Chapter Two: Singing Elevators and Wooden Wheelchairs

My mom and dad now had to deal with the new reality of raising two kids in the CF world, the problem was they were not even remotely aware of what that bizarre world was all about, or what it entailed. Just as well, as it turned out, their naiveté probably kept them sane.

My father had to work, that was for certain, because at that point they were not sure how much keeping us healthy would cost, or if it was even something they could afford to do. Selling us on the black market was not an option.

My father had a form of health insurance through his job for the family, but it was rudimentary at best, and was certainly not set up for such a situation. Sick kids are many things, and expensive is one of them.

Now more than ever my dad could not miss work, lest his employers start looking at him the wrong way. So it fell on my mom to take the CF ball and start running with it. It was a job that frankly scared the you-know-what out of her, but there was no one else to run the play. She set up an orientation meeting with Dr. Denning at Columbia Presbyterian, and off she went, with us in tow.

Columbia Presbyterian is in uptown Manhattan, and back then, not in what one would call a “nice” neighborhood. Because my mom didn’t drive, and our family was currently without a car anyway, our only way to go was the subway. To my sister and myself, it was an adventure, to my mom, not so much. I was back then, what some would call an inquisitive child; but to my mom I was a “little devil.” Both definitions had their points of validity, actually. If she could have put a leash on me, I believe she would have, but it would probably be frowned upon.

We had been on the subway numerous times before, of course, but this was different. The route we had to take was the number 7 Flushing line into Times Square, which we had done a dozen times before, to go to the Central Park Zoo and such. But then we had to transfer to the number 1 train, which took us up to the hospital, straight through Harlem. There’s no delicate way of saying this. It was often that we were practically the only white people on the entire train. And let me state, when you’re a sickly Irish kid, your not just white, you're REALLY white. Yes, we stood out, not that I noticed. I still would walk up to strangers and talk to them, which drove my poor mom crazy.

When we got off the number 1 train at our stop, 168^th Street, we looked for the exit, and realized that at this stop, we were actually 4 stories below ground. The idea of climbing 4 flights of stairs with us kids did not thrill my mom. She noticed a crowd all walking in the same direction, and decided to follow them. It turns out they were all heading for an elevator, that ran straight up to street level. It was small, dirty, and rickety looking, but opposed to 4 dimly lit flights of stairs, she decide to try it out anyway. Clumps a people would jam into its car as it returned again and again, gradually wearing down the size of the crowd, till there were just a few of us left. Once again, we were the only white faces in attendance.

The car door opened once again, and we quickly shuffled on. Mom quickly realized the elevator was not automatic, there actually was a guy sitting on a stool that dropped down from the elevator wall running the thing. “Afternoon…” the man nodded to my mom as we were jammed into the back of the car. “All the way back, all the way back, back up, back up, back up…” he kept repeating as everyone got on. The door closed, well, not a door, actually, more like a mesh gate. The elevator took off, and my legs buckled. We had an elevator in our building at home, but this thing moved more than twice as fast. I watched as the shaft walls whizzed by. I was fascinated. The elevator operator guy sang all the way up to the street at the top of his lungs. Finally, we lurched to a stop, and after he made several adjustments to match the door opening with the floor outside, the elevator guy pulled back the gate, and we shuffled out. “Ma’am,” he nodded to my mom as we left. In years to come, I looked forward to his singing with every visit, he had a great voice, and the acoustics were fantastic.

Finally we had arrived at the hospital. Columbia Presbyterian was and still is an enormous complex, made up of several, sprawling buildings that covered blocks and blocks. Holding us tightly by the hand on each side, mom ventured into the main lobby of the Vanderbilt Clinic, to try to get some information of where to get the elevator to the 11^th floor. This was where the CF clinic was supposed to be.

The lobby was enormous. There were rows and rows of beat-up looking brown vinyl and aluminum chairs (most occupied) in front of bank after bank of teller-like windows. All kinds of people, some with kids and others alone, snaked back and forth in lines leading to those windows. It was noisy and hot, with the constant drone of hundreds of voices and the occasional crying child, mixing with the buzz of dozens of black wire mesh enclosed fans bolted to cement columns up near the ceiling, sweeping back and forth.

My mom went up to someone she assumed was a security guard and asked if he knew where the elevators were. The uniformed man just pointed in a general direction, not saying a word. She was about to ask him for more information, then stopped, realizing she probably would have a hard time hearing him anyway. We headed in the general direction he pointed, and mom kept asking people in white coats for further directions as we went, to narrow down our search. Finally, after winding our way through the maze of hallways that all looked the same to me, we came upon a bank of elevators.

After a ridiculously long wait, we finally got into an elevator that was immediately filled to capacity, since it was the only car of a bank of three that was working. We were to learn later that the elevators in this building broke down on a regular basis, and considering how crowded they instantly became when they would finally arrive at the lobby, it was understandable. I thought about singing at the top of my lungs, just for fun, like the subway elevator guy, but the serious look on my mom’s face made me think twice. I kept my mouth shut.

We arrived at the 11^th floor and then at an information window were directed all the way down to the end of the corridor, where we found more rows of those brown vinyl seats. My mom told us to sit down while she found out what we were to do next.

It wasn’t long before I spotted a group of old, wooden hospital wheelchairs in an alcove by the stairs. That’s for me, I thought. By the time my mom returned, Maureen and I where banging into the walls and each other in our stolen wheelchairs. Mom just let out a tired sigh, grabbed a brown vinyl seat and waited for us to be called.

I remember the CF clinic as a series of rooms that we were shuffled to, one after the other. An older looking nurse in a starched white uniform complete with a white pointy cap would first take our temperature with a glass thermometer. I recall it was sitting on gauze in a steel basin covered in a liquid I guess was alcohol, because I was sternly warned not to touch it by my mom. I guess she thought I was bad enough sober. Blood pressure was taken, saying Ahh with a wooden stick in your mouth, all the standard 60s medical poking and prodding.

Finally we were invited to go into a room by a matronly looking blond-haired lady in a white coat who amazingly introduced herself to me as Dr. Carolyn Denning. It was the first time a doctor had addressed me as if I was actually in the room. Dr. Knownothing always treated me like a stepstool my folks brought along for their appointment.

Again to my surprise, Dr. Denning spent a long time asking me, not my mom, a bunch of questions. These were like: was it hard for me to run around and play, did I ever make whistling noises when I would breathe, did I cough when I would laugh, lots of things that I had never thought about.

She asked my mom a lot of questions too, and I spent that time scanning the room trying to figure what some of the machines sitting on tables and pushed into the corner of the room would do. I recall lots of things with dials, rubber tubes, glass bottles and some scary looking masks that would go over your nose and mouth, with big balloon like things hanging below them.

Then it was back to me, and Dr. Denning took out her stethoscope. Then there was a lot of taking deep breaths while the doctor listened to my lungs, heart, over and over, at endless points all around my chest.

Finally Dr. Denning asked Maureen and I to go back to the waiting area, which I was happy to do; old creaky wheelchairs were waiting for us.

Dr. Denning now introduced my mom to another doctor at the clinic, a Dr. Orais. As my mom told me years later, it was Dr. Oais’ job to now explain to my mom what she had to do, what our treatments would be every day, and how she was to do them.

The list of tasks were daunting, to say the least. First, there was the medication. CF gives you two main defects; one affects the lungs, the other the digestive tract.

For the lungs, first my mom had to mix two medications, measure milligrams with a hypodermic needle, count drops, and put the mixture into a glass bulb that was the bottom of a mask that then Maureen and I had to wear on our face. My mom was sure she’d mess up the concoction somehow, and end up killing us both.

The idea of the liquid mixture was to make the mucus in our lungs looser, so it would be easier for us to cough it out.

The mask was attached to an air compressor, to turn the mixture into a mist that Maureen and I were to breath in. Dr. Orais demonstrated one of the set-ups to my mom. The compressor ran with an electric engine that growled loudly. One machine was loud enough, she observed, but we would be using two of them at the same time. She could just imagine the racket.

All these medications and theories were truly in their infancy, and consequently, only worked so well. But it was all we had, so you made do. To this day I remember we hated wearing those masks; they were hot, sticky and smelled like burning rubber and medicine.

Next came the postural drainage, what is commonly called “clapping”. Imagine being told that you had to whack your child for 30 minutes twice a day, every day. Granted, for some folks, this sounds like a fine idea; a wonderful frustration relief when your kids piss you off. But it was not so for my parents, at least not on most days. What the process entailed was Maureen and I either lying or sitting on the bed in various positions, some on our back, others on our sides, with pillows propping us up so we lay on a slant with our feet higher than our heads, or the other way around. Then my mom or dad would have to cup their hands and basically rhythmically beat on us for about 2 or 3 minutes in each position. Then we had to cough and try to bring up anything that got banged loose.

Then when all of that as done, my mom had to mix a liquid antibiotic with a saline solution in another hypodermic needle to go back in the mask cup (which had to have been washed out) which we then had to put back on for another 15 minutes or so. We had to do all this, every day, twice a day, basically forever.

Lastly were the mist tents. If you’ve ever seen a movie where a person is being kept in isolation, then you’ve probably seen one of these plastic nightmares. There made up of aluminum tubing that goes under the mattress, then up and over the top half of the bed. The aluminum frame is then covered with a thick, clear vinyl plastic, which drapes over the bed and down the sides. There is a hole with elastic around its edges poked into each side of the tent near the top to permit the entrance of a wide plastic and wire hose to enter the tent. This hose is attached to a water supply, which is then attached to another, far bigger air compressor. This one roared with a volume not unlike a lawn mower, but imagine one that you ran in your bedroom.

The end result was a tent filled with a fine water vapor. But that doesn’t quite describe it. A little piece of hell is more appropriate. But I’ll tackle that later.

Some of this equipment would be shipped to us in the coming days, others she would have to get at a supply store on the West side of Manhattan. The rest my mom had with take home with her. How we were supposed to accomplish that on the subway was still up for grabs.

That took care of the lungs, but remember there was still the digestive system to deal with. I said earlier how Maureen and I had a great deal of trouble absorbing nutrition from the food we ate. It turns out the reason for that is basically the mucus problem again. It gets into everything, the little bastard, and also cloging the ducts in your pancreas, where the enzymes it produces that let you digest your food are secreted into your digestive tract. With the ducts blocked, food would hardly be digested and pass right on through, even more so if the food was too fatty.

So as it turned out, the milkshake diet Dr. Knownothing came up with years earlier was a complete waste of time, there was no way for Maureen to digest any of it. Actually, the shakes just served to lubricate any other food's trip through her digestive system. Nothing like a fix that makes the situation much worse. Thanks again, doc.

The answer in this case was a medication Maureen and I would have to take before we ate anything. It was basically a substitute for the enzymes we could not produce ourselves in capsule form. Of course, the fact that neither Maureen or I had ever learned to swallow a pill of any sort made for some fun times ahead, considering it was required that we would have to take 3 to 4 capsules before every meal.

Dr. Orais gave my mom a whole pile of instructions, some on mimeograph paper. There was an extensive medication list, with dosing instructions, manuals for all the aerosol equipment and compressors, with directions on how to hook them up, and then a book of postural drainage instructions with diagrams of all the clapping positions. The materials were vast; it was a little library all by itself.

The doctor could see the look on my mom’s face. Sadly, she had seen it many times before. The task ahead was almost too much for mom to take in. She gently put her hand on my mom’s. “You can do this,” the doctor assured her.

My mom looked at her. “I’m not so sure I can…” she answered. She was nearly in tears. “Could you give me a few minutes?” she asked.

“Sure, I’ll be right outside.” Dr. Orais answered, and left the small room that they were sitting in.

Mom then sat by herself. Now she was no longer naïve. That was for sure. That innocence had been replaced with a state of shock.

She looked at all the materials in front of her, all the machines, all of the tubes, bottles, and needles, all the medications. She saw a sea of unknown possible dangers.

Then she let go, and the tears came. She cried for Maureen and I, she cried for my father, she cried for herself. She felt completely overwhelmed. The tears just kept coming, she felt as if they would never end.

Years later she told me suddenly she could hear Maureen and I laughing in our stolen wheelchairs outside in the waiting area. She knew her own children’s laugh right away, any mother does. Mom got a handkerchief out of her purse, dried her tears and wiped her face. She composed herself, took a deep breath, and said to the empty room “Well, there’s no one else to do this, and it’s got to be done, so I guess it’s up to us.”

The tears were done, and that was that. It was time to go home, and begin a new way of life. But first, she had to figure how she was going to get all this stuff home on the subway, with two kids in tow.

There was no way to get all the equipment home with just the three of us, that much was certain. With no car to help us, there was not much point calling my dad, either. Besides, he was still at work.

Mom decided to take just one of the compressors with her that day, Maureen and I would have to share it for a few days until dad could stop by after work and pick up the other one.

We filled several shopping bags, and both Maureen and I were given our own loads to carry. We covered all the bags with newspapers on top; so that it was not so obvious we were hauling boxes and boxes of pills, medicine vials, hypodermic needles, rubber tubes and masks. We thought fellow subway riders might think it strange that two kids and an older woman were hauling a cartel’s worth of drugs and medical equipment. Who could blame them?

Thus, we were loaded up with our weapons to start slaying the CF monster. We thanked the doctors, grabbed our shopping bags, and headed back to the subway. Our singing elevator guy was waiting, as was the task ahead. Luckily, we had no idea what we were in for; it made the days ahead easier to deal with. The fun was just beginning.

End of Chapter Two