Chronic Snarkopolist: Wearing a Mask
Hello my loves!
As I have gotten back into my life I have found myself doing several things. I have found myself feeling vulnerable around my sicker friends – afraid to admit that I am DOING some activities again. And I have been shy around my very healthy active friends because I don’t want them to judge me for not being able to keep up to snuff with their life style either. I often feel like I’m messing up everyone’s world because I’m faking healthy and sometimes I’m not sick enough to be sick (or I don’t COMPLAIN LOUDLY ENOUGH or I’m not ANGRY ENOUGH or I don’t LOOK sick enough to be sick… I just don’t DO sick well enough?)
Ultimately I look at myself and say, “Seriously? What are you DOING Melissa? Haven’t you just spent a year teaching yourself love and acceptance and being where you are RIGHT NOW?” But sometimes I think it is easier to talk about how great it is in theory. When we are actually LIVING the process it is far more vulnerable.
Hearing the words, “I think you are healing” feels like a jinx, a gift, and an exciting opportunity all wrapped into one. I’m overjoyed. And I am also waiting for the shoe- no- NO THE GIANT PIANO- to drop on my head.
I am always stuck between Dare I? And how dare I! I loop between survivors guilt and LIVER’S joy. And also- because I still have my days, some days I sleep in and feel like crap and hide and think, “Well, I guess I got too big for my britches.”
I am finding places for my clothing. Wait- I lost some weight that came with treatment and illness. But guess what- I also know that doctors are forever injecting me. So I know that some weight gain in the future is inevitable. I am not sure how many sizes to keep. I am not sure how much weight gain or loss is here to stay. I am not sure how many clothing sizes to give away.
And so I tell my friends, “I would like you to baby sit my clothing. Enjoy them. I would like visitation rights should the need occur.” That way I don’t just have unused clothes right now. But I am also acknowledging practicalities of chronic illness and treatment. It is about strategic planning.
One woman with lupus who regularly takes steroids once joked about having travelling pants for all of the women in our circle who have similar issues. It was funny at the time and it resonates even more now.
I am afraid to admit when I am having a good day and similarly I am afraid to admit when I am having too much of an excessively bad day anymore. I feel pressured to “behave normally” now that life is starting to BE more normal-esque. Yet, I can’t tell what is normal and what is just typical and what is routine and what I’ve gotten used to.
Is it the kiss of death to say I want to be “normal?” Yes. I feel afraid to jinx myself. And yet- THIS is how I am living. I am tip toeing around my friends, my relationships with people, my activities. If we are wearing masks are we really living? I have waited for THIS MOMENT because it is the one I haven’t had for so long.
Do you do it too? Do you pretend health or insurance issues away so you don’t have to think about it some days? Do you avoid discussing it or ignore it so you can just have a LIFE sometimes? Do you ever have guilt about your good days? Do you ever just let your healthy friends think you are just more slow rather than tell them WHY you got this way? Do you ever just pretend you are “whole and sound of body?” Do you ever listen to your “healthy normal-esque” friends tell you about their “normal people” surgeries or their stubbed toe and comfort them and NOT tell them about your one hour rituals to get up and medicated in the morning just so you can imagine what it is like to BE THEM? DO YOU? Do you worry that you will anger your sicker friends if you get healthier. Do you ever feel you are disappointing your healthier friends if you stay sicker? Do you ever feel like you are failing everyone by doing it all IMPERFECTLY? Do you wear a mask? Please tell me. I must know!
I will see you same time next week! Kiss kiss!