Check Out The Empathy On Brad

 

With two very public celebrity suicides being in the forefront of the social and private mood, I wanted to talk about pain: the emotional pain that rides on the back of physical pain, the assumption that anyone can quantify anyone else’s pain, the justification of declaring anyone selfish and the use of anger as the barrier in self preservation from what seems like unending despair.

I envisage most people have been connected to suicide. Whether that connection is through a chain as in “I know someone who knows someone” or it is immediate. In my life I have lost a close dear friend, I have a beloved family member that attempted it, a friend that had an active plan at a very young age and another friend that has struggled with suicidal ideations for decades. I don’t think my report is that rare. In fact, a few years ago, in my parents’ neighborhood a father killed himself in his own backyard.

Humans have pain. The physical agony that is twisted and tied into the emotional. Constantly. Spend a day in any waiting room at a hospital. Drive down Fourth South as you enter SLC and watch the displaced homeless with their carts and bundles, swatting away the voices, trying to use the Port-O-Pottys while in wheelchairs. Devote an afternoon at Weber County Mental Health and people watch where sometimes the emotional pain permits a glimpse of what is happening in the most private interiors that make up a human. There is a lot of shame and guilt tied to burdening other people with that torment. So people hide. They mask and compensate. Coping and managing sometimes takes the place of living.

Here is where I share about my pain. About being so stuck inside my body and the fear of it never ending. With Ehlers-Danlos I can get into a pain cycle that lasts for a month. Or more. I can have days where the best thing I did was get out of bed long enough to brush my teeth, pee, give the bunnies water and hay, and if I’m lucky a cup of tea. Leaning on the walls and counters for support the whole way, I get to the kitchen, make my tea and get to the couch. I am lucky enough to have friends that repeatedly invite me to go out with them to movies, plays, concerts and more. Time and again I have to turn them down. I feel such shame and fear that one day the invites will stop. Then, there won’t be any reason to invite me as everyone will know I’ll simply say I can’t. After struggling against my body has gone on for so long, the emotional and intellectual fears begin to dominate, mixed in with comparing myself to others and self judgement. Physical pain, anxiety about pain, round and round I go. One of the blessings/lucky parts about being me, is that while I’m stuck inside the cyclone of Pain+Fear, underneath it all I am waiting waiting waiting for it to end. It could be two months this time, but soon enough I’ll be able to walk into Petco without the employee coming up to me and ask with panic in his voice, as I’m dragging my left leg and my left arm is curled up unusable “DO YOU NEED HELLLLPPP?” I know it will abate. Then later, it will wash over me. I will succumb and I will answer back in tears. Not everyone is as secure in the notion that their pain could ever be temporary.

Now, at this point in the cycle is where I use Social Media as a distraction from the physical pain. It is a cheap and easy way to escape. I would grab the easiest and fastest way out; Facebook, Twitter, Snapchat or Instagram. Again, I don’t think I am alone in this. Not only as a distraction from physical pain, but emotional. I have found for me that if I’m not careful it ends up fueling the distance I feel from the world I so desperately want to join. Would You Like GIFs With That is my blog-post in regards to that. Moreover, this is where the comparing lives fires are lit and stay lit for far too long. The unnecessary shame creep from Social Media into daily life does more damage to self esteem than I think we realize. The urge and predominate course in society is to only share the glowing best bits of our lives as the fear of judgement is paralyzing otherwise. Suspicion is, if you share your damage you only want attention. “He’s an attention whore.” “Check out the Drama Queen.”

You can never truly know the scope of another person’s pain. Nor will you comprehend their joy. It is not ours to measure or value. I have heard it said multiple times how selfish it is to take your own life. How could they not consider the people left behind, and so on. The first time I heard it said was when a boy from my High School killed himself. Everyone around me was saying it. It was akin to an automatic response. A form letter to block feelings. “If I hold up this anger long enough I won’t have to access the dangerous emotions underneath.” Anger knocks out sadness and despair any day. By brandishing words like selfish you’re less likely to access your empathy. Empathy is what is needed in circumstances like these, specially when people reach out.

I choose empathy first. Even if it hurts.

 

Burnt Pancakes

I was supposed to be at the Sundance Best of Fest tonight. Snug in the Park City Library Auditorium seats with my bestie and her best guy, watching some tip top new films and sharing a fun experience. But I’m not there. My body vetoed that. My body has been pretty much an asshole for a couple of weeks and tonight I discovered that my body in asshole mode does not make for a pleasant dinner guest. Or a hostess.

My Mom came over tonight to hang since I couldn’t go out. When I’m in a super long pain stretch, there’s not much to do but wait it out, but being my Mom and loving me like she does, that gives her a great feeling of helplessness. To just watch. Wait. Listen to me try not to cry. So, she does the sweet thoughtful things she usually does, but with extra purpose: She brought tater tots, french fries and Perrier. The Holy Trinity of “What Makes Heidi Happy.”

My Mom came to take care of me. She came to be a mother, and yet I didn’t let her cook one thing, get her own drink, or take her plate to the kitchen. My stubbornness and embarrassment over being weak and controlled by pain kept me on my feet (kinda-leaning on counters, walls and chairs.) I wanted to cry from the pain the entire time, but I waited until My Mom left. Between the excitement of snacking on Red Robin fries hot from my oven while I introduced my Mom to the “Librarians” and giggling about my crush on John Larroquette, I kept trying to take care of her.

Seems to me that when my body is in asshole mode, my brain turns into “cowering shivering don’t show anyone how weak you truly are or you’ll end up in permanent fetal position” mode. Thing is, I needed to cry my eyes out. Still do. I needed her to hold my hand (we tried that but touching me hurts so it was a no go.) After forty years of dealing with Ehlers-Danlos Syndrome and its ramifications I expect myself to be better at this. Clearly, I expect too much.

I have so much to learn. I’m grateful for the patient people in my life that volunteer to come over for dinner. 😉✌💖🎉

Mrs. Two Lumps

I popped my left hip out last night.  I was walking, from the kitchen to the living room.  It wasn’t one of those Ministry of Silly Walks walks either.  Well, maybe after my hip popped.  It went out, then in, which is preferred.  I have had my right hip stuck in the partially in/partially out position before.  Don’t recommend that.   In retrospect what seems silly to me (not haha silly but bordering on absurd) is that I am now at risk of dislocating simply while I ambulate.  I am careful when I get off the couch, get out of bed, get out of cars, roll over in bed, get out of the shower, go up and down stairs and on and on.  I don’t like it when people walk behind me when I am in a group.  I get severely nervous.  I’ve been bumped too many times and then bam, knee is out.  Plus I’m slow and I don’t want to hold up anyone and the thought of them watching me gimp from behind is hella embarrassing.

When I was younger, we are talking elementary and middle school age, I wasn’t as embarrassed about being so freakish.  I took to it.  Took advantage of it.  Friends would ask me to do tricks:  Jump chinese splits, clasp my hands behind my back and while keeping them clasped bring them over my head to the front of my body, fold my fingers over each other and bend my wrists back and forward, stand with my face against the wall then do a back-bend bringing my head between my feet, lie on my stomach and bring my feet over my head and rest them in front of my face (this last one I would do while watching TV.)  I knew I was different and by volunteering to do these tricks I saved myself from being teased when all of a sudden I would go missing from school for an EDS related illness or I would break a bone from something so simple as tripping.

Now that I think on it, I guess I have my own silly walk.  Priory of Preposterous Promenades?  Cloister of Wacky Shufflers?  The thing is for me to remember to laugh at myself, and the ridiculousness of it all.

 

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It has been over a month since I haven’t wanted to cry for most of the day from the pain.  Over a month that the pain from Ehlers-Danlos has kept me from the majority of my everyday functions.  I am grateful (it isn’t a strong enough word) for my family and their assistance, their patience and most of all their humor.  Laughing keeps me sane, keeps me grounded and reminds me that the pain will subside.  And it does.  It always does.  Sometimes (more often now) it takes longer than I expect.  So days like yesterday can happen, where I drove myself to the store, played music and sang along, walked the aisles of the store without having to hold the shelves for support and have people stare.  Days like yesterday where I looked people in the eyes and smiled, and meant it, remembering how wonderful life can be when you are out in the world and can see the sky, feel the breeze and watch life go on knowing you are a part of it without the distraction of oppressive pain.  My eyes felt so wide as I was able to notice everything outside of me.

 

Yesterday was a good day.

Abby Normal

Look who’s back.  Back again.  I’m not the real Slim Shady, I also don’t play one on TV and I’ll have that song stuck in my head now for at least three days.  I’m mostly writing this so my Uncle Frank can rest easily tonight.  I’m nice like that, and I have my goal/mission to complete.

With Ehlers-Danlos comes lots of pain.  In lots of places.  I don’t mean to say Saskatoon.  Okay maybe Saskatoon.  Places as in the topography of my body.  It hurts.  All.  The.  Time.  The struggle with the constant stream of pain is deciphering new pain being layered on top of old.  Decoding my normal abnormal from possible and new and dangerous abnormal abnormal.  Second judgements and talking out of concerns or into some.  Should I care about this new pain as much as the last time?  Should I bother with the doctor or another ER visit?  Nah.  It will be nothing (nothing meaning EDS and there isn’t much else to do but slap a pain pill on it.)  So, I hem.  Then I haw.  Then I hurt and hurt until I finally give in (that’s how I look at it anyway) and I go to the doc. I decide I’d rather look foolish than dead.

I’m not dead.   I’m not foolish either.

Okay, maybe not %100 foolish.  More like %70/30.