in hiding

When my brother and I were growing up, my Mom would occasionally loose it.  What I mean to say is, she might raise her voice.  Then she’d lock herself in the bedroom and sob.  I don’t know how long she’d stay in there, honestly – I’m looking back through at least 20 years of time into a child’s memories.  It was an immediate “Oh Shit” from my brother and me – though we definitely would not use those words.  We realized we had pushed our mother too far and would sit silent outside.  Sometimes we’d slide notes underneath the door with pictures of happy families or “I’m Sorry” or “I Love You”  or “Can you come out now?” written on them.  She would, when she was ready, and we would go on from there.  It didn’t happen very often.  I guess I’m not as good a mom as my mom….or maybe my children are not like my brother and me when we were children…or maybe I’m in TMOFN* and don’t have anyone to help me.

maybe it’s something else? I don’t know.  What I do know is: I’m not doing so hot.

Last night I sat on my bed staring at this ring on my finger and was overcome by how empty it felt.  Such a paradoxical thought – a ring, certainly filled by my finger, yet felt hollow, empty, lonely.   I watched back episodes of Reign on Netflix where poor Queen Mary struggles with questions of marrying for the good of her country or marrying for love.  I know it’s a dumb teen show that is barely historically relevant but it hit a chord inside me.  I’m no Queen of Scotland. But my children are mine to care for just like her country is to her.  Do I sacrifice happiness and love for their provision? Is that even a thing? or something I just tell myself because the alternative is messy and difficult.

You don’t know, dear reader, because I haven’t posted nearly all summer, but in July, I told him in very plain English to use the time I was in NY with the children to pack up his things and find a place to live.  He told me that our arrangement – the living in separate bedrooms and sharing responsibilities of the children 50/50 felt like I was using him for his money.  Well, forget that crap.  If that’s who you think I am and what I’m doing then we can just forget this whole arrangement business.  I found 2 five leaf clovers that day, and 1 four leaf.  Just throwing that in there.

He, of course, pleaded, came up with a plan to save us (one that I had suggested nearly 6 months ago) and promised to follow through.  Therapy.  3 times a week.

First he was appalled when I assumed he would be making the appointments.
Then he made 2 appointments a week but they all coincided with the kid’s summer swim lessons or my new job (though it was all written on “the family calendar” that I’ve been keeping for years in the entry way)
Then it was the usual.  Excuses.  His marathon training schedule is getting compromised.  My new job is making more work for him….on and on.  We settled on one appointment a week together with a new therapist.  I am still keeping my weekly therapy appointment and he has nothing else.

We go to the new therapist.  She has new ideas.  They help for a day.

That is all.

All of this has pushed me into a hole.  I don’t know what to do-or what to think.

I’ll tell you what I do think, just in case you’re wondering.  I think he is benefiting more from this arrangement than I am.  He gets to see his children daily, he gets delicious food cooked for him, he gets his laundry done, he does not have to split up his money (for in his mind it is indeed, his money), he does not have to admit failure.
I also think about what it would be like.  What would it be like to have someone that really loves me? What would it be like to be alone? What would it be like to be the lone provider…I feel like I’ve made peace with it.  That’s the difference.  He hasn’t.  I’ve stared at the open door and what lay beyond it with all of its potential and all of its terror and said “okay” to it.
The reason I pause-flounder-second guess….he says it’s a phase.  He says I’m stressed about something else.  Could it be just that? Is this just a haze that has settled because The kids are going back to school, Summer is over, I’m starting a new job, The cat is old and peeing everywhere…

Or maybe it’s because I told myself I’d wait until June.  Back when June seemed to be an eternity away I said I’d wait until the end of the school year to decide and now it is August.  June and July slipped away from me because I was away from him and now I’m back.  It’s all back.  And it’s all the same.


*TMOFN= the middle of fcking nowhere.

orange and black

Yesterday I wore jeans and it was hot. Today I am wearing shorts and it’s cold.

It’s cold, the wind is blowing, my eyes are watering…. I think I’ll move to Australia.

Meanwhile my son is taking his final swim lesson of the season and I’m marveling at his new ability to dive off the board into 12 ft deep water and swim to the edge unassisted. He’s 7. 

That’s as far as I got. With writing this blog I mean. It’s a few hours later now. You see my daughter has a friend over, they both have ADHD and Autism spectrum characteristics but in very different ways. It’s just a simple fact that this friend happens to have the characteristic that is so often stereotyped of talking incessantly about things that interest her. With a loud voice. 

I struggle.

Now I am home, a full floor separates us and the voice is at what I would call a reasonable volume-for having a conversation with me.  Yes, I am hiding. I’m not being awesome, super engaging, creative Mom. I’m simply hiding. 

They are doing okay. They don’t need me, even to fix lunch for them but still the guilt creeps in.

I am sewing. 

A dress I found at Goodwill that had potential to be worn at my cousin’s wedding in a few weeks has gotten my focus lately. Some alterations have blossomed into more alterations and now I am sewing a black ribbon across the bottom to pull up the length and hide stitches. 

My sewing machine and I have trust issues, especially with such delicate fabric, so it is slow, sewing by hand, but I have control. I hope to god it works.  Unfortunately my mind keeps going back to my family’s responses every time I ask their opinion on the changes to the dress… “it’s….orange” “you look like a pumpkin!” “Looks like Halloween” ….obviously and great. Not what I was really looking for.

I find myself also annoyed by something else. You see my husband has a large family with 20 or more cousins who have married and had their own children. I’ve learned their names, where they are on the family tree and met just about all of them-even the ones who live in New Zealand. I, from a series of unfortunate events have been left with cousins that I can count on one hand. Talking about them to my husband is confusing to him because he doesn’t know who they are. “Is she the one with the fake boobs?” “Is she the one with the sick Mom?” It’s really not so difficult to just sit down and learn them. His refusal to come to family events on my side has made it all the more painful. Do you know how many of his cousins weddings I’ve been to? I don’t. It’s a lot. And for the few weddings on my side of the family he can’t manage to put his differences aside to stand by me….I can’t. 

I can’t be okay with it.

I don’t know where to go from here. I wish I had some clever thing to say to tie this all up with a pretty bow and say look how nice. But I only have black ribbon right now.

not yet ready

I have shut myself in this stuffy little room

because, I fear

I am not yet ready for people


Slipped downstairs quietly – like floating

and started to clean – others still snoring

when a book caught my eye


Frozen still by words I stood

my heart wrenched captive

perhaps the “Book of Best Poems” was more for me than my kids.


Clump and Creak

down the stairs

carrying soiled sheets and looking up from his phone

mocked my unusual, still frozen pose


And then, when pointed out my camel toe

my heart detached from the words in my book

feeling flooded from their own


I sat down of shame in my cozy pants

but continued to read

now noises of the morning increased


Slurped and Scrunched cereal, my daughter, aloof

while trying to be friendly with chat

Grunts and Snorts of laughter broke my sway

something funny on his tiny screen while sprawled on the couch he lay


Finally words of my own swam free

flooding my mind since I dare not speak

and this poem began to form though

you won’t find it in any book but my own


My moment of magic was stolen from me!

by people doing what people do

Frustration and Judgement were now mine


I retreated to the quiet room

Silver Sliding sound of pencil releasing my thoughts

to give order and pause


With it out now, and coffee in hand

I’ll face the jumble of sounds of a house waking up

focus on my therapy, my moment of zen-

my hands, quite hot, on my favorite cup.


Birthday post

I have been far too busy to keep up with an account of my life. I made it to NY on my motorcycle and am thoroughly convinced that I have a guardian angel. I got a flat tire during the second day. Not while I was going 85 down the highway but when I was stopped for gas. There was a great local shop that picked up the bike and got it fixed and got me back on the road.

I’ve been working hard on the farm. It’s so fantastic to be back in the hills and trees and mountains. I’m surrounded my wildlife and dogs and my family.

Yesterday was my birthday. I turned 35. I did a motorcycle ride with my dad, helped my brother finish mucking the goat barn, rode a sturdy goat-hilarious-and had my absolute favorite ice cream cake from a local business that we’ve been getting cakes from for my birthday since the day I was born.

I have done more physical labor than I thought possible but I feel a sense of peace and joy. I still have another week out here before I make the 1,100 mile drive back home. I’m starting to worry about it but trying mostly to focus on the now.

Goats headed to the barn

Me just inside NY

Motorcycle trip day 1

Was technically yesterday. You can’t really write while riding. Nor can you take pictures, which is sad.

I went 409 miles and because of stops and gas it took 10 hours. I tell you honestly when the road came into view that my hotel was on I did a literal fist pump in the air. If a trucker was behind me he probably would have thought I was telling him to blow his horn. I had been through rain, hail (yes-ouch) and traffic. It was quite the day.

I got lost on a beautiful highway that meandered through Indiana dunes state park and Michigan. It took longer-but maybe not because the traffic on the highway was absolute crap. Stop and go on a bike is high on my list of most terrifying.

Today I meet my dad half way to the next hotel and we will continue the journey together from there. Tomorrow might be rain so we’ll see what it brings.

We’re in no hurry.

Charging. . . . .

Dragging his feet, my son approached my side, “Mom, I need to charge my batteries.”


“Do you know how I charge my batteries? I charge them with hugs.”  Oh, sweet child, how pure can you be? Phone down.  Big boy up on my lap.  Skinny arms around my neck.  Me too…me too….it’s just sometimes I forget.

“Let’s go snuggle, Mom!” It’s almost his favorite thing.  Jump in bed, little light on, teddy bear tucked under an arm, I slide in too.

“Does this charge your batteries too?”  I ask as I admire his little boy hair.

“Oh yes, Mom.  This really charges my batteries.  Just like hugging, only better.”  Okay…I get it.  I get the clinginess all day that drove me nuts.  I’ll stay…I want to stay.  It’s so past your bedtime but what does that matter? Just a little bit more.  We both need charging.

The heart of the cloud

It usually takes a few fights to get down to the real problem. Today the real problem emerged.

To understand, I’ll need to back up. 

He has “this dream”. He’s “had this dream forever” of buying land with his brothers and getting to do whatever they want on it. Build an off grid cabin, let their kids explore…..

I first heard about this forever dream about 5 years ago.

It has to be in an area that’s central to both us and his brothers.  If you draw a line from us, to his brothers, to my parents you end up with a very acute triangle with my parents (and the area I grew up and eventually want to return to) in the longest skinniest corner. Nothing central to him and his brothers will be in anyway closer to my family.  He wants to buy this land to retire on, I don’t want to retire there.  I’ve had issues with this whole idea from the very beginning. It is a lot of money and heading in a direction that keeps me from moving closer to my home.

The land issue was brought back into the picture a few months ago when one of his brothers received and inheritance from his wife’s deceased father. They had enough to buy the land outright. They found land that they all loved-everyone but me because I wasn’t included in the group emails that discussed any of this any more. I get it.

So when I found out about this I thought it was great. The brother could buy the land, he could go visit it and build stuff on it with him and the kids could all play. Fun times.


He wants to pay for 1/3 still, (there’s three brothers). Okay…we each get a monthly allowance of money that is ours to spend how we please, spend it on that. Pay him off.  


Then I learned about the money in the stock market. Apparently, over a number of years, we’ve earned $10,000  in the market. He proposed that we take that money out of the stocks and invest it in land….land is much more stable….oh, I see what you’re doing now…..we’ll, after thinking it over for some time,  fine, take it out and put it in the land.

Somehow that got forgotten. Or not good enough.

Now he’s bring it up again. He has sacrificed, he says, more than me, not spent bits of money here and there so he can save it for a large purchase. He wants to cash in and he thinks that is worth $10,000 over 7 years. He thinks I have spent $10,000 on stuff I think is important that he doesn’t and he deserves his own 10k. 

Mind you the night before he said he was worried about the budget? Wanted me to figure it out? Well, now he doesn’t think we’re in a budget crisis. Just that I’m spending a little too much in groceries and such and need to cut back. He doesn’t want that money to come out of stocks because that is going to our retirement. He wants this money to come out of our regular savings account that doesn’t have a real purpose so that he can “waste” it like I did with my whatever amount. 

So remember yesterday when I kept asking what do you want to do about it? And he said he didn’t know? He did know. He wanted 10k but didn’t ask me.

Only he says he did. 

From here in out I’m going to post txt msgs to let them speak for them selves.

Husband: We can’t have a functional marriage if I’m not allowed to bring up legitimate concerns. You buy nice things for yourself in little amounts over the years. There’s nothing wrong with this. There’s nothing wrong with this. There’s nothing wrong with this. I don’t buy tires or nicer meals at restaurants etc. in hope of buying one big thing in the future. How am I to tell you that I’m sacrificing when you aren’t in order to save for things long term without making you feel bad because you didn’t? I really don’t know. I have spent alot if time with Dr Paul on this topic and have failed many times when bringing it up. Yet if it is ignored then I’ve made many sacrifices for no reward. What should I do? I’m fucked either way.

Me:   I have already said you could take the money. Why do you need to bring it up again?  I also said I don’t know how you should bring things like this up. It’s something to work on. I cannot fix it over night or over 10 years. And neither can you.

Husband: The same problem with your brother. I can’t bring things like these up without making you feel bad. They are real concerns and I know I’m not crazy to bring them up. They are things that occur in all marriages. But the way we go about things makes it so our issues never get resolved or they become long on going fights that end with resolution and many hurt feelings.  

Me: Yeah I don’t have the answer and I don’t wish to continue like this.

A while later

Me: Why exactly are you still mad at me?

Husband: Why are you? Last we were together you walked out on me mid-sentence, closed the door on me. You have not spoken to me since then… And you ask why I’m still mad at you? Are you serious?

Me: We exchanged texts since then. I am not mad

Husband: Ok then

Me: So why are you still mad at me?

Husband: I was avoiding you because you were rather unpleasant to be around.

Then we got into a verbal argument. The next text msgs came in at 1 am

Husband: Why is it always about you. Why can’t you just take a moment to acknowledge what I’ve done without turning it into poor you or changing the subject.  You make me feel insignificant. Just asking for a little positive from you. I gave up five hours of my weekend for you and not a bit of appreation. You only said “you didn’t have to come” way to make me feel appreciated. You rarely show me appreation for my efforts and we I point them out you belittle me. How would these actions go over for you the other way around?

(The 5 hours he’s talking about -I rode my motorcycle 2 hours out to have lunch with a friend and then back and he invited himself and our son along)

Btw I had fun.
I don’t know what to say. I feel like I haven’t made it about myself at all. I’ve been trying to end it. I hate the personal attacks that he can’t see as such. 

Someone, please tell me if I’m wrong here. I’m not just writing this for validation.

what color is the grass over there really?

It’s been a while. Things have been stable. I thought we’d reached a new level, some new relationship that worked for us.

I have to expect fights though, I have to be okay that they happen-all couples fight, right? But do they all feel like this? Would I feel like this with anyone?

He said he was worried we were spending too much money lately. I joked and said we’d gone too long without a disagreement. He said he doesn’t want to be in charge of the budget anymore. He’s tired of keeping track of where the money goes. “Okay,” I told him, “send me the spreadsheet so I have the previous months numbers, I’ll work on it”

“When. When will you work on it?”


I thought that went well.

 He couldn’t let it go. We couldn’t watch our tv show together. “You’ve said that in the past. You’ve said you’d take over the budget and then you’d stop and I’d end up doing it again.”

“Okay but now I said I’d do it. The me, right now, is saying I’ll do it.”

It wasn’t enough. I could feel his energy changing. His memories of past injustices and times I didn’t follow through with all the things I said I’d do, the expensive sneakers I’d bought for running and then I only ran for two years. The weights he bought me and I didn’t like lifting weights….it was feeding a snowball that kept rolling, and growing.

Today I made a new log of expenses. I made charts and trends and it showed that it really wasn’t that I was spending an exorbitant amount on groceries, not more than months previous, that there were added car expenses, garden expenses….other things adding up. I’m not sure if this made him angry. Actually I think it made him more worried. He couldn’t just blame me for spending more than we had and therefore it would impact him too, he’d have to make sacrifices too-or at least consider the budget a little more than before when doing a house project.

That’s when the fight started. “I feel like I have done more to sacrifice all these years, to save money, and worked so hard and you’ve spent more on yourself than I have.”

“Okay, what will make this fair?”

That’s the problem. There isn’t anything to make it fair now. I didn’t agree with him-I’ve felt restrained and constrained and controlled by his budget worries and had to make lots of sacrifices too, but I wanted to validate his feelings, I wanted to make it right for him.

That’s not what he wanted.

He wanted me to admit that I’ve spent more on myself than he has. That he’s worked to make the money and I’ve just spent it on whatever I want. He doesn’t understand that it’s cheaper to make dinner from scratch, so I do even though it takes 2 hours sometimes and way more planning. He doesn’t understand that I make laundry soap and hang clothes on the line to save, even though it’s more work for me. He sees the cage free $3 eggs instead of the bulk white $.99 eggs. He sees the pods of coffee already made up instead of me filling the little reusable k-cups in the keurig he bought me for Christmas to make my life easier.

He brought up a lot of things that I did that wasted so much money that he didn’t agree with and he wanted me to admit that I was wrong.

But what will make it right for you? What can we do to make it right now? Is the answer really to knock me down and make me say uncle? Admit all that money I wasted because I bought what I thought was right but he didn’t agree with?

Is that how things really go?


the dynamics of time

There’s not been much time. Not much to report out here in MONW.

Life moves on slowly, quickly…

The school year is quickly approaching, that long dreadful year of school; and  now summer can be seen on the horizon -but too far away yet to reach.

Flowers were delivered from a father who tries to buy his daughter’s love and soothe his guilt for not being the man she deserves

But not by paying child support with out a fight or grumble….

I am consumed with all things dance. The recital is quickly approaching – yet – still – 2? 3? Weeks away? My brain practices the double pirouette I am choreographed to do front, center during our dance. There is no try – it must be flawless. Certainly against a backdrop of girls who don’t even think twice about it.  I am a dinosaur in a white tutu among a sea of fresh young things who find movement and control over their body so easy it’s expected and taken for granted. I was them once.

I am, however reminded occasionally that I possess something special. That I still possess that something special that I had as a young dancer that drew all eyes to me. I don’t know if it’s love, passion, emotion- but it’s still there.  

“I was just talking with my friend, about you”, this sweet young dancer came up to me during a quick break, “we were talking about you, so I wanted to let you know what we were saying so you didn’t think we were talking behind your back” -oh I’m used to that…. “we were just saying how much we love watching you dance. We just always watch you when we get the chance and when we say ‘oh I wish I could dance like her‘, it’s You we point at.” She pointed at me now, “We want to dance like YOU. We all do. Whatever it is you are doing, you’re always so in it, so invested, so beautiful.” She became a little embarrassed and was rambling and I finally realized the compliment she was giving me. I was too shocked to respond properly and we had to resume our places and continue with the rehearsal but it still resounds in my head. 

I’m old-but I’m a role model. I am what they aspire to be….I’m not sure I can ask for anything more.

The other part of it is this:

The hours of pain and practice and remembering steps and counts have been mixed in a bowl, baked into a wonderful cake that is performing. 

I love performing. I love bringing the result of the collective hard work of countless hours of countless people together, to create a moment of expression that can never be captured again, to others.

My friend happened upon an interview by Mitsuko Uchida where she talks briefly about this wonderful and terrifying experience that is true performance. It speaks my feelings so much more eloquently than I could. And if you feel so inclined you could continue watching a very inspired performance of Beethoven’s 4th Piano Concertos. One of his first groundbreaking compositions-and done most subtilely. 

I am working on making stage eyelashes for myself. Here is one balancing precariously on my eye 

I wasn’t happy with any of the ones in the store so….I made them. Of course, because that’s what I do. Make things…. Bits of these eyelashes, bits of others….a lot of glue, a little swearing under my breath….I hope they stay together for the 4 full stage makeup rehearsals and performances….then they can fall apart all they want.

Another goofy picture of them drying.

I hear the words of my ballet teacher from out east in my head. (He was a retired soloist from the NYC ballet during the time of Balanchine and my most beloved teacher) he said about putting on stage makeup, “put it on until you’re sure you’ve put too much on, then put more on”.   It’s true. I know in this little town Of MONW I’m going to see a sea of pasty faced girls. I hope they’ll let me draw eyes on them and give them cheeks and lips that won’t disappear under the blinding lights.

I get to work in the wings for the first performance. I’m giddy like a child at the thought of this. That: in the wings, just off stage, is where the real magic happens. Costumes get pinned when they tragically break, hugs and air kisses and Meirds get whispered and somehow the nerves are turned into fuel that makes you leap a little higher, smile wider and remind you that you are a part of something much bigger.

Now here is where I take a step back. 

I must remind myself. This is not the NYC’s soloist’s company, we are not dancing with a live, well known orchestra, we have no famous names on the billboard. This is just a little kid recital taught by teachers who make me shake my head sometimes and the audience is going to laugh at their cuteness more then gasp at their talent. 

But for me…it awakens a dragon that has slept for a long long time and is now rushing back with terrific ferocity and speed.

Fibromyalgia/Chronic Pain:It’s All In Your Head.

I can tell when my kitchen floor needs scrubbing.

Now, that doesn’t always mean I get right down and do it.  But I can tell, and it sits in the back of my thoughts as something I know I need to do, taking up brain space until the day my husband decides to tell me that I’m not doing a good enough job keeping house.

I don’t know about you – but this makes me angry.  When I get angry, I clean.

You can see how this works out very well for my husband.

So far I’ve talked a lot about the ASD in this house.  Everyone here is on the spectrum in some way.  The only one with a Chronic Pain condition however, is me.  It’s just another invisible illness that – since it’s just me who deals with it constantly – gets forgotten.  I have very good friends and family who try very hard to understand what I deal with but in all honesty, I think there is only one person in my circle who never seems to forget that I live with constant pain.  Not my Mom, sorry Mom.  Not my daughter – even though she is awesome.  Not my best friends.  Nope.

It’s an elderly lady who lives across the street from me.  I’ve never given her enough of my time or followed through on the promises I’ve made to her to come over and bake 20 pies when the apples come in to season.  Still.  Every time I see her, she asks me, “How are you feeling? I’ve seen your Facebook posts, I see you outside working, I see everything you do with your kids, you must be feeling better?” (Yes- she is a 90 something year old woman who regularly uses Facebook)  “No.” I sigh.  “I’m not.”   I wish I could tell her otherwise.  For my sake and for the concern that wrinkles across her face, but I can’t.  The truth is – I’ve only found ways to cope.

She finds great comfort in that, and amazement.  Which I don’t often get from anyone else.  She once called me on the day before Mother Theresa was going to be declared a Saint and told me that she would be praying for me during those moments when she was brought into this classification and told me that if I felt so compelled to pray to Saint Theresa also I might get my own miracle – a relief from the pain – since miracles from saints are more likely to happen when they are named Saints…..these are her words… I am not Catholic.  But geez.

She called me.  She prayed for me.  She thought of ME.
I think she is my own little saint, over there, across the street in the big old house where she raised her kids.

 Before I talk about the nitty gritty of why I sat down tonight to write, let me talk about my kitchen floor.  It’s not terribly big.  One foot by one foot squares of manufactured stone: 7 squares long, 5 squares wide.  (I do these sorts of counting games in my head to distract myself, know how far I’ve gone, how much is left to do….)

I know they are manufactured because there is a sinister grin indented in almost all of them.  The coloration changes from square to square, but the texture pattern of these tiles, when whatever material was used, was poured in, remained the same. I know my floor is dirty when I can start to see these texture patterns – that sinister smile catching my eye.

Can you see him?  Taunting me?  He sticks his dirty tongue out at me with all of his filth.

It becomes a game, me scrubbing the dirt from his face.  Then I get about half way done.  My wrists are burning, my knees have been popping, my back, fingers, neck…everything is in pain.  Even counting the squares or faces left can’t distract me.
I think about stopping.
Usually I reach for something else to keep me going, whether it’s remembering my husband’s criticism, anger, clonazapam, or alcohol. Tonight I SnapChatted a friend and we joked about how we were both still working at 9:30 at night on a freaking Saturday.  Then I poured myself some gin on the rocks and the burn in my chest was acceptably overpowering to the pain everywhere else.  I finished the floor.

Okay, now it’s time for the nitty gritty of why I sat down tonight.  I have chronic pain.  No body knows why.  I have a handful of theories ranging from my father’s exposure to agent orange in Vietnam to the stress I’ve experienced in my life to the Lyme’s disease I had multiple times as a kid growing up out East.  But there’s no proof of any of it.

I remember the day my chronic pain came on.  I was on a vacation with my husband’s family, my son was less than 2 years old.  It was an extremely stressful vacation – even before we left.  I was walking around the Creation Museum in Kentucky with my in-laws and I remember my legs hurting way more than ever before.  I was carrying my son in a wrap so maybe it was that….No….this was worse.  I couldn’t stand.  I handed my son off to an eager grandparent and sat down.  I could.not.stand.  I went to the bathroom to try to collect myself and when I came back my MIL asked me if I was okay.  I clearly wasn’t.  I exaggerated my monthly cycle and what it was doing to me, got a drink from a vending machine.  We left and went out to dinner, then I backed my car in to another car in the parking lot.  My brain was not with me.  It was the first time I had to split my concentration on everything I had to do with the pain I was experiencing.

Later on I would get lost, blocks from my house.  I could not figure out the roads in my head to get from my house to the grocery store – seriously less than 5 miles away.  I could no longer understand things spoken to me.  I needed to write them down – color code them even.  I couldn’t hike, bike, stand on my feet to wash dishes, cook, go up and down the stairs….at time I couldn’t speak clearly…..and I had a 2 year old son and a 7 year old daughter.

I laid on the couch for a good part of a year.  

I saw Every Single Specialist and tried Every Single Treatment I could find.  No tests came back positive except one for Ehlers Danlos which only partly explains my symptoms and according to every doctor in a two hour radius from me – there was nothing wrong with me.  BUT THERE WAS! there had to be….

I  wasn’t making this up – Who would want to? This SUCKS.

It’s been a very long journey since then.  My son is now 7.  I ride my bicycle, motorcycle,  hike sometimes, camp in a tent (if there’s an air mattress), garden, do ballet, care for the elderly, maintain my house *to a certain standard, play the piano….


It’s all in your head.

I’ll admit, the first time my psychiatrist said this to me I nearly jumped over his overly large desk to hit him.  But I didn’t. And he explained himself.

Everything is in your head.

Let’s say you loose your job, your wife, your car….you are legitimately stressed out and worried.  You have every right to be.  Let’s say you think about this all the time….how stressed will you feel?

Let’s say you have a pain in your stomach.  You think about it day and night….what is going to happen? If it were me I’d end up in the ER eventually.  But if you go about your day to day life, find things that make you smile, do things that make you feel accomplished, that pain in your stomach isn’t so bad….it isn’t all consuming….it’s the thoughts that make it that way.  Thinking about something all the time will wear you out.  It will make it more difficult for you to handle it.  It will BE/SEEM worse.

THAT is what he meant by “It’s all in your head”.

Having gone through two natural child births, I know for a fact that I can choose to let that Worst Pain Of My Life completely freak me out – or not.  And when I let that pain freak me out it becomes something very very scary.  I can understand why women get epidurals or forgo childbirth all together for a cesarean.  BUT.  If I manage to chill out (which takes A LOT of practice ahead of time) I realize that I can handle it.  It becomes not so bad, and I can, actually, get through it.

Now, being the good doctor that he is, he made it very clear that this was all very easy for him to say and extremely difficult for anyone to do.  He also made sure to prescribe me prescriptions that would help me along this journey.  No – not pain killers….anti-anxiety medication, and sleep medications (I was also suffering from insomnia for over a year when he had prescribed that one)  All of that, along with my psychologist who is a good Cognitive Behavioral Therapist helped me get to where I am today.

My CBT and I have had many conversations about how the brain’s pain response is one of the essential parts of survival (for how many thousands of years? don’t ask anyone at The Creation Museum)  I had to retrain my brain’s response to pain.  Something that had been written into the core of the survival part of the brain that gets passed down from generation to generation.  Pain = Bad.  Pain = Something is WRONG.  Well, for me, as far as we know, there isn’t anything wrong.

At any point we might discover new technology that figures out what is causing my pain and then eventually something that fixes it, but for now, I have to go with this.  In my case Pain does not equal Bad.  I hope for the day when they figure out what is “wrong” with me – that thing that makes me have pain ALL THE FUCKING TIME.  Because then there is a chance for a cure.  But for now I have to keep doing what I always do.  Remind myself that it’s all in my head.  Sleeping doesn’t make it better.  Whining and Complaining do not make it better.  Tickling my children?  Chasing them around the yard? Gardening?  Yeah – it might give me more pain the next day, but it feeds my soul happiness, and that – for right now, is the only thing I have to ease my pain.