Note: This is sort of a revision of "explaining my daily treatments", well, kind of. It's the same, since this is basically the updated version of "explaining my daily treatments", but it only focuses on the vest treatment (aka, the hardest part of my life to explain). I'll explain other treatments later on, but this one is the hardest treatment to explain and needs its own little part in a chapter.
For about 13 years, from the time I was 4 years old until I was 17, I couldn't be less than 6 feet away from the wall for an hour each day. For a half hour in the morning and a half hour in the evening, I was connected to a large, 40 pound box while it shook up the mucus in my lungs so I could cough it up. I wore a vest, that was once black but then came in camo, which connected to the large white box with two large grey tubes. When I pressed a blue button on the white box, the vest I was wearing would inflate and then shake, which would then shake up the mucus in my lungs so I could cough it out.
As you can imagine, this often got in the way of things that I wanted to do. The box had to be plugged into the wall, wasn't on wheels, and weighed more than I did for the first couple years I had it. It was difficult for me to write legibly, since being in the vest felt like driving on a rocky dirt road. Despite this, I still did my homework while I did my vest treatment in the evenings, which both irritated and confused my teachers. In the classroom, my handwriting was smooth, but when I came back from home, my handwriting would be jagged. My handwriting wasn't great to begin with, but whenever I did my homework while I did my vest treatment, it was next to impossible for my teachers to read. I didn't care. My vest was inconvenient, so it was only fair that my teachers shared part of that inconvenience with me.
I don't remember ever liking my vest. I knew it kept me alive and had to be done, but I couldn't do anything other than play video games and watch movies while I was in it. It was also loud, so in order to hear the TV, I'd have to turn it up very loud so the noise from my vest treatment would be drowned out. Wearing the vest wasn't painful, but it was uncomfortable. I couldn't lay down or lean forward, and if I decided to stand up to stretch, I had to be careful so I didn't trip over the tubes. If I got too sick of it, I'd sometimes end it a few minutes early so I could finally get up and move around. I was much more energetic when I was younger than I am now, so sitting down for a half hour twice a day was torture, especially if there were people doing more active things around me.
As I grew up, doing the vest got easier. It just became an appendage to me. I also got used to sitting still, and sometimes enjoyed my vest treatment, especially if it gave me an excuse to retreat from uncomfortable social situations. Sure, it was still uncomfortable and loud, but at least I didn't have to do anything while I was sitting down doing the vest treatment.
Still, my vest often attracted a lot of unwanted attention from guests. Most of the time, my mom would just put it in a back room if she hosted a party, but when we traveled, distant relatives were often attracted to it like moths to a flame. My vest was a new, almost futuristic technology to them, even though it looked more like a computer from the late 1980s. I was one of the few proud owners of such a rare machine, so I just had to deal with people bothering me about it.
One of the most annoying things people would ask me to do is continuously talk to them while I did my vest. Whenever I did my vest, it would chop up my voice, so it almost sounded like I was speaking into a fan, only much more pronounced. Usually, I'd just shake my head and ignore them, hoping they'd go away. But sometimes, they wouldn't. And many people also struggled to understand me if I tried talking to them while I was in the vest. It was very frustrating, especially when I just wanted to ask them to leave me alone, but they couldn't understand me. Usually, only close friends and family could understand me.
Many times, especially if I was sitting on a couch, people would sit right up against me, so they could feel my vest vibrating. When I was younger, I'd put up with this behavior, but as I got older, my temper got shorter. Eventually, my mom agreed that I needed to do my treatments in a private bedroom when we traveled, unless it was just me and her in a hotel room, so I could have some peace and quiet.
Some people have asked if they could try out the vest to feel it. I'd always decline. I was never worried that they'd somehow break it. To be honest, that machine was nuclear bomb proof. However, I didn't want to share it with others. That just felt so wrong to me. I usually told people, if they wanted to know what it felt like to do a vest treatment, just go driving on a washboarded gravel road. Most people accepted this for an answer and moved on. To be honest, someone asking me if they could try out my vest treatment is like asking someone in an electric wheelchair if you could drive it around the block. It's very disrespectful and makes people like me very uncomfortable.
Traveling with the vest was, well, interesting. The TSA didn't like my vest treatment, and it also weighed about 55 pounds in total, so traveling with it was hard. I usually checked it, which helped take the weight off my shoulders, but TSA would still dig through it and then leave a little card in the bag letting me know that they did. I was never worried about TSA or the airport crew breaking it. It was pretty hard to break unless someone dropped it from several stories high and then set it on fire. The only thing I really worried about was the possibility that the TSA would take something out of the vest bag, but then forget to put it back in. Fortunately, the TSA was surprisingly considerate enough to make sure everything was safe and secured after they were done checking it out.
The thing I hated the most about the vest treatment was carrying it around. As soon as I was just big enough to hold it without crumbling under its weight, I had to carry it. As I grew up, carrying it got easier, but it was still hard. My mom nicknamed me the pack mule, because at the airport, I often had on a backpack, the vest bag, and pulled two large luggages behind me. I usually complained about this, especially since the luggage weighed about as I, but at least it kept me strong.
It was always satisfying to arrive to my final destination and drop the vest bag on the floor. It was so heavy, that the room would shake every time I did this. Then, when I was ready to start my first treatment, I'd take out all of the parts of the vest, which included the machine itself, which was the white box, two large tubes, the inflatable vest, and the power cord, and put it all together. Assembling it was quick and easy, and only took a couple of minutes if I took my time.
I knew from a young age that my vest was different and rather impractical. Sure, it was interesting to everyone else who didn't see it everyday, and it was a large reason why I was so healthy. But I hated it. It was heavy and my whole life had to pause for an hour everyday for it. I wished I could be up and about like everyone else. I had no trouble standing up when I was doing my vest, but walking around was the issue.
When I was older, and lived in houses with hardwood floors, I could walk around, but I always had a heavy weight behind me which I had to make sure I wouldn't unplug. The tubes got in the way of my feet, and I even knocked some stuff down with my vest sometimes. I never went further than 10 feet from the kitchen table. If I really wanted something, such as food, water, a bathroom break, or whatever, I always had to pause the treatment and disconnect myself, and then come right back once I got what I wanted, which just made my treatment even longer. My vest felt much more like a ball and chain rather than a key to my survival, which is really why I despised my vest much more than I appreciated it.
Thankfully, I wasn't the only person in the world who felt this way. Just before Christmas of 2018, I was offered the best Christmas present anyone could offer me. By then, doing my vest was just automatic, but it still got in the way, and I still got annoyed every time it disrupted my life. But suddenly, my doctor called me and told me she was writing me a prescription for total freedom. A few people with Cystic Fibrosis became engineers and scientists just to make our lives much easier. They designed a vest treatment that is completely mobile. Not only that, but it was much smarter and more effective than the old vest I was using.
Several days later, a woman from the Cystic Fibrosis department arrived with my new vest. She was called to teach me how to use my vest, since it was a new technology I had never even dreamed of before. The new vest came in a much smaller bag that was labeled "Afflovest", and when the woman took it out, it only came in two pieces. The Afflovest was pretty much ready to use. It just had a charger for that battery that looked just like my laptop charger. The Afflovest had a rectangular battery in a zip-up pocket on the right, and on the left side was a remote to control the Afflovest, that looked like it belonged to a massage chair. In fact, the Afflovest was basically a wearable massage chair, only it was designed to clear out my lungs so I could breathe.
The woman helped me put on and adjust the Afflovest, which weighed about 8 pounds. I could adjust the shoulders to fit around mine, as well as the straps that held it together around my torso. It was well-insulated, and had eight vibrating units (four in front and four in the back), rather than using air to inflate and shake. The units were much more focused in on my lungs rather than shaking my whole body. When I started the Afflovest for the first time, I was surprised by just how gentle and quiet it was. Of course, the settings were on low, but the woman showed me how to increase the vibrating intensity, as well as how to program the vest to do different things.
For instance, each vibrating unit was individually connected to the battery. If I only wanted to use one unit instead of using all eight units at the same time, I could. If I wanted the vest to vibrate for 10 seconds and stop for 5 seconds, or how many seconds I wanted, I could. If I wanted the units to vibrate in a cycle, from the top of my chest to the bottom and then back up, I could. The combinations were endless. It was just amazing. I was just in awe. For over an hour, the woman helped me program my vest the way I liked it the most. In the end, I settled for the highest intensity, for three, 15 minute sessions, with all vibrating units activated at once. It felt the most familiar to me, but at the same time, it was still very different.
I couldn't thank the CF department enough for my new treatment. For once in my life, I could walk around and be free while still taking care of myself. Cystic Fibrosis had lost a lot of its control on my life. My dreams of riding my dirtbike while doing my treatments could finally be realized. Best of all, the bulky machine I grew up with and hated could finally be put away. We still kept the old vest just in case the Afflovest needed repairs, but it's been collecting dust in the storage room.
For the first couple weeks, I was still stuck in my old ways. I had to change my thinking so I could get up and walk around without automatically checking the plug or awkwardly walking to avoid the tubes. There were no tubes or wires connecting me to the wall or a 40 pound box! I was free to do whatever I wanted. I could cook, draw, walk my dog, and even go to the bathroom without having to worry about the vest. It took awhile for me to realize all of this, and I slowly experimented with what I could and could not do while I was in the Afflovest. But, I have to say, when I went to the bathroom while doing my vest for the first time, it was one of the best things I've ever experienced. I realized, right then and there, just how much time I was saving, and just how free I was.
Eventually, I did get used to getting up and walking around with my Afflovest. It saved so much time and hassle. It wasn't loud, it didn't disrupt my speech, and it really wasn't all that interesting to look at. Basically, it was like wearing a heavy, down feather vest, with a battery pack and a massage chair remote attached to it. It only made a little bit of noise and movement. It really wasn't attention seeking like my old vest was.
This excited me, since I figured I could travel and not have nearly as many issues, but I quickly learned that the TSA really hated the Afflovest. I learned through the Internet that some airports would throw a huge fit over the Afflovest, which is something I never wanted to trigger. I understand why. It is a vest with a remote and eight units that wouldn't look very good under the X-ray. So, to save time, effort, and reduce a lot of anxiety, I just decided to take my old vest with me whenever I flew.
These days, just like my old vest once was, my Afflovest has become just another part of me. I enjoy the freedom I have to walk around and live my life without having to worry about sitting down. I still sit down when I do my Afflovest, especially when I'm at home and have nothing to do, but I enjoy the ability to get up and do things if I want. I can even lay down, and while I probably won't fall asleep while wearing it, I can still get very comfortable. Cystic Fibrosis lost a lot of control in my life when I received the Afflovest, and to buck something like that after being chained to it for years is a feeling I can't explain. It's a feeling like no other, and a feeling I will forever remember and feel each time I put on my Afflovest.