The ride home on the subway was interesting, to say the least. Mom, Maureen and myself were well laden down with our medical booty, in several paper shopping bags, and doing our best to keep their contents a secret. We found seats, and kept the bags jammed between our knees. For some bizarre reason, I felt as if we were doing something wrong, as if we had stolen the stuff. I kept my head down, so as not to look too guilty.
I do remember one of the newspapers we used as a cover on the top of the shopping bags got blown loose by a gust of wind when one of the subway doors opened. It revealed a box of antibiotic vials and hypodermic needles. It was a fairly crowded train, getting close to rush hour, and I recall several wide-eyed stares in our direction. “Oh no, we’ve been caught!” I thought, before quickly re-covering the bags contents and reminding myself that we were doing nothing wrong. Still, it sure FELT like it.
We worked our way back home on the 7 train, which was much less fun than the trip to the hospital. Mom seemed tense and sad, and we could not help picking up her attitude. “It’ll be okay...” I said to her at one point, not quite understanding why she seemed so distressed in the first place. She didn’t say anything; mom just half smiled and put her hand on mine. The train rocked and clanked all the way back to Flushing. I spent some of the trip watching my bag of stuff; and the rest on my knees facing the window and looking out as the buildings passed by.
We finally arrived at Main Street, just in time I might add, as one of the shopping bags gave up the ghost, its twine handle ripping away from the bag about a three blocks before we got to our building. The bags contents spilled out all over the sidewalk. We all scurried around and grabbed up the contents, and piled them up in the broken bag.
Just then a stranger suddenly appeared, grabbed the ripped sack up like a package, and asked where we lived; and then said he’d be glad to give us a hand. My mom thanked him, answered “Sanford Avenue”, and we all walked in silence the two blocks on Main, around the corner and then down our block.
I kept looking up at the stranger. He was big, really big. He wore a plaid shirt and blue jeans, and he had beard and mustache and what was then considered long, mop top red hair and light blue eyes. Once he looked down at me and smiled, and I smiled back.
We arrived at the front of our building, and before my mom could say anything, he turned into our courtyard and then up to our lobby door. He then held the door open for us. It so happened that just then someone was leaving the building. The stranger grabbed the inside door before it could close and held it for us also, and then he walked though the lobby to the elevator door and opened it. He set the ripped bag down on the elevator floor, stepped off and held that door as we got on. I could see that my mom didn’t know what to do next; she looked nervous, almost scared. She turned to look at her purse; I think she was not sure if she should give him some money, or something.
But just then the red-haired giant nodded, put his hand to his head and tipped it, as if he were wearing a hat, smiled, let the door go and went on his way. He didn’t say a word, and I never saw him again. I guess guardian angels are everywhere; at least it sometimes seems so. We all looked at each other, then mom pressed the button for the 6th floor.
When we arrived upstairs I held the elevator door open as my mom and Maureen got the bags in the house, making a couple of trips. Right outside the elevator door was apartment 6A, Mr. and Mrs. Hanrahan’s place, Uncle Michael and Aunt Marge, as we called them. Maureen being 7 years old and I being 5, Aunt Marge was sometimes our babysitter when mom had to run errands.
Back then some of the apartments still had a screen door along with the regular steel front door. In the days before air conditioning you could open the apartment windows, leave just the screen door open, and get a nice cross-breeze through the house. Aunt Marge often just used her screen door most of the summer, so when mom and Maureen were moving our equipment into our apartment, she heard us talking in the hall.
Aunt Marge appeared in a flowered housecoat and a hairnet at her screen door, just as Maureen and mom had taken all but the last bag off the elevator. I could tell she had been waiting for us, she seemed anxious to talk to mom.
“Susan, how did it go?” Aunt Marge asked.
My mom looked confused, tired and sad all at the same time. “It went all right, Marge, I guess,” she said. I could tell mom was not really in the mood to talk right then. “Could we talk later, or tomorrow, if you don’t mind…” mom said wearily.
“Oh sure, sure, we’ll talk later, you must be tired,” Marge stated. Mom took the last bag, and she and Maureen headed toward our apartment. I followed, and looked behind me as we turned down the hall. Aunt Marge was still standing at the screen door. I waved to her, and she waved back. I guess she waited until we went back into our apartment. Her apparent concern bothered me, and made me wonder what exactly she was worried about.
We put our bags down on the living room floor, and my mom went over and turned on the window fan, and then sat down on the couch. She looked exhausted, and the truth was we all were. Maureen and I then sat down too. I remember we all sat in silence for a minute, the only sound being the rumble of the fan. Maureen and I looked at each other, not quite knowing what it was we were supposed to do next.
Then mom sprang up and said “Well, we’ll have to find someplace to keep all this medication, I’ll have to clear out some room in one of the closets, I guess.” Maureen and I just nodded. Mom headed down the hallway, and we followed. She went straight to the linen closet, opened it up, and nodded to herself. The linen closet seemed the most logical, it was the least crowded with stuff, and it was right in the middle of the apartment. I guess mom figured she could just stuff some of the bed linens on to one shelf, and leave one just for our medical supplies.
There was a lot of stuff; I guess I hadn’t been aware of how much there was until we started unpacking it. We dragged the shopping bags into Maureen’s and my bedroom, which at that age we were still sharing. First we spread it all out on my bed, to try to organize it. There were boxes and boxes of pills, vials, packages of needles, masks, tubes, it looked like a hospital supply room spread out on my covers.
Again, for some irrational reason, I wanted to get the stuff in the closet and out of sight as quickly as possible, as if I expected the police to come banging down our door any second, waving Billy clubs in the air like I had seen in a Bugs Bunny cartoon and take us all away. I guess I believed that if we put the supplies some place that we could no longer see them, it would not be so real. I could pretend maybe we were not sick after all, and everything would go back to normal, whatever that was.
We made room in the linen closet and soon had stuffed most of the supplies on the top shelf, the rest of it we had to keep in the refrigerator, since we were told it would lose it’s potency once it was opened. There, now it was all put away. I felt better, not having to look at any of it anymore.
No rest for the weary, as they say, because now mom had to start dinner. Dad would be home from work soon, and this was before the days of picking up something at McDonalds when you were too busy.
Before she went into the kitchen, mom first sat Maureen and I down for a talk. She sat on Maureen’s bed, and we sat on mine, facing each other. Again, she seemed way too serious to me, and it gave me a bad feeling.
“Now Dad and I are going to figure out how we’re going to do all the stuff the doctor told me about today,” she stated, “but I need you both to understand that we’ll all have to work together on all the things that we’re going to have to start doing. None of this will be fun, but it has to be done.” Maureen and I nodded solemnly. “Now give me a hug,” she said, to lighten the mood. We did, and I noted it was a longer one than usual. “Now go watch TV,” she said, and left to go back to the kitchen to make dinner.
That was it. None of this was up for discussion; no one asked how we felt about wanting to do anything. It just was what it was, and that’s all there was to it. Maureen went over to the window and turned on our bedroom box fan, I turned on our black and white set and we plopped ourselves down on the linoleum floor.
Just a few minutes later dad came home. As usual, we ran down the hallway and gave him a “hi!” and a hug, but we could tell he was in a hurry to talk to mom. They both went to the back of the apartment to their bedroom to talk. I was curious to hear what they were saying, but knew better. It was safer to keep watching Officer Joe Bolton and the Three Stooges on Channel 11. But I only listened to the TV with one ear, the other one strained to try to hear what they were talking about.
After a while, they both came into our bedroom. Dad spoke first. “Okay,” he said, “starting tomorrow we’re going to be getting you guys up earlier for school. We’re going to have start doing this thing called “clapping” on both of you before you go to school, and it’s going to take some time.” Maureen and I just listened, we could tell now was not the time for discussion.
Mom continued, “Before we start the clapping, you both are going to have to breath in this medicine we were given at the CF center today. I’ll mix it in the morning, just before you use it, we have to do it that way.”
Dad added, “But we’re going to give you some of it now, because we want you to see what it feels like. It will probably make you cough, but that’s okay, that’s what it’s supposed to do.” The whole thing seemed a bit crazy to me, why in the world would we WANT to cough? But I assumed mom and dad knew what they were doing, at least I hoped so.
I followed my mom into the kitchen. She reached into the refrigerator and got some of the medicine we had picked up that day. I watched as she mixed the stuff, one of the bottles had a metal thing around the top that she had to break off, and the other one had an eye dropper. She had the notes she had gotten for Dr. Orais earlier that day open on the counter, to make sure she didn’t mix anything wrong. She had to use one of the hypodermic needles to get one of the medicines out of the bottle, and for a split second I was afraid she would have to use it on me. But then she just emptied it into the bottom of the mask thing we were going to use, and I felt relieved.
Mom took the two mask things into our bedroom, where dad had already plugged in the compressor machine. He turned it on for a second to see if it worked, and it buzzed to life. Little did I know I would hear that machine or one of its descendants every day for the rest of my life.
“Okay,” mom asked, “who’s first?” We still only had the one air compressor; dad would pick up the other one on the way home from work tomorrow. Maureen reluctantly volunteered, and since she was the oldest, I figured that was fair. Dad fitted the mask on her face, it was dark green rubber, and had a big rubber strap that went over the back of your head to keep it tight to your mouth and nose. I could tell she didn’t like it, because even though it covered most of her face, her eyes showed it. Dad attached the hose on the bottom that ran to the compressor, and turned it on. It once again sprang to life, and almost instantly a white mist began pouring out of little holes that were on either side of the mask.
Maureen started coughing almost immediately, but dad asked her to keep the mask on her face anyway, he said the doctor told mom that she would get used to it in a minute or so. Maureen did the best she could, but I could see it was hard on her. Mom got a green mixing bowl out of the kitchen and whenever Maureen felt she had to, she would cough out into the bowl, and immediately put the mask back on. The whole thing took about fifteen or twenty minutes, at last the mask began to sputter like all the medicine was used up.
Now it was my turn, and I was not looking forward to it. Mom mixed my dose, and squeezed it into the cup like container at the bottom of the mask. We each had our own masks, but they were exactly alike. I put mine on myself, having watched dad put on Maureen’s. “Are you okay?” mom asked.
“Yea, I guess so…” I replied. I noted that my voice sounded funny, all muffled. Like I was an astronaut in his space suit thing, as I had seen in countless old TV sci-fi horror movies. The mask’s new rubber smell was strong and awful.
The compressor was switched on, and the mist felt cold on my face. I started to cough too, but not as bad as Maureen had. I tried to put it out of my mind; I just sat back on the floor and concentrated on “Gilligan’s Island” that was now playing on TV. My parents, seeing that we were okay with all this stuff so far, left to do other things, my mom to get back to dinner, and my dad to change out of his good work suit. In a little while, my mask was sputtering, too. I took it off and switched off the compressor. In a bit, dad came back in. “Where’s your mask?’ he asked, concerned.
“The stuff was done, so I took it off and shut the machine.” I replied, matter-of-factly.
“Oh, okay… good,” my dad replied, slightly bemused. I went back to watching the TV. It’s amazing sometimes, how the strangest things can become normal in a very small span of time. If my family was anything, it was adaptable.
Soon mom called us to dinner. But tonight’s dinner would be different, because it was our first dinner swallowing the enzyme capsules. Well, at least that was my parent’s plan.
We came into the kitchen and sat in our normal spots. I don’t remember what was for dinner that night; but it really doesn’t matter. The memorable part for Maureen and I was the three pink capsules sitting next to our utensils.
I looked at the pills. “What are we supposed to do with these, ma?” I asked.
“Well,” said mom looking at dad, “we would like you to try swallowing them.”
“All of them?” Maureen asked in a rather astonished tone.
“Well, yes, you have to take them all. The doctor said that for kids your age and size, you need three per meal…” mom stated, although I could tell she didn’t believe it was possible herself.
“Every night?” I asked.
“Every meal,” dad elaborated.
“Every MEAL!?” Maureen and I shouted, almost in unison.
“Yes, every meal…” dad answered, and it was obvious he didn’t believe it either.
“Just try, you might find it easy,” mom said. “Just one, two, three, and down they’ll go, you’ll see.”
We all just sat and looked at the pills for a second or two. I don’t think any of us were buying that story, but no one wanted to say it.
I tried first. I put one of the plastic capsules on my tongue, grabbed my water, took a big gulp, and swallowed. Yuk. Mom looked at me expectantly. I stuck my tongue out, and there the capsule sat.
I tried again, I can DO this, I thought. This time I just kept drinking and swallowing, until I had finished all the water. I stuck my tongue out, and there the capsule sat.
Now there was a new problem, the capsule was starting to melt, and what was inside tasted truly disgusting. I went over to the sink and spit it out. It could have gone better, obviously.
Maureen tried, with basically the same result. By this time, everyone’s dinner had gotten cold, and we were no closer to swallowing a pill, although the sink had gotten more than its share.
Mom let go a long sigh. She was not mad at us, I could tell, just really tired. It had been a LONG day, and it was far from over, it seemed. She got up from the table and said, “Let me look at some of the notes they gave me at the hospital today, maybe they know something we don’t know.”
“That’s just about everything,” I said under my breath. My dad shot me “the look”, and I quickly shut up.
Mom shuffled through the piles of papers Dr. Orais had given her that afternoon. One of the mimeograph sheets was about the enzymes and how to take them, dosages and such. But under the typed information were some handwritten notes. Who knows who wrote them, but they were just what my mom was looking for. They basically stated: “Some children will have quite a bit of difficulty swallowing their enzymes. Many parents open the capsules and put them on a teaspoon covered with applesauce, which the child then eats as quickly as possible. This will make the enzymes quite palatable.” Sounded good to my mom, and she quickly checked the fridge for applesauce.
“What’d say, ma?” Maureen asked. I think she was hoping the whole pill-swallowing thing was being scrapped, and I was thinking the same thing.
“It gave me an idea,” mom said, almost talking to herself. We could see she was doing something, but when I went to get up to look what it was, my dad pointed at me and I retreated to my seat. “SIT”, was all he said. I did.
Mom returned to the table with two teaspoons, with what looked like applesauce on them. “Here,” she said, giving one to Maureen and one to me. “Eat these fast, just swallow them down.”
We looked at the spoons, and then at my mom. “There’s that stuff under here, ain’t there,” I asked, knowing the answer. Maureen just stared at her spoon.
“The applesauce will hide the flavor of the medicine.” Mom stated, completely unconvincingly. I was going to further argue, but I realized it was a lost cause. This was going to happen, whether I liked it or not. I closed my eyes, put the spoon in my mouth, closed my lips around it, and swept it and clean in one quick motion.
Imagine a heaping teaspoon full of dry sawdust-like powder, but with an extremely salty, sour taste. Now, cover that with some applesauce that just sort of floated on top of it. That would make it all better, right? No, of course it wouldn’t. And it didn’t, not even remotely. But I’ll give me this much, I did not spit it out. I swallowed it. “That was soooo yucky!” I said through a still pinched face.
“Did the applesauce help?” my mom asked, hopefully. Maureen looked at me in anticipation.
“Yeah, I guess so,” I lied. That was wrong, I know, but the little devil in me made me do it. If I swallowed that powdered nightmare, Maureen was sure as hell going to do it too. Besides, peer pressure was in full force, and now it was all on her to do like me. She did, with much of the same reaction. She looked like she had swallowed a bug.
We then all proceeded to eat our now cold dinners. Mom, Maureen and I told dad of our adventures on the subway, the singing elevator guy, the maze of the hospital, those neat old wheelchairs, all the scary machines and the red-haired giant.
Dad said he would go to the hospital after work the next day and lug home the small air compressor, and also the big, heavy one we would need for the mist tents. As for the tents themselves, tomorrow mom would have to leave us with Aunt Marge or Mrs. Hartnagel (another neighbor), and go to a surgical supply store on the west side of Manhattan that carried them. She would call them in the morning and find out what subway she could take to get as close as possible. She was not all that happy about the idea walking around the west side of Manhattan by herself, back then it was mostly factories and storehouses; not the best place for a woman to be alone.
But that was tomorrow, and tomorrow would be another story. In the morning Maureen and I would be woken up at the crack of dawn to begin getting “clapped”. Things so far had been pretty weird, but that would bring the weird to a new level.
Soon it was time for bed, and mom and dad tucked us in for the night. Maureen and I feel asleep to the drone of our window fan, blissfully unaware of the mega-craziness the dawn would bring. To paraphrase the song, we ain’t seen nothing yet.
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