Written on June 23, 2010 by Daniel P. Malito
As I was sitting and wondering what exactly I was going to write about this time around, I looked at my inbox and it hit me. The mountain of paperwork that was now forming its own “leaning tower of paper” was only one-fourth of the phone calls, letters, and bills I had to take care of. The reason that I will be tied up for weeks? Simple. My disease left me blowin’ in the wind for a little over a month.
As you all know, I recently had several consecutive long hospital stays for what amounted to a small case of pneumonia and then weeks of “hopefully this next test will tell us what’s wrong.” Because of this, my life was inadvertently put on hold. This is yet another misconception about chronic illness – most people think that something you live with everyday is actually less of an inconvenience than those diseases that come on fast and strong. If you really stop and think about it, the saying “chronic illness,” means an ailment that never goes away and always causes problems. You would think that this would be obvious, but just like the name “Arthritis,” it is not a word that impresses upon others the seriousness of the issue. People hear the word “chronic” and they instantly think “not dying,” so it must not be too terribly awful. If only that were true.
Putting your entire life on hold does not necessarily require a hospital stay to do so, either. Of course, even a healthy person would have to postpone real life if they were to stay in the hospital for a month. Heck , pregnant women do it all the time. The problem is that there are so many other reasons that chronic illness can force people like me to go into “hibernation,” as someone once described it to me.
Because I have had to start from scratch many times, and was not able to achieve goals the usual way, I experienced much more when using alternate methods to get things accomplished.
For example, anyone who is ill can tell you there are certain times of day that are better or worse for getting things done. Not only that, but these functional times of the day can switch or simply evaporate when the disease changes its symptoms, as it often does. Currently, I wake up at 10am, and then the clock starts ticking. After seven or eight hours no matter what has happened during the day, I am totally drained. Beyond that point, even if I prop myself up with pain medication and extra steroids, I can barely function. The RA fevers, the joint aches, the fatigue, and the worst of it all — the general feeling of malaise – comes roaring back with a vengeance. And although this is something that has only been happening since I was discharged from the hospital, it is the same pattern of disease that I suffered from all throughout high school and most of my college years. In fact it was so bad that I used to carry around a bottle of liquid Tylenol if I was sure I was going to be out of the house past 8 or 9pm. Because of this I eventually just gave up and only went out at night if the occasion was something special. This inevitably led to my social life virtually (and actually) evaporating. My friends and family actually started calling my room “The Cave,” and began asking me when I was going to re-join the rest of the world. It was not until recent years that I decided a social life was something I wanted to have again, but by then it was too late. I had missed engagements, weddings, break-ups, graduations, births, and even deaths, and had to start from scratch. To this day there are incidents and get-togethers that my friends talk about that I simply missed.
Of course, missing a social life seems of low importance on the “grand scheme of things” scale, but the example does illustrate how a simple chronic illness can force people to alter their lives significantly and consistently.
The situation I am dealing with now is much more serious, though. The stack of paper in my inbox is mostly bills from my recently hospital stay, which, all-tolled, are somewhere in the neighborhood of $350,000 dollars. The actual physical time spent in the hospital is an obvious way that my life was interrupted, but there is another more subtle way – money.
When I was just graduating high school, my mother took me aside and told me that it was important for me to find a job that not only let me make my own hours, but also let me work from home. I dismissed it as mothering, but in retrospect, it was one of the most important things she ever said to me. If I had not found ways to make money from my room, I would not be anywhere near as well off as I am today. You see, she also said something else – that medical bills would ALWAYS be the number one expense in my life. Boy, did that turn out to be the truth as well. Because of this, I have had to pass up on many things that other people take for granted. Things like owning credit cards, signing for loans without a co-signer, low interest rates, or even having the choice to go without medical insurance – these are all things that were never within my grasp. I won’t go into the details of how this sets someone like me apart from my peers (even more so than I already am), but you can think of a few ways, I’m sure. People may understand the reason that you have to move home, or the reason your parents are still helping your at your age, but that does not mean that they won’t still don’t look at you differently. It’s human nature to have a certain amount of disdain for anyone who is outside the normal or anyone who sticks out. I know that you are shaking your head right now and telling yourself that you don’t do this, but trust me, on a subconscious level, we all do.
I could go on and on about all the different aspects of life that chronic illness either prevents people like me from partaking in, or forces people like me to constantly stop and re-build, but by now you get the idea. Unfortunately, when you have to start from the beginning time and time again, it makes it hard to build a long-standing career. Even if you do, it will be pock-marked with absences, medical issues, and missed deadlines. When you combine this with the fact that people with chronic illness already stick out, you have a recipe for a decent amount of hardship.
Be all of this as it may, though, there is a bright spot in the clouds – a silver lining, if you will. Because I have had to start from scratch many times, and was not able to achieve goals the usual way, I experienced much more when using alternate methods to get things accomplished. On top of that, when you have the freedom to re-start your career or job interest from the beginning, you can pick whatever field you want to try. Over the years I have worn many hats, and it is something I would never trade. In fact, the best lesson I have learned from all of this over the years, is there is always some bit of good to go along with the bad, no matter how horrible it seems at the time. As long as you remember this lesson, working the fryalator at McDonalds for a year won’t seem so bad (yes I really did that). In other words – it may be greasy, but it’s also delicious.