I was a slacker last week and didn’t announce that it was Multiple Sclerosis awareness week. As I laid in bed last night I was just thinking about how different life is 4+ years after my diagnosis. So I thought I would make up for the lack of promotion last week and give you an idea of how just a single symptom throws your life of track significantly.
Lets rewind to Sophomore year of high school- age 15/16.
I have always been an over achiever and HAD TO be apart of every organization in school. But it went further than just being apart of every organization because I then wanted to be a leader in that organization because I hated not making a difference. I was at the top of my class and there was no excuse to not get A grades. Sure my parents had a lot to do with that but I had the inner drive to get those grades and hated anything else.
Enter first symptom here: loss of feeling in my feet. So if you didn’t know already I live in Michigan and Winters here suck pretty bad. But to compensate for the lack of feeling in my feet I wore flip flops all year ’round. hmmm… I am sure my parents thought it was just a weird teenager thing.
So lets fast forward slightly to Senior year of high school- age 16/17
I started slipping cognitively and my grades started to show it. I thought that I was just taking too many hard classes or that I shouldn’t be taking pre-calculus online. Maybe the fact that I was in and out of the Doctor’s office every other week had something to do with it? But then I remember overhearing someone in the office say that I almost didn’t graduate because I had missed so much school due to appointments. Something was wrong but no one knew what it was and that is more frustrating than just getting a diagnosis. Sure enough I still graduated with a 3.85 and 5th in my class.
Moving to Freshman year of college- age 18
I got into a prestigious engineering school with the advice of my Mother and I was ready to start this new chapter of my life. I was excited because I was going to spend 10 weeks at school and 10 weeks at a real job that they give you and so on! But my grades were TERRIBLE and it didn’t matter what subject it was. It was one of the most frustrating things ever. I would study and go to class and nothing really was sinking in. Sure I partied like any normal college Freshman but I could not figure out why I had to drop classes because my grades were just atrocious.
I got hired to be an industrial engineer co-op at UPS in Illinois. HOW COOL! I was working at the largest UPS hub in the country and the opportunities with them were perfect. All the students they took in, they hired after school was over. Life was good. Something was off .. but I chalked that up to a big life change and I started to accept that maybe I couldn’t be the best at everything because clearly I wasn’t compared to the other co-op.
I go back to school for my second term of classes and yet again suck. So I started thinking maybe this was just the worst idea ever to pursue this degree. It sure was an expensive one to be sucking at! I was paying $40,000 a year to fail and/or drop my classes. Umm… ouch!
So that Summer I got to go back out to Illinois and work again but this time I was in so much pain and nobody knew why still. So I picked up a part time job to keep my mind busy so I would be able to ignore it. I started delivering pizzas for Pizza Hut in addition to my UPS job. I was probably working 60-70 hours a week at this point. But I still couldn’t help doing research online during those nights where I couldn’t sleep because my body hurt so incredibly bad. I started to notice more and more symptoms creep up on me and eventually I cut my work term short because I needed to go to the Doctor and figure this out.
Fast forward to after diagnosis- rough age 20
I try taking a few classes at a local community college. I figured that all I was doing was taking a few classes and living at home with my Mother that I should be fine because they figured everything out. Sure enough every time I tried to study I would fall asleep or would stare blankly at the pages for hours. Still frustrated I just gave up on those classes. Trying to take these classes was adding to my overall debt and I wasn’t getting a thing from it.
Fast forward to last Fall- age 23
I take a class at my new college… and ace it! OK maybe it was a fluke because it was just a simple class but it got me back in the groove of the whole school thing. So I take a hard class in January and an additional so-so level of difficulty class. I aced my hard class and I am still in my other class but I am holding an A grade in that one as well. And I am starting two more classes tomorrow. I am hopeful that the stress of the third trimester and the house won’t distract from the schooling too much but only time will tell.
It feels fantastic to know that all of those years and all of that money I practically sent down the drain wasn’t because I was incompetent, it was because I wasn’t in control of my MS. I am forever grateful that I was sent to Ohio for my diagnosis which is another post all in itself. I am forever grateful to modern medicine and particularly- Tysabri.
If you look up Tysabri you are going to see oodles of negative press. It is a pretty intense drug but if you take anything from this post- take away that it gave me my life back. It has a risk of a rare brain disease called PML. I am even one of the people who are more likely to contract PML because I carry the marker compared to others. I believe the rate is 1 in 1000 could contract PML and if you have this marker your odds are 50% higher bringing you to something like 1 in 500. But Michael and I both know that quality of life is by far greater than the ‘what ifs’.