Tag Archives: surgery

Backwards and forwards

Yesterday was Noah’s birthday. He should have been 49. It will be really bad for me when I turn 49. That’s going to be savage. We spent the day cleaning the house and getting ready for my impending surgery. One day till my friend arrives to help. She wants a few days of settling in with the kids first. She is smart. Surgery is in four days. Due to the stress and vagaries of train travel I’m going the night before. I feel less resilient with Noah coming along. I think the surgery will be fine. It’s going to hurt like last time.

Unlike last time I won’t have to give a police interview 3 weeks into recovery so I’m less likely to have a sudden massive bleed out.

I’m having a hard time with my feelings. I realize that isn’t a huge shock or anything. I wish I could only remember good things about Noah. Instead my brain is going through all the memories–good and bad. Our marriage was extreme in a lot of ways I can’t nail down without feeling shame. We constructed a marriage that wouldn’t work for anyone else. Were we wrong to do so? Sometimes I can’t tell.

The part that matters to me is: I wouldn’t leave for anything. I would never have left. I would have dealt with being in pain or having to be smaller. He was worth it. He was worth everything. I loved him so much I feel I could explode. He was a very good husband for me.

I am behind on emails again. I haven’t caught up on neurotic tracking in a while. If I’m not sharing the data with Noah it feels so much less purposeful. I created data, in part so I could show Noah trends and patterns and he would decide when I had to go in and seek help for a problem. He was my designated grown up and care giver. Now I feel like I will drift in the wind because there is no one to care.

I feel so achingly lonely. I want him all the time. I miss his smile, his intense way of looking at me, how he touched me, and how made me believe I always had a place: beside him.

I feel like I will never belong anywhere again.

I am highly conscious, as I move forward as a human being who will never agree to monogamy again, that I will never feel like I belong to someone again. People will always keep a space between us for their own safety. I can’t blame them. I would too. I don’t think it safe or wise to get too close to me.

The person I am seeing keeps asking why I hard selling the benefits of being around me. Do I expect him to do the same? I don’t. I really don’t. It was one of the dominant behaviour patterns of my marriage. Noah and I both did it constantly. “See, I do x for you. It is better to have me around than to kick me out.” As if that is a healthy way to run a marriage. I am having a hard time stopping. I still feel like I am trying to beg people to not throw me away. I think part of me agrees that if I am not monogamous nothing else I do will make up for that. I am a poisoned pill.

It’s been sitting heavily in my craw that between 3 men, I have not had control over my sex life or my sexual development for about 33 years. The middle one had the least time with me, but he did a lot of the early hypnosis work that Noah built on for almost 20 years. It’s not that I lost control of my body at 10. It’s that I gained it briefly at 13. I gave it away at 19/20 (that was a muddy line). It was given back when I was 23. I regained *nothing* at 33. I did have a rebellion at 34. Now I’m getting it back permanently at 43. I pay a lot of attention to patterns. Numbers give me comfort.

As I contemplate what I need from dating, as my son likes to say, the bar is a tripping hazard in hell.

Going forward I am going to need to spend time around people who make me feel cared about. I’m going to need to spend time with people who act like I am a fascinating puzzle. I am going to need to be around people who are cautious with physical boundaries and who recoil like an electric fence when they are told no. I cannot be around people who body shame because I cannot ever be vulnerable with them. That is a sign that I am going to be attacked and I will feel deep shame. I don’t need more shame factories in my life. I really don’t.

What I need (and the reason it is worth my while to seek out) is to feel seen and appreciated.

Most people don’t make me feel like this. Very few people make me feel like this. I go through most of my life feeling intensely alienated because I can’t ask most of the people I spend the most time with to see very much about me. It creates an overwhelming deficit.

Noah used to fill that. I don’t know what to do now.

I fee sad and isolated a lot of the time. More than I deserve to, in my opinion. It will change when and if it changes. I want so much. I feel entitled to so little. Noah gave me so much. My whole life is going to be less full obsessive love after this. I will never be someone’s autistic special interest like that again. I don’t even know that I would like it again. It came with a lot of constraints. They were worth it. I miss him.

The kids are clearly well on their way to deifying him. I just nod. I don’t talk about his down sides. It’s too soon. Someday when they are bemoaning how they will never be as good as their super human father I will cackle and tell them about all the stuff they didn’t see. He was a man. He had his good parts and his bad parts. He was deeply and achingly human. He was frail in a good many ways. He was aggressive in ways he shouldn’t have been. At times he was violent. Yes, he did lose his shit. Only with me. I was his safe person, as he was mine. For people like us, part of feeling safe is being able to be all the parts we can’t use with other people. Some of those weren’t very nice.

I have intensely positive feelings about my marriage.

As I move into the next stage of my life, where I don’t have Noah to meet my needs, I have to consider other ways to meet them. It feels cold as fuck but also what else am I supposed to do? I’m not my mom to simply never date again. She had a threshold of abuse and was done forever.

I have data. I understand how low the rate of violence has been for me in terms of broader exploration. I see the fireworks of good. I can’t act like one very small part of the data set defines the whole. That’s silly. That is numerically unsupportable.

Thanks to having data I can see the positive changes in my trajectory. The kinds of people I could find at different stages of my life are very different.

I am grateful I am about to have help with the kids for a while. I need it. There are tasks I’m falling behind on because I can’t brain after this many hours on duty. I feel like my job shouldn’t be exhausting after all these years–I should be inured. I’m not. I still like my day job but I need to simplify aspects of it. I can’t be as much of a three ring circus without Noah present for support.

I am so much less capable without him papering over the cracks and finishing the last 20% of so many things. And on top of that I’m doing all the stuff he usually did entirely off-screen from me. This is hard. My brain is very overwhelmed all the time. I need to find a way to get Shortie more of a social life without me having to physically facilitate it. She needs it really badly. I’m having a hard time. The surgery recovery time is looking so brutal. Oh well.

Keep moving. Only for the first wee while it’ll be shooting for 1,000 steps a day level of “moving”. The point isn’t to keep a consistent speed the whole time. We are humans, not machines. The point is to be patient and loving and kind to myself on the far side as I struggle to regain fitness. It will be another journey. I will have to go slowly or I will hurt myself.

This process is going to be harder without Noah to fuss over me and force me to rest. He was literally looking at retiring early to be my full time carer. I’m scared. I get sick a lot. I have a compromised immune system. I don’t have a specific name for it. I just get everything and I’m down for long periods. My life doesn’t stop though. I stay sick longer because I don’t rest enough. If I don’t do too much, not enough gets done.

And now Noah won’t be here to help so there is even more work that I am responsible for. Fuck. Not all of it. His family is stepping forward to build more intense relationships to start the process of transferring intergenerational wealth. Noah turned it down throughout his life. The offer was always on the table. I’m going to say yes. I would be a fool not to. I’m going to need to pay attention to this education they are offering. I am now responsible for managing all of my money. I don’t get to wave at it and call it “Noah’s money”. I have made reasonably good choices so far. I like where I’ve gotten.

A very terrible part of me can’t help but notice that the severance payment for my first marriage is alright. Sure, the relationship was terminated but I am going to be safe forever if I manage it carefully. I can’t be profligate but I can still buy whatever groceries we want. I will never live like a tech bro again. Somehow this is karmically a place I can live with.

I have incredibly mixed feelings about the wealth transfer. I also know that I have two kids with noticeable physical disabilities and one kid where it’s too young to know. It’s connected to genetic issues in both kids. The NHS is finally starting to evaluate/track them.

I may have brought people into the world who are not well suited to the capitalist hellscape. Remains to be seen, of course. I’m not offering them a fully independent amount of help. They could have enough to live at home comfortably. I can’t promise a lot more than that. I don’t have more.

Noah doesn’t have 6 more years on his arc towards saving for retirement. There was a fair bit of input expected to get to what he wanted to hit. Oh well. Deep breath. I can turn a dime into a dollar. I will be ok. I am very good at denying Current Me things so that Future Me can have more options. I’ve been playing that game for a very long time. I can take a lot of denial in some ways and not so much in others. I will build in giving lots to other people, don’t worry. I’m still me. I am thinking really hard on the structure of that giving. I am going to have to have that firm in my head. I need guard rails and limits. I need to understand what I have to give. That’s a hard thing to figure out sometimes.

I have been told recently that I like “folky” country music. I like stories, not hard rock anthems. Guilty as charged. It’s funny. I never thought of myself as such because I had never had the slider start in that position before. Usually I’m considered not very folky. I know a handful of artists and otherwise I can’t it through it. I’m too pop.

I have been listening to a lot of old albums lately. I don’t want to watch shows. I am reading more. I like having music on. I know I should embrace silence more. I do know. I like the way I get to ride my emotions like crashing waves when I have music on while I type. It is my companion through all the highs and lows and flashes of memory.

I love the way I get to re-sort my past memories that come up. I see each circumstance differently. Noah and I ran out of arc. It is really hard to feel like I am having to go in and put a manual end on each piece of the thread. “This is over now.” I am pruning off parts of myself that grew there because I had to accommodate Noah. I have absolutely no idea what this is going to mean in the long run.

It scares me a lot.

I am going to have to be mercenary with myself about my limits going forward. I need to catch up on budget work. I need to stop allowing myself this sloppiness. I’ve been scared to look. I can’t do that anymore. I’ve been watching the overall balance and keeping an eye on that. I need to look at how things are shaking out.

Then I need to hand a number to my in laws and that’s awkward. They don’t want me to stop having all fun. They want the kids to have big lives, still.

I have the option to choose a soft life.

Globally speaking this is righteously unfair. I’m aware. I’m having feelings about that. I also don’t see any global value in grinding myself to dust. Who knows what good I will do if I have the ability to learn how to thrive instead of barely surviving in “solidarity”.

I have always done my best to pay forward the help I have received. I either have credibility or not. I am not assuring private jet lifestyles. I am making sure we won’t lose the house and we never have to worry about food.

Our life together has been a mash between what he wanted and what I wanted. Now what? What about the parts that were only there because he wanted them? I’m having a lot of feelings about that. I’m having a lot of feelings about everything right now.

This is the path. I get to traverse it, not question it. All the feelings. I’ll have all the feelings.

Even though I feel weird, I’m going to talk about him.

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I have been writing about this so prolifically in the walled garden that it is weird to figure out where to start but I feel like I should. Only talking about this on a password protected site feels too close to dishonesty.

I only managed 2 months of abstinence after Noah died. I’ve only had one period of abstinence that was longer that wasn’t medically necessary since I was 16. I don’t do so hot with abstinence. It ramps up all of my mood difficulties. It makes me very physically jittery and my anxiety spikes through the roof. I don’t feel ok physically if I am not having sex more often than most people consider normal. I’ve gotten very comfortable with the language of hypersexuality for myself.

I went looking on a swinger website, which seems to be the hopping place for casual sexual encounters for the local area. A pal from the munch recommended it. One fella made it to almost three months before his personal life shifted and he can’t have sex with me anymore. I wish him and his girlfriend many happy years of monogamy now that they have gotten to that level together. I have had a few people last a handful of times but I ended things with all of them for one reason or another. There is another one I’ve seen a few times and I need to officially end it. I’m not one for ghosting. I like clear openings and endings.

There is someone approaching three months. Due to a whole cascade of events he’s actually going to be the person staying with me after my surgery on the 8th. I have to stay overnight near the hospital in case of issues. For various reasons the surgery is happening a hundred miles away from where I live. A friend is staying with me for 5.5 weeks to help with the kids. Then I have arranged local people helping with the kids after that.

I have been calling this person Gentleman because he has an incredibly proper way about him. Some of it is me misreading his accent as being more posh than it is. A lot more of it is because of the knee jerk intensity he has towards a lot of behaviours I would consider improper. He’s intensely respectful. Every time I have expected him to be unpleasant or rude or cutting he has instead startled with shock and been incredibly kind and supportive instead. He probably doesn’t think of himself as a proper gentleman by the standards of his country. He is what I was brought up to think of as a gentleman.

He has achingly polite manners a lot of the time. He is deeply considerate. He accepts things about me that I’ve had to fight over all my life. Not in a “go limp with resignation” sort of way, he accepts me calmly and without fuss. It’s just true. I feel guilty every time I assume something negative and he comes back entirely positive or neutral.

I feel safe and comfortable with him. I’m scared he is going to turn and run every time I cry. I’m not always managing to be a fun toy. He doesn’t have a lot of expectations about me. I feel bad that I flinch as much as I do. It feels unfair. I am sad every time I know I am tense because Noah would have been upset.

I love Noah and I will until the day I die. It is also true that we were both intensely traumatised people. We had massive gangrenous wounds that had to be accounted for all day every day. We were together all day every day. I see all the ways he accommodated me and I see all the ways I accommodated him. I see the ways we were fairly abusive with each other at various points in our marriage. I’m not rewriting my marriage in the rear view. I saw all of this and wrote about it as it was happening. I talked about us screaming at each other. I talked about name calling when it happened. I talked about hitting when it happened.

I am not rewriting the story. I am seeing it come to a close and I am trying to assess the physical damage I will get to live with in the cells of my body because I shaped myself around Noah in ways that were not always healthy. I loved my marriage and I would have stayed forever. I thought he was worth the cost I paid. I would have been willing to pay twice what he cost me. He was good for me in so many ways. I don’t think I would be ok right now if I hadn’t had him. Noah gave me a home.

We both wrote quite a bit over the years about how we both believed that I would not have been capable of accepting anyone less abusive. I needed who and what Noah was.

If I had known how short our timeline was I may have made some different choices. If I had known what the timeline was then I made bad choices. I didn’t though. I was planning around 30 or 40 or 50 years together. I don’t think I made bad choices considering what I expected to have to carry. I would be ok with being a lot more burnt out in trade for giving Noah a better last year of his life. 2024 sucked. There were high points but mostly it was a brutal year from start to close.

I would have made different choices if I knew that was the last time I would have with Noah. I miss him so much that I feel like I will explode with pain. It’s been five months and I wouldn’t say I feel better. I am having more positive emotions. The lows are still pretty terrible and they are happening most days.

This is part of what I am scared to share with a new partner. I cry a lot. I always have, that’s been true for 40 years. I have always had a lot of reason to cry. This feels like it wants to swamp me the way Uncle Bob’s death did but I don’t have the structure in my life to support that much going off the rails. So I am not. I’m holding my shit together. I sneak off and I cry for some time almost every day. Some days are too busy and by the end of it I am jittery like I’ve just downed a six pack of Jolt. I cry to let the stress out of my body because it is better than almost every other way of coping.

I am having big feelings about the way I am crying with Gentleman. I have cried with him a number of times now. That’s not normal for me. Usually I hide. It is not safe to cry in front of people most of the time. I hate that I mostly could not let Noah touch me when I cried because I was really overwhelmed. It didn’t feel safe. There were too many times when I was hurting very badly and he hurt me more. He wanted to be my safe person. He would work at it really hard. Then something would happen and I would make him mad and he would hurt me again. He was always really upset that I couldn’t drop the flinch response. He didn’t want me to act like he hurt me.

I didn’t want him to flinch away from me either. Sometimes he did when I was angry and my tongue ran away with me.

He was the least bad bad guy I could find and we spent decades being deeply and overwhelmingly obsessed with each other. Sure, there were issues. It’s weird calling any of it abuse because so much of it was explicitly consented to. Even though he was allowed to treat me any way he saw fit he had to live with the consequences. Even if I said I would never leave and he could do anything he wanted to me that didn’t change the fact that I flinched really hard sometimes.

He was my white trash prince with all the violence and anger that indicates. He was also one of the kindest people I’ve ever known in my whole life. With every passing year his violence towards me was more calculated and surgical. He wanted to hurt me to shape me to be more pleasing to him. I was willing to follow anywhere he lead.

I don’t think I can have a relationship with a bad guy again. I’ve had a few encounters since I started dating. A few of these men have been deeply problematic. I’m not going to recount the wild stories right now. That’s not the point.

The point of this essay is I am having a very hard time accepting the way I am sinking into this relationship with Gentleman because he is so easy to be around. Instead of flinching I keep finding that instead I am softening. I usually start crying because I am trying to communicate about somewhere that I am worried about us developing a problem. Every time he hugs me and waits for me to be done and we move forward without there being a problem.

The fact that I want to trust him as much as I do makes me wary. That feels dangerous. He would like to be more helpful to me. He’s that flavour of man. I like doing homey care taker things for him and he’d like to do pieces of them for me. So far I am flinching away because it would bring about possible contact with the kids and it is too soon. I like arbitrary time lines. Why? Because they give me structure and purpose. Because the first 9 whole months of our relationship will overlap with the first year my kids have had to live without their father.

It feels respectful to wait.

It also feels compassionate to myself to allow someone to comfort me. Of course I only want to accept that from someone I’m having sex with. Duh. That’s my way. I have always bonded to people through sex. That’s been a big pattern. My kinky friends think I am demented because I consciously and deliberately went looking for vanilla sex. I was not looking for a pervert. I don’t need to have my boundaries pushed right now. I need the gap between my boundaries and my partner’s to be vast with me far in the lead. I need it.

I need to stop looking for bad guys.

I have stopped looking for bad guys. When a couple have wandered into my life I turned them around and pushed them right back out. Instead I am picking to double down on the people who make me feel safe. If I don’t feel safe I don’t come back. It’s really weird in my body.

I felt comfortable with Noah. I felt known. I felt accepted. I felt loved. I felt adored. I felt worshiped. Sometimes I felt safe; sometimes I didn’t. He never signed on to being my protector. It was explicit. We did the best we could by one another. In most ways I still feel absolutely convinced that he was better than I deserved.

I’m listening to a lot of songs that have been big parts of my personal soundtrack through this life. The Day Before You. The First Cut is the Deepest. I feel like my brain is trying to resort every part of my memory. There is now an end to the story arc with Noah. The songs that he sang to me with passion and fondness and tenderness cut like a knife. There’s a bunch of Irish songs that fucking wreck me. Shortie keeps asking me to play them. Noah had such a beautiful voice. He sang me to sleep or read me to sleep or talked me to sleep for two decades.

If I include the time we were engaged Noah and I lived together for just under 19 years. I lived with my cat Puff for longer than 19 years. There’s my kids; we’ll see how long they stay. My current cats have been in my house for 5.5 years. My mom’s longest stretch with me was 5 years; she also had a 3 year stretch. All the foster homes were crammed into the 10 years in the middle. I had a boyfriend I lived with for 3 years. I never made it longer than 2 years in Auntie’s house and my mom was there with me. The fostering without mom never lasted longer than a month.

I’m scared. I notice this all the time. I’m pretty terrified of being vulnerable. I am going to be. I’m exhausted all the dang time lately. I do need to start being more careful with my diet again but it’s not mostly that. Mostly I’m deeply burned out and depressed and I’m swimming through an ocean of grief. We are coping but I’m not at the top of my game. A lot more than usual is falling through the cracks. I can’t be more effective or efficient. I don’t have it to give. I’m seriously operating beyond capacity every day. I feel awful. I’m disabled and I’m doing my best to be two parents. I am getting mixed results shall I say.

I don’t feel like I have a choice. I’m aware of all the things I’m not getting done that other people manage. I feel like a loser pretty much every minute. I’m exhausted all the forking time. I feel like I don’t have a brain. I have started avoiding phone calls like they are electrical shocks.

I feel guilty for trying to construct a self that will move forward. I feel guilty because I feel like I am abandoning Noah. I’m not. I’m acting like the internet: I am routing around damage to keep going. I don’t get to stop. Maybe not ever. I am going to have to slow down a lot. I have less to give without Noah coping with all the awful parts of adulting. It’s funny because he thought I coped with the awful parts of adulting for him.

We’ve been doing a lot of talking in my house about the difference between codependence and conscious interdependence.

We’ve been doing a lot of talking in general. All of us are struggling without Noah around to talk at for hours a day. We have spent so much time together as a family and every single day is a reminder that our future looks nothing like our past. It’s really weird when I notice somewhere that I am not being difficult or blowing up in a way I commonly would because I’m not reacting to Noah. I’m not trying to head something off before it bugs him. I’m not trying to manage my emotional range for his benefit.

I didn’t expect that losing Noah means I get to soften. I don’t have to be defensive of the things he wants me to be defensive of. I can relax and not look to him to see how I’m allowed to feel. Our rhetoric was that he was watching me. I watched him too. A lot of the way he learned to control his affect and mannerism was because he was trying to not trigger me. I did the same kind of thing but it didn’t make me softer and kinder. It made me sad and wounded. I don’t want to feel like I am healing from Noah but in some ways I clearly am.

He is very much the best relationship of my life. There were still very hard parts. I’m not sure what my future looks like but it’s not going to look like my past. I won’t be going back to the day before Noah. I am not who I was. I like being Krissy Gibbs so much more than I ever liked being Krissy Archer. I am looking forward to when I will have been Krissy Gibbs longer. 6 years and 3 months to go. I’m so sad Noah won’t be with me.

I would not have accomplished 1/4 of what I did without him. He was always able to believe in me when I couldn’t believe in myself. Including believing that if he insisted hard enough I would somehow become monogamous in my spirit. There is no way to count the hundreds of hours we spent doing hypnosis and NLP actively trying to get me to only think of Noah.

This is how I know I am not a computer. I cannot be programmed. I cannot conform no matter how much I would like to. I am different. I would like to be able to comply and make people happen but I don’t have it to give. I’m feeling really bad about that lately. “Lately”. I have always felt bad about this. At this point I suspect that most of the disappointment for my failure to be shaped like cookie dough is only in my head. Other folks are fairly cheerful about taking me as they find me.

Other people do not look at me the way Noah did. They don’t look at me and see so much potential, if only I would stop doing _______________. For years I have struggled with how much I felt like I had to be the motor for all of us. I had to push people to get up and start chores and fucking leave the house sometimes. Noah was a cave troll. His children enjoy being such as well.

I feel like my motor has come to a stop. For a while I was hunting for sex and that gave me a huge boost of energy. Now I’m too weary to muster the energy to go end things with the last one I added. I am struggling with finding the unmitigated good from the sex with Gentleman because I am so anxious about fucking everything up. It’s pretty ridiculous of me, yet also predictable. He’s really happy to spend time with me. He takes all the opportunities he gets. He would like more. I don’t need to feel anxious. It’s silly. I’m being silly. I’m the one holding the brakes and I’m doing it for really good reasons. I’m doing it to create a safe container for my children to mourn in.

Noah was such a good father. It is going to be important for me to keep my mouth shut about the ways I’m processing Noah as a mixed figure in my life. They need Saint Noah and I need to let them have him that way. I also need to acknowledge for myself that he was a human. He was a human I loved with my whole soul. I would have stayed forever. I was comfortable with the ways we hurt each other. It was home. It was the safest home I have ever had. It was the home in which we both felt the most loved we ever felt in our lives. We were broken together and I’m not sorry.

Noah took in a feral stray and turned me into a pampered and well tended pet. He made me believe I don’t deserve to suffer the maximum amount every day of my life. That counts for a lot. Maybe someday I will even forgive myself for not being monogamous. I’m not. It’s not in my nature.

Maybe someday I will have a life in which I don’t feel like being this thing is the reason that I am irredeemably bad.

Maybe someday.

Life isn’t fair

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It’s not a stretch to say that my mother in law and I didn’t get along well for the first 15 years of my marriage. At that point she decided I was staying and our relationship transformed to a large degree. She’s been very nice and accepting over the past nearly 4 years. I suspect part of that had to do with me supporting her through her mother’s end of life stuff. Her mother was a hard woman.

Since Noah died I have been talking with MIL a lot more often. When I want to feel that moment of shared pride in my spawn, she is the only person who feels available for sharing it with. I used to not send her an email a month. Now I send one or more most weeks, just sharing a picture of the kids.

She is due to go into surgery a few days after me. Her surgery is much more difficult and mandatory for survival. I’m worried. There’s nothing I can do to help. I’m talking to her more. I’m sharing more of myself and my life and my kids. Maybe it will be incentive. I don’t know though. I’m not feeling particularly able to keep people alive right now.

I’m scared to get to close to anyone because I feel like it will be my fault they die. I am so bad that I deserve to be alone and anyone who gets close to me will get lost in that mess. I’m not actually this powerful but paranoia doesn’t care about reality or logic. It feels true.

I wake up almost every morning and cry because he’s not there with me. I’ll be honest and say that the overnights I’ve had don’t have as much crying. That’s part of what I like about them. I get to have the experience of looking towards the future instead of crying about the past. I can’t change the past. Maybe I can change the future? Will I be responsible for a lot more deaths? I’m not over my brother or my dad. If I could endure more pain maybe they wouldn’t be dead. I know that Noah died from a freak accident but it feels like my fault. If he hadn’t wanted to come with me to help me feel better, he might still be alive. I don’t think that will feel easier anytime soon.

I feel so much shame. I failed to protect Noah. I feel like I don’t deserve to ever have a real relationship again. I am not good enough at looking after people. This feeling is making my day job really complicated.

My children take up the vast majority of my life and I’m not feeling like I am good enough, strong enough to take care of them. This hurts so much. I need Noah. I need him to be the backstop. I didn’t fuck up a lot but when I did he was there to prevent it from going too far. What am I going to do now? Just be perfect? I don’t think that is in the cards. I am so very far from perfect.

Yesterday was a good day though. The kids and I spent the day going through house stuff working towards a purge. We own too much. We cannot take care of it all. A lot of it has to go. We managed to do it without being super upset. We have a long way to go before our house is manageable though. Now we have 27 days till my surgery. We need to get a lot of this done so that maintaining the house is easier when I am incapacitated.

I have to make the future easier.

Mostly I am gobsmacked because my income (thanks to Social Security) is about the same as it was as a teacher before I married Noah. Time stopped for me in an uncanny way.

Past me deserves 9,000 gold stars for saying no to all the friends who invited us on expensive holidays or who wanted us to get a reverse mortgage so we could own a much larger house. I made financial choices that will keep me safe for the rest of my life. This is something I learned by watching my mother fail to do it. You have to pay Future You first.

Noah wanted me to play lottery tickets with him (metaphorically) to try and get rich. We did a round of Angel investing with Paul Graham’s company. I told Noah that the guys he wanted to support would not last 6 months. They were sloppy, unmotivated, and had a crappy idea but he insisted he trusted them. I was right. We lost that money. He let me handle investing the rest. I did well. Looking at the long term money freaks me out. I need a bridge over the next 20 years. 10 will be covered by Social Security. Then I get to levitate for a while. I think it’ll be ok.

I think I will save so well that it won’t be a problem. It’s time to teach my kids how to live like we won’t have money for a good long while. I know how. I’ve done it before and I can do it again. It will be good life skills. Life below your means. Scrimp. Save. Do without wherever reasonable. We have plenty of stuff for the next few years.

Time to hold my breath and see if I can turn this one year of savings into ten over the next ten years. That’s not so hard. I can do that. Just take a little off the top every month.

It’s not so hard when you have the privilege of earning enough to cover your bills plus having discretionary funds. I used to skip eating to do this and I will never be in that position again. I will never have to skimp on food again.

That’s what being rich means to me. It means I don’t have to worry how much food costs. I just buy it. It feels scandalous and cheeky.

I get overnights because Aunt Jenny is taking Shortie one night a month. The older kids ignore me in the evenings anyway. They are online talking to folks. So I go out. Of course I’m seeing more than one person. That will be true for the rest of my life. My kids aren’t going to meet people quickly. I have a horror of that dynamic.

I’m going to be shy for a while before I get around to writing about my love life with great explicitness in this space. It’s feeling scary. I’m already going full speed elsewhere. Here it feels scary in a different way. Not everyone here is a giant weirdo who would love to opt in to explicit details about my sex life.

The last few years have been a wild ride of self discovery inside my marriage, outside my marriage, and now in this post-marriage time. I have never been one to sit in stasis. I am meant to grow wildly in all directions. I am meant to explode with energy. This has been true for my whole life. This is a thing that people have commented on explicitly for my whole life. Now I need to figure out how to manage that without Noah shaping and directing my growth.

I’m pretty scared.

In the past few days my son said, “I always thought we were your epilogue. Now I see that we were your intermission.”

Whoa.

Noah’s goal and plan was for all of us to be alone in this house together as much as humanly possible forever. He liked the Pod. We all liked the Pod. We have so much acceptance and love and support inside of it. We take care of each other. We are careful with our words and gestures and physical movements and expressions of anger. We know that we will deal forever with the consequences of strife within the Pod. We have all created this bubble together and people coming into it are a big deal. We treat that like a whole family negotiation.

That’s going to be complicated going forward.

Things are going to be a lot more complicated going forward.

Things are going to be a lot simpler going forward. An awful lot of everything revolved around Noah. We stayed home as much as we did because he wanted all of us to do that. He wanted to be at home and he wanted us with him so he wanted us at home. It was striking. He genuinely wanted us around existing all the time. We validated and motivated him. His life was a shrine of us. It has been fascinating living in a family this deeply enmeshed and wrapped about each other. This was not something I had background training for. This ended up being a whole different thing than I had planned for a bunch of reasons.

Home educating continues. We are starting to get back up to speed on doing academics regularly at the table. We are always learning but sometimes we can do it in ways that produce tangible results and sometimes we just learn for the sake of learning for a while. It requires a balance to live in the world. We are drifting through our grief. We talk about it a lot. We are not bottling up our feelings. We cry together. We are all writing separately.

I wonder a lot about their futures. They have a tremendous number of skills and talents and they are broadly and diversely educated but they are not going to fit in to a world of checklists. Their lives have been constructed around their individual needs and the absolute limits of what I am capable of providing. It is fascinating, now, to look at the work I see ahead of me with my youngest. My older two are settling into their own stuff and don’t need much of any input from me. All of my plans for this stage with our daughter revolves around Noah and his needs and his limits.

Balancing a house of five autistic people with weird limits and needs is a lot of fun. It is dancing on the head of a greased pin. You will fail to perfectly accommodate everyone and that is the lesson in that moment. That’s when I get to talk about distress tolerance. That’s when I talk about how to be in control of your nervous system even when you can’t control your environment. That’s when I talk about putting on a mask for social safety. Smile. Appear pleasant and non-threatening. Be curious. Put all of your panic and stomach pain in a box and put it in a closet in the back of your mind. We’ll deal with it later.

We do, in fact, come back together to deal with it. It’s so real. Compartmentalisation is a motherfucker.

I feel a lot of guilt, sometimes, because I am training my children in how to mask. I’ve been told it is similar to ABA therapy. I do know that I am a behaviourist. I actively teach and practice DBT. This is relationship oriented therapy. It is exposure therapy in a non-clinically valid method.

The main way I train my children is to take them on long journeys through many different cultures and settings and I help them learn how to evaluate what they see. What clues exist for how to behave? What patterns do you see? Does one group of people walk a lot faster? Why do you think that might happen? How do people manage walking through crowds? What can you guess about the cultural values based on these actions? What do you think they mean?

We do some searching on the internet to see if any of our guesses were close to correct. Sometimes we pat ourselves on the back for being able to easily spot something that is a major culturally point of pride. Yes. It really is clear.

My son told me that he describes our family as being full of autistic people for whom “social interactions” is our main special interest. I hadn’t thought of it that way but he’s right. We read books and watch shows because we want to talk about the social interactions. We want more representations in our brains. And we analyse what is happening in our own lives over the dinner table. We don’t grill people whether they like it or not. We all like sharing.

“So I was having this chat with someone and I said, _____.”

We then talk it out. “Ah, did you consider the thing from the angle of someone who is (list of various demographic markers)?”

“Oh. Shit. No.”

I love my house so much. We don’t put people down much but we do question everything. We are nosy and invasive and simply present.

It’s fascinating watching the teenagers start to develop their own sense of “What happens off screen is no one else’s business.” People are only entitled to know the things about you that you choose to share when you are in a room together.

Wow. What is up with all this drivel that comes out of my fingertips then? What is up with the whole darn internet? I choose to offer the world cheat sheets. I am a deeply complex person and if I don’t write about it I will never have the ability to share all of it in another form. I would only be able to share in sound bites of sanitised nothing. I do not want that in this life.

I am not an easy person to know but I want to be known. I have always wanted to be known. Being known is what has lead to increasing levels of safety for me in this life. I am a weird motherfucker. I also work hard to give more than I take. I try to conform in the ways I must. I am trying.

I am also a person who has been let out of a cage. I loved my husband and I would have born the price of staying married but I was not made to be monogamous. It was a point of enormous strife between us even when I wasn’t doing anything with anyone. It made him feel abandoned and betrayed.

I have no idea what the future is going to bring. I am betting on more growth and more change. I won’t always like it. A lot of it is going to hurt. That’s ok. I was never promised an easy life and I do not expect to have one. I am going to have a better life than the one I was brought up to expect. I am going to have integrity and honesty that did not exist in that set and setting.

Every individual family has their own vibe. Their own levels of awareness around sex and sexuality. I am struggling with the fact that my levels in California depended on their being enough ambient sex positive, sexuality displays that I could have a lot of theoretical discussions. My sex life never had to come up. Here I am going to be the first example of poly that my daughter really groks. This alarms me. That’s a lot of pressure for figuring out what “sharing information respectfully” means. It will be fine. I’ll navigate this like everything else. We are already the weirdos for a lot of reasons. It’s not going to make that big of a difference in the long run.

It feels like a life affirming thing to do at this stage. I am trying to build deeper connections than I am going to be able to access from my local friends. Boundaries are complicated things. Life is long and I would not be surprised if Noah is not the only partner I watch die. That’s scary. I’m only 43. I might have that happen again. Life isn’t fair. I’m going to experience a lot more loss. It’s really scary. I hate going under general anesthesia. It’s really scary.

And for the first time in 18 years, Noah won’t be the person who takes care of me. He was not good in the emergency crunch moments but he was awesome at babying me during recovery. Well, he got awesome because he did not like watching me crawl around the house doing the chores he hadn’t gotten to.

This time I am doing a big purge of stuff before surgery. I need to have less work to do. I need to have the ability to not fight with my baby over stupid stuff. I need to create a “Yes” environment. It will make a lot of things less stressful for a lot of people. We’ve had too much for a while. It’s time to do it differently.

Do you own your stuff or does your stuff own you? How much do you really need? I’m thinking on this really hard. I keep wanting to say “we” as if the kids somehow share responsibility but no I have too much stuff. Because I now own everything that was Noah’s. I’m having a lot of feelings about that. But it’s really past time to start the day.

Too many feelings.

Keep resting

1 Reply

It’s weird having a 16 year old. In many ways it feels like I should have this person basically cooked and ready to be an adult. Yet sometimes it is glaringly obvious that he still *needs* me. I’ve been antsy during this surgery recovery. I really *want* to get up and work/exercise more. I am struggling with the bullet train inner monologue of “If you sit around all the time you don’t deserve sympathy/help for your health problems. You aren’t looking after yourself so you deserve every bad thing that happens.”

He’s been talking a lot about how scared he was when he watched me have massive life threatening bleeds after surgeries. He’s kinda fucked up about it.

I am currently in the period of time where a normal person *should* return to exercising.

I am still experiencing pain. I am now in the window of time where I normally start to push myself.

Then either my skin opens or a blood vessel bursts. It’s part of a genetic condition. It’s predictable. Especially since it’s happened *in my body* several times. It’s not paranoia. It’s awareness of risk.

This is where “invisible disability” stuff is hard. It’s hard to predict and make general statements about. It’s hard to exist in a way that allows people to understand when you do and don’t need help that is friendly and kind and gentle enough that they don’t get mad at you.

This will be awkward as a transition

2 Replies

For a while I am not going to know what to say or how to say it. I’ve been carefully limiting my writing for specific social media audiences over the past few years. Now I’m pretty sure some of my hate followers are getting notifications because they are subscribed to my RSS feed. That’s always fun.

It’s hard to figure out how to talk about all the things I need to talk about. I’ve been avoiding talking about parenting for a long time even though that is still the biggest part of my life. I am not feeling like the best parent lately. I’m not the worst but I don’t look at that bar.

I’ve been blow drying Middle Child’s hair when they shower for a while. It’s been one of the best ways for us to have tactile connection that doesn’t involve me being bossy or a controlling. I’m just taking care of them in a way they like that makes them feel special and pretty. (Their hair really is gorgeous after a blow dry. It gets awkwardly tangled when it air dries.) I haven’t really asked if they want me to, I just show up and take over. Maybe I am being an asshole. It’s the only part of their self care I am still involved in. I actually got them a birthday present that is a hair dryer/curling iron set. They might take it in their room and that’s the end of us sharing this. It’s possible. It isn’t my goal. I like playing with their hair. It reminds me so much of my mother’s hair and this feels like the only piece of that relationship I get to keep.

Youngest Child gets the short end of the stick in an awful lot of ways. I haven’t managed to create the same Wonderland for her and I regularly feel pretty bad about her not having the gaggle of friends we had in California. It’s hard to make friends here. I have had good inroads with a few folks but the majority of people I have met are not keen to see us again. I feel like her being my daughter is the worst thing I’ve done to her. How can I create a community around her when I am the problem?

I have some additional worry right this second because I restarted birth control for the first time in 17 years. Ew. But it’s better than having a baby at 43 or 44. I really don’t have it in me to restart the clock again on parenting. I love my kids but I’m running very low on reserves for being patient and giving and understanding around the clock 24/7. I am worried about the hormonal fluctuations that may come. I am not exactly so stable lately that it will be reasonable to tell what is coming from the meds.

I keep having these things happen that make me feel flattened and worthless and empty and then I need to hurry up and recover because there is work to be done. People need support. People need me to be giving and working and listening and supporting and that’s not a thing I do well when I’m flat and feel empty and worthless.

I worked 29 days in June. I had months of intensive work leading up to that. July was supposed to be a recuperation couple of weeks before surgery and instead I was sexually assaulted. Then I had surgery. Then came dealing with the police. I popped a stitch because my blood pressure was so high during the police interview. They rushed us to the hospital at the end.

I didn’t die. Woo. That’s not unexpected event with this surgery. No biggie. Just keep on moving forward. Sometimes there is a sudden massive bleed that stops after a bit in the first two weeks.

I shouldn’t exercise until October according to my surgeon. I’m going to listen to him. This is hard because exercise is the most healthy form of stress relief I have in life. Everything else is harder on my body. I am feeling fairly overwhelmed with stress right now.

I should be restarting interviews for Vicki’s book and I feel overwhelming panic at the thought. I don’t know how to set myself aside to that degree right now. I feel like pieces of me are leaking out all over the place. I feel utterly uncontained. I feel like I have been trying hard to shove all of myself in a box and I just can’t anymore. The closet has not been working well for me.

I am feeling disconnected, like the pieces of me are stored in different rooms all over a hotel and you have to run up and down the stairs a lot to gain access to the different pieces. It’s exhausting. It feels like integration is just too high of a bar to ask for.

I’m struggling with feeling coherence in my brain. I think coming back to my website will ultimately be good because I will get back to feeling comfortable with a full speed brain dump but I’m not there yet. I’m looking forward to it as a contrast with social media.

I like thinking of my writing as a full on stream of consciousness dump. I embrace the inconsistencies and contradictions as part of sharing thought. Part of what is going on for me right now is I am trying to figure out how “in the closet” I am going to try to be going forward. I’ve been pretty closeted, secretive, and evasive since I moved. I’ve tried hard to keep a lid on my history.

Now the lid is lying on the floor somewhere and ooze is streaming out of that hole.

I’m not going to retell every story, I have an archive for that. Instead how about if I just figure out how to talk about who I am now and why I am doing the things I am doing. It’s all so convoluted and stupid. I feel stupid. I feel like I’ve been in a very stable place and I shouldn’t rock the boat. The thing is, I’ve gotten to the point where loneliness is eating me like a cancer. There is so much that I have been suppressing or hiding or avoiding for years that it is a problem for me to continue doing so. I am hurting myself. I have to put significant effort into growing my community here.

That’s going to be hard due to physical limitations over the next few years. I haven’t talked about it here much (or at all) but I’ve had wicked hemorrhoids over the past few years. The surgeon said he couldn’t understand how I ride a bike like that. I shrugged and said it is my normal. Now that the big grape sized bits are gone I’m left with some much more modest skin flaps. These are going to be removed next May. Each surgery will involve a 10ish week time span afterwards where I cannot exercise at all. I can moderately walk but not too far. (Too far being above ~6 miles in a day.) I did walk more than 10 miles recently. I was flattened for 2 days afterwards and it still kinda hurts extra 5 days later.

I’ve got a lot of rest time ahead of me in the next 12 months. Ugh.

Yes, I want all the hemorrhoids gone because I’m tired of bleeding if I have to use regular toilet paper for a whole day. Also I desperately want anal sex back. It’s just not possible with the damage to my anus as it stands. Having kids is rough thing on a body. EDS means all forms of prolapse are more likely. I am going to try to be assertive about dealing with my prolapse stuff going forward. It’s not cool to have things falling out of my body. It’s sorta weird knowing that I am going to need to push to have anyone care about that.

The leaves are changing colours and falling off the trees. It feels too early. It feels like I have simply missed summer this year.

We have a six week block mapped out with a fairly vigorous schedule ahead of us. I won’t be exercising a ton (I am definitely failing to meet any kind of goal for this year) but I will be keeping the trains going and pushing people through their commitments. The kids are all adding additional classes/activities/tasks in ways that will expand their exposure to people in town. This feels really important. A lot of it has to fall on Noah because I can’t cycle. His legs and ass are looking a lot hotter lately. Let me give myself a little pat on the back for helping to push him in that direction. Oh it’s a joyous sight.

Noah and I have been talking a lot about polyamory. If you don’t know that word, in very short it means having romantic love with more than one partner. When we met we both had other partners. We have opened and closed our marriage a few times for logistical reasons. I refer to our recent, by far longest, span of monogamy as the Choke Chain. It’s capitalised because it’s a formal title for a concept and stage we went through. It was in response to a really bad period where everything around polyamory went shockingly poorly. I’m not rehashing that right now. I don’t have time.

It is hard trying to talk through all of the mistakes we have made and all of the times we have made unkind choices. It feels like a lot of “bringing up old stuff” but it’s important. We are talking about our different sets of reactions and what was spurring us in one direction or another. It allows us to understand more fully why some parts were harder or easier for the other. It gives us a chance to make better decisions going forward. It’s not always as simple as just waving your hands over something and saying “just don’t do that”. Which that? What part? We have been using that to mean having an open marriage but I do not believe that is sustainable.

See, this is where I stop and think “How would I say this to a random stranger in town?”

I believe that human beings are a species with a wide and varied range of sexual appetites. Much like our primate kin we have some who like monogamy and some who like one male and multiple females and some females with a lot of males and some who like to mate through sex with absolutely everyone without regard to sex.

I am no longer physically, emotionally, or mentally suited to having a truly large number of partners at any given time. I just can’t anymore. I don’t think I can continue only having one partner though. I know it is selfish. Literally that’s what makes it such a tremendously good thing. Yes, falling in love with someone who isn’t already part of my family is selfish. It is individuation from the pod. (We refer to ourselves as a whale pod.)

I need more emotional support. Noah is an amazing husband. He gives more support than anyone has the right to expect or demand. People are supposed to have a web of people who support them in ways big and small. I feel ashamed of this, and I shouldn’t, but I do need the emotional intensity in my life of having more than one sexual relationship. Sex does bond people. Well, it can.

This is where it is weird to think about explaining this to a random person in town. Oh golly. Sex creates hormones. It can be done fairly casually to get endorphins and dopamine followed by a high five and a fond farewell. It can also be done to raise oxytocin and fall in love and bond in the way that creates family connections–with or without sharing DNA to create a child.

I am slightly weirded out by the fact that Noah has literally colonised my body and remnants of his DNA and the DNA of our children are now parts of my permanent body. Being a carrying parent is fucking weird. His body wasn’t highjacked. WTF?

I need more intense connection in my life. I need it. I am not managing to create that very well without sex. I am also deeply uninterested in the drama that would come with having sex with someone who lives locally. I just can’t be arsed to care enough about the sex to want to deal with fall out. Nope.

That leaves long distance relationships with people from my past. I have very little interest in being back in the US. That narrows the pool considerably. As it so happens, luck brought someone back into my life. Someone who is quite invested in making sure I maintain my family life.

We are a species that has evolved to handle matters of bonding and creating support networks of very diverse sizes and shapes. Many people are still happy doing pair bonding and having involved grandparents/aunts/uncles/cousins. That is not an option for everyone. It leaves a lot of people out entirely. That’s a complicated situation. I know that in Scotland a lot of the answer is “ask the government for help” but this isn’t that kind of thing. I need community. I need deep emotional connection. I am also a hard nut to crack. For all that I will tell my story to anyone who asks I don’t volunteer it much in person.

I need to be known in an intense and deep way. I don’t trust someone easily. I assume people are not interested in knowing me more deeply because they don’t know what they are signing on for. I always assume that I am going to be too much.

You just keep going

Do the best you can