on us as he went down the hall, either to get into his pajamas or use the bathroom. I knew that my folks would be going to sleep when the 10 o’clock news was over, and my guess would be that they would check on us one more time before they went to bed. I had to rethink my strategy.

         By this time I was fairly sleepy, and I hoped that it was enough that I would just drift off before I got too hot. No such luck. The hotter I got, the more conscious I became. Shortly I was wide-awake. It was now 10:30 p.m., and I had to figure out a way to stall until 11:00 or so, when mom and dad would be off to bed. I figured it was time for a bathroom run. I could drag that out for a bit, I was sure.

         I was just out the door and heading down the hall to the bathroom when mom’s head popped out from the kitchen doorway.

         “Where are you going?” she asked.

         “I gotta go… to the bathroom,” I answered. I don’t think I sounded very convincing.

         “Okay, in and out, your supposed to be asleep over an hour and a half ago, you know it’s an early morning, dad’s got to do your treatment before he’s off to work. In and out and back to bed, I mean it!” mom insisted.

         “Okay, okay, alright, sheesh…” I moaned. Well, that stall idea was a bust.

         The cool tile of the bathroom floor felt good on my feet, and I ran some cold water and wet my face to chill down a bit. I laughed to myself, realizing that my face was already wet from the mist tent. That was also true of a great deal of my pajama shirt, from a combination of sweat and water vapor. Actually, the irony was that being slightly damp; the little breeze coming in the bathroom window gave me a slight chill. This was a very weird night.

         After I got as much mileage out of the bathroom ploy as I thought I could get away with, I knew I’d have to head back to our bedroom. When I opened the bathroom door I found dad waiting for me in the hallway. “Mom said in and out, and she meant it,” he said. I just nodded and went past him into our room. I climbed back into bed and closed the mist tent front flap. The bedroom door opened slightly more, and I saw dad checking out that I was properly “sealed” in. Assured that the tent and I were properly positioned, he closed over the door again, back to its normal slightly opened position.

         I was back in the hothouse, and this time I knew that I couldn’t pull any fast ones any time soon. So I figured that I would just have to put up with it, “Offer it up to God…” as my mom would say. I looked over at Maureen, and I was pretty sure she was sound asleep. If she could do it, I thought, so can I. So I imagined what the cool fan would feel like, and eventually, somehow, I fell asleep.

         In the middle of the night, my father suddenly awakened me. I had no idea what was going on.  The roar from the compressor slowly increased as I came awake, but everything was confused, turned around. Nothing in the room was where it was supposed to be. It was then I realized that for some bizarre reason, I was lying at the bottom end of my bed. I had no idea how I got there, but however it happened, its main result seemed to be that it had gotten my dad real mad.

         “Jack, I’m sorry, but you have to stay in the tent, I told you,” dad whispered as he picked me up and put me back at the top of the bed and back in the tent. “No more of this now, enough,” he angrily insisted.

         “No more of what?” I asked, still not quite understanding what the hell was going on.

         “No more getting out of the tent!” he stated.

         “But I didn’t, I stayed in, really, I did what you said!” I answered, completely bewildered. How the hell did I end up at the bottom on the bed? I hadn’t a clue.

         “All right, we’ll talk about it in the morning, go back to sleep,” dad sighed, and went back out of the room.

         I was completely confused, and rather pissed off. I was in trouble for doing something I didn’t do, or at least I didn’t realize I had done. That was not fair, not in the least. I looked over in Maureen’s direction, and she was sound asleep. That pissed me off even more. I had no idea what time it was, but eventually, I fell back asleep.

         My mom awakened us the next morning in the usual manner, except this morning it was more like, “Maureen, Jack, time to… GOOD LORD!”

         I opened my eyes, confused again, and sure enough, I was back down at the bottom of my bed. I looked over in Maureen’s direction, and amazingly, she was at the bottom of her bed, too. We had both unconsciously, in the middle of the night, made our escape.

         Dad came in right after mom, having heard her gasp of amazement, to see what was going on. Maureen was just waking up, and I could tell she was as confused as I had been earlier in the night. By now this was old hat to me, so I was fine.

         “How did I get down here?” Maureen questioned. Mom looked at her, then to me. I just shrugged.

         “We didn’t do it on purpose, honest, mom,” I assured her. “I guess we really didn’t want to be in there, so in our sleep, we fixed it,” I surmised. It seemed like the most logical solution, and probably, the correct one.

         Dad just rubbed his hand over his face, began to chastise us, and then stopped in mid sentence. How could he get mad at us for something we did in our sleep? Truth is, he told me years later, if it had been him, he probably would have done the same thing. He just dropped the matter and Maureen and I started our treatments.

         Later I heard mom and dad talking in the kitchen before he left to work. “We’re going to have to figure something else out,” dad stated, “This will never work this way.”

         “Any ideas?” mom questioned.

         “I’ll think about it at work, and you see if you can come up with something during the day. We’ll work it out tonight when I get home.” dad answered. With that and a good-bye kiss, he was out the door.

         I was very happy. It seemed that my body had figured out a way all by itself to do what I was unable to do consciously. It was literally a get out of jail free card. I was sure that it would only be a matter of time until the tent idea was history. I looked at my mist tent and stuck my tongue out at it. Good riddance soon enough, I thought. Oh, if that were only the case.

         The next night was another hot one, but I was not too stressed. Mom and dad had been pow-wowing a good deal of the night, and I had yet to hear a concrete idea on how to keep us in the tents.

         Nine o’clock rolled around, and I had still heard nothing. This is fantastic, I thought. At the very worst, I’ll just wait until mom and dad go to sleep, and I’ll just move out of the tent to the bottom of the bed and sleep there. It’s actually closer to the window fan anyway. If mom and dad say anything the next morning, I’ll just say I must have done it again in my sleep. Not my fault, I did the best I could, really!

         Right on time, mom appeared at the door. “Okay, bed, let’s go, bedtime…” she announced. No dad today, that was good. Things were back to normal, thank goodness. Maureen and I got up to head down the hall to kiss dad goodnight, when we practically ran into him as he came in the room. Uh-oh.

         “Okay, we’re going to make sure you stay put tonight,” dad stated. In his hand he held my new nemesis: a roll of thick scotch tape.

         “What’s that for?” Maureen asked, a millisecond before I asked the same thing.

         “After we tuck you two in,” dad explained, “were going to tape the flaps on the tents shut.”

         “You’re going to TAPE us in?” I exclaimed. “How will we get out, we’ll be sealed in!” I moaned, trying to sound incredulous.

         “Oh, stop making such a fuss,” mom lightly chuckled. “It’s just scotch tape…”

         Oh course, I knew she was right, but I was hoping if I sounded desperate and scared enough, they might feel guilty and abandon the whole idea. No such luck. My folks knew me too well.

         After the required moaning and complaining, Maureen and I climbed into our tents, and dad proceeded to tape each side of our mist tents tightly; using several layers. Actually, I got more and more upset and depressed with each successive layer. At first, I had just been pretending to panic at the thought of being sealed into the tent, but now it was actually starting to slightly freak me out. I had never been claustrophobic before, but I was starting to feel that way now.

         Finally, dad put on the last layer of tape. The front flap was now less like a flap and more like a 4^th solid side. Of course, Maureen and my legs still stuck out under the flap, but now it had no give whatsoever. Wiggling out from under there now would be quite difficult, which I guess was the idea.

         If there is such a thing as well meaning, loving child abuse, I guess this would be it. But in fairness what else could my folks do? Back in those days, if the doctor said jump, people would say how high, and by the way, how much tape should I use?

         So that night, there was no “sail”, no ending up at the bottom of my bed. Instead, there was just a long, hot, fitful sleep. Although, when I awakened the next morning, I had managed to worm myself under the flap half way, with just my head still in the tent. My folks didn’t complain, however, since that was really the only part of me that had to be in there.

         From that day on, the tents became my familys’ evil nemesis, but one that, unfortunately, we had no choice but to put up with. In the summers they were a nightly sauna, ruining sleep and damaging mattresses. In the winter, thanks to my apartment building’s often-finicky boiler, they sometimes became damp iceboxes.

         I can remember waking up many a winter morning buried under the covers up to the neck and shivering from having a cold, wet head. My damp hair was often plastered to my skull, and the trip from the bed to the bathroom and back again was often a frigid jog. On those mornings I actually enjoyed my treatment, as the towel padding and the clapping would serve to warm me up.

         And then there was vacation! My folks still tried to get all of us out of the city for a few weeks each summer, and head up to the Catskill Mountains and visit our familiar home away from home, East Durham, near the village of Catskill. Of course, we avoided certain places, like good old Carson City and Indian Village. We all felt that one case of Encephalitis was enough for one lifetime, and although we knew St. Jude had my back, we all figured we’d not push our luck.

         But the difference now was as we went, so went the tents. And although thanks to very kind and understanding neighbors we had all adjusted to the bizarre life of roaring air compressors and plastic hothouses at home, that would not necessarily be the case in a rented cabin in the mountains.

         The first problem was we had to take the entire tent set-up apart, pack it all up, along with all of our masks, drugs and various respiratory contraptions, and re-assemble it all up again when we arrived in the mountains.

         But that was just the beginning. We were often left with a moral quandary: do you let the people who are renting to you know you are coming with a mini respiratory ward? Or do you hope against hope that you’ll get away with no one noticing the incredible compressor racket coming from your cabin? In the deep still of the peaceful mountain air, all you could say was good luck.
         So most times we split the difference. My folks told the owners of the various mountain cabins where we stayed about our health condition, and that we needed certain “equipment” for the maintenance of our health. Of course the owners would have no problem with that, how could they? Sick kids want time in the mountain air, what could be better?

         I often wonder what those owners actually thought that first night when we fired up that sucker. But I never found out, as no one ever had the courage to throw us out, however much as they might have wished to.

         Just like everything else in our lives, after awhile, even all of this became routine. Treatments for us were just a normal morning event; mist tents were just funny looking beds. If all you know is what you have, then what you have is all there is. Normal is just a state of mind; it has no solid basis in reality. That’s how my family lived its life, because we had no choice.

         A couple of final mist tent notes. After enduring the monster compressor for a few years, technology rolled around and came up with something called an ultrasonic nebulizer. In laymen’s terms, that was a misting machine that made no sound whatsoever, except a slight gurgling noise as the water ran into it. Suddenly, nighttime became silent again. It actually took a little time to get used to, but shortly we all, (including the neighbors), could get a peaceful night’s sleep again.

         Lastly, you might remember in the last chapter that I said how sad my mother was that her children would have to sleep in those tent contraptions, possibly for the rest of their lives. But it didn’t turn out that way, and I would explain later. So let me do so now.

         Six years or so after we started using the mist tents, the word came down from the Cystic Fibrosis Foundation, and the word was stop using the mist tents, immediately.

         It seems that a bacteria named Pseudomonas aeruginosa causes the most common occurring form of lung infections in CF patients. It is actually responsible for most of the death of people with CF.

         Pseudomonas aeruginosa grows best in a moist environment, like the inside lining of a lung. But let’s think, where else might there be an excellent, moist environment? One that had lots of nooks and crannies, in things like, say, tubes and hoses? That would be really bad, except thank goodness there was no way for those bacteria to become airborne, so it could be unwittingly breathed in by a susceptible CF patient. But wait; didn’t the mist tent constantly PUMP mist in a CF patient’s face all night long?

         So yes, someone finally figured out that unless you constantly sterilized every little component of the mist tent on a daily basis, (which of course, was practically impossible), they were doing more harm than good.

         So just like that, the tents were gone. I don’t even remember what happened to them, it seems like they just vanished, like in a puff of smoke. My hope was that they went back to the hell that they had come from.

         And that is why to this day, I try to live my life as kindly and as thoughtful of others as I can. Because if I don’t, I know what will be waiting for me on the other side.

         And believe me, eternal rest will then be tough to manage. It’s bad enough I’ll already be dealing with that all that heat, but I have a bad feeling it will be a particularly moist heat. Plus,  I’ll have to put up with that constant, roaring noise.

Chapter Five: Aluminum Tubes and Carpet Insulation

        The last day of Kindergarten was completely lost on me. There was some sort of little ceremony, congratulating the class for finishing our “studies” (which was rather amusing, since back in 1964 kindergarten was really just glorified babysitting), and I think they gave us something to take home, like a diploma. Maybe it was an art project we had all done. Whatever it was, I paid almost no attention. My mind was elsewhere.

         My focus was back at home, where the new tents were being delivered that day. Nothing else mattered. I looked forward to the event like it was a second birthday; it was that big a deal.

         One of my favorite things to do when I was young was to play “fort”, where my sister and I would construct our own citadel in our living room. The fortress mostly consisted of taking the knitted cover my parents had on the couch, pulling it up in the middle and propping it up with some object, like a wiffle ball bat. Then we would gather up all our “stuff”, such as playing cards, storybooks, a favorite toy animal friend, and of course, dad’s flashlight, and secret ourselves away for the afternoon.

         In truth, this was almost always a Sunday afternoon activity, and mostly a fall or winter exercise, as it would get way too hot in the fort on a summer’s day. But the particulars of the what and when were currently lost on me, because when I got home I would no longer have to worry about mom or dad getting mad at Maureen and I for stretching their couch cover all out of shape in the construction of our fortification. Today I was getting a REAL tent, and one that was just my own, to boot.

         I had already staked out a spot in our bedroom to set my tent up, one of the few bare spots on the linoleum floor in the room. I told Maureen as much that morning. Where Maureen would put her tent was of no concern to me; that was her problem. As far as I was concerned, I had called it; I had dibs.

         At noon the last bell of the school year rang, an early dismissal, the same as it had been for the past few days. And of course that day there was a mad dash for the doors, as the frantic joy of summer vacation exploded throughout the student body. I was happily excited too, but for my own secret reason. Treasure awaited me at home; I was sure.

         Maureen and I got back home as quick as our feet could carry us. I lead the way, constantly urging my sister. “Move faster, come on, hurry up, and hurry!” I yelled behind me as I ran. She couldn’t understand my frenzied pace, as far as she was concerned; the tents were going nowhere anyway. She just didn’t get it, I thought. It’s probably because she’s a girl, I advised myself. A boy would understand without explanation, I was sure of it.

         Finally we arrived home. We always rang the doorbell; mom felt we were still too young to carry our own keys. So when she answered the door, I of course practically pounced on her. “ Did they come? Did the tents come?” I asked, breathlessly. Rather ironic, when you think about it.

         “Yes, they delivered them just about an hour ago,” mom explained. “I had them put them in the bedroom. I was just trying to figure out…”

         “I want to put mine together!” I interrupted. I had seen what a tent was supposed to look like in countless cartoons, from Popeye to Yogi Bear to Bugs Bunny, and I was not sure if mom was aware of all the complex nuances that were involved. Of course I didn’t use those exact words, but you get the idea.

         “You can help,” mom stated, “but this is not a toy, this is to help with your breathing. This is serious stuff, so you have to treat this as…” but it was too late, I was already gone and down the hall.

         The sight that greeted me was not what I expected, not even close. What I saw on the floor was a bunch of open cardboard boxes with some sort of silver tubes inside wrapped in plastic. On my bed was another open box with what looked like big clear shower curtains folded up inside of them. Another plastic bag had white tube-like things inside that looked like snakes. Lastly was another couple of boxes with pictures on the outside of some sort of machine hooked up to an upside down glass bottle hanging from a metal wire stand. The machines resembled ones I had seen when looking around at the CF center, while mom had been talking to the doctor. Those machines kind of scared me back then, and now they were sitting on the floor of our bedroom. This was no good at all, I thought, this was a big gyp, of the worst kind.

         “These are the tents?” I asked mom. “These are not tents, that’s not what tents look like!” I just stood there. I would have been beside myself with righteous anger and indignation if I hadn’t been so completely puzzled by what I saw. What were these things?

         “These ARE the mist tents,” stated my mom. “What were you expecting, tents like you would go camping in or something?” mom asked, and slightly laughed. I just stood there, with my mouth tightly closed. Mom then looked at me and slowly realized that was exactly what I was expecting. “Oh, Jack, no, no, no, where did you get that idea from?” mom asked.

         I gave that some serious thought, and slowly realized that no one had said anything like that to me. I guess I just heard we were getting tents, and made up the rest in my all too vivid imagination. To say I was now disappointed would be a gross understatement. It would seem that nothing about this CF stuff was going to be any fun whatsoever. Like I said, a huge gyp.

         Mom walked around me and, seeing my expression, gave me a hug, and I let her. Maureen just stood in the doorway, looking at me with a mix of concern and bewilderment. I guess she had a better idea what was to be expected when we got home, because she didn’t look surprised by our delivery at all. I felt a bit stupid by now, actually.

         Mom gave me a little pat on that back, and then she asked, “Do you still want to help me put these things together? You could be a big help.”

         I knew she was just trying to make me feel better, but I went along with it. Maybe it actually would make me feel better. It all sort of looked like a big erector set, actually. I liked erector sets.

         I sat down on the floor next to some of the boxes. I first grabbed one of the ones with the silver tubes. I was surprised how light it was. They were the aluminum frames of the mist tents, separated into J-shaped sections, which locked together with drilled holes and spring-loaded pins. There was an assembly diagram included in both boxes, but I didn’t need those, I thought. I set about putting the first one together.

         Doing something like this always made me feel better. I always liked to tinker, as my mom would say, I was forever taking things apart to see how they worked. This led to many objects in our house no longer functioning. I was great at taking things apart, you see, but not so great at putting them back together again. My parents still own a lovely decorative clock that is only correct twice a day. Other than that, it might as well be a doorstop.

         The first attempt at the frame resulted in half the parts being pointed the wrong direction. The next time I figured I’d actually look at the instructions, and in a few minutes, mom and I had assembled the first frame. Mom, Maureen and I had to move the mattress on my bed to put it in place, as half of the frame sat between it and the box spring. It kind of did look like a tent, I now observed; maybe this won’t be so bad after all.

         The second frame went pretty fast, as we now had a better idea what we were doing. Maureen just watched, having no interest in joining in with the assembly fun. That was fine with me; so far this was the most fun I had had in all this CF stuff.

         The next thing to do was to put the plastic tents on the frames. We took the plastic bags that the tents were in and very carefully opened them (as they had numerous labels plastered all over their outside warning us NOT to use a sharp object to open the bags, giving the customer no credit for brains whatsoever), and carefully unfolded them. They were thick, heavy, clear plastic, and smelled awful, a thick petroleum-like odor. Shortly the stench made whole room smell like a gas station. Mom already had the fan on in the window, but got an idea and quickly turned it around to blow the smell out of the room. After being unfolded a while, the smell started to dissipate, but by now Maureen, mom and myself all had a slight headache.

         Going by the enclosed instructional diagram, mom secured the tent over the frame, pulling it down tight on three sides, with the front side being a loose flap that could be raised and lowered.
         On both sides of the tent were holes, fitted with elastic in their middle, allowing a tube to enter the tent from either side, depending where you set up the mist-producing machine. The tubes were the white snakes I had seen earlier. I pulled them out of their bag, and began to annoy my mom by blowing into them, producing a truly horrid sound. She quickly took them away, much to my chagrin.

         Lastly, mom opened the boxes for the mist-producing machines, technically called Cool-Mist Humidifiers. The original ones we got in 1964 could only work if they were attached to the beast of a compressor that my dad had brought home on the subway the day before. It had valves on it that allowed it to run both humidifiers simultaneously, and so mom got it out of the hallway where my dad had left it and dragged it between our two beds. I wanted to help with all this, but was forbidden by mom, as all this stuff was very heavy and a bit dangerous.
         The mist machines were mostly pre-assembled; the only part we had to worry about was attaching them to the compressor with some rubber tubing, and connecting a large glass bottle that was attached to each side of the machine. That bottle had to be filled with water and then hung upside down from a wire stand, where it was then hooked up to the machine through a rubber hose. Again I was told hands off, as the glass bottles, once filled with water were quite heavy, and if dropped, could really hurt someone. Not to mention the fact that we had no spares to replace them with if they got broken. So I sat on my bed and glumly watched.

         Finally the tents were completely set up. I gave them a good once over, and drew my final conclusion: sadly, they were not going to be fun tents. The first big problem was that they were clear plastic. Anyone who knows anything about what makes a tent cool knows that its most important attribute is the ability to use it as a hiding place. Clear plastic defeats that purpose entirely. Next was its size. Although it covered the top half of the bed, it was only a twin bed, so that was hardly big enough to be any fun whatsoever. You could bring a couple of things in there with you and that was about it. Nope, as far as I was concerned, the gyp was complete.

         Mom and Maureen stood back and looked at our new tents too. Maureen had a twisted scowl on her face; mom’s was just blank. “They’re ugly… I think they’re ugly, Mom,” Maureen declared.

         “And they’ll stink at being fun tents, you can see right into them,” I added.

         Mom just stared. Years later she told me all she could think about was how sad she was that her children would have to sleep in those contraptions; possibly for the rest of their lives. But thank God it didn’t turn out that way, as I’ll explain later.

         “Okay,” mom sighed, “let’s try them out. You two get in your tents, and I’ll turn on the compressor. If we did everything right, there should be mist coming out of the tube stuck in the sides of the tents.” Maureen and I jumped in, and mom folded down the tent flaps.

         I immediately noticed a few things when I climbed in. Every sound inside was weird, muted, muffled. I also noticed everything looked weird through the plastic, like gazing into a funhouse mirror, except one you could see through. And almost immediately after that, I noticed something else; something would turn out to be the biggest factor of all: the inside of the tent was kind of hot.

         I was about to say something to mom about that when she turned on the compressor. The noise was incredible, and the vibrations the machine threw off actually made my bed vibrate, as they did everything else in the room. I noticed, even through the thick plastic of the tent, the wind-up clock on the little table between our beds began to slowly move around.

         A second or two later, mom loudly asked Maureen and I “Do you see mist coming out of the hoses?”

         “What?” we both answered, almost simultaneously.

         “IS THERE MIST COMING OUT OF THE HOSES…?” Mom yelled.

         “YES!” we both yelled back.

         After a minute or so, mom went over to the compressor and turned it off. The sudden absence of that amazing roar-sound was almost jarring. It was like a physical presence in the room that had suddenly vanished.

         “Jesus, Mary and Joseph, God forgive me…” mom said as she sat down on the end of my bed, almost seeming to gather her composure. Maureen and I flipped back our tent flaps and joined her. Mom had earlier turned the fan back around, and I realized how good it felt when the breeze from it hit me. Obviously, it could not penetrate the tent. Again, I was about to mention that potential problem, but Maureen spoke up first.

         Wow!” she exclaimed, “That thing is really loud! I mean, really, really loud!”

         “Yea,” I added for emphasis, “Really, really, REALLY loud!”

         “Yes, I could tell that,” mom muttered, and just stared at the contraption. “We got to do something about the vibrations,” she thought out loud, “or God help the McGuires downstairs…” she concluded.

         We lived on the 6^th floor, and the McGuires were our downstairs neighbors. All of their kids went to St. Michael’s school, the same as Maureen and I, and we both had kids from their family in our classes. I hadn’t thought about it until mom brought it up, but the fact was if our floor was vibrating, that meant the McGuire’s ceiling was doing the same thing. And I had to believe that tremendous sound could easily punch through a good amount of wood, brick and plaster. Our problem was about to become their problem, too. But there was nothing we could do about that today; it was too late for that. Mom and dad would have to figure something out, that much was for sure.

         I finally grabbed my opportunity to make my point. “Hey Ma, you know, it’s really hot in there… you can’t feel the fan ‘cause of the plastic. How are we gonna’ fix that?” I innocently asked.

         Looking back, I think I actually believed that my mom, or if not her, most certainly my dad, would have a solution for that problem. That’s how I know I was very young, because I was still at the age when you believe your parents can fix anything. I was about to discover that sadly was not the truth.

         “Well, ah, I’m not sure, huh, let me think…” my mom responded. I patiently waited for the solution.

         Maureen added, “Yea, it was really hot in mine too, so I guess we’ll have to leave the flaps open at night, right mom?”

         I liked that answer, and nodded my agreement. We both waited for my mom to join in our conclusion. But she was not joining in, she was just sitting quietly, and I could see she was thinking very hard, but about what I couldn’t guess. What she said next would change my life in a very bad way for years to come.

         Mom began quietly, “The doctors told me that both of you had to stay in the tents every night.” Maureen and I listened intently, so we didn’t miss mom’s solution.

         She continued, “And it is very important that you breathe the mist from the machines in to keep your lungs moist, because that will make the stuff you have in there easier for you to get out. The mist has to be very concentrated to be effective, so that means we will have to keep the flaps closed on your tents all night long.”

         Maureen and I waited for more; but that was it, there was no more. The other shoe never dropped, because there was no other solution. But we couldn’t let it end there.

         “But ma,” Maureen said quietly, “It’ll be really hot at night in there…”

         “Too hot to sleep, WAY too hot! I don’t like to sleep when I’m hot…” I added more urgently.

         “I CAN’T sleep if it’s hot, I’ll be up all night!” Maureen now loudly stressed.

         I was about to take my turn at exasperation ping-pong, when mom stopped us both in our tracks. “Look, I’m sorry,” mom declared. “But this is not up for discussion, the doctors said you have to do this to stay healthy, and we’re going to have to do this. The mist should come out cool, and after a while, I’m sure it will get better in there. I want you both to try to make this work, okay?”

         I may have been quite young, but even at that age I think I was very good at reading my mother. I could tell by her expression that it was really bothering mom to say all this. I also think she knew that the cool mist thing was a bunch of garbage, and I further think she knew neither Maureen nor I were buying any of it. But mostly I could also tell she wished more than anything that she did not have to put us in these things. The stress on her face said more than any words could. Her expression made me hold my tongue.

         I think Maureen was on the same page as me, because we looked at each other, and then we both shut up. Maureen just nodded and said, “Okay, Ma, we’ll try.”

         “Yea,” I unenthusiastically added, “maybe it won’t be so bad. The mist will make it cool, like you said.” Mom just looked at the two of us, sighed, and then gave us both a simultaneous big hug.

         “You’re good kids, both of you,” she said quietly. We all held the hug for a while; I think we all needed it.

         When dad got home from work the first thing he did was go right to our room, where Maureen and I were watching Bugs Bunny cartoons after our treatments, to look at the tents. Mom had filled him in on the day’s events when he called her from the office around 3:00 pm, as he did everyday. Still, I could see he was mildly shocked when we saw our room. I guess it’s not everyday you suddenly see your children’s bedroom transformed into a pseudo hospital ward. I could understand his stoic expression as he stood in our door, but I just smiled at him and went back to watching TV. I had been looking at the tent set-up all afternoon, and by then I had kind of gotten used to it, actually.

         Mom shortly joined him, and then she went over to the big compressor. Maureen and I watched as mom turned it on. Dad visibly winced when it sprang to life, while Maureen and I just sat, since there was now no way to hear anything that Bugs, Elmer or Daffy said. After a moment or two, mom shut the beast down.

         “Good Lord,” was all dad could say. Mom looked at him, and he shook his head.

         “You see what I was talking about?” mom asked.

         “Yea, I see, I see,” dad replied. “We’ve got to figure out something to do about it, or they’ll want to kill us, and I wouldn’t blame them,” dad added.

         “Who, the McGuires?” Maureen asked both of them.

         Dad replied, “Yea, the McGuires. I’ve got to buy something to cushion the sound, block it off somehow…”

         “Gooood Luck!” I chimed in, sarcastically. Dad shot me a annoyed but tired look, and I shut up. My timing was often less than perfect.

         “I’ll go downstairs after dinner, and explain what’s going on,” Dad said. Mom nodded in agreement.

         “They might have a suggestion, too, mom added. “Couldn’t hurt to ask.”

         “Yea,” dad concluded with an exhausted sigh, “After dinner I’ll talk to Dee or Jimmy… they should know what the deal is.”

         Mom and dad left the room, dad to change out of his good clothes, and mom to put dinner on the table. Maureen and I went back to Bugs, but out of the corner of my eye, I could see the compressor sitting between our beds, crouching like a dangerous beast. For the first time, I was starting to hate that thing. It had been around for less than a day and it was already causing trouble; and I had a feeling that it was far from finished.

         True to his word, after dinner dad went down to talk to Jimmy and Dee McGuire. If for no other reason, to explain why the ceiling over their children’s beds would, at least for this night, possibly more, sound like it was below a construction site. He was gone awhile, and I could tell mom was nervously watching the clock as she did the after dinner dishes. I hung around the kitchen too, I was curious as to what the McGuires were going to say.

         Finally dad came back. “They’re being real good about it,” dad explained to mom, who by now was putting the dinner dishes away. “Jimmy suggested that he might have some foam insulation at work, like they put under carpet, and maybe we could try putting that under the machine. It sounds like a good idea to me, if it’s what I’m thinking about.”

         Mom agreed. “Okay, that sounds good. I was thinking maybe for now, what we could do was to take a towel, a big one, and fold it over a bunch of times, and put that under the thing.”

         “It’s worth a try. Anything’s gotta be better than it being on the bare linoleum floor,” dad concluded.

         Mom got one of our old big towels, and folded it up several times. Dad lifted the compressor and mom put it underneath. They then turned on the monster (as I had now begun calling it), and it roared to life once again. The sound was still tremendous, but better; that much was clear. At least the shaking of the furniture and the floor vibrations were less than before. Mom and dad let the machine run while dad went down to the McGuires again, to see how if the towel was helping at all. When he returned he wasn’t smiling, but at least he wasn’t frowning. “It’s better, but you can still hear it,” dad stated, “It’s still pretty loud, I mean, compared with normal, I guess.” He let out a deep sigh. “Best we’re gonna do tonight. We’ll see what Jimmy can get for us tomorrow. In the mean time, we’ll see if we can come up with anything else.”

         Mom nodded in agreement, and went over to the monster and turned it off. The jarring presence left the room, and we all began to once again relax.

         Well, for the most part. All I could think about was tonight, our first one in the tents. I noticed it was a mildly hot night, and that was while I was sitting in front of our window box fan. I was not looking forward to bedtime, but it was approaching fast, and I had a feeling it was going to be a long night.

Chapter Four: Towel Padding and Stogies

Our bedroom door opened, and a shaft of light from the hallway pushed itself into the room. “Maureen, Jack, time to get up,” said mom with enough volume to wake us from our slumber. This was our normal alarm clock, a gentle but insistent vocal prod to rise and shine. I squinted awake and immediately noticed something different. It was still dark, very dark.

“Ma… too early…” I mumbled. Maureen just made a “harrumph” sound and flipped over on her other side, away from the hall light.

Mom just stood there, and more loudly repeated herself.

“This will be your new wake-up time, so come on, and get up! Dad and I have to start your… treatments,” she said.

Treatments. That’s when they started, not with a bang, but with a way-too-early whimper, and they have been the bane of my existence to this very day.

It was obvious mom was not going anywhere, so finally I relented and headed for the bathroom.

Dad was already in there, shaving. My eyes were still adjusting to the light, but I could see he was already half dressed, in his tee shirt and boxer shorts, so he and mom must have been up for a while before Maureen and I. It was okay for the two guys in the house to share our bathroom, and so I did my business while he toweled off his face.

“Okay, I’m going to clap you, and mom will do Maureen.” dad explained. I just nodded. I was still not quite up on what this clapping stuff was all about, but I was too sleepy to ask questions, so I yawned and headed back to the bedroom. Maureen passed me in the hallway, heading to the bathroom for her turn, and dad went back to their room, to put on his socks and give Maureen her privacy.

I wandered back to my bed and just sat on it in the half-dark, the only illumination coming from the hall light. I hunched cross-legged, eyes closed, wanting more than anything to just go back to sleep. On the table between Maureen’s bed and mine sat a wind-up alarm clock, which glowed a dull iridescent green, and I squinted out of one eye at its dial to figure out the time. I had recently learned how to tell time, and had asked for the clock so I could practice. The little hand was on the ten, and the big hand was on the five. That’s ten minutes after five. Ten after five? That had to be wrong, I mustn’t have this figured out yet, and I chastised myself. That would mean mom got us up at five. That would be nuts.

Maureen soon returned from the bathroom, and she shuffled over to her bed and mirroring me, sat cross-legged on hers as well. The sound of our still buzzing widow fan was lulling us both back to sleep.

Then mom came in with the two facemasks, pre-filled and ready to go. She propped one of them on the table between our two beds, and then handed the other to me. “Dad has to be out of here before the rest of us,” mom stated, “so you have to go first.”

I was way too sleepy to argue, I just pulled on the mask and waited while mom turned on the compressor. Soon the room was filled with another buzz, and my face felt that now familiar cold mist on my cheeks. Out of one corner of my eye, I noticed Maureen had submitted to the sandman, she had plopped over on her bed and now lay in a fetal position, sound asleep.

I think I might have dozed sitting up, because the next thing I remember was my dad taking the mask off my face. In retrospect, I doubt I got too much of the medicine into me most mornings, as often I would doze that way, and I can’t imagine taking very deep breaths while I was mostly asleep. My parents were certainly not getting their money’s worth from me, and I certainly didn’t care. Dad then went out to the hall and got something out of the linen closet.

Maureen was now roused from sleep again; it was her turn with the compressor. She moaned a protest, but like me quickly submitted as mom put the mask on her face.

Dad now came back into our bedroom, clutching a towel in his hand. “What’s this for, dad? I asked as he threw the towel over my shoulders.

“It’s to pad you a little bit, so the clapping won’t hurt.” dad explained. I just grunted.

“Alright, here we go,” he stated as I shifted on the bed. “We’ve got to do a bunch of different positions, so this is going to take a while,” he said. “The first one is easy, just sit with your back against me on the bed.” I complied. Dad positioned the towel again and began whacking on the upper part of my chest with both hands, first one, than the other, in a quick beat of one two, one two.

“Ow, not so hard!” I complained, and I was suddenly no longer sleepy but now wide-awake. Pain will do that.

“Sorry,” dad apologized. “This is going to take some time to figure out how hard to do this, okay? It’s got to be hard enough to shake the mucus stuff loose,” and then gently dropped his voice. “But I don’t want to hurt you,” he added. “I’ll try softer.” Looking back, I’m sure I was quite unaware how hard and weird this had to be for my parents. They had to whack us, fairly hard, over and over; for more than a half an hour at a time, twice daily, yet they were doing it for our own good. Not a normal parent-child relationship, that was for sure.

After a while, I noticed dad fell into a rhythm, a sort of a bang-bang-BANG-bang-bang-bang-BANG, and repeat. Like everything else, in a bit, even this started to feel normal. I started to drift off again.

Then he suddenly stopped. First because time was up, he had been watching our little wind-up clock from the corner of his eye, and he was supposed to clap for about 3 minutes in each position. Secondly it was from just being too tired to continue. Make no mistake; this was a workout for both my parents, not easy to do, and especially not first thing in the morning. I was awake again instantly.

Dad explained the next step. “Ok, now what we have to do is you have to take a deep breath, then put your lips together, like your going to blow up a balloon or something, and blow out. I’m going to be putting my hands flat on your chest and shaking you, to make vibrations. That’s supposed to help shake the stuff loose.” I nodded. This all made sense, sort of, and I trusted my dad, and figured at the very least he knew what he was doing.

I took a deep breath, pursed my lips, and blew. Dad pushed down and me and shook me very fast, and to his and my surprise, suddenly I started to laugh. First off, it kind of tickled, and secondly the whole thing suddenly struck me as absurd and very silly.

“What the heck are you laughing at?” my dad quizzed. At first he looked genuinely annoyed, and gradually as I continued laughing he looked more and more perplexed.

“I don’t know... it’s just… funny,” I sputtered, and I continued to laugh. Maureen was now looking at me, I noticed, and even in the dark room with her mask on I could tell from her eyes that she thought I was loony. This made me laugh all the harder. Next thing I knew, all of us were laughing, including finally my dad. This was all completely ridiculous; there was no denying it.

Mom stuck her head in the door, wondering what was up. “What’s going on in here? What’s so funny?” mom asked.

Dad just smiled and explained, “Your son is nut.” That was all I needed, now I couldn’t stop.

Mom just smiled and shook her head. You’re all nuts.” she commented, and went back to the kitchen.

Finally, my dad said, “Okay, enough, enough, you’ve got to cough now, let’s get some stuff out, stop fooling around.” I finally got myself under control, and dad handed me the mixing bowl to cough up into as he shook his head. Actually, all the laughing helped, in more ways than one. I think it shook a bunch more of stuff loose to cough up, and it relieved a bit of the weirdness. It was the best part of the treatment.

By about the third position, mom came back in and took Maureen’s mask off. She then sat with her back to mom and with a towel on her shoulders, and then mom started clapping Maureen. Now in the half-light from the hallway, mom and dad clapped away, and Maureen and I half-napped between sides. I imagine if you walked in on the scene and didn’t know what was going on, it would look like some crazy ritual punishment was being doled out on the two of us.

Other positions followed, some with me lying on my stomach, others on my back and some on my sides, with pillows under my legs propping me upside down. Each was followed by another round of the shaking and blowing thing, but by the third side or so, it became less funny and more annoying.

Mom and dad did the best they could, but as I said, this was not easy. In some of the positions they had to bend over us, and after a while, their backs would just give out. In a couple of days, they both were sore in places they were never sore before, but I bet my parents had the strongest backs and arms of any kids in my school. Now, with both of them in their 80s, my dad has back problems, and my mom has a damaged rotator cuff. It’s not a stretch to guess where those injuries came from.

After about a half-hour of this “fun”, we had to go back to the masks again, to inhale an antibiotic. We took turns again, and since I was done before Maureen, I went first. This inhalation smelled different, kind of sweet. Not nearly as bad, which was a relief.

When it was done, I remember thinking to myself “Well, at least THAT’S over.” It still had not sunk into me, that this routine would be repeated that evening, and the next day, and the day after that, basically forever. Forever is a tough concept to wrap your head around when you’re 5 years old.

By this point the sun was well up, and I better understood why we had to get up so early. All this stuff took a lot of time to do, especially since all of us were learning it as we went.

After Maureen was done with her antibiotic inhalation, things went pretty much back to normal for the rest of the morning, with the exception of breakfast with the spoon full of applesauce and yuck. I knew I would never get used to that taste, and I never did. Just as well it tasted that bad, actually, as it was a great incentive to learn how to swallow pills - which I eventually did - but more on that later.

Mom had made our lunches while dad was clapping me and Maureen was getting her first inhalation. Mine was the same as it was every day, 2 slices of Oscar Mayer bologna on Wonder bread. It was the only thing my mom could be guaranteed I would eat. She would also give me a banana, because she said Dr. Knownothing had told her years earlier that I needed the potassium, whatever that was. I was supposed to eat 3 of them per day. What I didn’t tell mom was then one she gave me for school every day I promptly threw in the garbage as soon as it was lunchtime. I had eaten so many bananas by this point that I hated the damn things. At least when I was out of mom’s sight, I could take matters into my own hands; and oh boy, you bet I did. To this day I still can’t stand bananas.

“Hey ma,” I asked, “How are we going to do the spoon thing at school?” It was a good question, one my mom probably had not considered. I kind of guessed the answer, but still hoped for the answer I got.

“Well, I guess for now, we’ll have to skip doing it at school. At least until you can swallow the pills on your own,” she answered. That’s was the answer I was hoping for, but the victory was less sweet that I expected, I could see it upset my mom. She realized that lunch was an almost completely wasted meal, as we would get little benefit from it without the enzymes. Another reason to have to learn to swallow the darn pills. Great, I thought.

Breakfast for me was always the same thing: Corn Flakes (with a banana cut up on top of it, of course) and a glass of milk mixed with chocolate Quik. I was a fussy eater, if you couldn’t guess by now. We usually all ate together, which was a good thing because mom and dad got to plan out their day while Maureen and I mostly just listened.

“When are you going to call that place that has the tent things?” dad asked mom.

“Mist tents…” mom corrected. “I’ll call them after 9 or so, I doubt they’ll be open before then.”

“Will they deliver them, or do they expect you to lug them home yourself?” dad continued.

“I think they said they’ll deliver them, mom added, “but I still have to go there and give them a deposit, you’ll have to leave me a check… I don’t know how much it will cost.”

“Well, let me know…” dad said, and rubbed the back of his neck. “I’ve got to make sure we’ve got enough in the account.” Mom just solemnly nodded.

All this talk about delivery and money was lost on me, but I could tell that the money part was making my parents act funny. If I were to guess, I’d say it was making them scared, and that was an emotion I had seen on their faces way too much lately. Money was always tight, and all this CF stuff was making it all the tighter. My parents looking that way scared me too, and made me angry at the same time; angry at this whole CF thing. But it’s a tough thing to be angry about, because in the end, there’s no one to blame, and you just end up frustrating yourself.

We finished up breakfast, and Dad was off to work. “Give me a call later, and let me know what’s up…” dad said as he gave mom a peck on the cheek and he headed for the door. “I’ll pick up the other machines at the hospital after I get out of work.” He said. “Maybe I can get out early, at least I’ll try.” Finally he added, “Be careful…” but beyond that, he didn’t know what else to say. Mom nodded, and he was out the door.

“Get dressed, you don’t want to be late,” mom said to Maureen and I. I was glad to be off to kindergarten, it made me feel more like life was back to normal. School was almost over for the year, as it was mid-June, and the only thing I didn’t like about school was it was getting quite hot in the classrooms. By the afternoon, even with all the windows open, my room was quite steamy. Of course there was no air conditioning back then, especially in the school, where you were lucky if there was a fan. We had none in our classroom.

I hated being hot; that sticky, sweaty feeling you get, like you’re drenched under your clothes. Thank goodness we had that nice fan in our bedroom, I often thought as I sat sweating in class. That was true especially at night, or else I believed I wouldn’t be able to sleep at all. That theory would be put to the test sooner than I imagined.

I put on my school shoes, as did Maureen, and mom gave us both notes to give to our teachers explaining our absence from school the previous day, the day of our trek to the wilds of Columbia Presbyterian Hospital. We grabbed our lunch boxes (mine was a neat Hot Wheels one), gave a kiss to mom, and we were out the door. At the beginning of school, my mom used to walk us both the 4 blocks up to the schoolyard, but by now, Maureen and I just went by ourselves. Parents today often have a hard time imagining that, but it was the norm back then.

Mom told me years later she made her phone call to the respiratory supply store, and discovered that they were on the far west side of midtown Manhattan. Since no subway went over that way, the best she could do was take the 7 train to Times Square in midtown, and either grab a bus or walk the rest of the way. With the address in hand and the check from my dad, she headed off to the supply store.

After a hot subway ride, she came up from the subway in midtown and started to walk. She was about 4 months pregnant with my sister Helene at that time, and although she was still hardly showing, it took more out of her than sometimes she was aware; she was hot and already tired. The problem was the further west she went, the fewer people she saw. The part of Manhattan the store was in was mostly warehouses, and at first she had trouble finding it. On several occasions, she passed some rather strange looking characters, which all seemed to look her up and down, probably wondering what she was doing in that part of town. Finally, she happened upon a storefront with a small sign leaning against the corner of its front window, and she knew she had finally found the place. A small metal bell dinged as she opened the door.

From the way she described it, the interior resembled more of an auto parts store than a place for medical equipment. It was dark, with boxes of supplies and equipment stacked up in piles all around the floor. There was a long counter with a cigar-smoking guy standing behind it, and she could see rows and rows of metal shelves packed tight with all sizes of cardboard boxes, plastic bags and metal bins behind him.

“Help ‘ya?” the bald, cigar-smoking man behind the counter asked my mom, and then promptly hacked up a raspy cough. She commented to herself it was almost amusing that he was puffing away on a smelly stogie sounding like that, while working in a respiratory supply warehouse. He may be a customer one day, if he doesn’t watch his Ps and Qs, she thought.

“Yes, I hope you can, I was sent here by the Cystic Fibrosis Center at Columbia Presbyterian…” mom began.

“You the lady who called this mornin’? The one with the two kids?” Stogie-smoker interrupted her.

“Yes,” my mom continued, “I was told that this where you can pick up…”

“Yea, we got your stuff all pulled out already, two mist tents, right?” Mr. Stogie smoker interrupted again.

“Yes…” mom replied, doing her best not to show how annoyed she was getting, and hoping she would be able to finish a sentence this time. “I believe you needed a check for a deposit on the…”

“Naw, that’s okay,” said Mr. Stogie, interrupting again. He looked my mom up and down, giving her the once-over. My mom immediately felt uneasy from his stare, but did her best not to show it. “You look like a nice lady, we don’t need a deposit, and your husband’s got insurance, right?”

“Well, yes, yes he does, but I was told,” mom valiantly attempted to get a word in edgewise, “that I had to come here and leave you with a deposit…”

“Naw, don’t worry ‘bout it, sweetheart, let the insurance company sort that sh.., I mean, that stuff out. Just sign these invoices here,” he continued, and pulled several yellow and pink sheets out from under the counter. Then he winked at her. “No problems for a nice lady like you,” he added.

By this point mom was completely perplexed and truly pissed off. If all she had to do was sign a couple of pieces of paper, why the hell did she have to come all the way over here to this hole-in-the-wall store in the middle of nowhere, and deal with this cigar chomping, greasy pervert who seemed to be making a pass at her? But always believing discretion is the better part of valor; she kept her mouth shut and signed the papers. Mr. Stogie smiled a lovely tobacco-yellow smile. “Just sign here, and here, and here, sweetie,” he purred as he flipped through the sheets.

She was assured that the tents and the equipment that came with them would arrive by the next day, and then she got out of there as fast as she could. “Take care now, sweetheart,” Mr. Stogie called as mom got to the door, and she noticed he gave her a parting wink. A slight chill ran through her as the bell dinged on the store door.

Mom got halfway down the block and turned around to make sure Mr. Stogie was not following her. She was relieved to find he wasn’t. Now she was just mad. What a complete waste of time, she thought to herself. She figured the morning was now shot, but at least she could pick up a few groceries on the way home. She forced herself to calm down and headed back to the subway.

School was only a half-day the last few days of the school year, so when Maureen and I got home about noon we went off to our neighbors’ apartments. Maureen went to Mrs. Hanrahan’s - 6A, and I went off to Mrs. Hartnagel’s - 6F. Mom often spread the wealth around, not asking any of our neighbors to watch more than one of us at a time.

Mrs. Hartnagel and I were both watching her “stories” when mom returned home from the city, and as usual I was valiantly trying to understand just what was going on “As the World Turned”. Mom had Maureen in tow, having picked her up at Mrs. Hanrahan’s.

“How did it go, Susan?” Mrs. Hartnagel asked.

Before she could answer, I jumped up. “Hey mom, did you get the tents?” I asked. I really had no idea what I was talking about. I seem to remember I thought of them as something akin to the type you would take camping, like I had seen in a Bugs Bunny cartoon.

“It went fine,” mom lied, and then added, “They’ll be delivered tomorrow.” Mom was amused that I was enthusiastic about the tent’s arrival. Better that than being sad or scared, she thought to herself.

“We’ll both get our own, right ma?” Maureen asked. Apparently she was already getting sick and tired of sharing equipment with me; she wanted her own stuff.

“Oh, don’t worry, you’ll get your own, both of you will.” mom assured Maureen. That seemed to satisfy her, as it did me. I couldn’t wait for the tents arrival tomorrow, and told mom as much. Her lack of enthusiasm slightly puzzled me, but I satisfied myself with the thought that mom was probably a bit sad that she and dad were not getting tents, too.

I waved goodbye to Mrs. Hartnagel and followed mom, insisting that I help her with the grocery bag. Mom handed it to me as she got her keys out of her pocketbook. Maureen and I had the afternoon to ourselves, and kept busy with our toy box and the TV until it was time for treatments again. Mom had to do both of our treatments in the afternoon, including the clapping, since dad would be home too late and too close to dinnertime. As I said, after a few months my mom had the strongest arms on the block, bar none.

By the time dad got home, mom had done both our treatments and got dinner ready. Just as well, because dad was home pretty late, since he could not get out of work early, and then had to travel during rush hour uptown to get the other small compressor for our inhalations, and also carry the large one we would need for the mist tents that were arriving tomorrow. The big one weighed over 30 pounds, and it was quite a chore lugging that home on a crowded, hot subway from uptown. When he took off his suit jacket, his shirt was sticking to him like cellophane to a china bowl.

Dad changed and we all sat down to dinner, but I hardly noticed. My mind was elsewhere. Tomorrow was a really big day. It was our last day of school, and the mist tents were being delivered. I hoped we’d be home before they arrived, I wanted to help unpack them, maybe even put them together. I really hoped I didn’t miss out on that. As it turned out later, I would have been much happier to have missed out on mist tents altogether. But I would discover that the hard way, and soon enough.