Chrysalis

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Living with MS, or any chronic illness, is a terrible thing. Yeah, that seems like it should be a given, but you just don’t realize how much changes, in your life, your outlook, your interactions with others, even down to who you are. It’s like undergoing this radical transformation, and they use a butterfly to signify MS, as if we’ve cracked the chrysalis and shone forth, a beautiful new being, when really, to me, it feels like I crawled into a shell and emerged a dowdy caterpillar. Once vibrant, once glowing, beautiful, able to dance on the wind, now I can only crawl.
I used to be strong, independent, and while I know I’ve struggled with this disease for much longer than I’ve been diagnosed with it and I can look back at my life and see its dirty fingerprints smudged across many of my failed accomplishments, I can still look back to the not so distant past and see just how much more full of life I was then! How I’ve become practically a stranger to myself and all those around me in such a very short time.
I try not to hide my weakness and emotion from my friends and loved ones anymore. I used to always suffer in silence and everyone thought I was okay even times when I really, really wasn’t. It’s difficult to open up, it leaves you vulnerable. The worst part is when you try to explain to someone how badly things are going and they just don’t understand, or they think you’re making excuses or blowing them off. And I don’t blame people for thinking that way about me now. They’ve gotten so used to me always bearing the lode and just keep on pushing through like nothing can stop me, but I just don’t have the emotional, or even physical, fortitude to do so anymore. I do blame myself to some extent, for everything. For not listening to my body when it needed a break, when it was telling me that there was something dreadfully wrong and I just didn’t want to hear it, and for not giving others an opportunity to support me when I needed it and now they all either think that I’m strong enough to deal or that my cries of weakness are either insincere or so out of character that I’m too changed for them to understand me anymore. I’m not the person I once was. I have to admit my faults, concede that I need assistance and surrender to the things that are now out of my control.
I feel like I should want to cry to the universe for having cursed me with such ill fate, and ill health. More than just MS, my body is coming apart at the seams and there’s nothing I can do to stop it. I’ve lived with chronic pain so long I don’t even remember what it feels like to not hurt, but any time I think about feeling angry, I just feel sad. I don’t have energy to waste on being angry. I have an extremely finite amount of energy to work with each day and I just can’t be bothered to expend it on misplaced rage.
I suppose in some ways I still do suffer in silence. While I try to make it known to others how I’m feeling, what’s happening with me, what it’s like to live my life, there’s really no way to make it clear, no way to make it understood and truly felt! I know there are people who love me, care about me, sympathize and even try to empathize, but they don’t understand. They can’t. Because I can’t explain it with words.
The best way I can describe it is that I live every day with a pall over my soul. No longer able to do any of the things I once loved or that brought me joy, not knowing who this new me is or how I fit into this new life where I’m no longer needed, an anchor to anyone who wishes to take me on, I spend each moment trying to ignore the physical pain, the emotional torture of being trapped in this body, and try very hard not to think of the future.

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4 thoughts on “Chrysalis

    • I read the poem in the link you posted. I liked it, it was really beautiful. I hope I can get beyond the vulnerability and crying stages soon. Hehe Alas, much of this is new to me and I’m still grieving.

      • It is okay. You grieve. I think with pain and disease grief is on a continuum but someday hope will be present too if even just in the form of finding fulfillment in something else, friendship, and love. But grieve. It is your right. I think sometimes in society we don’t allow that emotion. We bury it, refuse to acknowledge it, and abandon it but it is a necessary pathway to healing.

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