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Resigned

What is this new feeling I have lately? It seems to be a new flavor, a mixture of several. I’m feeling calmer, not exactly at peace, but not so turbulent either. The sadness is still there, a deep underlying sadness that I’m sure will always be there. I have less anger.  I have less ambition and determination, less fight in me. I think this is a good transformation, or if not good as I don’t like weighing in with good and bad, lets say a necessary transformation, though it feels odd.

I think perhaps my spirit is finally broken, tamed, like a wild horse, I have been broken. Even more, I’m the wild horse forced to live out its days on a carousel. carousel-1703273_1920.jpgI am resigned to live my new life, accepting the constraints of the saddle and bridle and staying within the limits set upon me. I’ve been trying to be free for far too long. I don’t need freedom to do good. There is much I can do from here and it will have to be enough. I can be grateful to keep moving, if only in circles.

I searched for words for this feeling and I read the synonyms for resigned, I feel this is exactly where I am right now. Look at this list…tame, agreeable, long-suffering, stoical, patient, tolerant, gentle, quiet, ready…I could describe how each of these words fits me.

resigned

A few days ago this feeling settled in and said hello. I’ll describe that day here, because it has taken me several days to say hello back.

I can’t rely on my memory any more. When smartphones first came out I ridiculed people for spending so much money on a device. Now I can’t live without mine, as it truly thinks for me, reminding me all day long about what I’m supposed to be doing. So I check it as usual and see kiddo has a baseball game. No problem. No other conflicts. I know I may have to drive him, so I plan my time so that I am rested.

When he gets home from school I look again and see it is an away game at a ballpark I am unfamiliar with..and I map it and see it will take nearly an hour to get there. I remain calm as I tell kiddo we have to leave very soon. He asks for his uniform. Crap. I forgot to wash it. All my checking on the game and calendar nothing jogged my memory for this detail. So I add “wash baseball uniform” to my calendar so I don’t forget again and he has to wear it dirty for this game, luckily he didn’t do much sliding it didn’t look terrible.

I throw away my feeling of failure, no time for that. I feel calm again. Kiddo needs a snack. Make him a sandwich to eat in the car, except I forgot to go shopping, used up the bread this morning. Crap. quickly slice some cheese and grab pretzels. That feeling in my stomach again, like I should be doing better, but I have to ignore that. I make coffee while he gets dressed.

Out in the car my phone wont let me get the address for the gps. We are already late. I can’t think clearly. I call hubby from the driveway for the address. I enter it the address and pull out while it it loading. But then I can’t see the screen on my phone. I hand the phone to kiddo and ask him to adjust the brightness, I had it turned way down and couldn’t see it in the sun. He didn’t know how. What? How does he not know this, its just just his kindle, but I have no time to feel irritated. At the next red light I adjust the phone myself and see the gps is still not loaded. I know I have to get on the highway but I have no idea where to go after that. Anxiety is rising. Breathe. Its okay. I pull over and really look at my phone. I notice the cellular data is turned off…oh yeah, I did that at his last game when I was playing a game on my phone and didn’t want to use data. Crap. That has been off for 3 days.

I turn data back on and my phone blows up with all the queued MMS texts that could not come through. Crap. All that missed info – yup, thats why I didn’t know his last practice was a different time, and so much from school, but no time now to feel stupid. GPS is loading finally so I get back on the road. I don’t look at the clock. We are late, I already know we are late, and the clock won’t change that and I don’t want to feel nervous while driving. Kiddo is chatting about his school day. I can barely understand him, my head is racing and I have to focus on driving, but I say “uh-huh” a few times.

We make it off the highway, and into these terrible, but beautiful, twisty turny hilly roads. I’m getting motion sick and driving slower than the speed limit. Crap. We are so late and I can’t even drive full speed. We go through forest lined roads, past green mucky ponds, further into the valley. We make it to the ballpark, and can’t find his team, there are several fields and games. We spot his uniform color and I see the closest parking lot is full, so I continue on. We got there. Sigh of relief. He grabs his gear and heads to the field. I stay in the car.

Why do I stay in the car? So many reasons, where to start.

  1. my limp. Okay so this place is full of steep hills and slippery gravel. I did not want to attempt that steep hill and the only other way that was not so steep was about a quarter mile away and through the grass fields, still difficult. Even with my walking stick and new knee brace, these distances look like miles and miles to me, it is just so difficult to walk across. And I feel stupid, like everyone must see me coming.
  2. neuro issues. It was hot out and no shady places to sit even if I did manage to get myself down there, so I stay in car with AC running, my meds make me dangerously heat intolerant on top of the struggles I have to self regulate due to nerve damage. Sitting in full sun also triggers migraines
  3. my limp and social issues. no places to sit at all, I would have to carry my own chair which would be very difficult on the already difficult terrain. If I had ever spoken to the other parents, yes I’m sure one of them would carry a chair for me, but then I feel like I would be stuck sitting with that person and forced to be social. I can barely manage my own life I don’t want to hear about theirs, it is too much, never knowing what people might share or ask me.
  4. anxiety. If I managed to get myself down there and find a place to sit, I didn’t see any place to be quiet. Some of his games I can put a chair at the end of the line of parents off by myself enough that I feel I have my own space. But here with so many games going on at once, cars and people constantly coming and going, There was no way to position myself safely, I’d be jumpy and startled the entire time, and I can’t do that – I have to drive back home
  5. mental fatigue. I can’t pay attention to the game. Sorry kiddo, I’m proud of you for working hard, but baseball is dreadfully boring and I have no clue what is happening even when I do try to focus it makes no sense and my mind wanders. I usually bring my camera when I sit near the game but in my car I can close my eyes, read a little, play a game on my phone. And they last for hours, too exhausting to pay attention that long to anything. So I try to watch for when its his turn at bat and a few key plays when I hear the crowd get excited, otherwise I reserve my energy for the return drive

Thats about it I think, though I think I jumbled them up a bit even though I tried to organize it in a nice numbered list, hope it makes sense.

I’m just trying to illustrate how this simple task of getting my kid to his game is not simple for me. I can barely do it. I try to be grateful that I can still do it, at least be useful and get him where he needs to be. But it is difficult to watch the other healthy parents, hooting and hollering, running down that gravel covered hill like its nothing, carrying chairs and coolers, sitting and chatting with their friends, they seem to really enjoy the experience. I don’t know this, of course. I’m only giving my observations and they seem to enjoy the game and the social time with the other parents. I’m not a part of that world. I live in a different one. Am I jealous of the other parents? In some ways, yes that is likely what I am feeling. Anger that my life is so difficult. But I can’t stay there long or it festers. Acknowledge and keep moving because life does not slow down for me.

My life is often surreal. Like I’m in slow motion or everyone else is on fast forward. They walk and talk and think faster than I can. I am no longer trying to keep up.

I am resigned.

I rolled in it. So what

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I wrote about my bad mood and bad attitude yesterday. It felt a little like I was rolling around in the mud, getting good and covered, feeling it ooze out between my toes, clump up in my hair, even crunch down on some grit in my molars once in a while.

I think that bad mood needed validation because I feel so much better today even though absolutely nothing else has changed.

But I’m generally not allowed to gripe, moan, complain, vent, or bitch. I’m supposed to roll with the punches and keep on smiling. Usually I can. But lately it has been getting harder to smile and I wasn’t sure why. The thing is, these punches, they actually knock me out, flat into the mud. Each time I drag myself back up and keep limping along. But for a little while, I’m going to stay down here and roll around in this mud. Stop hiding.

I can’t exactly go on strike, but I can lighten my load a little while I stay here and make mudpies. I’m supposed to go to an awards banquet tonight. I’ve been so worried how to handle it, how to smile for that long, how to pay attention and get out of conversation I don’t want to be in…screw it. No one needs me to eat chicken tonight. My husband can go without me while I make mud angels.

I think if I embrace this dank muddy place I’m in, instead of trying to hide from it, I’ll be much better off. Besides. Mud can be really great. Think hot springs and mud masks. Mud wrestling? Well…not my thing but hey some people like it. Adobe houses. Clay pottery. Yeah. I’m just going to stay here in my deep dark pit and see what happens if I stare at it directly.

Need a Lift?

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Ever had your car broken down on the highway, had to pull over, watch all the other cars zoom past you, life goes on full speed while you wait for help?

That’s how I’ve been feeling every day. Watching healthy people pass me by.  Live their lives without me, at a pace I cannot keep up with. It’s not anyone’s fault now. I can’t expect them to wait for me. They can’t expect me to keep up. And so I’m on a different track, like an alternate reality, life in the slow lane.

I suppose I’ve always had a taste of this, a bit of exclusion for this reason or that. But now the reasons have multiplied, yes like rabbits, why did my mind go there, and I’m finding that I’m not really included anywhere now. Exclusion has become the rule. I am a ghost in my own life.

And just like when stranded on the side of the road, I have no escape route. My body seems to have more than a simple flat tire, not that I would know how to change that myself anyway, but someone would, eventually. Nope. I have one of those issues, that when you lift the hood, multiple people stare and scratch their heads, going “hmm, not even sure how she made it this far, what a mess in here”.

And then I think, ok, what if I do find someone that figures it all out and can actually fix me? How am I supposed to get back into traffic? After all this time just drive back in without getting run over? I think not. but that seems lightyears away if not impossible, so whatever…

OK, enough with this bad highway metaphor. you get it. Just a thought I had.

What I’m trying to say is that I’m completely worn out by all the medical tests these doctors are ordering, and all of the abnormal results that prompt more tests and referrals to more doctors. At first, doctors were saying, I need to accept my new reality, lower my expectations, this is as good as it gets. They were not listening to my symptoms but painting their own conclusions about me. I kept complaining and using different words until I got sent for some tests. I think they were thinking nothing would come of it, but let’s satisfy the crazy lady.

But then wait. She actually has abnormal reflexes in her visual and auditory system? Could this explain the sensory overwhelm she has been describing for years now that has been dismissed as anxiety? YES

Do I have anxiety? yes, not denying that, but this is different, and please give me credit to know if I am anxious or if my nervous system is giving me a similar feeling due to an autonomic response. Well they do now.

Turns out I have ocularmotor issues, visual processing delays, saccadic dysmetria, hyperreactive auditory and visual stimuli with little suppression. I have loads of other cool words I could insert from my test results that I don’t feel like looking up right now. My world is literally overwhelming my nerves. So all of the wacko, wonky CNS stuff, like feeling lightheaded, sweaty, tightness in chest, nauseous – all very similar to anxiety – can be brought on by ordinary sounds, smells and sights. More intensity means I have more intense reactions, similar to motion sickness. Its like I have sensory input sickness. My vestibular system is overloaded and confused.

Okay. So I’ve had balance issues for nearly 30 years, maybe all of it wasn’t from the spinal cord injury, but made worse from it? And the migraines are a product of a worn out nervous system trying to make sense of the world. See isn’t this fun? I don’t blame those doctors for pushing me aside, what a freaking mess.

And I know this is not written clearly. Apparently thats something I have also lost, the ability to think, recall, and use thoughts in a proper sequence. I’ve been avoiding writing much due to all my issues and frustrations and irritating red underlines on the page to correct. But maybe I shouldn’t. Maybe I should trust that whoever reads this can put it back in the proper order and you all just may enjoy a daily puzzle, who knows. See I’m still snarky so I know I’m still here hidden in this mess of confused neurons.

Anyhow I met a new vestibular rehab therapist today that has dared to give me some hope. You all know how dangerous that can be, to be given hope once you have gotten to a stage of acceptance, only to have it yanked away again. I’m so afraid to walk that line, and yet I must if I am going to keep trying to battle this and get well, or as well as possible. I could really use some support so I’m not sitting on the side of the highway all alone.

Owning It – A step past acceptance

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I always say when you are open, the universe speaks to you. I am hearing one message loud and clear being repeated from multiple sources. It’s starting to sink in and take hold and I hope I can explain this clearly.

I’ve always had something to struggle against. An illness, a disease, a deformity, a disorder.  I’ve always accepted each one as it is diagnosed as a new part of me to struggle with, fight with – and HIDE!! I was taught to be normal, above all costs. Never let anyone know you are suffering. Never let anyone know you are different. Never let anyone know you need help. It is shameful, horrible, disgusting. It is whining, weak, pitiful. No one will want to listen or be in the room with you. No one will accept you with all of your flaws. You must only present a perfect version of yourself, like an edited photograph representing you instead of your real you.

No one can see you in a wheelchair, a brace, a bandage, a pimple, a scar, if you’ve gained a pound, if your nose is red from a cold. No one can see your pain or fear or confusion.

I followed those rules most of life, somehow I actually did. I hid my disabilities like a good girl. I know I shared my difficulty with having to use a can a year ago, in public. It took everything in me to show people I needed that, something so visibly wrong with me, and of course the comments came, “you’re too young to need a cane…” remember that?

OK, so my doctors are now recommending that I get special tinted lenses in my glasses, and special earplugs. The idea here is that my migraines are caused by overactivity, overexcitability, too much stimulation of neurons and these aids can help reduce sensory input, reducing triggers and sensory overload, meltdown and confusion. Makes sense, I struggle when shopping in bright lights or surrounded in a noisy crowd.

But my first thought was, hell no, I don’t want to look like a freak. What if people notice? What if they ask me about my weirdo glasses? Can I handle that?

I’m working with this one major stuck point still as it runs deeply and is multifaceted, this feeling of being a freak and needing to hide flaws. It is a core belief, reinforced by my entire family, and sadly, by most of my adult relationships as well. People do not often respond positively to people with special needs. But that doesn’t mean I should be afraid to have special needs. I started to accept that I do – but can I own it?

Here’s the difference. And wait for it, it was explained to me by my MIL!!! I was telling her about these lenses, and tentatively expressed my fear of wearing glasses that would make me stand out. The ones I need are likely a deep rusty rose color (and yes I’ve already explored all of the implications that my doctor is literally prescribing rose colored glasses, so, umm, anyway) and would be quite obvious. I asked MIL, what if people ask me, why are your glasses pink? She said “Tell them you like pink. Get some other pink things, a pink hat, flower, bow, necklace, color your hair pink. Own it. If they want to look let them look. If they want to ask, let them ask, Who cares what they think. If these glasses help you feel better…that’s all that matters, you are all that matters, not them. Just own it. Be someone who wears pink. why not”

I actually cried. My mind was blown. I have never heard such a message of acceptance in my entire life. And to come from someone that is closest to my mother figure, well, it has broken something in me. I needed someone’s permission I think, and she gave it to me. I can be weird. I can like pink. I look different. why not. who cares what they think?

Can I do that? Can I stop hiding? Can I own it? Oh my god I don’t know but I know I want to. Can I be the girl that doesn’t care what I look like when I dance in the rain, all alone? Just be her, own that feeling I get when I’m hiking and carry it with me everywhere? How do I start? I just start. I stop hiding.

I say hello world. This is me. I am not apologizing any more.

OH!

I forgot to add the other message I received from the universe. I was listening to music this morning, and put on Colbie Caillat to see what I got in the youtube mix. She always makes me happy. First song that came on was “Try” and I wasn’t writing yet, so I watched the video, with all these beautiful, unique women, and woah did this message hit me hard. Tears were unstoppable. This is exactly what I needed to hear coming from one of my favorite singers too. So simple – yet beyond powerful. I think I’ve heard the song before, but never absorbed it like today.

You don’t have to try so hard. to belong. Do they like you? you don’t have to bend until you break. you just have to get up. look in the mirror, at yourself. Do you like you? I like You.

Here’s the entire song:

Put your make-up on
Get your nails done
Curl your hair
Run the extra mile
Keep it slim so they like you, do they like you?

Get your sexy on
Don’t be shy, girl
Take it off
This is what you want, to belong, so they like you
Do you like you?

You don’t have to try so hard
You don’t have to, give it all away
You just have to get up, get up, get up, get up
You don’t have to change a single thing

You don’t have to try, try, try, try
You don’t have to try, try, try, try
You don’t have to try, try, try, try
You don’t have to try
You don’t have to try

Mm, mm

Get your shopping on, at the mall, max your credit cards
You don’t have to choose, buy it all, so they like you
Do they like you?

Wait a second,
Why, should you care, what they think of you
When you’re all alone, by yourself, do you like you?
Do you like you?

You don’t have to try so hard
You don’t have to, give it all away
You just have to get up, get up, get up, get up
You don’t have to change a single thing

You don’t have to try so hard
You don’t have to bend until you break
You just have to get up, get up, get up, get up
You don’t have to change a single thing

You don’t have to try, try, try, try
You don’t have to try, try, try, try
You don’t have to try, try, try, try
You don’t have to try

You don’t have to try, try, try, try
You don’t have to try, try, try, try
You don’t have to try, try, try, try
You don’t have to try
You don’t have to try

Mm, mm

You don’t have to try so hard
You don’t have to, give it all away
You just have to get up, get up, get up, get up
You don’t have to change a single thing

You don’t have to try, try, try, try
You don’t have to try, try, try, try
You don’t have to try
You don’t have to try

Take your make-up off
Let your hair down
Take a breath
Look into the mirror, at yourself
Don’t you like you?
‘Cause I like you

What am I Worth..to an Employer?

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Finding a job is pretty darn high up there on the life stressors chart for anyone. So many decisions, so much time, effort. Penetrating questions. Potential adjustments. Fears. Hopes. Disappointments. The waiting. The unknown. What am I worth?

My heart rate is up just typing that.

So think about my situation for a moment. I had a certain skill set, loads of high tech and higher math knowledge, computer software, great vocabulary, fast typing, persuasive speaking and writing, super confident.

And now…I look at my resume and it feels like someone else. I have so many holes in my memory, no one would believe I used to code webpages or teach calculus or write poetry. My typing has gone from about 80 wpm to 35 wpm with so many errors, the screen is all red underlines. Words that used to flow freely get stuck and I sit and stare, waiting for a thought to form. I am relearning math, but I doubt I will have time to get back to a calculus level in my lifetime as I’m relearning basic facts. Here and there I remember things, like how a tangent works, or what an exponent does, but then I start to work it out and it goes blank again. My daughter is in  high school algebra right now, I had been looking forward to coaching her, and it all looks so familiar, but I have no idea how to solve any of it. I tell her, you have to do something with regrouping….and I get excited thinking I might recall, but no, I can’t get any further.

So. How do you get back to work, when you can’t do what you used to do? How do you explain that you can’t do what you used to do and not sound incompetent or insane?

This process has not been going well. I’ve been applying for low level part time jobs that have nothing to do with my work history. I either don’t get called at all, or when they talk to me, they say I am overqualified, they are afraid I will get bored, or just give me that certain doubtful look, or have that tone in their voice and I know it is over.

My doctor recommended I contact my state workers with disabilities board. I guess I knew there was one, because they helped my brother, but I never considered myself disabled…just never thought of it. So after the shock wore off, I looked online, and saw they had exactly the services I need. I applied online, they called me the next day, set up an intake appointment that same week. Wow!

So I met with them last week. I was so incredibly nervous. I had to gather up my medical records to prove my eligibility, that is phase one. I worked through shame, fear, felt like I was whining, complaining, oh poor me-ing. Until I got there. It was literally a life changing day.

I’m sitting in the waiting room and my assigned case worker calls my name – she is completely blind. She has a service dog leading her, and me, to a small conference room. We sit down, and I’m instantly much more fascinated by her than I care about me anymore. She is confident and professional. She has a stack of folders labeled with braille, and braille typewriter thingy I’ve never seen before to take notes as I talk. She hands me papers that she can’t see but describes them to me in detail. It blows my mind as she helps me to fill them out.

She asks about the forms and records I brought, and asked if I would give her a summary, since she could not scan through them. As I start describing my lengthy and complicated neurological issues, I could sense compassion in her, as I have for her. Mutual respect was huge in this room – like we were both thinking “Damn, I don’t want to be her…” I could tell she wanted to see me when I talked about my scoliosis, because you might think I am visibly deformed, but luckily my curves are balanced and my surgeons are talented so no one would ever know by simply looking at me. You can see my limp when I walk though. So I’m thinking she was not always blind, the way she looked directly towards things and me.

We had a few of these surreal shared moments. I liked her very much. She explained the program and seemed excited to have me there, that she can actually help me. She said so many come through and disappear, don’t show up again, aren’t willing to work hard, don’t answer phone calls. She said she can tell that I work hard from my past jobs, and that I keep my doctor appointments in the city. I never thought of that as a major accomplishment…but I see her point. That takes planning and commitment, shows responsibility to drive 2 hours away for my neurologists and surgeons.

So, the next step is I wait for them to confirm my medical eligibility, then they will set up vocational skill assessment. I’m guessing typing, reading, math, but I’m not sure what all is involved there. Then they use that to see if I nee training, find some job leads, help me re-write a resume, practice mock interviews so I don’t stumble with those tough questions. They can advocate for me, or work entirely behind the scenes, meaning my employer can know I’m using disabled services or not, we will decide which way is best in the career plan we develop. They will stay with me once I’m hired, make sure the transition is smooth. Then I get to use them again, say if I want progress in my career or my health improves, I’m not stuck. They want me to be challenged and working meaningfully. Wow.

So my nerves are gone and I’m only excited now. Someone on my side to help me navigate these tricky steps to getting back on my feet. I am so grateful.

How to Socialize an Adult

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I’d go out much more often if the world was full of bubbles. Something to think about.

Okay but the world isn’t full of bubbles. And I’m not 4, so its not socially acceptable for me to blow bubbles everywhere I go. Socially acceptable – Yuck – I hate that.

See, I was not properly socialized when I was little. I was not exactly raised by wolves, no, I think wolves would have done a better job.

So what is an adult to do, when she finds herself in her forties, wow, yes, forties now, and completely alone? I have never learned to make friends, not really, not the kind that lasts or that will be helpful and supportive. I have only learned to blend in, hang out, be a part of a group. When I start actually getting to know people, or letting them know me…stuff goes all wonkers.

So a quick recap, thanks to neuropsych dude, I know I have never felt safe, and I have these rules and alarm bells for how I operate to keep myself safe. Even though I may not need to be so strict now, these rules and bells are hard wired, they formed in my brain to help me grow up. Am I doomed to always be alone because of them?

I have been taking first steps at genuine friendships. Face to face was way to scary, so I have been using a variety of online friendship apps. I find that behind the safety of my phone or computer, and the delay of texting, I can calm down those alarm bells and proceed further with people than I can in real life. In real life, I shut down or run away, not great friend making skills.

I’ve been using friendship apps that have a no flirting, no dating policy. I’m actually finding genuine people this way, instead of the multitude of creeps I was finding online at the other sites, even when I would say I’m not interested, BAM an unsavory pic sent to my text. No thanks, goodbye.

I’m starting to believe there are good people out there, but so far I have not found any near enough to me to meet for coffee or whatever. But I am patient, and building skills. And more important, people are reaching out to me with kindness, showering me with it. They check in on me, encourage me, and also get me to do some tough thinking to help me get unstuck. One is helping me to find my spark, my words, get me to start writing and painting again. They are becoming…true friends? wow.

I am so grateful.

Maybe I can do this

Internal Conflicts

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I am not at peace. Nothing in me is at peace. I sense the battle, I feel like I am fighting, and its because I am. Even within myself, my own systems, my own body parts are at odds, creating pain and conflict.

I could give so many examples, literal and more abstract. The point I’m trying to make is a concrete one today though, as I discover yet another physical issue, a malfunction, a deformity of my bones. I can poke fun a bit today, because yesterday I cried. I’m done crying so I am dealing with this the only way I know how.

So my big toe has been hurting. Not a major concern to me, it has hurt most of my life, but much more so recently. It aches after I walk. I assumed it was due to a few factors: a horse stepped on it when I was about 7 and I received no medical care, it is on my weaker leg with drop foot, I stomp and stub and don’t walk properly on that foot for most of my life. I figured it was hurting more now perhaps because I am walking better? Using my toe more? hmm. Or do I have more feeling in that foot now since the recent back surgery? Was it always hurting this much? Not sure.

What I do know is that it never used to look like a zombie toe. Yep. Now after I walk, especially on uneven ground like gravel or hills, my toes fills with blood, like internal bruises. Black plague? Despite appearances I don’t think so…so I went for an xray and my doctor says nothing is broken, maybe I sprained it, and I should get new shoes. Umm okay.

6 weeks and a new pair of shoes later, I still have zombie toe. I saw a podiatrist yesterday. After more xrays, he is confused, and comes in the room with my favorite phrase. Wait for it, you know what’s coming, right?

“I’ve never seen this before”

Sigh

Okay what special lottery did I win this time? Apparently my toe joint did not grow correctly.  It has been this way for most of my life. Oh! The joint is too small, missing the cup, bulbous portion to support and lock, to provide balance. It is up too high and needs to travel too far to reach the ground, my foot needs to twist and flex to support me. My toe is hyperflexing at that joint, busting blood vessels. Not a birth defect but a growth defect, possibly related to scoliosis, or possibly that horse injured the growth plate, but it doesn’t look like it was ever injured or broken, just never grew properly. Apparently, limping on it for 28 years has concealed this issue, actually done me a favor but now that I’m putting all of my weight and attempting to correct my gait to use a proper heel toe roll step instead of the drag slap I was using, it is stressing my malformed toe.

Seriously

So I still can’t walk correctly or get up to jogging without breaking my toe off. Okay. Sure.

What the FUCK?? OKay, I am trying to keep my cool, but why does the universe not want me to walk or run?? Why is this so damn hard? I want to kick this stupid life in the face but it would hurt my stupid deformed toes so I won’t.

So now what? Well they sent me home with a make shift support brace made out of tape, spray glued onto my foot, that’s supposed to last several days if I keep it dry. I can retape it then myself maybe. Then they made molds of my feet and are making me custom orthotics to support my freaky feet. I’ll get those in a few weeks.

They said it will be very painful, because we need to move the bones, like braces on teeth, it will be a slow process. Part support and part correction from years of walking incorrectly. Tight ligaments, weak muscles, loose joints, a real mess. He added a new rx to my PT regimen for my foot for stretching and strengthening to help with gait. I may never walk without a limp. Yeah okay, just what I wanted to hear.

This tape already affects how I walk, since I can’t flex my foot, it is hurting my knee and hip to compensate. I feel all off balance, and its just some tape. Not looking forward to stiff orthotics in my shoes. That’s just me complaining, sorry. I’ll do it, and I’ll be okay. But I guess I was using my foot to make up for the lack of flexibility, now that my spine is fused to my pelvis, I am walking totally different than prior to this surgery. I feel like an android with new programming, just working out the kinks to walking 4.2, please wait.

I may have always been destined to have a limp, even without the neurological issues that arose from the back surgery. The shape of my foot is so strange. My mind is blown.

I struggled to find shoes that fit me comfortably as a kid, even before the surgery, and I was delayed in many motor skills, like I was 10 before I could ride a bike without training wheels. I was ridiculed for this, never taken to a doctor to see why.

I want to hate my body each time I get more news of my freakiness. I hold back tears until I reach my car in the parking lot each time a doctor says, woah that’s odd, and gets all confused about how to proceed. I want to start over with healthy bones and nerves. I imagine for moments what life must be like for people that just get up and walk with no effort, but that isn’t helpful. I can’t fight this. I can’t hate it, that would be hating me, and I know that gets me nowhere and I’m tired of being nowhere.

No, I need to accept this too, work on compassionately comforting my pain, coming up with a treatment plan to correct or at least slow the progress from getting worse. I need to protect myself. Those quick thoughts that yes, my parents should have done this for me 30 years ago pass over me, overwhelm me with anger and sadness, but then I let it out and let it go. That’s over. Its up to me now. I’m here and ready to do what needs to be done.

I have a feeling all of my bones are formed wrong if they xrayed everything and I don’t just have scoliosis but some other bone/nerve disease. I know my shoulders have similar issues like my toes. I’d bet you anything my hip, knee and finger pain would find anomalies if we investigated. I mean I use a weirdo mouse for my thumb pain and have braces periodically for my ankle, knee, elbow….hmmm. I’m trying to find the connection, asthma, migraines, scoliosis, joint problems, balance issues, muscle cramps, weakness and twitches, leg movement during sleep, sensory issues, feeling cold, fatigue, sleep issues. I found CMT which has some similarities but my feet don’t look like that, not yet anyway. I read some people did not get diagnosed until age 60-70 because it progressed slowly their whole lives. I think I may mention it to my neurologist anyway, get them thinking more holistically if I can. I know this is all connected somehow. I feel so certain my mom did not have fibromyalgia but whatever this mystery condition is, and that I have it, and so do my kids. Maybe genetic testing can be done? I’ll have to ask. I feel so certain that if I didn’t have the trauma component I would already be diagnosed. But I can’t stay on that thought either. Just keep pushing onward.

Trauma is in the eye of the beholder

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What do people really think about you? What are you showing them? Well what they think depends on how they frame it in their minds anyway. So much subjectivity, so much interpretation and assumption.

I’ve become increasingly interested in my doctors varying opinions of my mood lately and how it applies to my future. As most of you know, as soon as you have “Psych” history on your record, it can be difficult to get medical attention without doctors telling you how you feel and that somehow trauma and depression are actually causing the issues, not anything they can solve, and you end up with another referral for therapy.

If you have an “extensive Psych” history like mine, it is almost impossible.

I started comparing notes.

My back surgeon notes that I am pleasant and upbeat, cheerful, even 3 weeks post surgery when my pain level was still quite high.

But the neuropsych team inote, flat affect, appears to be severely depressed, speaking noticeably slowly, moved to tears.

Let’s see what is the difference here? It’s not just that the psych team is looking for it, I’m not saying that, I am behaving differently in these appointments. Hmmm, I wonder why? Seriously. That was snarky if you couldn’t tell. OK let me spell it out by giving you a glimpse of the conversations.

When I am talking with my back surgeon, I am grateful, he has changed my life, reduced my pain, restored strength and balance to my weak leg. He see me as strong, able, resilient, and able to do whatever I want to do. He knows nothing about my traumatic past and never has asked about it. He expects me to heal, because nerves, bones and muscles heal at an expected rate.

When I am talking with the psych team, they continually poke and prod about the relationship with my parents and brothers and husband. They force me to relive and retell some of the worst moments of my life. Usually I am meeting someone new, forced to tell my story to someone I do not fully trust for them to make another assessment of my condition. My flat affect is me trying to remain calm and choose my words carefully, knowing I am being judged. My tears are me, reacting to pain in the moment, recalling my sorrow.

But I don’t live there in that sorrow. Each doctor is only seeing a snapshot of me, a moment of me, not all of me, not how I function each day all day, not my life. I wonder how many people can retell their worst fears and memories without appearing traumatized. Even if you weren’t abused, I bet if you spent 3 hours describing every pet that died, how you miss your grandparents, maybe you were bullied, your boyfriend broke your heart in high school, your friend died in a car crash or overdose, your parents split up – whatever – life is full of heartache and tragic moments that we don’t call abuse. I bet if you made a list of them and described them out loud, that any “normal” person would appear depressed and traumatized and dysfunctional.

I don’t think its me that needs realistic expectations, I think it is the medical community. I almost want to prove my theory by starting over with a new doctor, stating I have a brain injury from purely physical means, caught in a shockwave perhaps and see I still have the same sad “Sorry but we can’t help you, you’ve been through too much to get better at this point in your life” story. I bet I would get sent to rehab and expected to heal if I didn’t have a psych history.

Well I expect more of myself, always have. Yeah, I got knocked down. But I’ve been down before, so what. I am out there jogging you guys. It isn’t beautiful, I mean I won’t win any medals, but I am not using a cane and both feet leave the ground at a pace faster than walking. I know I am healing. I know what I can do. I can do more.

I don’t care about my history, its irrelevant at this point. My brain doesn’t care. I am no longer being traumatized. I am sleeping, eating well, exercising, going to therapy, doing brain training games, pushing towards creative thought – why can’t I expect healing to happen? I don’t have a bunch of faith, but I’ve always believed in resiliency, set a goal, make a path, and eventually you get there.

My therapist thinks my lack of creativity is tied more to grief than brain damage. I’m starting to think she is right. My mom was my constant cheerleader, so supportive of my artwork and writing. I always shared my ideas and progress with her, always created for her, and she poured on the constant praise, sometimes annoyingly so, and almost over the top. I think I depended on that more than I ever knew though. Without her daily comments on my blogs, her multiple emails, I have no one else cheering me on, encouraging me to draw something today, asking what my next project will be, asking me to make something for her. She kept me going. I see this now. So at some point I will have to draw through the tears, and just keep going, until I am drawing for myself and the world, and show her that her years of support were enough to keep me going even after she is gone. I need to feel this pain of missing her and draw anyway. Somehow with my teary eyes and shaky hands I know this is the next step I need to take. An empty page has never been so frightening.

Accept or Fight

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When another doctor tells you that what you want is not possible and you need to accept that and set more realistic goals for yourself, do you do it or do you keep fighting for what you want?

I have seen a team of neurologists and neuropsychologists now.  They are all singing a similar tune. That I am different. That I have to accept that I cannot return to the previous version of me that I recall before the brain injuries. (I’m not sure if I have discussed the extent of my brain injuries here, I haven’t wanted to talk much about it and writing was so difficult before. But I have some serious cognitive dysfunction, memory gaps, processing delays, visual lags and disturbances, sensory overload….it goes on.) That skills like creativity, and certain personality changes, once altered, do not heal and come back, at least not identical to what they once were. I may be able to enhance what I have, but I will never be who I used to be.

I may never be able to do what I used to do.

Every time I think of this as a fleeting thought, the tears return.

Another esteemed doctor told me this again yesterday. They are well educated, at a great hospital, known for their expertise, and my gut trusts them. However, there is also something in me that is screaming they are wrong. Doctors once told me I may never walk again, that my weakened leg would never regain muscle tone. Well look who is out there attempting to jog. So I don’t accept “never” as a final diagnosis. I feel like I’m still in here, just slowed down.

He recommended I either apply for disability or try to work with a vocational counselor, but he doesn’t think I can keep up with the pace and demands of a job. That was harsh, but possibly true. I may be overestimating my stamina at this point because I want to be better.

He said that I am still traumatized, understandably, and that for me, the trauma never stopped. 40 years of trauma. He said that would be enough to break anyone. But add all my medical issues and it was like adding gasoline to a fire. And then on top of that, a stressful marital relationship, he says it was a cascade of events and none of them were good for brain health.

We talked about my social support network, and I said I’m all alone, completely. I have a few online friends and my counselor. We talked about how I isolate myself and why. I told him about how I have low tolerance for people, no matter how much I try, I can’t enjoy being with them, or think they aren’t good people when they make fun of others, are greedy, I catch them lying or cheating, etc. I said I try to turn down my moral standards but I can’t. He said something I never heard before. He said of course you can’t. You have never felt safe in your life. As soon as someone says or does something that makes them have any possibility of being a bad person, you go into self protection mode and either stop talking, leave the room, or hide or whichever other skills you have learned to avoid conflict and being noticed. This is to keep yourself safe. It makes perfect sense and is your core belief stronger than all others. Safety comes first.

My jaw dropped, and I felt angry a bit, kind of embarrassed, and I wanted to say he was wrong, to fight that, but as it sunk in, and so many social interactions spanning 40 years flashed across my mind. Holy crap. He is right.

Here I was thinking I was over my trauma and it didn’t matter any more. That I was an introvert and yeah maybe I was wired differently, or maybe on the aspberger spectrum, or maybe just get annoyed with small talk and petty people. But no. Every social decision ever has come down to safety.

He said the right trauma based psychologist may be able to assist me with that component and he would help me to locate one near me to work with. He said I can’t live the rest of my life alone, or I will continue to deterioriate.

I don’t know. I feel like I’ve tried. I feel like the people that accepted me never accepted the real me and when I do reveal the real me people run for the hills, unable to handle me. So maybe someone can help me find this tightrope skill of balance of how to build a relationship that I feel safe in, connected to the other person in a real way, without overwhelming the other person with my intensity.

I think figuring that out will help me in any job I may come to have in the future, whether I go through the disabled workers board or get one on my own.

I do know that I want to be a part of the world and connected to people, to good genuine people, and I just don’t know how.

I do know I’m not ready to give up and get on disability and never work again. I think I still have something to offer. I’m still smart in some ways, just really slow, and get tired out quickly. I’m hopeful the new migraine meds will start helping with some of that too. I’m hopeful that my family is done adding trauma to my life and I can finally move ahead on my own. My parents are gone, my brothers aren’t speaking to me. The hole hurts, but an empty hole is a dull ache, not like the tortuous pain of constant flaming daggers tossed at you.

It doesn’t matter – Yes it does!

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What you do matters. What you want matters. How you feel matters.

I’m ready to start my list and I figured out why it is so difficult. Remember those stuck points from cognitive processing therapy?  It seems I am still stuck, big time, on a major one.

“It doesn’t matter” or, related but even bigger,”I don’t matter”

Those two thoughts run rampant in my head, causing downward spirals into negative thinking, but even worse, causing numbness, thoughts of worthlessness, causing my protective shields to go up full force and dissociation to engage.

How do I get past this one when it is so huge? I need to build off those sparks I wrote about previously. Those moments when life sneaks through and I do feel something. I must be in here. And then I parent myself. What if my daughter had no desires? What if she thought it didn’t matter what she wanted? What if she thought she didn’t matter?

Okay. Wow. That hurts, unbelievably so. To even imagine for a moment another child having these thoughts is unbearably painful and brings tears to my eyes. But for me – for me it is truth. Okay. So this is how I will get my motivation and feel something, and get my head on straight. I’ll tap into this pain, because this pain is feeling alive. This pain brings me strength as it washes over me and I realize if only for a moment that if my beautiful children matter, then I must have to. I must still matter. It is just so hard to hold onto that. And now I know I matter most because I have taught my children they do matter. They know it in every cell. They will never question it or hear this in their heads. And I matter to Hubby. I now understand his pain when I say I don’t. Wow. Okay.

So if I take that realization, that raw emotion, my inner strength – how do I make a list of what I want? This is still really hard….

http://jackcanfield.com/blog/know-really-want-life-decide-today/

Excerpt:

Stop Settling for “I Don’t Care, I Don’t Know, and It Doesn’t Matter to Me.”

It doesn’t matter how small the decision, to begin reclaiming your right to decide what you want, have a preference. Yours is just as important as anybody else’s so speak up, voice yourself.

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If you are having a hard time figuring out the one thing you want from your life, why not choose thirty? That’s right. On a piece of paper, write down a list of 30 things you want to do, 30 things you want to have, and 30 things you want be before you die. Sometimes when the pressure to find just one thing is removed, the floodgates open and you discover that there are a multitude of things that you want to do with and in your successful life.

Make an “I want” List

For 10-15 minutes have a friend record your answers to the simple question, “What do you want?” During the allotted time, have your friend ask you the question over and over again. If you’re like most people, your list will range from the very material things to matters of the heart and the true revelations of who you are and what you want from your most true self. Go ahead, start asking: What do you want? What do you want? I want! I want!

So I’ve been trying to trick myself. Ask what I want (what I really really want, I’ll tell you what I want, what I really really want (sorry for the Spice Girls intrusion)) so quickly that I get a response before my stuck points engage and all my defenses kick in.

I also saw a comment on that page that helped a bit

“I’ve always had a hard time making “I want” lists, so I started with “I don’t want” instead. It’s amazing to see how much hard work we can put into getting things that we don’t even want. Once we eliminate some of those, it’s much easier to see what we do want!”

Things I don’t want? Hmmm let’s try that:

  1. A sunburn
  2. Trump as president
  3. Fake friends
  4. a meaningless job
  5. insects. except maybe honey bees
  6. cancer for anyone else I know
  7. to feel dead inside
  8. to fear so much
  9. to waste my life
  10. to ruin my kids’ lives
  11. to hurt or bother people
  12. to feel irritated or bored all the time
  13. to go on a cruise
  14. to scuba dive or snorkel
  15. to be alone
  16. Poison Ivy
  17. lose my sight
  18. to gamble my money
  19. noisy, smelly fish tanks in my house
  20. to be homeless

30 is hard, so I’ll stop at 20. That was interesting what popped into my brain. So let’s reverse now. What do I want? (remember – do not think about money or what feels possible, only what you want. If you want it but think “that will never happen”, it still needs to be on the list) The first thing I keep hearing is: travel. Go somewhere. Get out of the house. Get out of the state. See something new. Do something.

  1. Travel somewhere I have never been before that has an amazing natural view, landscape, or rich history – mountains, lakes, caverns, forests, rivers, estates, cabins,  mansions, museums, parks, etc
  2. Experience Gershwin Rhapsody in Blue live with full symphony
  3. Take kids to see Joseph and Amazing Technicolor Dreamcoat
  4. Go to a concert without kids – Zac Brown, 21 Pilots, Jack Johnson, Shaggy, Lumineers, Chili Peppers, Chicago…so many options
  5. Walk on a white sand beach
  6. Take kids to Niagara Falls
  7. Write a novel (finish the one I started ?)
  8. See the stars in the giant telescope at the observatory
  9. Hear a jazz band in New Orleans
  10. Sit on a horse (I’m not allowed to ride…)
  11. Paint a large painting from my heart
  12. Join a club or meetup group (hiking, art, photography, writing, book club, drum circle…)
  13. Explore Machu Picchu
  14. Take canoe trip down a river
  15. Join a performance group – get on stage again
  16. Take a weekend getaway with hubby and no kids
  17. rescue and train dogs, certify service dogs
  18. grow fresh herbs indoors
  19. illustrate a children’s book
  20. write and illustrate a book of poetry
  21. get a tattoo
  22. save the world
  23. research and write about the brain and behavior
  24. cure PTSD
  25. find where I fit in, a job with meaning
  26. make a friend to have a coffee with once in a while
  27. be a good person, feel like a good person, feel like a person
  28. See original art from Picasso, Monet, Van Gogh, Dali, Botticelli, Michelangelo….
  29. Do something that afterwards I say “I can’t believe I just did that!”
  30. Drive a fast motorboat