I try and follow the whole "if you don't have anything nice to say don't say anything at all" motto with this blog. Truthfully though I've had lots to talk about but I couldn't figure out a way to discuss it without coming across like a jerk. That being said, I've waited about two weeks before actually sitting down and writing this, so I'm hoping that I come across a bit less angry than I was two weeks ago.
Remember how I mentioned in my last post that I quit Facebook? I've never really been active on it but always found my self "hate scrolling" through peoples posts so I just stopped logging on. One major flaw in this plan is that people can still tag you in things you don't want to be a part of and if you aren't logging on, you don't see what your name is being associated with.
Imagine my surprise when my best friend texts me and let's me know that there's something on Facebook that I need to see, since I've been tagged in it. I log on, not sure of what I'll find, and discover I've been tagged in a post that quite frankly I don't feel all that great being linked to. Of course, for me to continue with this story, I'll first supply some details to fill you in to what's been going on.
Ever since I was diagnosed with MS, I've been team captain of a Walk MS team that included my college roommates plus one or two other people that tagged along every year. In the past years, we've had a really good time, and when we left college I figured it was a good way to get everyone together for the day since we weren't living together anymore. Last year was the second year out of college that we participated and I can't say that I enjoyed it. Of the five of us that walked, two people decided to walk a pretty hefty distance in front of the other three and basically pretend that the other three weren't even there. I don't usually ask for a lot from people, and really all I expected is that we would show up, walk some miles as a group and have fun for a few hours. That didn't happen. It just seemed so click-like and strange and as Steph and I drove away from the event we agreed that it just wasn't fun anymore. We had walked the whole time in the back, with another one of our friends and it was just so awkward even after, as we sat around after the event together.
That experience rubbed me the wrong way, but I chalked it up to a "off day" and just figured I wouldn't let it bother me to much. Things haven't really gotten much better, and I even hinted at distancing myself from some people in my last post and I decided this year that it would be better if our team didn't participate together. Of course I still encourage everyone to still participate if they want to, I'm just choosing not to put myself in that situation this year. Instead of walking this year, I'll be cycling my way through the Finger Lakes again, raising money for the same cause.
So now that you know the back story, lets continue on with today's post:
About two weeks ago I got a text asking if I would be heading the team up this year and since I didn't want to get into some texting fight I choose just to say that I would be out of town that weekend. (I know that eventually I'll probably have to "break up" with this group of friends but I think breaking up with friends is often harder than it is with a guy) What I didn't expect was a post on Facebook a few days later announcing a new team featuring old and new team members from our past team with a new name because the old team captain (me) decided she no longer cared about doing it anymore. Of course this new team also choose to uninvite some additional people, so I'm assuming this new team is super selective (i.e. people and their boyfriends). They went on to say that the old team captain (me) was putting her boyfriend in front of her friends and no longer participating. It went on to link a page that tells my whole MS story because I really need 400+ of their closest Facebook friends to know everything about my diagnosis.
When I was reading that post, I was on speaker phone with my parents who were somewhere in Virginia and I was livid. I talked to Erik, Steph, and my friend Joe later that night. It took four phone calls and a night of sleep before I wasn't angry.
It's not that I am angry at them for starting a new team. I'm quite happy about that, and will happily support anyone supporting a great cause. What bothers me is that fact that someone would feel the need to say that I no longer cared about the team, but then use my story as their way to get donations. Plus, if you choose to use my story, it would be nice if you wouldn't leave out how the past 4.5 years have gone pretty smoothly.
I find it surprising how other people view how MS has affected my life. Certain people say that it ruined my life because I am unable to do things I did before. I have some extended family that think it's the worst thing ever that I have it and always seem to worry about how I'm handling life and living on my own. I often wonder what those people see when they see me. When I look in the mirror, I don't see what they see. When my parents look at me they don't see the same person they saw in the hospital, they see someone really pushing themselves to be the best they can. Has this journey been easy? No, not at all. It's been a rough ride, especially in the beginning, but as I go onto my 5th year of being diagnosed I would have to say it's one of the factors that is driving me to push myself harder than ever.
I don't tell people that I meet that I have MS, because I'm choosing to not let it define me as a person. I don't need to be treated any differently than anyone else just because of this disease. I also don't need people telling their 400+ Facebook friends for me. When people I do know reach out to me about someone they know getting diagnosed I will happily hand out my number and assist in anyway possible, because I know how hard it can be, but you won't find me on the street handing out flyers advertising that I have it.
I could easily look back and dwell on the fact that once upon a time I missed almost a semester in school, couldn't talk, couldn't walk, couldn't feed myself and feel sorry for myself, but what good would that do? That's in the past. I worked hard to get to where I am today. There were a lot of tears along the way, especially in the first year but today, I'm thriving, and while I can't predict the future I'm choosing to live in the present and focus on all that I can do now.
I sincerely hope that this post does not rub anyone the wrong way. It's just my way of releasing some frustration that I've had recently.