Today is a monumental day in the life of this blog. Today we have received our first complaint...rather I have received my first complaint. And to be clear, I am not posting this to make fun or be a raging bitch on the person who left the comment. But rather because I'm here to tell the truth...from all sides. I thought long and hard about not responding to this comment publicly, however, I ultimately deemed it necessary.
Here is the comment:
I do have a COMMENT on this entry. I've been in a foul mood ever since I've read it. I'm angry I guess because I see YOUR anger. Freedom of speech gives you the right to be a cynic and spew your anger on others. The same freedom gives me a right to comment about it, well that and YOU as a web mistress, I suppose. You've made me not want to help young people like you any longer. I give up. Be a cynic. I just hope you're on a good MS drug. And I hope you stay on it. Reality is, you have MS. Check. Second, you're progressing. Check. You have to slow the progression of your disease. Being a cynic and being angry about it and posting this stuff isn't encouraging anyone, in my opinion. It's defeating. It's discouraging. It's deflating. It's wrong. It's anti-MS. Talk to me when you see a black hole on your MRI because you wanted to run a cool website and send out a newsletter that made you look all that. What. Ever. Yeah, so what if you didn't jump into therapy ASAP! I did get therapy right away--within a month of my DX--within six months of having any symptoms at all. My MRIs have been very, very good over the past nine years. No black holes, no additional lesions, very little progression, if at all. I'm very lucky but I still suffer, a lot at times. You don't know. The younger you're DX'd with MS typically, the more you're in for in the long run. I was DX'd when I was 40. You have no idea... None. Keep being a cynic. You'll look back at this in 10, 20 years, when you're all grown up and wonder why you didn't get on Avonex or Rebif or whatnot back in 2009. Girl, you have no idea. I'm so sorry for you. And I'm really pissed that I care.
As much as I would love to be all NU UH, PRETENDING TO BE AN OPTIMIST IS STUUUUPPIIIDD. I'm going to attempt to be a big kid about this one. Heres what I think, first of all I am thrilled in a positive way that you do care enough to even write your comment. Most times when things piss people off, they often avoid it, turn a blind eye and never return. So while I see that my pessimist has totally ticked you off, I do hope that you continue to frequent the blog, as between my pessimism and "defeating and discouraging" talk, we have some good information every now and again.
To begin there are a shit ton of other "young people like me" who totally agree with the things that I have to say and many others who think it and are afraid to say it. The reality is those sayings to a younger, hip, intelligent crowd are belittling. I do not believe that those saying will help anyone do anything. If a person wants to be a positive person, and rise above this disease, a stupid glittery banner with "I am the face of MS" on it, is not going to be the thing that keeps them from going over the edge. I find zero inspiration in those sayings. While I'll admit I am a pessimist, I think more so I am a realist. A saying will not change the world...a MOVEMENT however will. Those sayings are not raising awareness, they're not changing anything. They just sit there...and fake shimmer across my screen.
Lets touch on your "reality check" Yes I have MS. I, however, would not say that I am progressing. As I have stated before I am NOT on medication, and I don't intend to be. I have also had recent MRIs that show zero new lesions, and in fact those that I had are smaller. So I'm pretty sure that's the opposite of progression. Next, if my goals is to slow the progression of the disease, maybe for me, that includes getting out negative energy which involves writing about stupid MS related things. I may not take the typical medicinal methods to deal with my disease, but without any attacks in 2 years and a reversal of damage, I'm pretty sure whatever I'm doing is working. Not to say I don't have daily problems, but damn it that's nothing new.
I also did not post this website to encourage people. That is not my job. I am here to tell it how it is. No bull shit. No lies. There are a shit ton of other websites out there that lay on the optimism to no end. That's not what I'm here to do, and that's not me. If no one reads this website, that's fine with me, because it helps me. However, there are many actually who are reading it, responding to it, and agreeing with it.
Explain to me this "Anti-MS" comment? Yes you're right, everything I am doing IS anti-MS. I in fact hate that I have MS, so pardon me for not throwing a party with unicorns and balloons. If I were Pro-MS, I would think that would raise a bigger flag then the things I say. I am also, Anti-Cancer, Anti-AIDS, Anti-Diabetes...etc.
I don't understand how my running a "cool website" (thanks for the indirect compliment) will cause me to have lesions on my brain. I suppose you're referring to my negative energy, but again I'd rather put that on the interwebz than keep it all bottled up inside. And I did start on therapy right away, actually. I was on Betaseron within 2 months of my diagnosis, but after more research on my own and my own personal experience I decided it wasn't for me.
I may not be standing with you everyday, but for you tell me "you don't know" is a little silly. I do live with this too, just because you're older and have been riding the MS choo choo longer than I have doesn't mean I don't get it. Thats a little presumptuous, wouldn't you say? I also urge you to not feel sorry for me. I will not live with regret on my choices to stay off the meds, as that was not something I took lightly. You are right, you have been fortunate. You had 40 years before MS became a thorn in your life. Imagine if you had been in your twenties, imagine how that might have changed your thoughts, your views, your goals, your future. As you accuse me of having no idea, I think perhaps considering what this does to you mentally and emotionally in the prime of your life is something you have no idea about.
p.s. Thanks for telling me that my newsletter made me look "all that". Best. Compliment. Ever.
