Five Stages Of Grief
1.Denial and Isolation.
At first, we tend to deny the loss has taken place, and may withdraw from our usual social contacts. This stage may last a few moments, or longer.
2. Anger.
The grieving person may then be furious at the person who inflicted the hurt (even if she's dead), or at the world, for letting it happen. He may be angry with himself for letting the event take place, even if, realistically, nothing could have stopped it.
3. Bargaining.
Now the grieving person may make bargains with God, asking, "If I do this, will you take away the loss?"
4. Depression.
The person feels numb, although anger and sadness may remain underneath.
5. Acceptance.
This is when the anger, sadness and mourning have tapered off. The person simply accepts the reality of the loss.

In a recent post that I made, there was a mention in the comments about the 5 stages of grief. Which is one of those things that I've heard about but sorta just yea, yea, yea-ed and didn't really consider. I'm not sure if I've ever really looked into this model until now and I gotta tell you, I'm not sure that I buy it. I do think that it nails down some of the major aspects of grief but to put them into clear cut steps like this, I think is a crock. I'm not sure if I'll ever reach true acceptance, because Idon't understand what my future will hold.

I think this step might work for a death, or divorce, or job loss or something, but for our disease I do not think this model works. Hell, I might run through that whole list in one day. I think that if I were to follow this list I would be eternally stuck on #1. I have a big problem with denial...not denial of the MS, but if what it restricts me from doing...or remembering...or thinking. And I also think that no matter what kind of "support system" we have, we will always feel some sense of isolation. It is incredibly isolating to be feeling something that literally no one else can understand. I go through stages related to this model all the time, but to say that the anger, sadness, and mourning will taper off is not something I can accept. I do not think I'll ever stop being upset in someway about this. I can accept that I have it, but for me that doesn't mean I will not feel those other things.

I think that acceptance of a disease has an entirely different process that never ends. I was just talking to Dana about this and how I think its common after your first year of diagnosis to think you've accepted this disease. You think you're ok with it, and life will go on. But then shortly after, something clicks in your brain and you realize you haven't accepted it. I think that the path to acceptance is long and curved and it has breaks in it. I think the path to acceptance of a disease like MS is more like a labyrinth. You can try all you want, but you may never find the end.

You may have years where you're totally ok, physically mentally and then all of a sudden something happens and you are put right back to the beginning. The sadness, isolation, anger can rear their ugly heads again and THAT IS OK. I know I'm only 2.5 years in, and for the most part..I'm ok. But sometimes, some days I feel all 5 steps within 1 day or a few hours. It can be overwhelming and depressing, but remember a lot of people do this. Its so hard to accept something that has no clear cut guidelines. Remember that this shit is hard. Its not fun. And it can be down right painful sometimes, but this is life. If it wasn't this, it would be something else and the only choice we have is to live through it. You take it step by step, minute by minute, and relapse by relapse. Its ok to never stop being mad that this happened to you, but its not ok to let that hinder your life.

In attempt to milk this infamous comment for all it's worth, I'm going to turn this into some three-party dialogue and use it as an excuse for some lame writing. As I'm sure is the case with Jackie, I would in no way discourage people from visiting this site, or commenting here. In fact it's been super exciting for both of us to read the comments and be able to sort of engage with others who are in the same boat. It's no secret, we love that people are reading this, and we love comments, no matter what sort of reaction it may be. This disease is messy, but so is life in general. We're talking about it honestly, and that doesn't mean everyone is going to agree with our individual opinions, ideas, or attitudes for that matter. I think most of us are "grown up" enough to realize this though, and I'm probably just sounding redundant now. Even though this is just the internet after all, I am with Jackie, and commend this particular reader for speaking her mind and for giving my lesion filled brain something to ponder on today.

So it was this particular sentence that got my wheels turning, "the younger your DX'd with MS, typically, the more you're in for the long run." My first reaction to this would be, "no shit Sherlock." But my point of "chiming in" here is that this sentence got me thinking about another aspect of being diagnosed young. Let's face it, getting diagnosed with a disease when you're ANY age would suck. Being a teenager or twenty-something or thirty-something however, doubly sucks. I fall into the "twenty-something" crowd, which in my particular case also puts me into the "still figuring it all out" group. I would like to add to this though, that I hope I don't get to a place when I am forty or fifty, of thinking I know it all. I would like to be constantly evolving, changing, growing, learning, what have you. That said, everyone seems to be really adamant on making sure you know that MS shouldn't keep you from doing anything you want to do, and not letting it change your plans. I like it when people who haven't been slugged in the gut with a runaway ball give you this advice. Sure, in the overall grand scheme of things, this disease is not going to change the WAY I live my life, as in what kind of human being I am going to be, but it's certainly changed a few of my plans. College is a good example. I wish I would have had my shit together and finished school say, five years ago, but I didn't. At 27, I am only halfway to a bachelors degree, and I didn't really have any huge issues with this until MS came along. I have had to re-think my plans for school. The university/major/career I had planned on are seeming less and less feasible to me with each passing day. I am now trying to figure out which ONLINE degree from a state university would be most likely to help me get a job that I could stick with through varying degrees of disability in the future. So there you go, I am indeed changing my plans for MS. The truth hurts. 

Another funny thing about being younger and being diagnosed, are the comments like "you're so lucky the doctors caught it in you so early." Again, they are generally coming at this from a place of compassion and care, and in this sense I do appreciate it. I cannot however deny that I find comments like these inwardly annoying, and now outwardly annoying via the internet. Minus some ideas about environment or viruses, we don't know how the disease develops, and according to my neurologist anyway, there isn't really any way to tell how long I have actually had the disease. What if they didn't catch it in me early, maybe I have had it for ten years and didn't know until the symptoms became such that I was able to finally be run through the gamut of tests and diagnosed. If this is the case, I would have rather started developing the disease when I was thirty, be diagnosed at forty, and started on a treatment that I was "sure" was keeping my disease from progressing. This wasn't the case with me however, and I'm not going to cry about it or anything... okay maybe I have, but not today. What. Ever. 

Life, with the addition of MS is still going to be thrilling, just slightly more messy. I for one enjoy sloshing around in puddles, but not every single day.

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.