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.

What if you didn't have MS anymore? The identity you've created after your diagnosis was now different, and the medications you take were no longer needed. The people you know with MS, you no longer have that first tying thread. Now before you jump for joy at the thought, what if you didn't have MS anymore because you were misdiagnosed?

I read a blog the other day about a woman who was misdiagnosed with MS and later received a different diagnosis after a few years and medication for Sjögren's Syndrome. It really got me wondering mostly because there is this teeny tiny little bitty voice in me that has always said "they're wrong" since my diagnosis. However, most of the time I think that little voice is a big dose of denial and have since moved on, started a website and jumped head first into the MS community. But often I read about other diseases that mimic MS and I really wonder what it would be like if I found out...I didn't have MS anymore.

For me...MS is apart of who I am. Ever since my diagnosis my whole life has changed, the way I think has changed, and the person I am has changed. People tell you not to change yourself or your life after diagnosis, but I think that pretty impossible. I started the newsletter originally because I needed to find a way to accept my diagnosis and find other people "like me". And I did. I have found some amazing people who have helped me more than they will ever know. I have found people who smile every day, and who rarely complain. I have found a group of people who I can relate to and while I may never stand in the same room as any of them, I consider some of them my best friends.

I would say that while my conversations with these people do include typical life stuff, mostly they're about living with MS. We talk to each other because we have few or no others to talk to about it. If I found out I didn't have MS...what would we talk about? Would these friendships disappear?

I update this site almost everyday...if I didn't have MS...what would I then do? I do feel like because of this site, I spend WAY too much thinking about MS and that alone has taken a toll on my psyche, however imagining my life without MS at this point...I don't even know what I do. Its like starting over...and although I'm only 2.5 years in to this journey, I still feel like its taken me a long time to get where I am. I feel like getting another diagnosis would just make me start the whole ride all over again and I'm not sure regardless of the new diagnosis that I want to do that. The reality is that if we are misdiagnosed, its not like its going to be something simple/fixable. Its most likely something very similar to what we're dealing with now. I think if I had a choice, I'd keep my MS...and my MS friends.

I had a conversation with a good friend today and she was explaining to me how it just didn't seem like I was affected by MS. "I know I don't see you every day, but you seem like the same Dana you were before MS," she said. I think that what she really meant, was that it was hard for her to understand, because it didn't seem like I was physically dealing with anything. I did a lot of explaining about MS, and how it works. I explained that following my attack in November, there are parts of me that aren't ever going to be the same. Symptoms that I am going to continue to have, on a coming and going basis. Because my symptoms aren't necessarily painful, and because they aren't visible to others, I understood why it was so hard for those around me to really understand. I explained to her that I didn't really expect anyone to "get it." I didn't mean this in a negative way at all, I was just being honest. I said that if the tables were turned, I would feel the exact same way that she did. When I was having this talk with her, I ended up making a point that actually sort of shocked me, since I don't feel like I'm all that great at expressing myself lately. I told her that although my symptoms aren't generally painful, and I'm not scootin' around on four wheels, I am reminded of my disease each and every day. Whether it's my little pinky that's shaking uncontrollably as I write this, or parts of my face going numb, or some random muscle twitching like mad, for just a few minutes. These things are so small and they aren't typically painful, they are irritating at best. Everyday though, these invisible symptoms are my reminders. I am reminded each and every day, sometimes in very small ways, and sometimes more dramatic, that my body is ever changing. I explained to her the fears that I have had to deal with, have been one of the most difficult parts of this disease. I like to think I'm tough enough to actually deal with the physical or cognitive symptoms that may rear their ugly heads, but I fear what this would do to the people I love. Maybe I'm not yet ready to admit out loud that I fear becoming a burden on those that I love; that I'll be a source of shame, or that my life will cease to provide some greater purpose. I'm smart enough to find consoling words for myself, so I don't necessarily feel like this is something I need to hear from others. I am not so consumed with these fears that I can't see straight, but for me to deny that there are moments when I become overwhelmed by them, would be downright false. 

I am just five months shy of finding out that I have MS. This is still fresh for me, and sometimes I forget how new it really is. Although I'm not dim enough to feel like I have totally come to grips with this disease, sometimes it feels like I'm just starting over completely, back at square one. I found myself hanging out on the bathroom floor yesterday, begging whoever the hell was listening to my silent plea, to just take this away. "I don't want this anymore" was what I kept saying. How appropriate that I should hide myself away in the smallest room of the house. I feel like so much of this disease is about hiding from others how broken we sometimes really feel. I know I'm not the only one who spends unnecessary energy making sure that others don't know how shitty I really feel, and I'm talking about emotionally. And on the flip side of this, when I am spending time with others, I generally don't want to have go out of my way to let them "know" angry or sad or scared I sometimes feel. I don't want to beg people to see how "affected" I am. This surely only adds to the fact that it may seem that I haven't been changed in any way by MS. This disease has left me at times, feeling more isolated and alone than I have ever felt in my life. I don't necessarily feel like this is something that will change either, and I don't totally think that it has to. I have a community online in which I can find true understanding, and I have family and friends from which I can find true compassion, but I think there will always be moments where none of this is quite enough. I have read various crap about how we're really supposed to be our own best friend, and I sort of understand this a little better these days. There will never be someone who knows "me" better than me. Maybe these little "bathroom breakdown" moments are just part of what keeps me being "mine" and mine alone. But anyway, enough about me and my feelings. Barf.

Warning: Really bad metaphor to follow. Control your vomit reflexes please.

So I had something happen to me last night that changed my views on things a bit. In order to help talk about this in the vaguest terms possible I'm going to use a giant lame-o metaphor. Its gonna be exciting.

I often talk about cards. What ones we get dealt, and when to play them, and as it turns out I'm a so-so poker player but I'm not really one to be giving advice about poker. But we all get dealt a hand in life. Some of the cards are shitty. We have MS cards, which we'll call a pair of 2s because that makes for a stupid poker hand...but at least its a pair. Its a constant, its something to count on in one way or another. Well lets say you're playing 5 card poker and you get a bunch of other off suit cards that don't help you do anything. Its a shitty hand, and that shitty hand will dictate the way you play your game in life. And I have been pissed about the hand that I got dealt for a long time.

And even when I drew 3 new cards I always expected shitty ones because that's what I was used to having. Deuces and a bunch of other shitty cards, no matter who was dealing. So here I am stuck with this shitty hand bound to lose.

BUT...last night something happened. Someone told me something, that I never considered. What if...a new game starts. What if periodically we get dealt a new hand? Maybe we will always have a pair of 2s but the other cards could all change. Maybe I get dealt 3 Aces after that. Just because you got bad cards before, doesn't always mean you will continue to do so.

And I don't understand why I never got this before, and why making lemonade out of lemons never crossed my mind. Sometimes we need to really start over, press the reset. We know we have MS, maybethat's our one guarantee. But nothing else is guaranteed to do well... or to fail. Not everything will suck because you had to fold your first poker hand at life. Maybe you need to fold your cards, think of it as a necessary loss, and get new freakin' cards. There are a ton of other winning hands available with a pair of twos, that maybe you're missing out on because you're not ready to fold. I gotta tell you...I learned. Fold the bad cards. Stop bluffing your way through things. Let go of the bad cards...Get a new hand.

And if you know nothing about cards...here's the cliffsnotes: Hate, Anger, and fear are all baggage. Let it go before you risk losing something worth keeping. Just because things have been bad for you 4 out of 5 times...that still leaves 1. It doesn't mean everything will always be bad.

Hey...I never claimed to know it all, (or be any good at metaphors), and maybe some of you out there already got this advice and took it before. But until someone broke it down for me, I couldn't see how to move on from the past.

Not only am I getting new cards...I'm buying a whole new effing deck. One of the nice ones, that are all slippery and have holes in the center and have a nice wooden engraved case with my name on it.