“Boy you look great George.” “Wow it’s nice to see you out today!” “Sure is great you are working.” “Good for you George you got out to a restaurant today.” Tell me people. What the hell is it that you would like me to do? I am trying to live a normal life when in essence it’s far from it. Far! Shouldn’t I go out to eat? Shouldn’t I try to look good? Is it ok that I am out at a restaurant? I am trying to live like and among the general population. I know your being nice. I know you don’t know what to say. But as my good friend in NYC more eloquently reveals it, truth is I’m scared to death. And believe me I have shed some tears on his shoulder via the telephone plenty of times.
Sure I put on a happy face, with help I get dressed and scooter off to work. I even turned in my favorite F150 pickup truck and purchased a mini-van with hand controls. Isn’t this what every 44 year old wants, going from driving a chick magnet to a grocery getter? Behind that happy face, hate to say it, beyond the therapy, beyond the Xanax and baclofen there’s fear- a distressing emotion aroused by impending danger, evil, pain, etc., whether the threat is real or imagined. Sure some days my imagination kicks in, but believe me going from an able bodied physical freak to a numb handed, stiff bodied, eye bouncing, weak legged, pain laden replica in four short years is not my imagination. I didn’t ask for this, and the shear terror of fighting it, dealing with it, trying to put it out of my mind, and ignoring it is no easy task. If I hear from one more person how God only gives you what you can handle I am going off the 7th street Bridge!
Today in the elevator a friendly neighbor in my apartment building commented how “that gadget sure is cute,” referring to my scooter. He’s lucky he got out of the elevator with two unbroken shins. I get it, I understand, its awkward seeing a guy who looks far from feeble sitting in a scooter, but how about something like, “wow winter’s back,” or “Opening day for the Tigers this week .” Waking up more tired than when going to bed, turning into putty on a hot day, living alone with disability as I am currently or even living with someone, it really doesn’t matter. An attack on one’s inner self, a disease that will not allow one to enjoy heat, spasm that inhibits a good night’s sleep over and over and over believe me can scare the living bajingas out of the toughest. This is reality. This is MS. Raw and no busllshit.
Sure I will keep fighting it as best I can, as long as I can, with whatever tools I can find. Fight the fatigue, the pain, you know what i am talking. I don’t want pity, I don’t want to make anyone feel bad, I just want the health that the universe is supposed to bestow on us humans. I take difficulty believing in "this happened for a reason"and all that bullshit. We all have our issues, I understand, I just want to go about my day like everyone else; Normal. Is there such a thing? Trying all these therapies, medicines, excercises both mind and body etc etc. When will something actually work?
To my fellow illness battlers that put on that happy face that disguises this fear I salute you and respect and admire you all, big time. I know the social distress you feel and conquer and the fear that can potentially paralyze you. One step at a time. Minute by minute. Your all forced to be heroes, and damnit i commend it but its just not fair. Fear is not fair.