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.