Tuesday, November 1, 2011

Bridging The Gap

"People May Not Remember Exactly What You Did, or What You Said, But They Will Always Remember How You Made Them Feel"

I've been told quite a few times in my life that curiously, I have a "way" of explaining things that sorta makes whatever I'm talking about, not only understandable, but almost...palpable. (Wow - Kudos to ME, right?! : )

What's my secret? - I like to talk in metaphors...that's it! (Um...Sorry to disappoint...) But it's actually the only tool I have that enables me to "bridge the gap," between what I may experience that you may not understand. How do metaphors help with this? Well...it gives me the opportunity to allow you to momentarily "feel" (using symbolic analogies) what I feel. Actually, it's pretty easy...

I often get a LOT of questions from various people, asking me to describe my symptoms...most times they are surprised at what I end up saying (which I find extremely entertaining : ) So - here's the list:

Note: Thankfully, I do not feel like this ALL of the time, and I certainly cannot say that other Lyme suffers have the same experiences I do, but I CAN say that throughout my long history with this illness, every single one of these "metaphors" have been fully felt and expressed in the exact manner I describe below.

1) Q. What does having Lyme feel like?
    A. It feels like I'm trapped in prison with a really annoying, 
        life long neighbor. One who simply refuses to leave me 
Gosh...can't someone please (for the love of God!) get me one
of those "Get OUT of Jail Free" Cards! Sigh...this whole set-up we got going here, is seriously driving me BAT-SHIT crazy!!

*Notice how I'm "personifying" a bacterial infection here. This is not a mistake - every single Lyme patient I've ever met will tell you the same thing. They very strangely, and quite uncommonly feel as though they're playing a torturous game of ME vs. IT. They are oddly aware of its presence...which is something I've NEVER felt about any other type of illness or infection I've ever had.

2) Q. What do you mean when you say you feel 
       weak and tired?
    A.  Are you a swimmer? When you were a kid, did you ever
         have contests with your friends to see how long you could
         hold your breath underwater? If so, do you recall the
         sensation you felt, just a 
         millisecond before you 
         decided you couldn't take 
         it anymore, and came up
         gasping for air?          
         Remember how the "life"
         seemed to drain out of you,    
         and you felt your entire 
         body almost go limp as 
         you started to fade out (right
         before you came up for air)?  
         That momentary sensation you felt, the one that made you 
         feel like you were going to die if you didn't get oxygen...Yeah
         - that's how "weak and tired" I feel every single second on
        most days.

3) Q. What does the "pain" in your spine,  joints, 
        and head feel like? Didn't the IV Rocephin 
        help with that?
    A. Have you ever cut your finger, or some other body part, that
         eventually became infected? Do you recall what it felt like?
         It's an unmistakable burning, tingling, gnawing, infection-
         type pain. Now, remember when you came to your senses and
         FINALLY put some Neo-sporin, hydrogen peroxide, or some
         other topical antibiotic remedy on the infected area?
         Notice how doing so seemed to tame that "fire" you felt?
         How you kind of sighed with relief, knowing that doing so 
         was exactly what your body needed to fix the problem? It was
         soothing and comforting, right? The area surrounding my 
         spine, joints, and head feel very much like that "infected
         cut", and for the first few months, receiving the IV Rocephin,
         felt almost like a liquid Neo-sporin. It had a way of "taming
         that infectious fire" and it allowed me to pretty much get on
         with my day. Unfortunately, for me, the last few months were 
         different. I suddenly felt like I had a MUCH bigger "cut" and 
         was still adding the same amount of that liquid Neo-sporin. It
         just wasn't enough anymore, and I slowly felt that fire come
         back. It was only then that I just knew I was in serious 
         trouble...especially when my Dr. suddenly decided it was
         time to STOP the treatment, but that's a different story.

4) Q. What are your thoughts about applying for
         and receiving disability for Lyme Disease?
    A. I find that the "disability" process is quite similar to 
          suddenly waking up one day and realizing that your house
          and everything you own is on fire. Frantically, you start
          calling the fire department, the police, and every other local
          entity that may assist you, while barely managing to crawl
          to safety without becoming engulfed by the flames yourself.
          You mistakenly think that the people you called are on their
          way, but it is only after EVERYTHING you ever had is lying
          in molten ash around you, and you are left with nothing, that
          they finally decide to show up.

*The rest of the following questions, I actually don't have metaphors for, BUT I am happy to answer them all the same : )  

5) Q. If you're SO disabled, how can you possibly
         be writing a BLOG??
    A. To be honest, it took me about 4 years to be able to start
         "writing" again. Even now though, my symptoms wax and
         wane in such a way that there are times (a LOT of them) 
         where I look at what I've written so far and wonder how on 
         earth I was able to not only write an entire post, but even be
         able to coherently organize, plan, and execute a single 
 fucking sentence! (As you can see this obviously frustrates
me...) What do I do to get around it? I write when and what I can, and try and be grateful that I'm able to do so...at least part of the month.

6) Q. Why are you constantly saying "I'm Sorry"
         whenever you have those seizure-like 
         episodes, walking issues, and periods of 
    A. For the LIFE of me, I simply do not understand why people 
         don't "get" this! To me, going through this type of experience
         while someone is watching is the most mortifying, horrifying,
         and utterly embarrassing thing that could EVER happen!
         I HATE it when people see me lose control over my body like
         that! I mean - how humiliated would YOU feel if you 
         suddenly, for no reason at all, lost control of your bowels, 
         and actually shit  
         your pants in front
        of everybody!
        Thankfully that
        humiliation has
       NOT happened to
       me, but I would 
       imagine the feeling
       being quite similar.
       I'm only 30 for 
      Christ's sake. SO -
      let me say it again: 

7) Q. You're going through so much...why don't 
         you ever cry?
    A. For two very easy reasons. The first is that the saying, 
         "People can get used to pretty much anything" is very true.
        In that respect, I've simply gotten SO used to constantly being
        in pain, dealing with the financial hardships, coping with the
        endless (self-inflicted) loneliness, and trying to just "get by",
        that THIS reality has become almost "normal" to me. In fact,
        the only time I actually cry is from any kind of RELIEF (Ha -
        it's more like a "reprieve"!) I experience over any one of the 
        above mentioned being even temporarily abated. The second
        reason is that (especially with the neurological, cognitive,
        and psychiatric aspects of this illness) some of the symptoms
        I experience are SO downright bizarre, incomprehensible
        and astonishingly unimaginable, that when I experience them,
        I often find myself in a state of complete shock and can not
       even begin to mentally process such a phenomenon - much less
       have an "emotional response" to it!

8) Q. Why does having "moments of clarity"
          ultimately make you sad?  
     A. There are moments, even hours that randomly occur where
          a shift takes place, and you suddenly, and without effort,
          feel and perceive everything normally again. (You'll know
         when this happens because you'll suddenly start wondering
         with alarm, why on earth you AREN'T working, are living 
         with your parent's, DO NOT have a social life anymore, and
         are SHOCKED to realize that you are NOW 30 years old! -
         where did those three years go?!) While you experience this
 you think it will stay, that you are "back" to your old self again, and you begin to have HOPE. Without fail, however, these moments or hours never last, and you can almost feel yourself being pulled back into "Lymeland". You desperately try to fight it, to hold on to this sudden clarity, but attempting to do so is pointless - it's like trying to catch the wind, and you watch helplessly as this feeling fades, as it slips right through your fingers. 

*If you are reading this paragraph and managed to make it through to the end of this post - I sincerely Thank You! (I KNOW no one likes to hear about this type of stuff...usually, and quite understandably, it's simply easier to look the other way.) 

However, please know that I am not looking for "sympathy" here, my intention is really to help people UNDERSTAND how life-changing this disease can be if NOT caught in its early stages, and one of the ways I can get that through to you is, unfortunately, by trying to have you imagine yourself experiencing the kind of insanity that comes along with the later stages of the illness. 

Hopefully, by now, Lyme Disease is AT LEAST on your radar...it IS epidemic nowadays, and prevention and early treatment is KEY.

Best Wishes,

YouSayToo Revenue Sharing Community


radicalkate said...

So well described, I too, find that analogies help me put words to the experience and hang onto the thoughts. I love that you use them too. It is so easy to get lost long before you make the point you were after, but a good analogy is like an anchor you can keep grasping and exploring from.(no analogy intended)I too, just had a fresh breath of air, hoping I had turned a corner, and am sucked deep into Lymeland again. It is nice to know that world apart still exists for me, that I still am underneath it all, but it is very very sad to taste and lose it again. So thank you for sharing the thoughts of many who cannot find the words or metaphors. xoxoxoxo

Sarah Lamando said...

Hi Kate : )
I'm so sorry to hear that THIS TIME "turning the corner" didn't stick, but I want you to know that your writing is absolutely beautiful, and am impressed at your own analogies, your thoughts, and I 100% agree with everything you have said. It's always a pleasure hearing from you!!
Lots of Love and Best Wishes,
Sarah xo

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