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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.

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Reality is Sugar Free

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Some of my doctors are better than others at providing a clear view of reality, while others offer the sugar coated version. Some are extremely confident while others provide wiggle and waffle room. I would, sociologically speaking, find it fascinating if it wasn’t my future we were discussing.

I visited one of the top spine rehab neurologists in the country yesterday. I’m glad I didn’t get my hopes up before the visit, but I am also glad I went so this can be settled once and for all.

His phrasing refreshingly sugar free, so I am going to provide a  summary of our discussion here.

Dr: What is it that you think I can help you with today? What brings you here?
Me: Well, I haven’t seen a neurologist for my spine since I was a child, after the initial injury occurred, and based on a recommendation from my physical therapist I wanted an evaluation of current status and what I might expect for healing, and if you could do anything for the other bothersome symptoms I have like stomach issues, bowel/bladder, leg twitches while sleeping, balance trouble, leg weakness, things like that. And I wanted to see if you had any information on how this might effect vestibular function or migraines. (I think I rambled on a bit actually but that was basically what I tried to say)

He gave me a good long stare.

Dr: I have reviewed your charts. I see your xray here (points to screen) and this is not a healthy spine, I would be amazed if you didn’t have balance issues and leg twitches. I saw your vestibular testing, some of that was rediculous to give to you, you have impartial messages going through half your body, of course your brain is confused by that, that doesn’t indicate malfunction, that indicates adaptation to so many years of your central nervous system doing its best.

He then did a standard neuro exam – watched me walk up and down a very long hallway, hit reflex points in knees, feet, ankles, arms with his rubber hammer, had me try to push against his hands in various positions to check strength. He noted the weakness, abnormal reflexes, difference in size and temperature of my legs.

He made that face they always do when they confirm spinal nerve damage. Even when they know, they don’t like to see it. I don’t like it either.

He seems like he wants to dismiss me, and I almost panic, this can’t be it, I waited 4 months to see him, drove 2 hours, and walked 20 min, waited an hour past my time. I was getting my questions answered.

Me: Would it be worthwhile at this point to do any testing to evaluate the nerve health, like EMG or anything else to see how the nerves are functioning now? Either to help with physical therapy or provide information as to the extent of the damage? Give me realistic expectations?

Dr: No. It would not be useful. We use those tests as pass/fail, the numbers are irrelevant for treatment. You have already failed without further testing, you have signs of severe nerve damage. If we tested you, your numbers may come out high or low, but they will come out as abnormal, which we already know, so its a waste of time and money.

Me: Oh. I see. So I was once told that I might expect some healing every 10 years or so, the rate of nerve growth. Is that still true based on recent medicine?

Dr: Only the Good God knows if you may expect some healing, but some doctors do say some stupid things, don’t they? This type of damage is not known to be reversible and at some point it may be time to stop seeing doctors and get on and live your life as you can.

I had to blink that back, totally was not expecting that response.

Me: Okay… but what about some of the other secondary symptoms. I’d really like to sleep better. Anything to help my legs stop moving and twitching? Or to keep my stomach moving along to prevent the heartburn and constipation? Or to give me better sensation to know when it is time to use the bathroom instead of watching the clock?

Dr: We don’t have any magic pills for you. Again, with the damage and curve still left in in your spine I would expect some considerable irritation and twitching. You should ask a GI about those other issues. What I will do for you is contact your vestibular therapist and add some exercises to your plan that will help with balance, make you more confident, and reduce falls. I’m also referring you to a vestibular neurologist. There’s nothing more we can do for your spine. You should know it is very strong now, between the fusion and the hardware, your spine itself is quite safe and protected within its armor. You could still pull a muscle, but there is nothing you could do to hurt your spine, even drive a truck over it. hehehe

He recommended Otago and Tinetti exercises. I looked them up and found that they are mostly for older adults fall prevention. Hmm. Seems like my CNS has aged prematurely. Here is info on Otago and here is some on Tinetti exercises, each has a pdf to download and youtube of course has many videos too.

So I guess I appreciated his attempt to give me confidence and lighten the mood. I believed him, every word. My spine is solid. The damage has not changed much since I was 12, I don’t really expect it to change much, better or worse, so I guess I can accept that. It isn’t something that needs monitored. OK. I am fine with one less doctor, really I am.

And I agree that I don’t need any more painful, expensive tests to prove what we already know. Fine. Move on.

Somewhere I was maybe hoping for some radical new treatment, something cool with stem cells, or a brand new medicine that speeds up nerve transmission, or something that filters out these random twitches, an implant, an electrode…but no such luck. Its ok. I’m ok. I’m glad I asked.

 

Some questions have more than one right answer

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Taking tests in school I never much cared for multiple choice tests that allowed for more than one right answer, as in check all that apply. I always had an uneasy feeling that I was being tricked somehow, or that I was missing something.

I get the feeling my doctors are feeling the same way right now as they sort through my symptoms and test results. It seems that I have more than one reason for some of my symptoms, and they could be working together in some cases. Don’t worry, I’ll explain.

So let’s narrow this down to one issue I have right now out of the dozens. We are actively working on vestibular dysfunction. The vestibular system is a complex combination of eyes, ears and central nervous nervous. I have several abnormal symptoms, but I want to focus on just one to show how difficult this process is. I have trouble standing on uneven surfaces. By trouble, I mean I get disoriented, a dizzy, lightheaded feeling comes over me, my vision dims, my chest tightens and it gets difficult to breathe, my knees buckle and sway, my leg muscles spasm and tighten, I get nauseous…depending on what it is I fall over, nearly pass out, or need help getting off the surface. Examples are squishy snow, mud and sand. Memory foam. It takes forever to find shoes without memory foam now, but it is absolutely evil. Basically any type of foam. They have a blue bit of foam they keep pulling out at the doctors or physical therapy that I now refer to as the blue bit of doom. It looks like this.71-ZQEqun2L._SL1351_.jpg

Seems innocent enough. But when I stand on that, I completely malfunction. Okay, the first time it was a complete shock to everyone and I did almost fall and we all went “what the heck was that?” But now they pull it out, and I say I cant stand on that, they give me a bar to hold onto and a couple of spotters and allow me to ease my weight onto it.

So it shows a problem with my nerves, that part is clear. But where? The physical therapist was explaining to me that my legs don’t seem to be getting clear signals back to my brain. When we encounter squishy surfaces it engages our balance system and our brain has to make all  these tiny corrections of flex and relax. It seemed like the “relax” portion of the messages were not coming back, so my legs would get tighter and tighter only, never correcting for this position, completely lost and confused.

So I’ve been mentioning this to several different doctors now and with the new data, it may not be all from my lumbar spinal cord injury, but a processing delay in my brain as well. Like all these confused signals jam up my brain and it can’t keep up like it used to. This is my current understanding anyway.

What do I do with that? Meet more doctors of course. I see a spine rehab specialist tomorrow to see if he can help sort out which of this stuff is coming from the spine and which is coming from the brain and then maybe we can make a plan after that. I’m extremely anxious but also a bit eager to meet this new doc tomorrow. He is basically the guy I should have met nearly 30 years after my first back surgery went wrong and my parents didn’t let me have aftercare. I’m hopeful he may have some tips or meds for me to help with all the issues that come along with a spinal injury at waist level: bowel, bladder, digestion, twitching legs, legs moving in sleep, muscle spasms, muscle weakness, drop foot, knee pain…. and now how it has affected my central nervous system, chronic sleep issues, migraines.

I’m very curious if he has another piece of this puzzle, and maybe some advice to make my life slightly more comfortable. It’s going to be difficult and embarrassing to discuss some of these private issues, but I feel I’m up to it. I have my notecard with a checklist so I don’t forget anything. I takes months to get in and see a doctor like this, better be prepared for your 10 minutes with him. I’m only half joking. I’m sure I will be assessed by a PA or fellow or student thoroughly and then the doctor will try to dismiss me, and it will be up to me to make my case both interesting and valid. I’m also being realistic. I understand I have had this injury since I was 12. I am not asking for a cure and I know it isn’t likely that they can improve the conditions of the nerves themselves at this point. But I want to hear him tell me that AFTER he has done some testing and really considered my situation. Which I know means hours of poking and prodding, likely some nerve conduction tests which are not pleasant at all. And hopefully some other tests or procedures that I don’t even know exist that is brand new and high tech and showing promise with incomplete injuries like mine. I’m just so tired of them giving up on me before even starting, so please new doctor, please be open minded.

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.

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.