Jan 052013

This period of being unemployed and attempting to be declared disabled by the US Government has been wrought with enlightening moments, as well as some heavy duty downers. I have been spending some time with my thoughts during our vacation, and now while we’re home recovering, trying to find a way to say what’s on my mind in a succinct sort of way. I mean, I know what’s up there but it’s akin to snippets of flashes of phrases that I haven’t been able to string together. I don’t think that’s a result of the foggy brain because I’ve been back on the little pink pills again (actually they’re not pink anymore – they’re orange). At any rate, I’m going to attempt to jot down some of the thoughts and minor little epiphanies. Bear with me…

When I was first diagnosed, of course it was devastating, but through that devastation I tried to convince myself that there was some reason or huge purpose to my ill fortune. That is utter and total bullshit. Complete hogwash. It’s right up there with the thought that I’m a better person because I have this stupid chronic, progressive, debilitating, shitty ass disease. I guess I told myself those things in order to try and live through the initial devastation. And I guess I continue telling myself those things in order to try and live through the lasting devastation. At some point in the past 2 years I thought I was maybe coming to terms with it all…in reality, I’m not. I have never even come close to what is referred to as acceptance. I most likely never will.

I have no faith, no hope, no dreams that there will ever be a cure… at least not in my lifetime. I have no hope that I’ll ever feel any better than I do right now on this day. Ever. This is as good as it is ever going to get. That sorta sucks to realize. Of course, I have realized this on many occasions but then shoved it to the back of my mind because surely there must some purpose. Right? Surely there is. It can’t just be that I’m completely unlucky and unfortunate and am sick for the rest of my life. Nope, it can’t be that.

There are so many “feel good” clichés that we tell ourselves or more frequently, others tell us. You look so good. You are strong. You are brave, you are a better person. Bullshit, bullshit, bullshit. I am none of those things… or if I am, it’s because I was before the dreaded beast took up residence in my head. There is no way I look so good… I’m a middle aged fat girl with faneck (think cankles of the neck), saggy boobs and two tummies. I’m not really all that strong… or brave. I have no choice in the matter. I either keep moving or die. Strength and bravery have absolutely nothing to do with it. Think about it… really think about it. What about this disease makes me strong? What choice do I have? Just because I get out of bed when I feel like shit or because I go to a game using a cane so I won’t miss out on life… those things don’t make me strong. And brave? WTF is brave about my life? Nothing. It’s not like I’m facing the front lines in some third world country war or anything. I have yet to figure out what about my existence has made me brave. And lastly, I am not a better person. In fact, I’m probably worse. My language has gotten horrible, I’ve gotten more selfish, I’ve told more people no than I can ever remember telling no. I think more of my self than I do of others. I know it’s necessary but those things in no way make me a better person.

Ok that’s enough for now… there is more. Lots more.

Being an adult is like looking both ways before you cross the street and then getting hit by an airplane.

  17 Responses to “Putting Some Thoughts Together”

  1. Sheri, as I read your “vent,” I said, “Yes, That’s it, Perfect descriptions!” So, you’re certainly not alone with those thoughts. I wish I could hang on to hope — but I just can’t. I try to find joy, and I do look for it, but I fail often. So, just know that many of us share your opinions, and we’ll all just keep paddling along in this leaky old boat.

  2. Keep keeping on. Sounds corny but I grumble it many times a day.

  3. I get it and it sucks. Sharing my Brain Under Attack film and my digital poetry experiment on the surface, which is my way of trying to create new pathways in my brain. We have only two choices, continue or give up. This month I surrender my driver’s license due to the MonSter. (((HUGS))) to you my friend. Oftentimes thinking too much is harmful to your well-being.

    Realistic Optimism- to face reality and still manage hope.
    ~Michelle V. Alkerton

    Stay inspired!

  4. Yea, and I still love ya! So there….

  5. And amen, amen, and amen. You’re preaching to the choir. Here’s the thing about hope, though, at least for me. If I don’t hold on to hope, I feel like I might as well just turn out the lights. And I think about Londoners during the WW II blitz or the people in concentration camps and know that though the odds and reality for many (most in the camps) were that the outlook was bleak, some managed to hold on to hope. Viktor Frankl’s Man ‘s Search for Meaning has been a source of inspiration for me. A concentration camp survivor and psychiatrist, Frankl wrote this short classic to try and understand the human will for meaning, even in the most dire circumstances. I am sure at Amazon you can find it used for next to nothing. Hang in there. You are a beautiful person. Your artwork alone says it.

    • I am going to look for that book… they may have it at the library even! Funny you mention holocaust right now.. I recently finished the Night Trilogy and just yesterday I watched the Pianist… great great movie. Oh and a few days ago I watched a movie about a lady doctor in the camps who survived & went on to open a practice in New York. I can’t remember the name of the movie but it was so touching and inspiring

    • I’m with Judy. Your artwork is truly beautiful and a great demonstration of how amazing you are. Hang in there. Best, Christie

  6. Hooryay. I am not a better person (which is probably a shame because there is PLENTY of room for improvement. Bravery implies that we have some choice in the matter. Strength? Are we talking about the woman who cannot open any jar, walk any distance, stay awake? I do not think there is any chance of a cure until we find a cause. And sadly, that is much more expensive than simply making new wonder drugs to charge us an arm and a leg for. In a sick, sad way my diagnosis was a relief = there was something wrong, I am not (just) a hypochondriac. Just the same, if screaming would take it away – you would hear me from there – without the benefit of any technology at all.

    • I agree – getting the diagnosis was a good moment because it finally validated that feeling that something was dreadfully wrong… i’d been living with that feeling for years.

      And I also agree…. it is more cost effect and profitable to keep us all sick…. sad but true

  7. Yep, you have come to the same conclusions I have. I am no where near acceptance, resignation maybe. I am not a better person as a result of having this nasty disease, I was a great person before MS, now…not so much. If there is a “reason” for me me having MS, I wish to hell someone would let me in on what it is. There will never be a cure in my lifetime, even if I live to be 100. Cures are not profitable, plain and simple. I am an old, fat, wrinkled, grey haired ole lady (and not much of a “lady”), who limps, falls and can’t do a heck of a lot of anything I used to. I won’t use any of those “feel good” cliches Sherri, ’cause I hate them. What I will say (’cause I am a daughter of British parents) is “Keep calm and carry on”. What the heck else can we do?!! Thanks muchly for sharing, I needed to vent too!

    • keep calm and carry on… i like that. it works without being pitiful or placating…

      there’s not much else we can do. we have no choice but to keep living life the best we can given this lot… i still wish there was a reason or purpose though…

  8. Yup. The disease takes over and most things take second place. I don’t feel stronger or better because of Lupus or DJD. I don’t feel stronger or better because of living through the pain, the fog, the unsteady legs and shaky hands. And, because I’m angry about this condition my language got worse too. The anger sometimes creeps up when I least expect it. Sometimes its right there at the surface and I hold it down, sometimes I’m looking for a fight. I’m just angry. I’m screwed and I’m angry. I’m screwed, angry and there are no answers to why….however, I say and believe that in order for me to thrive with this disease I have to have something other than Lupus. I have to have something that makes getting up worth it. I need something to look forward to. Keep the nothing projects, the busy work. I need to produce, to be an active part of society. I need to feel like I belong with others and not feel like a pity magnet. I just need normal but the only normal I get is the the normal I make within the confines of this disorder. That sucks but right now, I’m willing to move within the confines of this disorder. It is so, so hard. Like you, I don’t have acceptance. I have fear and anger and resentment. I’m mostly afraid. This can’t be happening, right now when things could be so good I have this? Where’s the justice in it? Boy oh boy does it stress my heart to know where I’m at physically right now. And how am I to accept what is forever changing from worse to worse? I guess I just try to remember that I need more than this illness. I need a purpose. I need more than Lupus, I need a reason to get up, something productive to look forward to. That’s my suggestion to you, have something productive to look forward to when you wake up otherwise it’s just you and the disease.

    • sometimes i wish i could get angry. i just get upset… sort of like the grand episode of feelings being hurt. pitiful and awful. anger would be a nice change i think. i think it’s important that we all have something else. i don’t want to be just this disease, although some days it feels like there is nothing more to me than the disease. almost as if i would cease to exist if the disease went away. i know that’s not true but it’s so all encompassing that it feels that way sometimes. and you hit right on… the progression is what makes it so awful. fear, resentment, and constantly having to adapt to the changes …

  9. Agree, there is often an irrelevant amount of judgemental language and attitudes (both overt and subtle) attached to chronic illness and disability both by ourselves and others – maybe it is some need in the human psyche/society to rationalise (like looking at abstract paintings or clouds and ‘finding’ scenes in them – not sure if that analogy can be taken very far!)??

    I think, it can feel disempowering to make decisions and take actions I know I would not have pre-ms weirdness eg saying no to events and people or attending in modified sorts of ways to old me – cause it can feel like it is impacting on my identity. Agree too, that managing and coping with that is not bravery but have come to think there is room for some somewhat out-of-fashion concepts like grace and humility.

    Hmm much food for thought. Ta for sharing.

    • oh! i really like the abstract reference… i could see running with that one… i think finding the good in something so abstract gives our mind reason and purpose. i am probably totally off base there but it sounds good LOL

      yes, i too have felt the changing identity. i think that is what i fight against more than anything. i want to remain the person i have become emotionally, mentally, morally… but sometimes i feel that slipping away…

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