as serious as your life

before i was diagnosed with MS i was more than hyper. i went to university full time while working full time and still found the hours in a day to volunteer, date people, see my family and friends, and do aerobics/ mountain bike/ go to the gym and do yoga. i had a full schedule and managed to find time out for myself... staying balanced. i was not the type of person who was busy because i was running away from things/ from myself. happy. fulfilled.

as many of you know, the last few years have been pretty slow for me. i have completed my undergrad (i only had 3 courses left when i started to get the symptoms of this neurodegenerative disease) - and completed all of my course work for an additional degree. i have worked some part time jobs under the table (often going for 6 months or more without working a single day) and have volunteered as a peer counsellor and a committee member for the MS society. and that’s it. i can go weeks without meeting a single obligation (aside from various dr. appointments). the biggest commitment in my life right now is getting the laundry done and trying to make it out to d&d once a week.

a friend of mine who i don’t know as well as i would like - but who also has MS and has been diagnosed for over 10 years - recently helped me quiet some of the pains/ troubles that i have been having with my life. i hope that she does not mind me paraphrasing: the first 3 years are the hardest. you feel like you will never be capable of making long term plans - of committing yourself to... anything. having her say this to me leads me to believe that things will change. that i will once again see myself as a capable person, even though my capabilities have changed and my ability to plan for the future will always have to allow for ongoing/ unexpected medical snags.

i recently went for an interview with an organization that i deeply respect. it is a permanent part time position. 20 hours a week. the work itself will be challenging in an emotional sense - but the tasks will be things that i am more than capable doing. the woman that interviewed me will be contacting me mid-next week to tell me if (out of over 200 applicants) they have chosen to hire me. my feelings are mixed. the last time that i was hired at an organization that i respected this deeply (which was at the Holocaust Education Centre - about 2 years ago) things ended badly. the pressure of having to be ‘okay’ when i woke up in the morning made me, literally, ill. i only worked there for 2 months. by the third day, i was waking up in the morning, throwing up, and crying all the way to work. my body and my heart hurt too much. i was not okay.

i wish that i could explain it to people. explain that it is not the same for me as it is for them. i remember when i use to have a ‘crappy’ day, i would grab an orange juice, buck up, and by noon everything would be all right. and now things don’t work like that. if i force myself to do *anything*, it destroys me. the pains race through my body, i become dizzy, disoriented, and nauseous. my whole body buzzes and trembles. i feel like i am drowning or dying.

and i only wish that i were exaggerating for effect. and i wish that it was psychosomatic. but here i am, just approaching the corner into year 3 of living with MS - and it is still hard to see how i will be capable of doing anything... besides laundry.

if i get the job that i interviewed for, i am worried that i will disappoint myself - that i will disappoint others. that i, and people around me, will wonder - why i can’t just buck up and show up for work 4 days a week. to be honest, it all scares the hell out of me.

people look at me and think that i am all right. a lot of the time, i am not all right - and the pressure of having to fake it is just too much for me.