Partially rewritten from an old instagram account – the one that used to bear this username, I wanted to take a moment to catch up with you and tell you, in short, I’m doing a 5k in two weeks.
I know, I know. What!?? My husband has been helping me prepare and is doing it with me, along with our little pup. It’s been a definite lesson in learning to listen to my body. Yesterday I made my best time, averaging just at 15 minutes per mile, which is basically shit for a runner but a miracle for someone pushing through with chronic pain.
I suffered last night. Today I can hardly move. But this evening, weather permitting, we’ll be out again, pushing that time. Why? Because I WANT to. Neighbors and acquaintances alike are openly calling me crazy and expressing concern for my sanity more than my safety but using my safety as the key words, and I want to combine two things (this older writing rewritten for the now and a piece I wrote last night) and share it with you. Why? Because it helps me to share.
Walk A Mile in My Shoes
I wrote this a while ago but was afraid to share it because I didn’t want to be seen as a complainer or as weak. This is what the stigma of invisible disease does to people. My friend sent me a challenge to share my truth as I used to – it’s called the #vulnerabilitychallenge. So, I AM going to post this & not be insecure, & know I am not complaining.
If you have loved ones with CI or chronic pain, be patient with them. They can’t control their bodies & battle with them every day & some days every second. It’s hard to live with pain, especially invisible pain. Try to give them a break.
Literally hours ago I felt like this black cloud over my head was lifting. I felt…happy. I got excited because the depression was leaving. But what I forgot is that it never leaves. It just rises & falls like the temperature…or the ventilator that kept my dad alive during his coma.
I realized I keep waiting – waiting to get better when I know I never will. I may not necessarily get worse, but never better. That’s what CI means. So I do the best I can…but forgive me when I suddenly crash, or snap at you, or act out of sorts or distant. It’s not just a mood. It’s not just pettiness or whining. Its not selfishness or taking you for granted. It’s fibrolife or a celiac flare. Don’t be angry with me & fuss at me or cuss at me or take it personally. Worse yet, don’t compare me to yourself or others – especially others with CI or depression.
Instead, just take a moment to try to imagine your skin feeling like it’s on fire. Feeling like your legs are wrapped in barbed wire, and let down because it’s backpain again tonight, first headache in a while, leg cramps, stomach cramps, everything hurts, and it’s stress. My body reacts very bitchily to stress – especially extreme stress, like my preparations for this 5K.
The day has settled down & now it all catches up with me. Don’t hold it against me if I don’t cope well with stress. But rest assured – I WILL walk on, I WILL keep pushing through, and I DO love you. But I am also upset with certain aspects of how I’ve been approached recently.
It’s comparison that gets to me. Tonight I was reminded by a film I watched during this painsomnia marathon how my mother has always doubted me and how sensitive I am to rejection, being doubted, being abandoned as the weak or the crazy one…and how that has been feeding my insecurity lately from several different directions. This all in turn reminded me that I am plenty “enough,” and never “not enough” or “too much,” at least not for MYSELF, which is what matters, and I started thinking about how even though I know it will never happen, anyone who doubts me needs to stop judging and assuming and just sit back and watch me succeed despite the challenges I face or my ups and downs.
Then I wrote this note (blog) that was amazingly well thought out and put together and accidentally deleted it because it posted twice but it was a glitch so when I deleted one it deleted the actual note (and yes I’m pissed). Sigh…
The whole idea was that I no longer believe that our thoughts alone create our experiences, or that life has “terms.” I believe that there is a reaction for every action and that regardless of our thoughts or best intentions sometimes bad shit happens. I don’t believe we can control our lives with our minds alone, and that our hearts and our spirits have just as much to do with it. I believe that our actions and reactions, good and bad, feed on themselves to create our lives, and I also believe (know) that our lives can be effected by the actions and reactions of others but that we ALWAYS have a choice in how we live and face our challenges.
I don’t believe in living life on life’s terms, I believe in creating my own regardless of what life has to say about it, even if that’s the harder way of dealing with things sometimes, and I’m sick of hearing people tell me lately that I need to accept life’s terms, I need to be careful with my body or I’ll make it worse, I need to just accept that I’m older or that I’m sick and so I can’t do the things I used to. Pffft. I know that they THINK that they have my best interest in mind, but they’re not ME. How can they know what is best for me – especially when they’re only a neighbor or an acquaintance I ran into in the dollar store? They can’t – not even just because they had an experience and found out what was best for them.
Look… Listen to me hard right now. How many people who get a cancer disganosis say, “ok, I’m terminal. I’ll just die now and not try to fight back?” Some may, I’m sure…but all the people I’ve ever known to get that diagnosis, in real life or friends/acquaintances online? They may already know they’re terminal and they’ll die but they still fight – 99.9% of people I know who have had that diagnosis have not just accepted it as “life on life’s terms.” I even asked Dorie one time, because I used to judge that choice and think, “if I end up like that I’d never choose chemo,” why she made that choice and continued to struggle with it even though it was that that was killing her and not the cancer… Her response? “It’s the only way I know how to fight this.”
My experience with Dorie and cancer and caregiving and watching her fight…that was the moment that I stopped believing in life’s terms and started believing in the human spirit and in the human heart rather than some stupid idea about how life works the same for all of us. IT DOESN’T. In a general sense, we all live and die. Everything in between? Not exactly the same for any two people. That was a huge lesson and realization for me. I’ve always known we are all different and we all do things differently and for different reasons. But that was my first slap in the face of how stupid it is to compare people or hold them to a standard we might think we have for ourselves but that can change in an instant based on any number of scenarios we may face.
Fighting my body but learning to listen to it at the same time has reminded me of that. Especially today, after reaching that milestone in my mile time. My hip and my knee – my whole right side from the ribs down, really, is screaming at me. But it’ll pass – and it would have screamed anyway, probably louder, if I hadn’t reached this point. It would all come in waves regardless of any choice I did or didn’t make – because hello…that’s how it works.
Anyway, all of this reminded me about comparison. That was the whole premise of this whole bit of word vomit to begin with. Don’t compare – don’t compare ANYONE but especially not people with mental or chronic or physical illnesses in general. It’s not fair, because we ALL do things and face things and accept things differently and at different times and in different ways and even on differently on different days.
I get that people may think I’m super crazy or annoying because I deal with life at both ends of the spectrum to an extreme and refuse to just exist or live somewhere in the middle but that’s because I don’t WANT to be or live a mediocre life. And, it’s also because I’ve always been a passionate and very free spirited person and I’ve always had to fight – it’s a learned behavior. I’ve always had to fight – those are hard words for me to “say” out loud, but it’s true and a realization that deeper discussion in therapy has helped me to accept.
I’ve ALWAYS HAD TO FIGHT and it is a LEARNED BEHAVIOR – my mother, my health (yes even as a child – mostly because of allergies and reactions which we now know was related to celiac but especially the time I had chicken pox and then scarlet fever and almost died when I was 7, which is what led to my heart issues as an adult), my depression, and a whole hell of a lot of people in my life as a young person (family, not people just randomly existing in my life, but yes, some of those…) who never accepted me because I was adopted and who always judged and hated me and belittled me because I was different…I was bullied a lot in school when people found out I was adopted – and I still have no idea exactly how that happened; because of how my “family” treated me I NEVER talked about being adopted to anyone. I guess there’s always that “one friend” in middle school… LOL I digress…
Rest assured – I may appear weak at times, especially when depression has me down – depression is the hardest and cruelest battle I face and yes, I face it head on daily and “fail” miserably sometimes in the eyes of others and even myself when I forget that surviving another day is a huge achievement some days, but weak is the farthest thing from reality that I am or that ANYONE with depression is. It’s the farthest thing ANYONE with ANY disease is, physical or mental. So just because someone doesn’t complain or express thoughts about their illness to you and you think, “ohhhh they’ve got their shit together, why don’t I or why doesn’t she or why doesn’t he?” Just don’t. Because they DON’T have their shit together. They’re just dealing with it in a way that makes it look like they do – and if they’re not talking to you about their struggles it’s easy to think they’re not struggling.
News flash – not everyone talks about their struggles. Some people are very private. Some only express their physical and emotional exhaustion when they’re alone in the shower or in bed at night crying themselves to sleep. Some express it with a scream into a pillow that no one ever hears. Some express it by not expressing it. Silence is a sound, too… I’m not one of those people that is very private, and that doesn’t make me a bad person or a weak person or an ungrateful person or a “not coping well” person… And tonight I’ve been reminded by art imitating life imitating art of how much I HATE to be compared to anyone else and how much I strive not to compare anyone else to myself or to others.
I don’t want to hear about what you approve of or disapprove of how I have a goal to make it through this 5k coming up with a “broken body,” or about what I should do or what I can’t do or what precautions I should take and so on and so forth. I CAN READ and I have been researching my physical conditions a lot longer than you’ve been thinking about all the ways my legs might not work during a 3.3 mile trail run. Speaking of which, it’s ONLY 3.3 MILES. It’s not the fucking Iron Man.
What I want is for you, if you’re one of those people, to just sit back and watch what I CAN do, despite my insecurity and fear and pain and my body that screams, “fuck you!” to me every time I begin and end a walk or a jog. I want you to sit back and choke on those words of doubt and judgments, even if you’re only thinking them. Because I will NEVER say them to myself and I don’t want to hear them from anyone else, and I don’t want to be compared to anyone else – especially not anyone else’s imaginary standards for me (which are generally double standards, anyway). Nobody does.
Tonight I’m laying here with heat on one spot and ice on another, and you know what? I’m relishing in it – I feel strong. I think I’m stronger than the doubters and judges in my life because guess what? I’m doing something besides worrying about what everyone else’s is doing. I’m focused on MY goal and MY current “dream.” And I’m gonna get a T-shirt for this particular experience, whether I come in first or 80th or dead ass last. But what I’m really gaining is a window back into myself. And that is priceless to me, even if it costs me more than I have to pay in the end.
- be you
- celiac disease
- Chronic Illness
- express yourself
- just me
- keep going
- life goes on
- life in progress
- mental health
- my journey through grief
- my story
- physical health
- self love
- you are not alone