Place your bets
I remember going to the bright lights of the casino 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 enormous amounts of money that would sicken me if I lost it. For a moment, I dreamt about how I would love to be able to be one of them, and not have a care in the world...to be able to play freely, not caring too much if I won or lost.
One evening, I stayed long enough to watch one of the regulars win big. People were cheering for him as he placed his next bet on black. Luck was on his side for most of the night, but this time he just broke even; no cheers for him then-but no big disappointments either...he was safe. Just as I was about to leave, 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 was witness to a wide spectrum of hope and emotion, and I laughed to myself knowing I couldn’t even afford to play. As I walked away, I will never forget 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.
There are days when I can do things and almost pass as normal, and there are days that I seem to have trouble functioning at all. Judgmental questions have come from many people, and the misperceptions and attitudes of others are the most difficult things for me to deal with.
Before I was diagnosed with MS, I did not appear to be ill, even when I felt terrible. I still don’t look very sick. Family, friends, and co-workers have accused me of being hypochondriac, lazy, unreliable, whiny, and yes--even crazy. Sometimes it’s the thinly veiled looks of judgement cast my way, or the billowy wisps of whispers and gossip that reach me as I am passing by that hurt more than this evil disease does. I would rather people actually ask me about it, so I can at least try to explain. It is hard, because although I expect some people’s nature to be unforgiving and shallow, the people who seem to question it most are those who supposedly love me and know me best.
Maybe it’s because they love me and know how good my good days are, that they don’t understand the drastic change when my bad days hit. If they could just see that I am just as frustrated -perhaps even more so- then misunderstandings and hurt feelings would be rare occurrences as opposed to everyday happenstance. I regularly suppress the urge to yell, “If you are frustrated with me, how do you think I feel being me?”
I hate not being able to be relied on. Maybe that is why, when I can do things, I always give it my all, because I don’t know when I can do it again. 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... you look great, you have a smile on your face, and you can do more than most! Then as quickly as the energy came, it’s gone in a flash, and you are left with nothing. You are completely depleted of any energy 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, a hot flash, stress, or even the weather. It is like walking on rug and having it pulled out from under you. You slowly get up, give your head a shake, and start again--cautiously. Just as you start to think that it was just a little bump you tripped over, boom! Some jerk pulls the rug out from under you again, and there you are, flat on your back and confused as hell. By now, people are walking around you, staring, glaring...saying things like, ‘is she drunk? Others are smirking and pointing while asking anyone who can hear, ‘what’s her problem, man? What an idiot!’ This time, when someone offers to help you up, it is done with kindness and compassion; but the next time, well, you might be jerked up by your arm by some scorning individual that makes it clear that you are a royal pain in the butt and that you had better try harder next time.
Remember 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 trails, I have been a speaker at seminars, I have worked with people in crisis...I have danced until they closed the bar, I have exercised, worked, and played....and now it’s like the casino, when your next spin could be the bet that causes you to lose big-time... 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, or I can’t move properly. There are times when you break even, and those have now become the good days...those are days when you get what you needed 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 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 on how I feel. I have learned 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. They also have seen other days when I can only sit there and answer politely that I am fine, just not my peppy self that day. The worst thing about having to deal with your own highs and lows of a forever “pending illness” schedule is dealing with everyone else not understanding it. Although I am blessed to have family and friends who understand, or at least accept my nervousness regarding commitment to schedules most of the time, there are times when it becomes an issue. I find myself constantly explaining repeatedly how I am capable of things at one moment, but not at another. I have to fight feeling guilty for breaking plans that I so desperately wanted to be a part of. I don’t want to let people down, and I have to deal with knowing that some people are questioning me. Comments such as, ‘is she being lazy?’...‘does she just not want to do this?’, get back to me and I feel ashamed. Don’t they know I would love to be just like them, and never have to worry, and always be able to keep a social calendar? It would be so wonderful to pick and choose what to do; based on nothing other than what makes me happy, but I can’t. Sometimes, I have to fight the instinct to not make plans at all, because then the only person I could let down is myself. I once opined to a friend that it would be easier to simply not plan ahead, to which she replied that I would lead a very lonely, boring life if I did that. She is right, but compared to knowing that people label me as unreliable or lazy, well, nothing feels as lonely as that.
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 than it is for me, because I have no choice- this is my reality right now, it’s all I know. Healthy people can “push” themselves even when tired or even sick. How can someone understand what he or she has never experienced? (Right now, my sarcastic brain is screaming, “Compassion-it’s called compassion!”) Someone dealing with an illness cannot “push” anything without dealing with the consequences...if they can even “push” at all.
Facing the unknown is not pleasant for anyone...not for the person who has been taken hostage by an illness, or for the people living with them. Life can be a gamble, and not everyone at the roulette table has enough money to lose and not think twice about it. And not everybody at the table will keep cheering for you once you lose a few bets-they will move on to someone else who is much more fun to fulfill their entertainment and happiness requirements. Illness has a way of making you slow down and appreciate what you have left, and if you are wise, you learn patience to accept all that has been lost.
Someone said that it is a very bad day if you don’t learn something new. Learning how to be gracefully patient is a process... I sometimes forget that, and wish that I would hurry up and be normal again. However, for the most part, I suppose that I have learned that I may not be able to control the ball spinning on the roulette wheel, or how the dice are going to roll... but I can learn to accept the results. I can only imagine what a burden I can be to those around me- both mentally and physically, but I hold on to hope. Hope is all we have to grab onto sometimes, and hopefully those around me can learn to accept this too.