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.

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.

So I got this invitational flyer in the mail the other day, from MS ActiveSource which is a sort of educational program run by Biogen Idec, the drug company that produces Avonex. In early April there will be an "educational event" in which my specialist Stanley Cohan will be speaking, along with author of MS and Your Feelings, (which I liked quite a bit) Allison Shadday. For some reason the thought of going to an event like this sort of freaks me out a little. If I knew that I could go and not have to talk to anyone if I didn't want to, then I think it would be great. If I was totally miserable and I knew that there would be a way for me to politely leave the building without making an ass of myself, then I would definitely go. What if I show up to this thing and I'm the only one under the age of fifty? 

Okay, so they are also trying to entice people with a free dinner. The whole dinner thing is a bit of a turn off for me. I either want foie gras or french fries, but I'm sure the meal with be some sort of unhappy medium. What would really bring in the masses would be an open bar. Who's planning this event anyway? 

On a more serious note, I have these back and forth feelings on what is positive for me in terms of learning about and dealing with MS, and what is not. I want to be an "active" participant in my disease and learn as much as I can, but going the route of "educational events" leave me sort of uneasy. I suppose this could be a little of the hermit in me, coupled with my fear of what other MS patients in the room may be like. I am selfishly afraid of going and seeing people who aren't doing as seemingly well with their disease, and just feeling deflated by it. I seriously need to get over this way of thinking, and perhaps this would help me push through that. 

I went ahead and registered for the event just in case. I sort of have this dare with myself to go. I think something like this is worth trying at least once, and the fact that my specialist is speaking along with Allison Shadday, gives it a little more pull. I suppose the worst that could happen is I go and it ends up being butt loads of propaganda trying to boost up Avonex. Or maybe I will come home feeling a little more confident or inspired somehow. I just don't know.  

Either way, I have until April 8th to decide. 

So today marks week seven of being on Avonex. After my horrid shot experience with week five, in which I called upon the nursing expertise of my neighbor to inject me, I am back on track as of last week. I have been practicing on an orange *almost* everyday, and I guess maybe that's helped a little. My neighbor came over both last week and this week to sit with me, and honestly, if she hadn't, I think I would have been in probably the same boat as week five. My big issue is that once I get my needle on, I sort of get it close to my leg, and freeze. Something I did a little differently today that seemed to work pretty well, was simply not looking as the needle went in. I just sort of place it where it needed to go, took a few deep breaths, and focused on the wall in front of me as I injected. My blood was definitely pumping, the heart rate was accelerated, but the longer I wait, the worse it gets. Ugh. I'm glad it's over, and next week will be the real test, since I won't have her nursing eyes here giving me the added pressure I need to just flipping do it. Overall, I do have faith in myself, I know I can do it. I think I've just mentally built it up to be this thing that's big and scary, which is strange, given the ease I had during the first few shots. Thankfully it's only once a week, which Jackie pointed out as the perk. Definitely the one and only perk.

 Tomorrow morning I go in for my first follow up since starting the Avonex. I am interested whether or not it will really be worth my time/money. I don't want to be one of those people that tirelessly complains about how useless their doctor is, but honestly, the neurologist I'm seeing right now seems pretty useless. He couldn't answer any of the questions I had for him at the last appointment. He sort of just likes to make things black and white, yes or no. He also enjoys answering questions by simply bobbing his head up and down, or back and forth. If there is anything that I have learned about MS thus far, it isn't flipping black and white. It seems to me there's an awful lot of grey area here. Acknowledgement would be nice. Anyhow, perhaps I'll go in tomorrow and he'll knock my socks off, if not with personality, then at least with some inkling of doctorly know how. I am crossing my fingers that my uber busy specialist will not re-re-schedule my appointment again, which is now set for April 14th.

 On another note, my mom dropped by out of the blue today, and she was all teary. She had been listening to Dr. Laura, whom she knows I LOATHE with a passion. There was a male caller who was 26, who called in for (ugh) Dr. Laura's advice. So he was diagnosed with MS, and he was wondering if it was right of him to continue to pursue finding a relationship, given the possibilities of disability in the future. My mom was seriously torn up after listening to this, which left me mildly depressed as well. I know that I haven't been diagnosed for very long, but I do remember the first month being the absolute worst for me, as far as fear and anxiety. I knew it would get better, and it has, although I'm by no means whatsoever "fear free" when it comes to my future. Is it possible to ever be completely free of fear when you live with a disease that can come and go, and hit you totally out of left field? I don't think so. 

Anyhow, I "secondhandly" felt super bad for this dude. Seriously, it's hard enough being an openly emotional girl, and dealing with this. Being the free spirit I am with relaying my true feelings, I really haven't been 100% open with anyone in terms of future fears, except for with my boyfriend and mom, and jackie of course. I wonder what sort of support system this guy has. If he was calling Dr. Laura for advice, I'm thinking he might need more people to talk to and confide in, and I'm not talking "internet hugs" or some crap like that. This dude needs to be heard, and needs somebody to tell him that he's totally normal for feeling the way he feels. My answer would simply be that there is no reason he shouldn't continue to pursue finding a relationship following his diagnosis. He may not find a cool chick right off the bat, who is willing to date someone with MS, but I believe he will eventually. And once he does, nothing is written in stone, MS or no MS. I don't think any of us can map out our future the way we want, in terms of the relationships we have now, and the ones that have yet to begin. We can work to make them the best they can be, and this is all we can do. I'm sure there's better advice out there, but in my sleepy Avonex haze, this is the best I can do.