Handle We With Care

Handle We With Care

Author: Sairy Franks

In honor of Lyme Awareness Month, I wanted to share something that has been on my mind and heart for years. People often complain to me about their family members or friends who have Lyme, saying that they are too negative and should be more positive, like me. Please keep in mind that I have had an extraordinarily supportive community across time zones and continents, as well as a family that would do anything for me. Even with that support, I have had many low points and had my own bouts with heart-shattering grief, fear, depression, trauma, struggle and desperation that pushed me to speak or behave in ways that weren’t true to myself – and this usually happened behind closed doors with the people I trust most. And let me tell you, it is devastatingly painful to witness yourself doing this. Experiencing chronic illness (especially when it is life-threatening) is enough to make anyone behave in ways that can’t be understood by others, not to mention that Lyme and other tick-borne diseases can cause mental illness in some people because of the impact on the brain.

Many of us wake up every morning feeling as if we are hung over, still drunk, and had just been hit by a bus – all of this before even opening our eyes. Imagine that for a moment. Then imagine that this has happened every day of every week, every month, and every year for a decade or decades. That you experience this from the moment you wake up until the moment you go to sleep. The thoughts of hopelessness, helplessness, that you are to blame and that you are a burden take over. Then imagine that society and most doctors don’t believe you are sick. Imagine watching your health decline. Imagine being retold story after story of folks who have lost their lives to Lyme. And finally, imagine that those you are closest to expect you to behave according to what they believe is appropriate for you, having never been in your shoes – or your bed rather, where you spend most if not all of your time.

I write this not to guilt anyone, but to share a perspective. Please be gentle, both to those struggling with Lyme and to their care providers. I trust you will do your best and that you will trust that those who are dealing with immense physical, emotional and spiritual chaos are also doing their best under unspeakably difficult circumstances.

Thank you for reading. I am in community with a lot of folks in the thick of Lyme struggle right beside me for whom I care deeply and want only the very best for. Additionally, I believe that this message applies to everyone. We can all use the reminder to be gentle with others as well as ourselves – sometimes the most difficult part. We are all in this together. Handle we with care.

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6 thoughts on “Handle We With Care

  1. Beautiful, Sairy. And I must say that the contrast between this photo with how you are looking today is incredible. You are gaining on this terrible disease, and defeating it. Love you, darlin’ girl.

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  2. Sairy: thanks for this message. It means a lot to me simply to read what another Lyme inhabited being has gone through—for me, too, it has finally come around to the universality of love and of struggle—we all experience some wrestling matches with the limits of our physical selves to some degree–those stricken with Lyme and everyone else, too. And we all can find warmth and some shelter in letting Love emerge in all places as it will.The greatest challenge for me over the last six years has been to overcome the confusion, loneliness and passing madness that came in with the bacteria—and to try to lead a “normal” life despite the unwanted intruders. I started this week on Monday needing a root canal done and it reminded me that I can still feel pain that is overpowering in a different way, but that to the extent it is treatable it is much preferable to the chronic pain that can simply frame my daily life if I allow it to carry me off and if I am unable to keep still and so will it to retreat from my waking consciousness. So, for me it is a lot about flows of energy and picking my times to stay on task vs. letting go and freeing myself of the folly of attempting to control anything—being a crabby porcupine is a tough act in terms of earning much camaraderie or empathy—so my patience with myself and the love and perseverance of just a few kind people has meant a great deal to me as I bump along and get better or at least keep even. Anyway, thanks for this insightful post—I am heartened to hear that you have arrived at so much better a place than you were before. Hallelujah! All that good and hard work rewarded.
    Love to you and yours. -Charlie W.

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  3. Sairy,
    Your comments are so vital, so real, so poignant. You have to publish a book. It would be so helpful. Lyme is too big a secret. You are such a gift. You have so much to give and a lot work to do. Bless you!

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