Tag Archive | PTSD

Hiding and crying

I can’t look at him. See his pain. He is crushed. My 8 yr old has a birthday party today. We are not good at social stuff and don’t know any parents in town. He sent invitations out in class and no one rsvp’d yes or no, so I assumed there would be some yesses that just show up.

Nope.

We are sitting here with pizza, cake, balloons, streamers, an empty house, and a devastated kid staring out the window in case someone shows up.

I don’t know what we are doing wrong. I don’t know how to fit into this small town if they never let me.

I feel like this is all my fault and I have failed him. He is supposed to be laughing and playing games. Not feeling like a loser. I don’t know how to fix this.

So I come up to my room, it is unbearable to watch him any more. I check my email and get a reminder from the ecard service I always used for my mom’s birthday. Her birthday is tomorrow.

Now I miss her and feel like I screwed that up too. I can never tell her happy birthday ever again. She’s just gone.

I don’t know what to do, except cry. I hope hubby doesn’t need me, because this is not stopping any time soon.

I’m sorry kiddo.

I’m sorry mom.

I love you both and I do my best. Sometimes it isn’t good enough.

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Surgery story, part 2

I awoke in a recovery room, although awoke is not quite the correct term to describe my mental state. I was aware of people talking and noises everywhere. I could only open my eyes for a few seconds at a time, everything I saw was blurry and confusing anyway, so it was alright that my eyelids were too heavy to keep open and try to focus.

Next I was aware of my mouth feeling wrong, a queasy spacy feeling, and a feeling like I was surrounded by people talking all at once and no one made any sense. Several people were touching me and saying my name. I think. Or it was the same nurse or doctor walking around my bed quickly, faster than my brain could process. I can’t be sure.

Someone asked me my name and birthday and if I knew where I was, the year, etc. Identification and also mental status questions. I tried to answer but my mouth felt so weird (whats wrong with my mouth ?) and I could only whisper. I knew I had surgery and checked my face with my hand. Nope, no tube in my mouth, but my lips and cheeks felt odd. Or did my fingers feel odd. As I was trying to decide, someone wiped my mouth with what felt like a wet sponge. It helped a little but I could barely feel it. So weird. Why couldn’t I feel it? I tried asking about the tube, is this normal not to feel, but couldn’t get the words out.

A woman grabbed my hands and asked me to squeeze. I could barely do it, my arms were so heavy, like my eyelids, but I also noticed it was hard to feel her hands. Or feel my hands. I wasn’t sure which. She moved to my feet and told me to push against her hands. She said both feet sweetie. Huh? I was. I thought I was. Except I couldn’t feel her touching my right foot. I opened my eyes enough to see her holding both my feet. She said to the woman next to her “did she come out of the OR like this or is this new? Does the Dr know? This is severe neural deficit on the right and I don’t see it noted, I think it’s just happened now”

So I may have had a flashback here, remembering waking up from surgery paralyzed…but I’m not sure. I was so sleepy and sick, I’m truly not sure.

Then the nausea, oh man, the nausea hit me full force. I tried saying I was sick, but made no sound anyone could hear. I started waving my arms, but still no one. Then I started dry heaving, noisily. Gross, I know. My stomach was empty, no eating 12 hours prior to surgery, a 10 hr surgery, plus however long til now…I was empty. But my stomach was still trying. Each retch was louder than the next and growing more violent. I screamed in pain in between each retch as it pulled on my incisions, along my back and abdomen. Tears formed and flowed freely now.

This got some attention. Someone handed me a little cardboard bucket just in time as my stomach found something somehow to bring up. Someone else gave me an injection of zofran, and put a scopalomine patch on my ear.

I suddenly dropped the bucket, unable to hold it. I felt my entire arm go limp, along with my right leg curling up. Oh crap! Hemiplegic migraine! Or a stroke…and I didn’t want to tell them it was a migraine if it was a stroke since that was possible after such extensive surgery.

Someone started neuroassessment on me again and if she didn’t say it I clearly heard her think oh f*ck. When she asked me to push against her hand, push, push, PUSH!!! I can’t. She knows I can’t. My entire right side is limp and droopy, useless as a noodle, numb too.

I’m trying to say “hemiplegic migraine – need magnesium” but aphasia and my numb mouth and sore throat are making it sound like this.

Hem, hem, hem, pleeeee, Kik, mikchal, ammmmm

Mags, mags, mags, mags, ummm

OK so I actually laugh to myself here when one nurse gets the other to put her head by my mouth and they are both a bit panicked and not hiding it at all, and I think this must be what Lassie felt like. What’s that? Timmy needs magnesium? Good girl.

With me repeating and them checking my record, I heard them say OH, could she be saying hemiplegic migraine? I see that here. Can a migraine cause this? I don’t know…I never heard of hemiplegic…

Honey, are you having a migraine do you think?

I nodded yes. And closed my eyes.

Do you need magnesium treatment?

I nodded yes again. Someone patted my left hand twice, reassuringly.

They called someone and started me on 2 grams of magnesium. About an hour, I think, later the hemiplegia was getting better, but I was still retching and moaning in pain. I was trying to recall the anti nausea med I usually get in my migraine infusions when an angel read my mind, or my chart, and said Dr ordered compazine for you since zofran and patch aren’t working. That was it! Hurray! I told her “oh good, i usually get that in migraine infusions”. Wait, did i speak out loud ? Yes she understood me. The trouble speaking before was all due to the migraine. My mouth still felt weird inside like it was swollen and full of cotton balls. And my sore throat only let me whisper. But at least my brain let me form words. The magnesium must already be working. Another neuroassesment proved this to be true. I was regaining strength in my right arm and leg. Everyone looked so relieved, not a stroke then, and not a spinal cord injury…phew ! I had never had an infusion right at onset before to see how quickly it could stop a migraine in its tracks. I’m usually pretty bad off before I get one so this was awesome, I was like “take that stupid migraine!”

Relief was nearly instant from the compazine. My stomach settled and with all the magnesium, anesthetics, pain meds, I slept soundly for the next hour or so.

Next thing I knew someone was touching my arm and saying “what is this? What in the world? What did they do to you, look at that bruising. That will have to come out before she can be moved. But what is it?”

I tried to open my eyes and saw a woman , a super blurry woman, holding my left arm. My eyes kept closing, too much effort. I heard another woman say she looked on my chart and it’s a Rick. They paged someone but said it would be a while for the special team to arrive so we should notify the family now then to see me while we wait.

My family ? Soon I heard hubby’s voice. Ah such a good voice. I tried to see him but I still couldn’t focus on anything. And then I heard, “sir, sir, are you alright? You better have a seat. Someone get us some apple juice! ”

I heard him say yes, he was a bit woozy and giggle nervously. (Apparently I looked so gorgeous I made him swoon)

Once he was stable hubby came up to hold my hand. I still couldn’t see him. I also heard my FIL now. I tried telling hubby about the migraine and asked if everything was OK otherwise, but I don’t really remember much of this. He says I kept falling back asleep and seemed anxious and talking fast. Seems odd to me when I felt like everything was so slow. He also told me later that others in this shared recovery room were sitting up and laughing with family members, not so sick, bruised, swollen, glazed eyed, and generally beaten up like me. But I’m guessing not everyone had just had 10 hours in OR, a 7 inch incision on the abdomen, a 14 inch incision on the back, 2 disc areas replaced with donor bone wedges, fusion across L4 to Ilium, new metal screws and instruments, a slight revision around T12 to decompress the nerve root, a foraminony, laminectomy, and a few other scary spinal words I don’t recall at this moment. I’m actually not entirely sure what all he did to me, I’ll find out in my follow-up next week.

Anyways I was sleeping peacefully until a new voice arrived, another woman, and she just kept saying “sorry”. ” so sorry honey, I have to do this, I know you’re finally resting. Sorry it’s going to be uncomfortable, but this Rick has to come out before we can move you. Just hold real still, OK, please? So sorry” (I later found out it was RIC,
Not Rick, Rapid Infusion Catheter for the nifty cell saver machine that returned my own red blood cells to me)

If I wasn’t so dopey I would have been freaked out. She started tugging on my arm and I felt something moving in my chest. She kept pressing and pulling, pressing and pulling. I looked over once and saw this long white tube dangling out of me and she was still pulling. Finally it was out and she started saying sorry again. “So sorry, but I have to keep your arm up and press here tight for about 20 minutes to make sure you don’t have any bleeds. I’ll try not to hurt but I do have to press hard.”

She held up my arm and it did hurt, but not much, and I kept falling asleep I was so over medicated. Eventually she was satisfied, wrapped my arm in gauze and then a rubber pressure cuff, which I didn’t know until the next day.

At some point they declared me stable enough to go upstairs to my room. I don’t remember the journey at all. I just know I was woken up later in a different, quieter room.

Surgery story, part 1

Not for the squeamish, don’t read if medical details bother you.

We left at 4:30 am to start driving to the hospital. A two hour drive. I wasn’t too nervous though, this felt right, like something I needed to do. Like my mom’s memorial service yesterday…but that’s a different story, though of course still fresh on my mind.

We make it to the hospital and it feels like a dream or a movie, not my life. Hubby accompanies me to the check-in counter and they hand him a pager and explain the codes, and how to get updates on my status from it and the many monitors in the area. It was like an odd airport, and I was the airplane being prepared for takeoff.

I was taken back to a little room, given a gown, asked for a urine sample (in case I got pregnant since the last one…ummm no) and then an IV was started. Right away I knew she missed, but she wanted to give it a moment. We watched the bruising grow, the pain get worse, and I was worried this wouldn’t be good enough for surgery. When I told the nurse she seemed annoyed or afraid or mad at herself for failing – all things I didn’t want to deal with, I only wanted a proper IV, no fault or blame. She got a different nurse to try my other arm. She went into the top of my hand, which hurt, and ballooned a little but she insisted it was good. OK.

I signed multiple consent forms, answered ridiculous questions a million times. Finally my surgeon appears at 8:00 am and says we will start at 8:30. Hmmm, I think, why did I need to be here 2 hours early to pee and get an IV?  And I thought of the airport again, this must really be an airport, and I laughed to myself.

Finally transport came to wheel my bed away to OR. It was a long, wild ride over ramps, through buzzy locked double doors, past clusters of doctors talking and blocking the hallway reluctant to step aside, and finally I was tucked into bed parking space outside my OR doors. And left there alone. A long time. A really long time.

At last, after I counted all the tiles, tried some grounding games like listing types of flowers, candies, dogs, etc several hatted and masked people arrived to wheel me in.

This OR was straight from sci fi. I’d had c-sections with general anesthesia, but those rooms were junky and barren compared to this. I think I actually said something clever like “woah” when I first saw it all. One wall was an enormous display screen, like half a movie screen with my CT scans and x-rays on it, all moving as my surgeon prepared himself and his team. I’ve previously only seen this many computers at NASA, my airport thoughts quickly turned space station. So many lights, tools, tubes, hoses, trays…everything was either sterile white, stainless steel, or emerald green.

Now all of this could be worrisome, but I found it comforting. I was surrounded by a team of about a dozen brilliant people gathered just for me by my surgeon. Everyone was calm but excited, like I am before a big performance. I’m an interesting case, a challenge, and you could feel the buzz in the air as everyone prepared for me.

Two nurses got my attention and asked me to scootch over to the little operating table. I was surprised to find it had a comfy cushion on it for my back, a circular pillow for my neck. The table was super narrow, I barely fit on it, on my arms would dangle off. They attached side bars for my arms to rest on and strapped them there with soft Velcro.

Next my surgeon came over and gave me the warmest smile, said we were ready to start and everyone here was going to take very good care of me. Then the anesthetist came over and said he gave me something to relax and …. I don’t recall the end of his sentence. Everything got warm and slow and blurry and then my next memory is in the recovery room.

Mom’s Last Words

Cancer has taken my mom. So swiftly, it devoured her in only weeks, leaving all of us wondering what the hell has just happened.

Mom is gone. I’m taking solace that she is no longer suffering and pray she has found peace at last from the tortured life she had here. She wanted to go. She was ready.

I did find the courage to call her last week, and I’m so thankful that I did, not knowing her time was almost up. I still couldn’t dial the phone or stop the tears, but I knew it was time to do it anyway, so I had Hubby dial the phone, say hello to mom and then hand me the phone.

It seemed mom was waiting for my call. She had so much to say and really didn’t allow me to speak. I kept trying to get my turn but she talked the entire time nonstop. Ha. I guess nothing ever changes. This call was for her peace of mind not mine. She did say some kind, loving words, and some disturbing ones of course. I’m going to try to recall and document the conversation here, both for my ongoing story, and as a keepsake as her last words to me.

Mom:Hows my girl? My good good girl. I’m so happy you called, I was hoping to hear from you. Do you have any questions? I’m not sure what you already know and I don’t want to stress you out too badly.

Me:1st Brother has filled me in. I don’t really have any questions I just wanted to talk to you. I’m having a really hard time with all of this. (I barely got these words out, choking on tears)

Mom:Oh ok good he filled you in. It is ok to cry a little but don’t cry a lot. It is natural to cry for someone you care about but I need you to stop at some point. I need you to be ok. Death happens to everyone, everyone has to die some time and this is just my time. It might be days and it might be months now, we don’t know. I’ve got everything taken care of, planning to cremated with no funeral or viewing (I started crying harder at that – I already knew this but hearing it from her was awful. she had no emotion in her voice at all) Do you think that’s alright?

Me:I said I thought it was fine and really whatever she wanted.

Mom:I spoke to the priest and he said this was fine that many people do it this way. He performed some of the last rites and forgave my sins so I am ready any time. I’m sorry I don’t have any money or nice things to leave any of my kids, and I’m not preparing a will for the items I do have. If there is anything you do want I’m asking you work it out with your brothers without fighting or drama. I put together some photo albums with pictures of you when you were little but you don’t have to take them if you don’t want them.And you don’t need to come to the funeral mass, I need you to keep getting better and taking care of yourself and your little family. You’ve always been such a good girl, a good, good, good girl and you deserve to be happy. We’re asking that no one sends cut flowers since there won’t be a funeral or grave and we won’t have anywhere to put them. If you feel I need flowers because you know I always loved them please get a potted flower bush for me that could be planted in a garden.

You know how I always have a silly sense of humor? Well I still have it. The hospice nurse came over to introduce herself and asked me if I’ve ever used hospice services before, and I said No, I’ve never been dying before…And we both laughed. She said she meant for someone else, another family member, but yes she could she she didn’t word that in the best way.

I’ve been feeling alright, but my throat was killing me last night so I had to call a nurse in the middle of the night, they gave me extra meds and throat spray that helped a lot. It only takes a few minutes when I call they come right over.

Me: So you don’t have a nurse there with you all of the time?

Mom: No, I could if I want to but I didn’t want that yet. They’ve all been so nice. But my ears are so blocked I can barely hear, they can’t seem to fix that, and my sore throat. And I have elephant legs from all the fluids during the surgery and in the hospital they gave me lasix and I have to keep my legs elevated until the swelling goes down. They’re huge. (She started laughing) Sorry your bratty brothers are being bad, they are always so bad. (She laughs some more)

Me: (I’m thinking, Mom, I wish you had told me sooner, I wouldn’t have stayed away so long, I thought we had more time, I wish things were different, I’m sorry you have to suffer, I would have brought the kids to see you for christmas if I knew it was the last one, how long have you known? Why didn’t you tell anyone? It isn’t fair, it isn’t right, to give up on all of us without a fight and leave us all here to sort it all out for ourselves. But she never stopped talking to give me a chance to say anything)

Mom:I’m so happy you called and I need to keep taking good care of yourself because you’re my good, good, good girl and I love, love, love you. But I’m so beat, so I’m going go now.

Click

Me: I love you too mom

I’m not sure if she even heard my response before she hung up. The next day they moved her to the hospice full time center, and the following afternoon she died. Just like that and she’s gone.

So I’m doing alright. I don’t have any illusions that even with 20 or 40 more years that we would have had enough time to form a close bond, something out of nothing. But I did love her, and I did want a mom to love me and support me. Although I find it disturbing to be called a good girl, in her eyes there is no greater compliment, so I’ll take it. It means I’m not a failure to my mom which I didn’t know was important to me until now. I’ve worked so hard to keep her at a safe distance, but underneath I still wanted her approval. That’s all we really want, isn’t it? To be loved and accepted by those closest to us? I can accept and forgive any pain she may have caused and mistakes she may have made if I know the love is there, and I do believe her, that she loved us, that she wanted the best for us.

Unlike AF. See, I think he delivered the final crushing blow in the awful Will, when he stated he didn’t love me. Somehow that was worse than all of the abuse I endured and I snapped. As much as AF hurt me, I still loved him. Children love their parents, I no longer feel guilty for loving him and needing him to love me.

So at least that is the last words my mom said to me, and that is a gift I will treasure in my core. No matter our troubles and differences, I needed that.

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

Addendum: Found out the Funeral mass for my mom is scheduled during the week of my back surgery! I’ve been doing all of this work and planning getting myself ready to be able to go. I need this, I need to say goodbye, my kids need to say goodbye.

I call 1st brother to see why they are waiting so long? 2nd brother is going on a cruise so they are waiting until he gets back. Oh. And they can’t change the date now it has been printed in the obit and planned with out of state friends and family. Apparently 2nd brother called everyone except for me to make sure the date would work. Apparently it is more important that her neighbor be able to attend than her daughter. Apparently I am still nothing, non-existent – not even an after thought, I’m not a thought at all.

Before my trauma therapy I would not have spoken up for myself. I would not have known how or that I had a right to do so. I asked if we could have a 2nd service, a smaller one before my surgery? So this is not ideal at all. The day before my dreadful 12 hour back surgery, I need to drive 2 hours away to my hometown, see my brothers that I haven’t seen in years, to attend a memorial mass at the crack of dawn. Or I don’t attend at all. How am I supposed to be in the hospital knowing I didn’t attend? I can’t, I won’t. So I dig down deep, find that reserve of strength and do what needs done. I know mom said I don’t have to go. But my heart says I do. Even if it isn’t the REAL funeral mass, it will be real for me and my kids.

And maybe this is better, that it won’t be everyone there. Maybe it has worked out this way for a reason. I only have to deal with my brothers, not all of the aunts and cousins and neighbors and friends too. I’m already going to have flashbacks, so many triggers, we’ll be in the childhood church, the one I went to each week with mom growing up, when she dressed me in pretty dresses and I had a tiny white bible, a tiny white purse to hold the bible, and I sat there as her perfect, pretty little good girl. I loved it though. I loved singing the hymns and mom always seemed so happy there, peaceful. She loved showing me off, people always said I was so pretty and well behaved and she would beam and look proud. I didn’t get much of her attention at home, but at church, I was her good girl and everything seemed good and right in the world for a moment.

So I’m going to shake and twitch as I enter this familiar building, it will be difficult to keep myself grounded in reality. But I don’t care. I’m going to my mom’s memorial mass. I’m allowed to look a bit crazy eyed, cry and stumble. I’ll use all of my new skills to help me. I’ll feel what I need to feel. I’ll have Hubby, my kids, and my sis in law there to support me.I’m doing this as much for my kids as I am for myself, to show them death is a part of life, that it is ok to cry, that we shouldn’t avoid the bad stuff or the hard stuff, and that we get through it together.

 

Complex Grief, Pre-Mourning the Loss of a Parent

My mom is now in hospice care. And the pain has hit me full force, in fact I can barely type this through the tears flooding my face. I stop and calm down but as soon as I start typing and see the words I start crying all over again.

I thought I had more time.

I’m working furiously on myself, to heal, to recover to a more stable ground. I needed space from my mom and brothers after my suicide attempts last year and they granted it to me. I have not seen or heard from my mom, no visits, calls, not even an email in so long. Because I asked her not to.

Because I thought I had more time.

I withdrew from everyone this past year, went deep into myself, into my fortress of solitude where I regroup, lick my wounds, and learn how to go on. I’m doing that now. I’m starting to open up again, bit by bit, as the world appears safe and I test the waters with each wary step.

With complex PTSD comes complex grief. Even though I more clearly understand my mom’s role in raising me in the chaotic, traumatic world, contributing to my feelings of shame and worthlessness, allowing me to be abused and feel unloved and unlovable…as I heal and go through this recovery program I’m better able to feel and identify my emotions in the moment. I don’t hate or resent my mom. I am disappointed that we were never close, never had a strong supportive relationship. I do appreciate the times she tried, and the times she apologized. I don’t think she intentionally caused me pain, I really don’t. I think she wasn’t strong enough to stand up to my abusive father, herself also being a victim. I can understand all of this. It saddens me. I feel she did her best with the tools she was given.

I forgive her completely. I truly do. I had hoped to have a limited relationship with her again at some point.

But I thought I had more time.

So now I am forced to make a choice. I don’t feel ready to visit her, not out of the blue. Plus my brother has told me she looks terrible, the cancer has really taken its toll on her. I’m not sure I can handle seeing that, my brain will fixate on that image forever.

I’m trying to get up the nerve to call her. I haven’t heard her voice in years. I got her phone number from my brother. I keep staring at my phone. All I have to do is push the button, but when I try I start shaking and crying. I don’t want to talk to her like that. I want to let her know I care, that I’m sorry this has happened, that she is suffering, that I’d never wish this on anyone let alone my mom, and that I wish we had more time.

I wish we had more time.

But here’s the thing. My brother said mom is at peace. She is relieved to have an exit plan. She has wanted out for decades. She’s been living like she was dying for as long as I can remember, so she has finally gotten her wish. Is this better than being distraught? To happily give up and have no fight in you? I don’t know. She never had any fight in her. A victim of life for life.

I don’t want to be like that. I don’t want to welcome death. I want to fight. I used to fight.

I keep thinking of a song by Tim McGraw, “Live Like You Were Dying” because of one line in it. I’ve been hearing this song in my head, endlessly since I got the news about hospice.

“Talkin’ ’bout the options and talkin’ ’bout sweet time.”

I’ve spent an entire year in my bed or recliner. Like I already died. Partially I was healing, but partially I had given up and was only going through the motions.

So I’ll keep trying, and eventually I know my finger will press the call button. While I keep trying, here at home I’m looking through photos of mom with my kids, going over some memories together. My daughter asked if she could have a locket to put her Grandma’s photo in, I said yes we would get her one.

And then I saw how social support networks are supposed to work – when you don’t isolate yourself. My daughter said she told her friends at school and received comfort and sympathy and many questions. This generated more discussion here at home and we hugged and cried together.

My daughter made a beautiful card for my mom, in her favorite colors, full of flowers and butterflies, and poetry. My son painted a picture. We are going to mail her a care package along with some photos of us since I don’t think we can visit.

I have this gnawing feeling of guilt like I SHOULD visit, like I HAVE to visit, but my counselors say I don’t, and that those are shame gremlins speaking. If I WANT to see her, then maybe I should try to manage it, that is if mom even wants to see me. But I don’t have to operate out of that place where I’m the good girl and satisfying urges to squash feelings of guilt and obligation.

This is so complex and each day brings up more powerful emotions for me. I wish I had more time to sort it all out. I’m doing the best I can with a difficult situation that I can’t control. And I’m doing it moment by moment. I might change my mind once these feelings settle down.

I’ve included Tim McGraw’s song here in case you don’t know the one I mentioned earlier. I’m going to listen and cry again. You’d think my well would be dry, where are these tears all coming from??

No self worth – when a good little girl is never good enough

Don’t tell anyone. Don’t let them see. Don’t let them know. Keep quiet. Smile. You’re so pretty when you smile, no one wants to see an ugly face. Don’t bother the grown-ups. Be a good girl.

It’s our special secret. Crying never helped anyone. Only boring people get bored. Never let them see you sweat. Anything worth doing is worth doing right the first time. Wish in one hand, shit in the other, see which piles up quicker. Dreams are for idiots, geniuses make plans. Only fools waste time on books and art but you’re just a girl so I guess it doesn’t matter anyway. I don’t why you try so hard, you’ll never do anything important. Girls only get good grades or good jobs because you’re cute or because you cry.

These are only some of the messages I heard on a daily basis from my parents. I learned to be perfect – to only show people that I was perfect, and to hide every flaw. I was put in an impossible position of needing to be superhuman to be accepted and no matter what I achieved, I was treated as less than human, as nothing, nonexistent, an invisible nuisance like a gnat or fun toy for their sick amusement and pleasure.

Not only did I suffer from low self esteem and low self worth, I suffered from no sense of sense at all in this environment. My parents did not allow me to grow and develop into my own person, with unique desires, needs, and emotions. I existed only for them. I was completely enmeshed and served them. My only desires were to please them and be accepted – something I never knew was impossible. Abused children never know this, how can they?

So today I have some maladaptive behaviors based on core beliefs stemming from no self esteem. In fact I have way too many to describe in one blog post, so I will pick one that I’ve been discussing with my counselor recently.

I have a need to keep my secrets. I still need to hide my flaws. I still try to be perfect.

How can this be? I’m not a tortured little girl any longer. Why do I still resort to the same social behaviors that were taught to me as a child? Well, I haven’t learned any new ones yet. And until last week, I wasn’t even aware of how ridiculous some of my behaviors are, based on these unbalanced core beliefs. I’ll explain.

In January I had a particularly bad hemiplegic migraine attack that weakened my right arm and right leg for a few weeks. Sometime about 2 weeks after the attack, I decided to go grocery shopping by myself. I started pushing the cart and was doing fine for a while, until my right side fatigued as I put more in the cart and as I walked along. This was the first real exercise I had attempted since the attack but I was walking fine so I thought I could do it. First I started to limp, and then my right leg started to drag. I could no longer lift it. This was not alarming to me. Annoying, yes, but not alarming. I just knew it was time to go and headed to the checkout line. But to my horror, as I walked to the front of the store – people noticed my struggles.

People can’t see my struggles. People can’t know. Don’t tell them. Don’t let them see. Smile, no one wants to see your ugly face. Now you’ve done it. You screwed up.

First one, then another, then another, oh God no, another…people kept asking me if I was alright, did I need help, should they call someone, did I need a chair, could they push the cart for me….

Shut up! Leave me alone! Go away! Why did I come here today? Why did I think I could do this? I should have known better. I have to get out of here.

I smiled politely and told each person that I was fine. I refused help. Because I was fine. Because they have to think I’m fine. And if they can see I’m not then I’m actually going to pretend?? Hmmm.

Somehow I slowly made it out to my car, got my bags in it, locked the door. I wanted to take a moment to recover, but everyone was still there watching me! I had to get away. I drove home, with shaking hands, and tears started before I pulled into my driveway. I screamed and cried and hit the steering wheel and had an amazing fit that confused and shocked me. I had no idea what was happening. I felt horrible everywhere. My stomach was queasy, my throat was tight, my head was aching. I thought about my class and therapy – was this an emotion? Ha, I actually laughed at myself while I cried. I pulled out my chart of emotions and went through it….sadness, fear, shame, guilt, despair, frustration, humiliation, anger, grief, anxiety…I went on to name some more and ended with overwhelmed.

Why? What happened? Why is that response so strong for me? I’ve been working on this for a week now, completed several worksheets and I think I have a clue now. This situation actually encompasses several layers of stuck points, each one triggering the next core belief until I short circuit. I used to shut down, numb out and dissociate. This time I felt it all. Woah did I feel it.

Some of my stuck points for this event:

  1. If I can’t do my job I am worthless
  2. If people see my flaws I have failed
  3. If people see my flaws they will know I am nothing
  4. I’m not allowed to share my faults or secrets
  5. If I break a rule, I am bad
  6. If I get caught breaking a rule, I will be punished
  7. If people see me struggle I will be humiliated
  8. If people have to help me, I am a bother, a burden to them
  9. If people see something that I failed to hide, shared unintentionally, I have been violated
  10. If I let people see the real me, they will hurt me or leave me
  11. If I let people see my struggles, I am a failure, disobedient
  12. If I let people see my struggles, I will hurt them, make them uncomfortable

I overwhelmingly felt like a bad dog at that grocery store. Like I had messed on the carpet, chewed up the pillows and now my owner has caught me. The shame and fear were huge, but the disgust and self-loathing were intolerable. I was taught to hate myself and that lesson has stuck.

Like when I asked Mom if we could eat at Wendy’s after my back surgery at age 12, she said we could get drive-thru, couldn’t eat inside because she didn’t want anyone to see my leg brace and be uncomfortable. Wouldn’t want them to be unable to eat their lunches would you? They made me practice walking at night so no one would see. Kept me hidden away like I was hideous and would make people lose their appetites. I had a metal and plastic brace from my hip to my toes to stabilize the knee and ankle. It looked a little like the picture below, but my leg was a bit girlier, skinnier, and not so hairy.

afo_ankle_foot_orthosis_orthotic_brace

I see this now and I get so angry at my parents. Seriously. I wasn’t ALLOWED to be paralyzed? I am so freaking sorry that my being paralyzed put such a damper on your fashion plans for me and ruined lunch and social events that summer until, all on my own, because you denied me physical therapy and after care, I learned to walk again. A-holes.

OK. Sorry about that.

So anyways, I have some deep seated stuck points regarding how I am to behave, and even though I know rationally they are not healthy or realistic, I can’t simply snap my fingers and change it all.

Another example:

I told my counselor I am afraid of having flashbacks of my first back surgery during my next one coming up soon. And I’m not sure how to best prepare for it. I told her, it’s not like I can warn the hospital staff.

She says Why not?

Huh?

The thought hadn’t even crossed my mind. No way. not possible. You want me to tell all of those strangers, nurses, transporters, volunteers, doctors, surgeons…that I might have a flashback? That I have PTSD? That I’m not normal? The thought filled me with the same mixed bag of fear, shame, dread, guilt, anxiety…no…we don’t tell people…they don’t need to know…

She challenged me. She does not back down. She asked me to list out everyone I’ve ever told about having flashbacks and PTSD. It was a VERY small list. Then asked which ones of those people humiliated, rejected, or said horrible things to me. Sigh. None of them. Each person I have told has been compassionate and understanding so far.

Then she asked if I’ve ever told medical personnel. I said yes, my neurologist, after I had been seeing her a while. And the counselors in the psych ward. And her of course. She asked if any of those people treated me horribly once they knew about my flashbacks. Again I had to say no.

Then she had me visualize, a brand new nurse coming in to my bed, and I was telling her her hello and just by the way, I might have a flashback, I have PTSD, I just wanted you to know. How do you think she would respond? I tried sooo hard, but in every scenario the worst I could come up with would be maybe a nurse being abrupt or like ok, whatever, but no one being horrible. Most responses I imagined were “Thanks for letting me know, is there anything I can do to help?” or “What can I do to help make this less stressful for you?”

This fear I had…fear of what?? I had no idea. I had no idea what the terrible consequence might be. What exactly had my parents been trying to prevent all these years? Why did we all have to be perfect? What is this horrible thing that happens when people know the truth?

The answer is NOTHING!! Nothing happens. Its all a lie to keep us quiet and afraid. Was it all about control? Did they need us to be perfect so they could be perfect parents? Had my mom not told her friends I was paralyzed so she couldn’t risk anyone seeing me? If kids are perfect, then other people don’t ask questions and they get in trouble? Was it about her and them – and never about me at all? All of my shame was about covering their own asses? And I’m still doing these behaviors, to protect them, unknowingly, because it is habit, hard wired and ingrained in me.

I’m such a good girl.

I’m both sickened and amazed by these revelations. I think one day I may be free. But these chains are still bound tightly.

(picture credit: By Pagemaker787 (Own work) [CC BY-SA 4.0 (http://creativecommons.org/licenses/by-sa/4.0)%5D, via Wikimedia Commons)

Feeling mostly useless

My current state of mind and body is all new territory. I am either mentally or physically unable to do most of what I used to do just a year ago. I’m feeling mostly useless now, like I’m mostly occupying space. ( granted much less space than I used to, I’ve lost so much weight which is good)

I used to create our budget and pay our bills. Hubby does this now. I asked him to take it over out of necessity last year when the migraines hit full force, then asked him to continue to minimize my stress. Other than feeling a bit out of the loop, I don’t miss it. So lately when hubby has seemed stressed and pressed for time, I’ve offered to help out and pay bills if he wanted me too, or take that chore back from him if he preferred. Surprisingly he said no. He prefers to keep doing it himself. As much as I wanted to be helpful, I was greatly relieved by his response.

My other household tasks include washing dishes, vacuuming, sometimes making meals, helping with homework, calendar planning, driving kids to school, and general light duty tidying. The kids and hubby do all of the lifting, pushing, moving, etc.

I fill my days with TV, video games, therapy homework, chatting to online friends, exercise, and distracting myself from pain.

I used to be the person with ideas, with skills and talents, with more use than time. Now I have all of this time and I feel mostly useless.