Talking Body, Part 3

My brother, my dad and I were carrying our canoe full of our gear over a short portage in the Boundary Waters Canoe Area (BWCA).  Since it wasn't a long trail, we opted just to haul the whole thing over, rather than taking all our gear out and carrying the canoe separately.  I was about 12 years old, my brother was around 9.  

We went to the BWCA every summer to camp a week or two.  My brother and I looked forward to putting all our gear in the canoe and heading out.  We didn't relish paddling for hours on end but the result worth it. 

As we were hauling the canoe through the woods, we passed four men carrying their own canoe full of gear. Four large men.  The four large men looked at us, one lean, moderately sized man and two little kids.  I could see them evaluate the situation.  On top of everything else, one of them noticed I was barefoot. 

He looked me straight in the eye and said "Do they call you 'Nails' or do you just eat them for breakfast?"

My brother and I in the BWCA around the time
I earned "Nails" as a nickname.  

We all laughed and I squared my 12 year old shoulders, proud that I was tough.  Proud that my dad was teaching me things that made me different from other little girls.  Proud that he was teaching me to be strong and determined.  

Welcome to my new reality.  

I am not confined to a wheel chair all day, every day, thankfully.  I use a wheel chair or scooter in situations where there is a lot of walking, such as when my daughter's class had a field trip to a science museum.  

But I am always limited to being on my feet for about an hour per day, tops.  I haven't timed it but there was an app on my phone that would send me nasty messages when I didn't spend at least an hour a day walking.  I was getting a lot of nasty messages before I finally got rid of that app.  It is supposed to encourage people to be active and healthy but healthy for me at this point in my life is not something that can be measured by an app.  

Right now, healthy is defined by making choices that limit time on my feet.  Too much time standing and walking create a lot of pain.  I can stand the pain actually, I wasn't called "Nails" for nothing.  I am an expert at pushing though, ignoring discomfort and carrying on.

I got tons of practice canoe camping in the BWCA.

The difference now is that the pain never goes away, so there is no pushing through.  And, to make matters worse, I hurt so much that I can't sleep.

I am super non-functional when I don't sleep.  Other people make proud statements about how they get by on only 4 hours of sleep.  I am practically narcoleptic when I sleep that little.  I am unsafe to drive because I cannot stop myself from falling asleep.  And my poor clients do not deserve to have their therapist falling asleep in their session.  There is not enough caffeine in the world to keep me functional.

So, I have to stop doing and focus more on being.  

I'm not super great at being idle.

Especially in the summer.  In the summer I want to be digging in the dirt and transplanting flowers.  Or walking along the river. Or canoeing.

I'm coming to grips with the fact that I need to turn my determination towards not doing.

Which requires that I confront the fact that this disease is interfering with my functioning and grieve the loss of my physical abilities.

Sometimes I'd rather just live in a denial bubble!

I thought that since this was temporary, it wouldn't be such a struggle.

Wrong.

It turns out that a substantial portion of my self-image is tied to being physically able.    And being able to do things for the people I love.

I still feel valuable as a human being, I know that my worth is not tied to my productivity.  Although, at times I get a little wobbly on this.

I'm just having to answer the question "Who am I?" with a different set of variables.

And grieve my losses, even if they are temporary.

I think regardless of the circumstances I can safely say that I am strong.  I'll let you know when I figure out the rest.



You can read Talking Body, Part 1 here and Part 2 here.

Talking Body, Part 2

I'm going to tantrum here just for a minute, or five, or maybe ten.

Pardon the occassional expletive, because I am feeling a tad pissed.

I am so not impressed Mr. Guy Sitting in the Parking Lot.

I managed to keep my cool in the parking lot, mostly, but I cried in anger and frustration on the way home. And now that I have had some time to get riled up, screw you and the high horse you rode in on.

Listen, I don't like that I have to calculate how much walking I can do in a given day.  I don't enjoy determining if my time is better used walking the shopping cart back to the place where you are supposed to deposit them or used to do the laundry or stand in the shower or some other home based activity.  I'm the kind of person who cleans up other people's trash and goes out of my way to be courteous.

You know what?  I decided to leave that cart there.  I figured it wasn't blocking any cars, it wasn't blocking a significant portion of the sidewalk and there are dozens of young men employed by the grocery store who have the unenviable job of gathing the carts up to return them to the store.

But you, Mr. Parking Lot, sitting in the car next to me mumbled loud enough for me to hear something about me not having the "courtesy" and "decency" to put the cart where it belonged.

Yep, I sure as hell look able bodied and whole.  But I am not.  I have been in daily pain for over a year and I am tired.

I don't manage my shit as well when I am tired, which is why I threw my car in park, got out and used my precious walking time to walk over to your car, where you were righteously sitting with your burning cigarrette.


"Sir," I started when you interrupted me.

"Oh you heard me, did you?" he said.

"Yes I did. I have Lyme Disease and I have severe joint pain.  I left that cart there because I can only be on my feet one hour a day."  My voice was not kind or soft.

You persisted in your quest to right the world of my wrong doing and grumbled something about "Oh, you've used up your hour have you?"

I said "Yes!"

As I turned to leave you said "Well, I will just move that cart for you."

So much kindness Mr. Judgey McJudgey Pants, I didn't hardly know what to do with myself.  So, I spit out "Thank you." Followed by "You might want to think before you judge a stranger!"

To which he replied something about me needing to stop judging strangers.  Right.  I raised my arms up in the international gesture for "What the hell is wrong with you?" and drove away.

To cry at home on my couch.  I have an unfortunate habit of crying when I am angry.

And because I don't like being limited and I don't like being sick and I don't like being unable to return to the stupid cart to the stupid place.

I really don't care about Mr. Parking Lot or his attitude, he is likely an angry man who dumps his anger out on everyone as he goes through life.  If I were to guess, I'd say his life probably sucks.  I could be wrong about that, but generally happy people don't act rude to strangers.

If I weren't so freaking tired, I'd have ignored him and gone along my merry way.  Like I said though, my shit management skills are really lacking when I get to a certain level of exhaustion.

My guess is if I had a cane or looked disabled, he would have been less likely to say anything.  But I look perfectly healthy.

But I am not perfectly healthy, I have Lyme Disease.  I have a disease that is hard to treat and can be very debilitating.  I consider myself lucky because I'm only dealing with joint pain and fatigue, rather than a myriad of problems in multiple body systems.  My husband might have the disease and so might my 9 year old daughter.  Treatment is hard and I can't imagine my little girl going through that. That really makes me want to cry.

So, I am not sitting on my couch crying because Mr. Judgey McJudgey Pants hurt my feelings but because a confrontation with a stranger in the parking lot puts a spot light on my internal struggle with my lack of capabilities. I had to talk myself into leaving that cart there.

My cats Blizzy and Ju-ju sitting on the
chair I use in the kitchen.

I'm not contributing much with household chores.  I can't garden much.  I have to sit in a chair in the kitchen when I do dishes or cook.  I mostly don't shower because it involves standing.  My husband pushed me in a wheel chair when we accompanied my daughter's class on a field trip. Then I feel guilty because I am not contributing.

For the first time in my life, I have physical limitations and it sucks. Coming to grips with my limitations is not an easy thing to do.  There are way too many instances of "I can't" when I have lived my life as an "I can" kind of girl.

So, Mr. Parking Lot, thank you for reals for providing me an opportunity to deal with my struggles.  I need to grieve these changes in my life, even if they are only temporary.   I haven't gotten it totally worked out, but I will.

And, maybe if this happens again, I will keep it together better and use it as chance to advocate for those with invisible illnesses.


You can read Talking Body, Part 1 here and Part 3 here

Talking Body, Part 1

I knew better.  I knew that it wasn't the place to build a foundation.  I endeavored to make something solid and wanted to base my sense of self on something that was going to be a steady.  Something that would be under my control.  

I knew physical beauty is fleeting and a gift given only to the young, even when I was young.  I recognized that my slender body, flat abs and glowing skin were because I won the genetic lottery, not because I was special or better than anyone else.  I resolved to grow old gracefully.  I determined I would embrace the hippie earth mother vibe fully.  No hair dye.  No Botox. No fad diets. Society's obsession with beauty, sexiness, make-overs and all the lot could go fuck itself.


I also fully embraced the idea that liking myself in a society that profited from my self-doubt was an act of rebellion against a toxic environment.  But, let's face it.  It wasn't hard for me to do that.  While I wasn't the ideal woman, you know, a leggy, busty blue-eyed blond bomb shell, I did get pretty lucky in the looks department.  

Yay me!

But knowing that even those of us who win the genetic lottery fade with time, I made efforts to ground myself in something other than my looks and body.

Fail.

Not an epic fail, but a fail none the less.

Still no hair dye and I am still embracing my wrinkles.  I still refuse to diet.

But damn it!  I am gaining weight.  And starting to wonder if maybe I should diet.  All while knowing that there is no way on God's green earth I am going to go on a diet.  I was actively starving to death during the first part of my pregnancy due to Hyperemsis Gravidarum, I am sure as hell not going to restrict food on purpose (more can be read about that here).

Exercise would be helpful but the Lyme disease is making that impossible.  Right now standing more than an hour per day creates so much pain I can't sleep, so that rules out exercise because, you know, I have to use that hour to do things like walk to the bathroom or make dinner for my family.

It has forced me to recognize that while I made a conscious effort to base my self-worth on something else, the idea that I had value because I looked good still managed to sneak in.  Lyme disease has really stripped my psyche down to it's bare bones.

So, as I am gaining weight I am struggling with my body image.  Which is dumb, because even though I am heavier than I was in my 20's and 30's, I look fine.

And as I am struggling with my body image, I am also struggling with feeling good about myself as a person. Which is also dumb because I am so much more than my body.  Or my looks.  Especially my looks.

Dumb. Dumb. Dumb. Dumb.

Now, I'm not dumb but the idea is dumb.  And it is an idea that gets pummeled at us from every freaking angle.  What I am struggling with is what millions of women have struggled with for years.  Little girls are absorbing these messages.  I recently overheard a 9 year old girl say "Yay! I am skinny." NINE YEARS OLD!  I didn't even think about my body when I was 9.  My daughter is currently 9 and I hope she doesn't think about her body except to be kind to it when it needs care.

For those of you who have struggled with body image for a long time, I am so very sorry.  It is not right and it is not fair and you are more than that.  I hesitate to even share about my recent struggles because I know it is so small in comparison to what other women have experienced.

Stupid, insidious, bull-shit messages about beauty and worth.


You can read Talking Body, Part 2 here and Part 3 here