My Roulette Kinda Life. You Just Never Know.
I remember going to the bright lights of Atlantic City and watching people play roulette. I would just walk around and watch people. I liked to watch the “high rollers” because they seemed so carefree with amounts of money that would make me sick, if I lost. For a moment, I would love to be able to be one of them and not have a care in the world, and be able to bet freely. I stayed long enough to watch the same older man, win big.
People were cheering for him, as he bet black. He looked like luck was on his side that night, but then he just broke even, no cheers that time, but no big disappointments either, he was safe. Just as I was about to walk away I watched as he lost it all. He looked frustrated and even a little mad, but he continued to play anyway. In a matter of minutes I saw such a wide spectrum of luck and emotion. I laughed to myself knowing I couldn’t even afford to play. I walked away and never forgot thinking “that is my life… a roulette wheel. I never know what I’ll wake up to, what I can do, or how I am going to feel.” It’s all a risk, an unknown.
I have heard the same judgmental questioning from many people in my life, when I can do some things and at other times can’t function at all. The most difficult things for me to deal with are the misperceptions and attitudes of other people. Before I developed more serious complications I did not appear to be ill, I still don’t look very sick. Family and co-workers accused me of being hypochondriac, lazy, whiny and yes, even crazy. Sometimes it’s the judgmental looks, or whispers that hurt more than when people actually ask. I wish they would ask so I can at least try to explain. It is hard because although I expect some judging or questioning, the people who seem to voice it most are those who supposedly love me and know me best. Maybe because they love me and know how good my good days are, they don’t understand when my bad days are so bad and it is such a drastic change. If they could just understand, I am just as frustrated with not knowing when I’ll have energy and strength to do the things I want to, as when I actually cant. I hate not being able to be relied on. Maybe that is why, when I can do things; I always give 100 percent, because I don’t know when I might not be able to.
I think what makes it truly confusing for those surrounding me or anyone living with a chronic illness, is that there are days when you feel like you could run a marathon. I look great, I have a smile on and I do more than most! Then as quickly as the energy came, it leaves in a flash, and you are left with nothing. You are completely depleted of any ounce of energy you had and are left with pain in its place. It is like living two separate lives, and it is so hard to plan your life according to an unknown schedule. You need to learn to accept help, even when you don’t want it. You have to learn to always have a plan B, and be prepared for the worst, while remaining positive and hoping for the best. It’s a difficult balancing act.
In my case, anything can set it off at anytime; doing too much, a cold, an infection, stress, or even the weather. It is living on constant thin ice, never knowing when the next crack will surface causing you could to start sinking. I think of it as that spinning roulette wheel, you never know where that ball could land. There are times when I am winning and no one would ever guess that I am sick. I have gone on vacations and hiked through jungles, I have performed in shows, and been the life of the party, I have exercised, worked, and played. Then it’s like in Vegas, when your next spin could be the big bet that causes you to lose big time. I need to know that I am taking that risk whenever I do something, and use up too many of my “spoons”. Sometimes I have no choice; I lose before I ever wake up. I had no chance at a spin. I am in pain, I have no energy, I can’t move or I have been in the hospital. There are times when you break even, and those have become the good days. The days when you get what you needed to and wanted to do done, and at the end of the day you are not hurting more than when you started.
The thing is when you are dealing with your health you can’t gamble, it’s not worth the risk. You are not given a choice. You aren’t rolling the dice… your disease is. So you have to learn to ride with the rolls of roulette and take it as it comes. I have gotten better at this, although it is always a battle. I hate not being able to do what I want to do. I think that just might be the worst thing about being sick, or at least the hardest thing to get used to.
My true friends have learned that plans are never definite with me until that morning, pending how I feel. I have come to use words like hopefully, maybe and likely. My family has seen that there are times when I am the life of the party, the happy hostess and helper. There are other days when I can only sit there and answer politely that I am fine, just not my peppy self that day. But what is worse about having to deal with your own highs and lows of a forever “pending illness” schedule, is having to deal with everyone else not understanding it. And although I am proud to say that great family and friends, who most of the time understand or at least accept my lack of commitment to schedules, surround me, there are times when it becomes an issue. I have to constantly explain time and time again how I am capable of things at one moment, but not at another. I have to fight feeling guilty for breaking plans; I so desperately want to be a part of. I don’t want to let people down, and I have to deal with knowing that people are questioning me. Is she being lazy? Does she just not want to do this? Don’t they know I would love to be just like them, and never have to worry, and always be able to keep a calendar? I want also to pick and choose what to do, based on nothing other that what makes me happy, but I cant. I then have to fight the instinct to not make plans at all. Then the only person I would let down is myself. It would be very easy to just not plan ahead, but then I would lead a very lonely, boring life.
I want to do as much as I can, but then there are times when I can only do so much. I have learned to deal with this; I am waiting for those around me to accept this. Sometimes I think it is harder for them to grasp this concept then for me, because I have no choice, this is all I know. A healthy person can “push” himself or herself even when tired or even sick. How can someone understand what he or she has never experienced? But someone dealing with an illness cannot “push” anything without dealing with the consequences if they can even “push” at all. The disease is in control, I have to accept not being able to spin the wheel and I have to just live with the results. Hopefully, those around me will learn to accept this too.
Essay written by Christine Miserandino, 2009 butyoudontlooksick.com