Chronic Snarkopolist: The Ugly Parts of Illness
Hello my loves!
Every so often I get this feeling, I will describe the scenarios to you so you can hear me. It is almost always the same type of situation and the same feeling. Once when I was helping an improv buddy dye his daughter’s hair purple striped I felt a longing in my heart – “Why- why isn’t this my life? My child? My every day?” I never named it because I didn’t care to ruin my joy in that moment but I FELT IT.
And I did what one therapist calls, “have a cup of tea with it.” The same feelings arose in me w hen I was knitting with some friends and they were talking about their three (each) adopted children and how big their family has gotten and how they are building their new home to keep their life contained. And I saw the clothes and hats and JOY they knitted for their children. And a pang of longing for such things rose in me. I was happy for them. And like any good friend I knit for each child my friends have and I celebrate with love and joy new arrivals, adopted or biological.
Yet- I feel this same longing, this pang when I see seemingly healthy people walking down the street and I watch them work out at gyms, running on the treadmills. And YES I realize that many of our illnesses are QUITE invisible. And I do NOT know their stories. Yet I long for my health. I long for the day when I am no longer getting new diagnoses. I long for ONE month when I’m no longer having repeated PET scans or giving myself sub cutaneous injections to keep tumors from growing larger and causing my organs to grow too large and give me heart attacks.
I long for the day when I don’t have several month long infections in my body. I long for the day when complex RARE diseases don’t sound NORMAL to me. And I long for the day when I am not horrifyingly envious of my friends who actually go into remission and hit “survivor” status. Because they can walk away from their disease and leave it as a memory whilst the rest of us must walk on with our illnesses and hear a constant barrage of new and re-diagnoses.
This sounds preposterous, this confession. I want to be better than this. I want to be sitting on a mountain, above the fray- balancing on a pin – sucking in all the negative shit life gives us and blowing out little puffs of wisdom. I don’t like being all human and vulnerable and dealing with everything life hands us. I don’t like reading about my life in a text book and realizing that no matter HOW healthy I treat myself sometimes life hands me some shit I didn’t ask for and I get what I get. And worse is the JUDGEMENT from others that if only I took better CARE of my health my genetic code might not be so jacked. And I’m grateful I LOOK healthy if only because I can occasionally pass as normal.
I hate trying to constantly come up with meaningful thoughts when sometimes I feel desperate and sad and alone. Being kind and gentle with people feels right and talking and sharing feels lovely. But sometimes – absolutely NOTHING feels OK.
One recent widow has a lovely blog with lots of wisdom and beauty. And I reach out to her and thank her for her sharing words. And she admitted that she cries alone a great deal too. And that sucker punched me. Why? Why doesn’t that rawness ever get recorded? Why doesn’t she ever record that? Why only the beautiful parts of the loss? Why can’t we be expected to see all the parts of her loss? Same as illness – there isn’t all sweetness and evolved ideas here- sometimes there is sheer anger and frustration until we work it out and spit out the bones. And we’re all processing it together. We’re all healing and sharing together. Why can’t we share all of it? What’s wrong with the ugly, painful, and hurting parts of our journey? Isn’t it here for us too? Aren’t we all navigating it, hopefully together and in solidarity?
I’ll be back same time next week! Kiss kiss!
Tags: chronic illness, Chronic Snarkopoloist The ugly Part of Illness, dealing with multiple chronic conditions, healing from chronic illness, longing for normalcy, managing chronic illness, wanting to feel normal, wishing for normalcy, written by Melissa Travis