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.
