An Open Letter to my Chronic-Illness Fighting Body:

Dear Body, 

     I don’t know what I should start with… should I first thank you for carrying me safely through every shitty, terrifying thing you’ve been put through? Or should I first apologize for being rude and ugly to you? For cursing you out for every scar and bruise. For sobbing and screaming out of frustration and blaming you. You see, deep down, the part of me that is writing this knows that you aren’t to blame. I know that you have tried your hardest since the day I came into this world (25 weeks and 5 days premature and only 1lb, 12oz.) 

 

But there is another part of me, Dear Body, on the days when I’m in too much pain to fathom sitting up and too exhausted to form a sentence that I get so damn disappointed in you. The questions start making themselves too prominent to ignore, the what ifs start polluting my brain. Why must you put me through the ringer? Why can’t I go out for a night without paying for it miserably for a week? Why can’t my body rally for the things my mind can’t stop nagging me about? What if I’d never been taken down by the tremendous weight of chronic illnesses? Where would I be in life if I’d stayed healthy? What kind of life would I have today? A better one? 

 

I think anyone with a chronic illness is familiar with this torturous mind game. When you live this way every day you start to idealize every day before it. Meaning, you look back on your healthy days and suddenly they’re the most extraordinary days you’ve ever experienced. This is a mind game, Dear Body, and it’s a cruel and completely false one at that. Because what you’re not remembering in your reminiscing, is that those days were not perfect, they were not flawless. You were no prettier or smarter or more intriguing or popular than you are now. I promise. The difference, dear Body? The difference, is that back then you had people around you, not just friends or family but your teachers and your checkout cashiers and your baristas and your acquaintances at the gym. These people, while not necessarily teaching you anything or saying anything remarkable, they were reminders. Reminders that you were part of a community. 

 

For the past four years, my community has mostly just been you, Body. I woke up one morning four years ago and you told me I wasn’t ready to face the day. I didn’t know back then that that was just a small indicator of us not being able to face many, many days. I didn’t know yet the battle we were about to fight. I had no idea you’d have scars, and bruises and injuries. I had no clue you’d go through surgeries, and organ removals, and every diagnostic test known to man. I hadn’t fathomed you’d be poked and prodded with needles, IVs, PICC lines, spinal taps and shots. I didn’t realize we’d face one delicate, dismal diagnoses after another. I didn’t know the pain you were capable of facing, the fiery, deep pain that Dilaudid could barely take the edge off. The heart-stopping sadness you were able to overcome. You see, Body, I immensely underestimated you, and for that I am so very sorry. I didn’t know how strong you were until that was your only option. Thank you, Body, for carrying me through these chronic illnesses. Thank you for being stronger than I ever realized. 

 

 Love,

A newly appreciative Lyme Chick

About Lyme Chick

Lyme Disease advocate/warrior still learning about Lyme treatments/recovery and wishing to inform, support, and commiserate with others along the way.
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20 Responses to An Open Letter to my Chronic-Illness Fighting Body:

  1. Susan Nadler says:

    You’re a strong woman maizel pie and you’ll make it…mind over matter…spirit rules all…sorry u have to live in such a battle with your body…this post was really wonderfully written
    xo
    susan

  2. Ariella says:

    This is so beautiful, I am in tears…

  3. Amy says:

    This is just lovely. Keep up the fight and advocacy! Amy, another lyme patient

  4. nancybelser says:

    GREAT letter Mai. Are you well now? You are a Very strong gal and one day, hopefully all this will make sense….

  5. sarahkort says:

    Love you maisie. You are so beautiful and strong in every way.

    Sent from my iPhone

    >

  6. This touched so true; especially the community part. Nailed it!

  7. eileen says:

    I dont know where you live but as a massage therapist, I will offer you a free session to help with your pain. I am in the Waterbury area.

  8. when you dont think you can go on turn that 4 years into 27. really. 10 solid in bed. some in wheel chair some with canes, some in hospitals on TPN, some without a mind. most barely leaving the house. many alone… and serious life challenges in the few “moderately okay” ones. Here i am still and reinfected all over again as of a few months ago. paralyzed on one side, and reliving the horror but with a husband, a special needs toddler ( i had spontaneous identical triplets at 48 years old, and a ten year old, and a house in foreclosure. It took 3 and a half years to get our daughter home! We were finally getting our feet back under us, and now the demon has struck me again. the 53 year old body can not do what the 25 year old body did. i am in the position of mourning the what if’s because of the family i now am responsible for. what if I could actually be a mom to my girls, take them to the park, be at their activities? help my husband at work, get a masters? it is very sad, and i am really feeling desperation and despondence. but i am a survivor, and if G-d gave me 1 in 250 million spontaneous triplets at 48, i guess i am just the chosen one, and i keep going until there is
    nothing at all left of me.

  9. Thank you very much for your writing about your journey. It is very helpful to those of us who are going through your journey. The strength of our body can take so much more than our spirit is sometimes willing too let it . Letting others know that they are not alone and reaching out through your writing will and does help others greatly. Thank for being there for all of the sufferers of chronic illnesses and lyme.
    Thank you,
    David R Thomas
    http://www.throughchallenge.com

  10. Barbara says:

    I find such similarity in your letter with my own body… you wrote it down as if I felt it. I hope you stay strong. We have to!!!! I am 52 now and I have had lyme since I was 28. I KNOW my life would be different if not for lyme. But I dont know if I would be as strong. I have learned to be proud of myself for small accomplishments physically, and even stronger emotionally. It has been quite a ride. Keep pushing!!! Barb hugs…

  11. Elizabeth Reed says:

    I didn’t weigh 1 lb. and 12 oz. when I was born. But this letter has hit home with me. I’ve been living with this Dreaded Disease Monster for 10 yrs. On and off of antibiotics, picc line you name it. And the body is still trying to make its way through life. It’s a lonely journey. Hope we get some relief some time soon. Thanks for the letter…

  12. Thank you for putting it into words.

  13. happy fowler says:

    Maise, You are an incredible writer. Brought me to tears. What’s helped me greatly in both good and bad times is a type of meditation I was taught. It allows me to get out of my body and redirect my focus. Best wishes for

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