Six Months On (Episode 21) — The Essentials
Air
As the days went along in my recovery there was one goal in mind for the medical team. Get me weaned off of the oxygen so that I could get out of there. There was no guarantee that I would be able to get off the oxygen completely and the possibility of me rolling out of there with a portable tank was still on the table. But all signs were good and I just needed to keep making progress everyday.
The BIPAP mask i had been wearing since coming off the ventilator was eventually replaced with something called the nasal cannula. This is a smaller tube that goes around the ears and has two small tubes that go just a little ways into the nostrils. It’s much less cumbersome than the mask and made life alot easier. When I was told I was getting a nasal cannula I thought the nurse said nasal canyon and I told her that Nasal Canyon was my dad’s favorite John Wayne movie. She stared at me for a second and walked away. Clearly 38 years removed from the Duke’s death is still too soon for some.
Bedtime would find my head wrapped in the familiar harness of my own CPAP machine. As my arms and hands were too weak to put it on, Susan was instructed on how to do it. In all the years that I have been using it she had never had to put it on me. It was difficult to show her since I was use to doing from the wearer’s point of view but she got the hang of it and eventually my strength came back enough to resume doing it myself.
Wearing the CPAP is actually one of the things that helped to restore order to my world in the hospital. It was familiar and therefore grounding to me. Whatever questionable choices I have made in my life, wearing the CPAP every night is one of the smartest ones i have made. I have used it religiously since I was first diagnosed with Obstructive Sleep Apnea back in 2005. I was able to take a couple of years off when I lost all that weight and didn’t need it but as soon as the weight and the sleep apnea came back, I started using it again and have ever since. I hate having to wear it and hope one day to no longer need it but this thing is a lifesaver. Literally.
A family member of ours died due to sleep apnea. Recent news reports have said that while Carrie Fisher had many problems that were discovered in her autopsy, sleep apnea was one of the main contributors to our beloved Princess’ death. Sleep apnea affects about 22 million Americans and most of those go undiagnosed. If you have been diagnosed with sleep apnea and have been prescribed a CPAP machine, I implore you to use it. If you snore loudly or find yourself falling asleep during the middle of the day, go get checked out. Talk to your doctor about whether or not you should have a sleep study done. It will save your life.
Food
Another advantage of the nasal cannula was that I was able to get off of tube feeding and begin eating regular food. It wasn’t the food part that excited me though, it was getting rid of the feeding tube that went into my nose and down into my stomach. It was uncomfortable and on the rare occasions that it came out, putting it back in was excruciating. The final straw came when I sneezed and it came out of my nose, ripping at my nostril as it made its way out. The doctor told the staff to just leave it out and changed my plan to begin regular food.
I really wasn’t excited about eating regular food again. It had been so long since I had tasted anything I really didn’t miss it. If I could have continued without it I would have. I was down 50 lbs. and had no interest in anything that might cause me to gain weight. But I had to eat to build strength so I ate.
At first the food was soft and easy to swallow requiring very little chewing. Then it moved up to things that were ground or mechanically processed. Basically it had already been chewed before it got to me. They said it was done by a machine and I’m just gonna go with that and not question it. I nibbled at first since I didn’t want any food but then began to indulge more. It wasn’t great food but it wasn’t horrible, either.
As the days went along and I began to eat more, I actually continued to lose weight. It seemed that having “real” food had helped my metabolism kick in. Something else kicked in as well. Self awareness about what I was eating. I was eating full meals, including dessert and I began to notice the balance and variety that I had in front of me. For a few years before I had been depriving myself of many things thinking that I wasn’t suppose to have them and then I would go off and secretly ruin myself with stuff that was going to kill me. For the first time in years (or perhaps my whole life) I was seeing food for the nutrition and strength that it provides and not a reward or punishment to be given out or kept away. I would later find out that what I was experiencing was mindfulness not only about food, but about my own health as well.
I knew that when i got out the hospital I wanted to start seeking out foods that could help me target a more balanced and meaningful lifestyle. For example, I’ve never been a tea drinker but I know that tea plays an important most of the rest of the world. I now wanted to drink teas that helped the body. (Cinnamon for balance. etc.). If tea could do that couldn’t other types of food. Thus began my quest for the Chickens of Tranquility. So far my search has been unsuccessful but I’m hopeful.
While the food and oxygen were vital to my recovery they were not my biggest priority. We were now a little over 3 weeks into this adventure and there was one thing that I wanted more than anything but it was the one thing they would not let me have.
Water
Several years ago I learned the benefits of drinking water. For the better part of the last 12 years I’ve done what I needed to do to stay hydrated. I even had a brief spurt where I was getting 128 ounces per day. (I was also getting plenty of exercise sprinting to the bathroom during those days.) I have maintained a healthy respect for water but over the last few years but hadn’t kept up with drinking enough of it.
During all this time in the hospital I was on an IV that kept me properly hydrated. When I came off the ventilator I was not allowed to have liquids as i needed to strengthen my throat muscles after all they had just been through. As the days went by I really began to feel how thirsty I was.. Passing the swallow test is what would allow me to start drinking liquids again. I had practiced the exercises that the speech pathologist had given me. I was pretty confident about it. I’d been successfully swallowing for 49 years. I was sure I’d be able to pass it. The first test had to be postponed due to scheduling or equipment failure or some other bullshit. When it finally came around again I was told that I did well enough to get food but my liquids would be limited what was called “thickened water.”
Thickened water is a name that still causes me to shudder when I hear it even at this point. It is essentially, water that has been demonically altered to have the consistency of mud but without all the taste. It comes in different “flavors” all of which seemed to be different version of nasty. Not only was I confined to this fetid concoction, I was also only allowed to consume it with a spoon. This made me less than happy and I believe I said some things to the speech pathologist that I felt compelled to apologize for later. But ice cold (liquid) water was all that I wanted. The food meant nothing to me. Water was my new muse and it was all I could think about.
If there was an upside to being restricted to the thickened water it was that it required me to lift a spoon more often than I normally would have. This helped to strengthen my arms and hands and before long I was feeding myself. A few days later I was allowed to do the swallow test again and this time I was given the go ahead for real water. They brought me a big cup full of ice cold water and though I wasn’t allowed to guzzle it like I wanted, it was the best thing I have ever tasted in my life.
The most notable thing about this time was that I was quickly getting stronger and moving closer to the day I would get released. This was a bigger deal than we realized at the time. There was a storm brewing that we couldn’t see but it was heading straight for us.
