Written by on April 9th, 2013 – 2 Comments

It’s quite marvelous how easily my moods can swing from one continuum to the next, like my MS has gotten herself a rope and is playing monkey games with my head, swinging from one nerve cell to the next. There are some things that just bother me about my MS. Ever since going to university in 2011, I pride myself on showing off my smarts. I expect a lot of myself, a bit too much, and anything less then an A, is not okay in my books. I’m known in most of my classes as the achiever or the know it all, that I’m just really smart and it’s just not fair to the other kids. I find this downright hilarious because if they had seen me before, I was doing drugs twice a day. I was the kid people said would be dead by 20. And now here I am. I guess on the bright side, I am both book and street smart.

Then you have my disease. No one would ever guess that I had MS. My friends are all high achievers, either in medical school/law school/business school/with masters under their belts/organizations on their belts/ and so forth. They are not the people you share your weaknesses with. Even though I go with the perfect act, I am very aware of my fatigue, of the slight tremors present in my left hand when I write/type and the headaches, which are all signs of my MS screaming because she is simply dying for my attention! The friends I have told, they laugh it off, they don’t believe me, they call me a bad person for “pretending” I’m disabled. It’s only when I shove my needles in front of their face do they stop laughing. It’s only when I put the CD of an MRI scan I had gotten from a past research study, which shows my countless lesions, blaring bright on my laptop screen, do they stop smiling.  Then they either treat me like I’m infected or pretend the past 15-30 minutes never happened. Tada, magic!

This week I had gotten enough…

and I had gone to the Physical & Sensory Disability Services at my school to get registered. I had my forms filled out, with my neurological doctor’s comments and everything, in a purple little folder I had created for my counselor (I was quite proud). While walking my way down the hall to the office, I started daydreaming of the mutual understanding I would soon feel, of that connection I would feel with my counselor,  and of  receiving the gift of having a person being there to LISTEN to little old ME. In short, I was delighted. Once I had gotten there, the women behind the desk took one look at me and she had said, “Honey, you’re in the wrong place.”. I had asked what she had meant and she said in a slow drawl “this is a place for people with PHYSICAL disabilities love, you are probably looking for the general counselling disabilities services which is in _____ building”. I had looked at her and opened my mouth to speak when she said again “This building isn’t for a pretty thing like you!”. I looked at her, looked back  at my folder, and I had shoved my folder in her face and walked away. I shouldn’t have done that, but it felt like my head was rushing and I couldn’t see straight. I needed air. She had called soon after to apologize, but the damage had been done. My disabilities might not be apparent to you, but hey, take a copy of my CD and let’s see who should be in that building “love”. I am tired of people not understanding what’s going on with me. It would be nice to have my brain as a showcase for everyone to see, so they can just quit it.

2 Responses

  1. danben says:

    I can fully understand how frustrating that could be, to have to go out of your way to have to explain that you carry this too frustrating disease when others don’t see it.Have had MS close to 7 years and early on I wish I could have taken it as seriously as you had for I refused any help the first 3 years it was only when it got really worse I decided to finally see a doctor and neuro and had the MRI and all that jazz and was told I had primary progressive MS.I am so pleased you can function somewhat normally and let’s hope it does not get worse and I know that feeling there is nothing worse than to be called a liar when you are not one, stay strong firmbeliever 🙂

  2. Val says:

    I had the same infuriating experience with my school’s accessibility office. Only I didn’t give them my scan, because I was in denial. Thankfully all my profs let me type my exams in class anyways, since I couldnt write with one hand.