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I am Grief

It is starting to feel like I am grief, not like I am grieving, not like it is a process, or an emotion that moves through me, but a state of being that is me and completely has consumed me from so many directions.

When I allow myself to feel the sadness, I can’t see to type through the tears, so I need to hold it back to that familiar dull choking feeling that is now my life. That no one wants to see or acknowledge. Yes I am still sad today. Yes it sucks. Yes I need more time. I don’t want to apologize for how I am any more. I don’t want to explain it any more. I want it to be understood. But this is my life – I don’t get what I want.

I do feel moments of happiness with my kids, I do, but it is heavy, weighed down by this sadness, like I have an upper limit, or this shadow turning everything good a bit blurry.

I miss my mom. So much. So many things I want to show her, share with her, apologize for, explain to her. I see her everywhere, the songs she liked, the candy she liked, flowers she liked. I have paintings I started for her

I am also hurting as I realize I have not been treated very well here. I realized I did not receive one sympathy card, no flowers, no casseroles. Not even from my in-laws. Nada nothing. I did get one phone call from an aunt, the wife of my mom’s brother checked on me. That’s it. No one else reached out to me at all. Same for when AF died the year before. I know that was complicated, but everyone pretended it didn’t happen. I have lost both of my parents in the space of a year and a half, both were not even 70.

Then AF declared for the world to see that he never loved me, in his Will.

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That broke me. I crumbled. Whatever was holding me together for so many years was shattered then. I lost myself. I became suicidal. I lost my job. I was hospitalized. Then as I was recovering my mom got cancer and didn’t tell me. I had pushed her away while I was healing. I didn’t speak to her during her last year on earth because AF broke me. He stole her from me again. Just like as a child, he kept her from me, creating fear by telling me she hated me and never wanted me.

Hubby is still not understanding. He is not gentle or comforting for me. His volatile moods and rough responses are too much for me to handle right now so I generally avoid him. When I do specifically ask him to do something for me and I think he understands, he does not follow through, leaving me hurt and confused, feeling betrayed all over again. I say please don’t tell ___ to your mom, it will get around to your sisters and come back to torment me and I don’t want to deal with all of that. He agrees. Then an hour later I hear him, he is telling his mom ___ on the phone. (Next day his sisters text me about it…I hate drama, wanted to avoid it, none of their business, didn’t matter, leave me alone, I give vague responses until it settles down) I ask him later why he did that? He yells at me. It is my fault again. How was he supposed to know. Sigh. Do I give up or do I try again?

I don’t understand. I have such little trust as it is, these events don’t help. I am spiraled into emotional flashbacks because he can’t do what he tells me he will do. Did he not agree with me in the first place? Am I not important enough to grant or remember this request? Was he lying to shut me up, make me happy, with no intention of not telling? The doubts flood my brain as I try to make sense of what happened. And he says, Sorry (but he says it so rough like a bark, not sincere), whatever, What’s the big deal.

Then we are trying to plan a party for his parents. It keeps getting more and more complicated, with his one sister coming in from out of state, the one married to the guy I accused of being a creep a few years ago. That plus they are adding more events to the day, a family photo, lunch, dinner, coffee and dessert, all in different locations. I told hubby that I was concerned I may not be able to do all of that. Then he said to his sister on the phone that I may be too tired, not have enough energy to do all of that. My heart sunk. Is he ashamed of me? He can avoid this topic but not the one I asked him to? So I texted his sister after he hung up “Hey I’m not sure he explained it very well, I want to do everything you have planned and it sounds like a great day for everyone and your parents, but I am still struggling with social anxiety and other symptoms of ptsd that may make it difficult for me to do so many events all in one day. I don’t want to let you all down, I will do my best to manage but wanted you to be aware.” She texted back “ok”

So I am trying to be real with the only people in my life. I keep hoping they will one day be more accepting, accommodating, instead of only me being forced to hide my symptoms and smile pretty for them so they aren’t uncomfortable. I have no idea how I married into such an unsupportive group, I suppose some part of me knew this, guaranteeing my isolation and continuation of what was familiar. They aren’t pedophiles and psychopaths, but dysfunction runs rampant.

Maybe a supportive functional family is a myth.

I am trying to manage this grief that keeps trying to swallow me whole. But I noticed I have forgotten how to smile. It is no longer natural. I started practicing in a mirror and those muscles feel so heavy and I can only produce an odd crooked grin.

I am turning 40 very soon. I have no plans. No party. No friends. No extended family, just my kids.They are the only humans I feel safe with, can feel happy with. I hate how much I need them. My daughter is my best friend, we talk about everything. I already fear the day when they grow a bit older and I lose them. Then I will truly be alone on this planet. Until then I will try to cherish the moments and try to make this creepy grin into a real smile and try not to think about how unimportant I am to everyone else.

Good day dear cane

I have officially put my cane into the back of my closet. Woot! Woot! I am walking steadily and with more strength each day. I don’t feel like I am limping.

I am incredibly slow, yet each step is solid. My stride is wider and more natural now. I am spending more time on the weak leg so it is more step-step and less stepppp-hop. 

It has been five months since my back surgery. The strength and balance gains in my weak leg are nothing short of phenomenal. After 27 years of feeling it grow weaker, this simply doesn’t seem possible, like it isn’t my leg. I have advanced weights and color levels in physical therapy. I am rebuilding muscle and nerve pathways.

I have cried a few times at PT, out of surprise and joy from my new strength and control. The therapists beam with delight and cheer me on, all knowing my story, well, my scoliosis story. I feel real and accepted there and cared for.

I still have a long way to go. My success is relative. My walking distance before my leg fatigues is 540 feet, but used to be 100. I have worked up to using 2 pound weights with my arms. I still have negative range of motion in my ankle, unable to bend it up to a right angle, but I am only 1 degree away now, started at 5. 

I have many other metrics and measurements we are tracking. Some seem so pathetic as I regain core body strength from this surgery. Using my arms is still very painful. Pain wraps arounds my ribs and lasts for days for attempting something simple, like lifting a canteloupe.

Every day I do a bit more and try to be patient with the slow pace. The surgeon told me it would take a year to recover, but hearing those words and living those words are two different things entirely.

I want to walk my dog. She is about 50 pounds. I can’t do it yet. I can however, just this week push and turn a grocery cart without assistance, if it doesn’t have much in it. That was a major triumph to buy some (light) groceries by myself, without kids or hubby – or a cane – to help. I was tired and hurting a bit, but mostly just grinning like a fool at my accomplishment.

Listen to me

Listen to me

Hear my words, feel my thoughts

Before you react

Can’t you see what you do to me

Silence my words, invalidate my thoughts

Because you

Are more important

Your needs matter

And I don’t

I am not what you say I am

I am starting to know me

Too bad you don’t or won’t

Losing hope

Because you don’t even know

How to listen

Out of the crisis zone

Little guy is an awesome good natured little guy and handled his birthday disappointment beautifully. When his one and only guest arrived, he beamed with joy, and had a wonderful, if cozy party.

Hubby handled my absence and entertained the mother that stayed. He told me that the same thing happened to her a few weeks ago…no one showed for her daughters party. Summer is apparently a difficult time with sports and vacations and split homes.

Little guy did not seem to notice my absence, so absorbed in his friend. That was good.

We decided to take him out to a movie to extend the fun on our own since his party was so short. I was nervous, already feeling down and out of sorts, and not having been to a movie theater in a couple years. But I wanted to try.

At the theater, the previews had started already when we arrived. The theater was loud and dark and crowded. We could not find enough seats together and my anxiety was building. It started to feel dangerous. I was having trouble seeing and hearing, and now struggling to breathe and remain grounded. Crap, crap, crap.

Hubby started walking to the front with kiddos and I backed up to the back wall, leaned there and hugged my back support pillow, trying to breathe and focus. Hubby came back for me, looking torn, does he follow me or his kids. An usher came and asked how many seats we needed, and just laughed and walked away when we said how many.  Hubby pointed to some in the middle and by then I was near panic and could not pass by or touch those strangers knees. I wanted to get out of there. So I did.

I left the theater and sat in the food court by myself. It was bright and quiet out there. I did several grounding exercises and felt normal thoughts returning. What was I going to do for 90 minutes now? What was I going to say to kids for why I left? I could not get back in, hubby had the ticket stubs. I was thinking of ways to explain my situation without sounding entirely insane when hubby texted that he found seats and would come and get me.

He didn’t give up on me! I was so grateful.

The theater seat was horribly uncomfortable, curved ergonomically for someone that can bend their spine. I did my best to adjust and use my pillow but I was really hurting by the end. Other than that, the movie was cute enough, I started to calm down after about 30 minutes, and was pleased to be there with everyone and not excluded.

Being excluded sometimes hurts worse than the pain or anxiety, I am finding. It makes me feel I am not good enough and let everyone down.

I need to fight harder to find ways to be a part of my own life.

Best part was my lesson I learned from my 8 yr old on rolling with it and having fun anyway. We were cuddling later that evening and he sweetly said to me, “today isn’t exactly how I thought it would be…but it was a good day” and he hugged me. I told him I was so happy he had a good day and that I loved him.

And in THAT moment, everything was right in both of our worlds I think. Man I love that kid.

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.

Turtles can’t do yoga

Such an odd feeling to be trapped in your own body. Since my back surgery in April I keep having these odd moments of panic, nearly like claustrophobia, but the small, tight space I am confined within is my own body.

My initial back surgery as a child fused most of my spine but left a few vertebrae at the base in the lumbar L4-S1 and up in my neck free to turn and twist. My recent surgery extended the fusion and internal hardware to give me more stability against my scoliosis and kyphosis. My lumbar discs had deterioriated and disappeared. I had air gaps in my spinal column from so much slipping motion between my vertebrae. This has been corrected. I am no longer in pain. The nerve has been decompressed. I am getting stronger every day. However I had to sacrifice even more of my precious little flexibility.

This may not sound like much to those of you with a bendy, twisty spine. You can’t imagine what it is like to have a solid, rigid backbone. You can’t imagine having perfect posture and never being able to stretch your side muscles, do a sit up, arch or curl your back. I also can’t jump, as your spine is a natural shock absorber, being solid puts all that force onto one spot like a sledge hammer. Not that I was very jumpy, but jostly things like hay rides or roller coasters are quite painful. I have moments when tears come to my eyes now, out of frustration, not pain. I feel like I’m trapped in a shell.

The extra hardware alongside the original hardware have completely eliminated all the twisting. Good for pain. But it feels so odd. Like I am in a full body cast. I simply can’t move.

I can no longer rest my head on Hubby’s shoulder when snuggling in bed. I can barely reach the floor, if I drop or spill something. I have to do a combination of a sumo wrestler squat/ballerina lunge since I can only bend within my hip joint itself, nothing in my back at all. I started driving again this week, and I can barely see for backing up, only having motion in my neck, no longer able to twist at all. I can’t see or get items from the back of the fridge or cupboards. I can’t tuck in my kids, I have to hug them before they get in bed. I can’t reach my dogs’ tummy when they lay on the floor, only with my feet. I can tie my own shoes now, but I have to hold my breath and stretch first. I can’t do even the little bit of yoga I used to do.

I will get used to my new body given more time. I’ll keep working on my leg flexibility too. And I am so happy to walk around without the pain, truly I am. I only wanted to document how odd this experience has been as well, to reach for something that should be within reach, but it may as well be a million miles away because your unbendable body will not let you get there. Kind of like trying to stick your elbow in your ear.

And the toughest part perhaps has been Hubby thinking I am pushing him away, rejecting him. I just can’t get there from here. I can’t get comfortable. I can’t bend and lean into him. All I have is my arms.

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I feel like a turtle with a hard awkward shell. Turtles can’t do yoga either, and they always seem quite peaceful. I know I’ll be alright eventually.

 

Surgery story, part 7, going home

On Monday about 8 am, the Dr told me I was going home that day! I was shocked. It was only day 5 and we had originally planned 7 days in the hospital.

I called hubby at work and asked if he could get off work and how soon. I wanted him there with me for the final discharge instructions and physical therapy so he knew how to help me get home. I was suddenly feeling afraid and overwhelmed, not ready to leave the safe hospital world that I had grown used to and wanted hubby there to support me as well.

Hubby called back and said he was leaving work, heading home to change, then would be up to the hospital. I expected him around 10 or 11. I told him which soft, loose pants to bring me, which top, and decided to go without underwear or bra as the elastic would be too painful on my incisions. I did not think to ask for my coat, thinking the cold rain would remind him of my need for that.

So much happened that final day. More blood work. Visits from so many doctors, physical therapists, occupational therapists, pharmacists, home care coordinators, social workers..so many people on a team making sure I was going to be safe and healthy at home.

It was a whirlwind of information, and I wished hubby would hurry. My lunch came and I called, he still had not left home. I was getting angry and hurt now that he didn’t do what he said he was going to do, and that I was all alone, and that he was going to miss the important information.

Sure enough about 2pm PT lady came for me and still no hubby. We went to the gym to practice the stairs to make sure I could get into my home and up to my bedroom. She had me walk without the walker a little, just holding her arm and hand, and that felt amazing. Then we practiced getting in and out of a car safely. I have to do it without bending or twisting- not so easy, that’s why we practice the maneuver.

This lady saw how thin my right leg was and asked about the atrophy. I explained that this surgery corrected 27 years of nerve compression, that I’m stronger and can feel it now. She nearly cried for me, and I nearly cried too, but I wasn’t letting myself believe it yet. Not for about 2 more weeks.

She gave me some other challenges, let’s see if you can walk up the stairs leading with the right leg then. I hadn’t even attempted that in 27 years. I said OK. It took a moment of staring before my leg did what I wanted, something PT calls ‘motor planning’, but then I did it.

Step up. Step up. Pulling myself up with my little right leg. It started quivering after about 4 steps, so we stopped to rest, but I felt like I climbed mount Everest. She wanted to see me lead with it going down now. I was scared. It used to buckle and give out. But I had two railings and a safety strap under my arms, so I said OK.

Step down? Yes! It held! I couldn’t believe my eyes or other senses. That couldn’t be my leg. I went down the 4 steps, very slowly, letting my right leg bear my weight for the first time in adulthood.

When I got to the bottom, my leg was hot, trembling, flexing. I could feel muscles inside of it. Angry little muscles, yes. But muscles working and firing. Such an amazing feeling. I so wished hubby had been there to see this.

PT lady wheeled me back to my hallway and said she was sad I was leaving today, she would love to keep working with me. Then she asked me to walk some more to see how it recovered. It hadn’t. My leg was quivering jelly. I was going to push through and drag it along and she made me stop. She said never push a muscle past fatigue, only up to fatigue.

I was shocked and it showed on my face. I explained that I was used to pushing past that point. She got a little upset and said she can’t imagine any physical therapist asking me to do that, that pushing past fatigue only causes pain, once you lose quality of motion you are doing harm not good. She asked me who told me to do that?

I said it was my dad….she put a hand on my shoulder and said she was sorry and we had a quiet moment of understanding. Wow. And woah.

So many years of abuse, and pain. I felt it all lift and float away in that moment when she understood. Because I understood. It wasn’t me. AF was a sadist. He enjoyed my pain. He taught me to hurt myself, to ignore signals to rest. He would say things like “no pain, no gain” or “nothing in life is easy” or “pain isn’t real it’s all in your mind, you can choose to feel it or not” or “quitters never win”. He was full of sayings like that to fill me with shame for wanting to rest. Well no more.

Now it got confusing as back in my room, the pain from PT was overwhelming. Dr ordered me Tramadol, a weaker narcotic i had not tried yet. I was willing to try, the pain was bad enough, and i figured it might help for the car ride too. The pill and fatigue made me spacey, but I swear two different doctors, a nurse, and the home care rep all gave me different instructions regarding my bandages and suture removal. Again why I wanted hubby there.

Finally about 3pm he did arrive. At that point we were only waiting for the final discharge which took another hour or so. I tried telling him all the information he missed before I forgot, which overwhelmed him, and he could tell I was annoyed but he didn’t know why. I was also dreading the car ride. Nearly two hours of bumpy torture coming soon….

A young girl arrived with a wheelchair. I asked hubby for my coat as he out his on, and he looked frightened. Ummm….I  didn’t bring you one, you didn’t ask for one. I tried not to be too hurt and annoyed by his thoughtlessness as nothing could be done now.  I was packed into the wheelchair, a pillow behind me, and all my gifts on top of me.

The ride down was alright, but it took hubby about 45 minutes to retrieve the truck from the parking garage. By the time he pulled up, I was in excruciating pain from sitting in an awkward unsupported position. I kept trying to shift in the chair but nothing helped. My spine was on fire.

They said I was not allowed to sit still for a 2 hour car trip and that we had to plan a stop at least once to get out and walk for 10 minutes on the way home to keep blood flowing or something. We pulled into a rest stop about half way home. I got myself out of the truck, but it took an enormous effort. I was stiff and sore. Hubby gave me the walker, but I couldn’t make it move in the parking lot. There was too much resistance compared to the smooth hospital hallway. I went about 5 feet and started crying, tears streaming down my face from pain, fear, and frustration. I asked hubby to walk me back with his arm, the walker was too difficult. It was much harder to get in the vehicle this time than at the hospital, I had to push through the pain and the chills from walking in the cold rain without a coat made all my sore muscles angry and tight. Once back in the truck, he cranked up the heat until the chills subsided, then we headed home again. I hoped it was worth it to follow that advice to stop and walk because everything hurt so much worse now. Every bump in the road went directly into my spine and there was no way to soften the blow.

Finally we made it home. I struggled to get out of the truck. I could barely move. Every muscle was stiff and in spasms. Hubby got me to our porch steps, somehow I went up, only three but it felt like I was ripping apart inside with each step. In the house he had a chair for me near the door. Nice, but it had a curved back so I couldn’t actually lean back on it without causing extra pain, even with the pillows. I sat there a moment and decided it would be best to get in bed.

Upstairs.

We started the longest, slowest journey. Step up, moan, whimper, breathe, pause, step up, grimace, whine, breathe, pause, step up, ouch, groan, breathe, pause….until I made it to my room.

Then I stared at my bed. My flat, non hospital bed. And I lost it. I started sobbing. Why did I come home? I wasn’t ready! That trip was horrible torture and now I don’t have an adjustable bed, I can’t do this. I should have stayed in the hospital longer.

Hubby stared at me all bug eyed and helpless as men do with crying women, but even worse because if he touched me it would likely hurt, and he usually says the wrong thing, so he just stared in silence.

In a moment I calmed down, tried to roll into bed, but it was too low and i yelped in pain. Hubby had bought some wedge shaped pillows and asked if I wanted to try it. It made it easier to roll and I got in, but it seemed so hard, like laying on cement! I could feel with my hands that it was soft though, it was only my sore back making it feel hard.

Hubby brought me ice gel packs and slid them under me, covered me with blankets, and then I just waited for the pain to ease. I took a tramadol they sent me home with, but it only made me nauseous and did nothing for the pain. Somehow I made it through the night, by breathing, visualizing, and distracting myself with tv and candy.

I wanted hubby with me that night but was afraid he would bump me in his sleep. We placed a giant body pillow between us in the bed as a barrier, later we named it the “chastity pillow” to be funny, but it effectively kept us apart and me safe.

I discovered I could walk to our bathroom without the walker by holding the dresser, the bedframe, and the walls. PT lady calls this furniture walking. My tiny room and hallway really made the walker impossible upstairs. Plus I wasn’t having balance issues, I was ready to walk on my own and try out my new legs.

Just as soon as I napped.