Friday, September 16, 2011

Who Picks up the Slack for Me?

A dear friend of mine asked me to post this for her as she felt unable to risk posting it herself. Can any of you relate? Can you help? Or even just comment to let her know someone else in this crazy world we live in, gets it.


Image from visualizeus

I recently saw John Elder Robison (author of ‘Look me in the Eyes’ and ‘Be Different’) speak. He was brilliant and inspiring. At the end of the discussion they had a question time and there was a lady in the front row who asked, “I am a wife of someone with Aspergers and my question to you is how does your wife stay married to you?” 

This sounds incredibly shocking doesn’t it? And for a moment I gasped and then I realised that John took no offence to it what so ever. In fact he answered that she did not stay married to him, but he found another wife who did. He answered that for their marriage (the second and current marriage) his wife has a high emotional capacity where his is low and he has the high logic capacity and hers is not as high, so they are a good match. Also that she does not expect things of him that he cannot give, she knows his limitations and they have open communication, she doesn’t get cross at him for things that he ‘should’ know. He expressed regret that he couldn’t help this lady more in his answer and mentioned that he is asked that question often from women all over the world.


I sat there all inspired about how awesome Aspergers is and thought to myself, “yep, that’s so true. Don’t expect things, you need to be specific and ask for them”. Feeling all smug I drove home.


I have a son who was diagnosed with Aspergers nearly 3 years ago... he is 8 now. My husband as a child was diagnosed with ADD but since receiving my sons diagnosis we have figured that perhaps that was wrong and we strongly suspect that he too has Aspergers. I think that the best way to describe the ways in which his ASD (or ADD officially) affect him is that he expects things to be done ‘his’ way. He thinks something and says something and expects that instantly you will understand and agree. There is no grey area, if I have not heard properly or the question is not said explicitly enough for me to understand and I ask for clarification I am met with exasperation! Things are meant to be done a certain way, to do them other ways is met with great frustration.


Rules... not written in stone nor a poster on the wall but rules written in the fabric of his life which we need to comply with. Internal focus, incredibly intrinsic focus. I will stand and listen to a discussion for 10 minutes about something in particular that has happened or of interest...then I start talking and at times he just walks off, or he interrupts or changes the subject. So I stopped talking. Then I am in the wrong for I do not share, I do not discuss things with him.


Questions are asked in statements which come across at times incredibly harshly.”Didn’t you get milk today?” instead of “Did you get milk?” When I point out the different ways these two sentences make me feel I am questioned as to what the difference is? Why should he ask if I got milk when it is obvious I didn’t because there isn’t any there! My thought to that is (it used to be the answer but then the argument following and exasperation at my not understanding his logic and point of view is not worth the time) ‘why even make the statement then if you can see that there is no milk!’


His mother is from the old school of doing absolutely everything for her family. Everything. I admire the loveliness of her home and the way in which she brought them up securely and comfortably with beautiful food on the table each night. I do not admire the fact that her son had developed a preconceived notion that that is the way things should be done for him for the rest of his life (a notion which she told me I had an obligation to do for her son... we haven’t talked much since that day). We married young and despite my voicing the fact that I did not grow up in a house where the woman did everything and therefore would expect him to do things around the house etc, my words obviously fell on deaf ears. Or did not fit his preconceived rules about the role of a wife and mother.


Standing in the kitchen he will say, “just look at this place! It is such a bloody mess!” and then he will turn on his heels and walk out of the room. His plate has in the last year been transported from the table to the bench after dinner (after much nagging to change the before behaviour of simply leaving it there and walking away). I could push and nag to get dishes done, but more times than not the banging and crashing of the plates and cutlery as he does it either smashes one (and it is never his doing, always a cause of the dish or the way I had stacked them) as he expresses his disgust at doing them in much the same way my 6 year old expresses his disgust at packing up his toys! It is not worth the hassle.


The world owes him much. I owe him much and it is my job to make sure that all of our worlds just keep on flowing and ebbing along nice and smoothly. I do all the sports runs and therapy and school runs... I also work. Anything to do with the kids... I do. I am not bitter about this, I love my kids more than anything else and would do anything for them. I love my husband too... but I am not sure how much longer I can be all of their alls.


You see I am diagnosed with depression and have recently had an increase in my meds which has caused a decrease in my coping skills! Clearly there is something in me reacting to them and I am seeing my therapist to discuss it today, hopefully if I change meds I will regain some control... control... which has at times over the last few weeks been completely void in my life. I cannot cope with the day to day. I get through the things that need to be done and then am too exhausted to deal with the things that should be done and well need to be done but if no one is coming over then they can wait.


Dishes, washing, sweeping, vacuuming... housework.


My husband knows of my depression and downward spiral and yet other than trying very hard to regulate himself so that he doesn’t say too many negative things to me he has done little else.


This morning I went to pay for my daughters swimming program through school. The note had been lost under the car seat and we had not paid the deposit for it. She cannot go as a result of this, it is too late. I got to the car and drove off past the school before the tears began to fall. By the time I pulled in the driveway at home I was sobbing. My toddler asked me if I needed to wipe my face and I answered "yes I do honey." My friend is coming here in about an hour and a half to watch my toddler as I go to the therapist and my house is a complete disgrace. I stood at the bench, barely seeing through my tears and feeling like a complete and utter failure and the thought popped into my head...


Who picks up the slack for me when my world is completely falling apart?


That smug version of me, agreeing with John Elder Robison that day and the advice he gave to the wife of a husband with Aspergers, is currently living somewhere else.
Right here, right now I am her best friend, her carbon copy and I am wondering... how do I keep doing this? How do I keep taking the constant negativity, managing meltdowns from all the children and my partner, always trying to do and be everything because it is easier doing that than putting up with the arguments or discussions about it? To leave him feels like a betrayal as he cannot help the way he behaves... but then I think of the therapy I am doing with our son and wonder why it is that he is unwilling to try? If his son can then why can’t he? But to leave feels just as hard as to stay.


Are you married to someone with Aspergers? Are you that lady on that day wondering, how do I stay married in this situation? Do you understand?



on behalf of a friend.

26 comments:

  1. First, many many hugs to your friend, Madmother. I think we've all been there at some point or other, special needs or not. Asperger's or not.

    Second, you need to hear this: It is OK TO NOT BE THE BE ALL AND END ALL. So the dishes wait another afternoon. You know, it's time for the hubby to learn some coping skills. "Look at this house, it's a bloody mess!" means he's clearly aware there is a problem, and has the capacity to deal with it. Tell him this. Tell him in the Asperger's language he understands.

    But it is OK for you to lose it for a few moments, and it's perfectly ok for the laundry to sit unfolded. Your friend is going to understand that you're struggling, and odds are, if you tell her so, you'll come home to find some of those dishes washed, or put away.

    Honey, ask for help. Believe me, I know this is so hard to do... I've been there. I've struggled through the clinical depression, too, and have had those days where I just can not do it anymore. The biggest, most important thing for you to do is *ask for help.* Your mom, your Gran, your best aunt Betty, anyone who loves you.

    And you know, if the kids aren't doing it already, it's time to recruit their help around the house too. Everyone needs to pitch in. My guess would be that the kids aren't, because they don't see Dad doing it either. Make a chore chart. Include Dad on that chart. Make it clear those are his jobs around the house, and that you expect them done.

    Talk to someone, honey. Even if it's just a stranger-mom-on-the-internet, talk to someone. Build a support group around yourself for those bleak days when you just can't get out of bed. And know that you are not alone.

    XOXO

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  2. I understand, but I don't have time to talk. I'll get back with you. I'm crying for you so you don't have to at least for now.

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  3. First, I am much older than you way past retirement. Second I have never dealt with anyone who has Aspergers so I have no advice to offer in dealing with those aspects. However, all my life I have been the one expected to do, to keep up and to make sure everything is fine for everyone else. From the title of this piece I rather expected it to be that kind of situation. I have learned that I can bottle it up only for a limited time (that time varies depending on the situation but it is limited.) The final demise of my first marriage came when I asked him to take out the garbage and he informed me the outside cans were full. So - I should just stack it up in the house? The man was bright, with an MBA and he couldn't figure out how to put it in a black plastic bag and store in the garage for garbage day? Big black plastic bags did exist even back then. I decided I had made a fatal mistake and DONE TOO MUCH because I could. That marriage lasted 12 years, the second one is on 39. I'm now doing almost as much as the first time around but for way different reasons. Husband has multiple health problems, 30 years as a heart patient, diabetic, and cancer but still keeps going. He does what he can do and that's what important. So what do I suggest- try to ascertain exactly what your husband COULD do, and the kids and as the poster above said enlist their help. Point out you are out of energy and drive and it is their time to step up and help out. Drive home the point repeatedly, even with MIL if you have too. You are not she,and you don't have to be. If when all is said and done you can get no cooperation with what you honestly feel he could do- then I would at least think seriously about walking. One less person to care for lightens your load somewhat at the very least.

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  4. My DH was diagnosed Aspie in his late 30's, after we were married. We already had our first boy, he was 1yo and I was preggas with my 2nd. I pushed him to get anger management therapy as he became quite aggressive towards (and uninterested in) our 1yo, and i was really worried I had another on the way. What if his aggression became violent? Why wasn't he a better dad, and so on.

    He said his mum suspected he was Aspie whilst he was in his 20's, but they never acted on it.

    I could never work out why he'd come home from anger management classes feeling even more justified in demanding what he wanted!! Apparently he was in a group (substantially) court ordered (violent domestic offenders) participants who kept saying if only the women listened to what they wanted more, they wouldn't have to be violent!!! So they were told to go home and request what they wanted in a better fashion. My DH's problem was NEVER his inability to do what HE wanted!!

    I went in to see the counselor holding the class and said "what the hell is being said in this class, my DH is getting worse!" He told me to give him time, I said it's been 6mths, fix him or he's out!!! I was so "over it".

    We finally got sent to a specialist to get a diagnosis of Aspie, and it's been somewhat easier since then.

    I'm in Melb, and you can email me direct via my blog (A view on design) if you want to chat more.

    In reality, no one will ever get your slack. I agree with the other advice you've got above, get help. We get absolutely none (for free! from family/friends) ie. we pay for a babysitter 10hrs a week, and I have a cleaner 3hrs a week. It's not much, but it makes life easier.

    My 2nd child, a girl, was diagnosed autistic at 2, so you could say we are by no means a normal family. My DH is great with her because he says he understands her better because he is Aspie.

    I see life as a choice. I've had bad times, prior to meeting my DH, I've had depression etc. Those days are gone for me now. I really don't trust meds, but I still see my therapist every 3-6mths just to make sure I'm ok, I have to be mindful I have young kids here!

    I always say I've got 3 kids, not 2 (referring to my DH as the third kid) and I always say the third child (my DH) is the most challenging. I know that is because regardless of his Aspie bad behaviours (eg. selfish, lack of compassion, obsessions, disinterest in anything that doesn't completely interest him (like family matters!) I am relying on him to help me with our 2 kids. And you know what, he's never going to be "reliable" and that is never going to change. But I've learned to adapt to my DH's condition.

    I remember the specialist who diagnosed him said to me "you need to get your own space, many wives have their own bedrooms" and I'm thinking "who does that??? who has the room in the house!" Sounds great tho doesn't it. A place where he can't bombard me with the current uninteresting matter flying around in his brain which he believes I need to know about, whenever, and wherever he thinks of it! so annoying!!

    When I chat to him, often he's "somewhere else", I have to ask the same question (if it's important) at least 3 times before his reaction is appropriate for the question/comment and only then can I assume he has actually absorbed it. Often he's just not present.

    cont

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  5. my post is so big, I had to do two posts!!! LOL

    cont...

    It concerns me that our 4yo son is often yelling at my DH to get his attention, as my husband often ignores him too. I try to explain to him that dad doesn't mean to ignore him, etc etc...

    It is a real concern to me that your friend is having depression issues, this will surely be very difficult to cope with in her situation.

    There are so many things she can do to make her life easier, writing lists, organising outside help for her and the family, making her husband go to proper therapy for an Aspie to learn better habits for a marriage (and family) and so on.

    If she can at least make the choice to STAY in her marriage and family, that's a really positive step to surviving better.

    Also, if she can think thru the good and bad points of her situation, it may help shed light on why she is where she is, and how to make it better.

    I really hope she gets thru it. For sure, no one really understands, but she can be happy, it takes time. And that goes for all marriages/relationships, not just ours.

    xxxxxxxxxxx

    PS: I don't have anything to do with my MIL at all. But I do encourage DH to take the kids there, I just can't stand being around her.

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  6. my heart goes out to you. I too have a son diagnosed with high functioning autism and since finding this out and researching it has become clear that my now ex-husband is probably higher on the spectrum. Certainly explains a lot and I can now communicate better with him than before. I also have severe depression/anxiety managed with meds. Please remember that self care is NUMBER ONE! of your priorities because as harsh as it is, no-one else has you at the top because as you know, they are some what self asbsorbed. It is important that you look out for you!! love and hugs xx

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  7. Wow! Are you sure I didn't write this post? My husband is very much like you're and I have two kids on the spectrum. I have dealt with major depression because of taking everything on myself. Just recently I wrote a post about this very subject. After many years, I am just now learning to push back a bit, not take everything on. At one point recently, I left my house for a week because I desperately needed a break. The amazing thing is, my husband managed the kids on his own and everyone survived without me. I came back refreshed. Take some time for yourself and as another person said, don't be afraid to ask for help.

    Many hugs.

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  8. I'm not married to an aspie... I AM an aspie.

    I'd be horrified to think that my wife needed support and wasn't able to get it from me.

    Aspergers does NOT define me. If you've met one person with aspergers, then you have met ONE person with aspergers. As such, you need to be prepared for individual personality differences too.

    I'll admit that aspergers puts limits on some of the things I can do. For example, I have difficulties in many social situations but it doesn't stop me from trying. If people don't try to do things, they won't know their limits.

    Your post makes it sound like you have an aspie family who can't do household chores. This doesn't make sense. I can understand the problem of not realising that a chore needs to be done, but not the inability to do the chore itself (unless there's a social or sensory impact). Inability to do chores isn't a feature of asperger syndrome.

    I'm sorry - I know that I'm problem solving here rather than empathising - but I was wondering if you've tried putting up a whiteboard and marking some (obvious) chores/rules for the whole family (yourself included). That way you can point family members to the chore board. Aspies are very good at following rules.

    If the chores still don't get done, then it's not aspergers - it's laziness.

    If it's laziness, then it's time for you to have a good long talk with your family about being appreciated and helping eachother out.

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  9. My life has looked an awful lot like your friend's life, for many years. I won't give you our whole history - but we lived many of the same experiences, with me keeping the family together and trying to be everything for everyone, and my (undiagnosed but almost certainly mild Aspie) husband having issues related to emotional support and anger management. Our first child was diagnosed with Aspergers when he was 5; even when he was a baby, my husband interacted with him more like a brother than a father. I, too, had three kids after our second child arrived.

    Last fall, after 15 years of coping, making excuses, struggling with depression, and keeping the marriage and family together, I finally said ENOUGH. Either we would get help as husband and wife, or this relationship wouldn't survive. Now, after almost a year of counseling, we're much healthier as a couple. Some of our struggles were directly related to my husband's AS tendencies, and some were related to baggage from our own upbringings. AS doesn't exist in a vacuum; it can definitely make some relationship issues much more complicated and painful to deal with, and make some problems much worse on the spouse without AS. We needed to find balance, and redefine our roles in the family.

    GET HELP. Seek out a good counseling service, one where you can both be helped. We met with our counselor as a couple for a while, then individually, alternating weeks, working through issues past and present. We wouldn't be still married today if we hadn't sought counseling. I was blessed that my husband WANTED to preserve our marriage, and was as willing to work on his issues as I was on mine. I had almost given up; this was the last chance before divorce. The counseling was very difficult; there were no easy answers. It was hard, painful work - but in the end, it's been worth it.

    The biggest hurdle, and I won't kid you on this, is learning to trust your spouse again after the emotional abuse he's put you through. Because, whether or not he realizes it, it IS emotional abuse to demand that his family bend to his needs/routines/comfort zone constantly.

    Stand up for yourself. Talk to people you trust. Seek counseling, and be ready to fight for your marriage and your family. You'll not only help yourself, you'll help your children too. Get some space if you can - a weekend in a hotel, a visit with a friend, regular evenings out on your own, whatever you can get. Space to think things through.

    Please forgive me for posting anonymously - this is way more transparent than I've ever been comfortable being online, and while I want to respect my family's privacy, I can't NOT respond to your post. It's too close to home. I hope you find the help you need. Blessings, L.

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  10. yes and as anon "L" said, the husband did want to get help, and I still find that to this day. That was really important to me for me to continue on in our relationship too. We had counseling like "L" too, very helpful. Nice to talk to someone who understood the challenges I faced day in and day out. You tend to hide it from friends!

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  11. If he is not prepared to help why do you want to stay. He gets the help to be more bearable and to pull his weight or I would leave. You will end up collapsing. I would also tell his mother to go to hell

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  12. My now ex-husband was a bit like this and I have a son with aspergers and suspect that I am close to having it too! Though there were other problems in our marriage too. I must admit I like Gavin's advice, but there's certainly plenty here, so I hope you find something that helps x

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  13. I must tell you that reading this article is like reading the story of my life. Thank you GOD for sharing it, I felt really alone today dealing with all the same issues...sitting here crying at my desk and I can along this just by accident.

    I'm currently trying to figure out whether or not I should leave my husband. We met when we were 11 and I love him but I am so unhappy and things never change. I love my son with Aspergers beyond belief and the same for my son with ADHD but I feel lost and like a captive in my own dwelling. I'm just not sure anymore how to cope or even what to do.

    Leaving DOES feel just as hard as staying...so well put....I wish you the same thing I wish for myself really...peace, resolve and a happy future for yourself and all your family members. xxx

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  14. Hello my name is Tara. I am a new follower on your blog would love if you could follow me back. Thanks!

    Tara

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  15. Yes these are diseases that need more mental courage and support than the physical fighting of the disease.medicines are there but it is a more of an emotional game.

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  16. Oh. Here we go again. It's always the person with AS fault. If you knew my situation you would reverse the question and ask how do I stay married to my NT wife. We went to a marriage couselor for awhile about four years ago and the counselor largely agreed with me. So it's not my imagination. Maybe your husband is a jerk or maybe you have to look at yourself also.

    The question "who picks up the slack for me" is better asked of the AS person. At least my wife has friends when she needs to fall back. I have none. Get off your high horse.

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  17. I'm sorry to hear your friend is going through this, feeling like she is alone.

    I have to agree with Gavin (a few comments up). Having Asperger's does not mean you cannot help, it may be a laziness issue, or a husband choosing not to help because he doesn't feel like it or enjoy it. There are many things I hate doing and if someone else will pick up the slack, I will let them. Perhaps you need to stop doing everything to make a point. If you can live with it, then let some things slide. That's the only way you'll get help, and to admit that you can't do it all. The only way my husband really is affected and changes his behaviour is when I cry (which is rare), but he knows it's serious.

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  18. I understand completely! I will step up and answer your question- no one will pick up the slack for you!!! However, one way or another, it will all be accomplished. Having been too the bottom (and I mean waaaaayyyyyy bottom) I know know that my family can survive just fine while I was in the hospital for 30 days [at that point 10 yr old Aspy/adhd, 8 yr old TD, and 6 yr old PDD/adhd and a hubby similar to yours]. You HAVE to take care of your depression, no one else will, and quite frankly, no one else can. It is up to you to choose what are the most important things to you and then scale back on the rest. The floors can stay dirty, kids can only have no or one activity instead of two, and if your hubby really needs his socks washed he can always throw a load in. Control is an illusion, the more you try to control it the more illusive it becomes. Take the time, right here and now, to find someone that can help with the depression and coping skills- that is the best gift you can give to your family. Please- take care and know that there is a whole community that is cheering for you!!!

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  19. to the dear friend...Wow..can i relate to you..i have a son, 3 and a half, autistic.. and we all know the trials and tribulations, my recent one is a possible sleep disorder...i've developed major depression and fibromyalgia after my son was diagnosed..my partner is a possible asperger's, undiagnosed, with a lot of the characteristics you mentioned..i've have to tell him several times...change his way of talking to me or i'm walking...it is so damn depressing..i dont' care what anyone says...it sucks...maybe some day i'll feel different..i REALLY hope so..cause i know this is not healthy...only we know what this life is like and it's filled with stress, frustration, fear, anger, and grief and loss...hopefully in time there will be more good moments...they say no one wrote the book for parenting...who the h#ll wrote the one for this....how many times have i talked to professionals who have no idea what to do for me...parents are struggling through this together...how did i not know about this before my son was diagnosed...i guess the same way a lot of my friends and co-workers still don't...we have to fight for everything...and how can you fight when you have to work or you feel you have no rights because some stupid professional who doesn't know anything about autism put their foot in their mouth sideways ( those i'd like to ...i won't say!) or your just too tired, or depressed (anyone feel depressed, i wonder why??)...any way i can go on....tks at least i know i'm not alone,,,,sorry but it does suck...people don't tell me how i have a gifted child or a special whatever you don't have a clue....

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  20. Lord have mercery, I feel like I'm reading my own story. You & I married to the same man and have the same messy (litterally messy) life and all that goes with it. I'm medicated for depression/anxiety as well (recently). I too cry about missed registrations - becuase I will dissappoint my daughter and have to hear about it from my husband ... and guess what, my son with Aspergers is the one who wipes away my tears and asks if I'm ok. I sat here completely stunned as I read your thoughts - I feel so connected to you. Know this, I understand it ALL. You're amazing and I wish we were neighbors so that I could randomly clean your kitchen just becuase you need it, bring you a nice glass of wine and listen to YOUR story, plan a birthday surprise for YOU and bring you a beautiful candle that makes your home smell fresh and clean even though it's not. Hang in there. I'm thinking of you.

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  21. I love how all the parents of kids on the spectrum are running out and now getting themselves diagnosed. WTH? Give me a break.

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  22. Where to start? I know this is about you, and your situation. But, God, it is mine too. Mine doesn't have ASD, but his brother does, and all his siblings exhibit some characteristic or another. Anyway, it is so damn lonely. I am usually very happy----my life is great, right? I actually like being my own best friend most of the time. I can keep myself company. I write a lot, which is basically just me talking to me. A couple of times a year, I feel it. All. I'm in it right now, and as hard as it was for you to express all of these feelings, they help me a smidge. I'm so tired of talking myself out of feeling bad or neglected or unworthy of love. Unfortunately, it never goes away. Would it be better to live alone? Probably not.

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  23. Where to start? I know this is about you, and your situation. But, God, it is mine too. Mine doesn't have ASD, but his brother does, and all his siblings exhibit some characteristic or another. Anyway, it is so damn lonely. I am usually very happy----my life is great, right? I actually like being my own best friend most of the time. I can keep myself company. I write a lot, which is basically just me talking to me. A couple of times a year, I feel it. All. I'm in it right now, and as hard as it was for you to express all of these feelings, they help me a smidge. I'm so tired of talking myself out of feeling bad or neglected or unworthy of love. Unfortunately, it never goes away. Would it be better to live alone? Probably not.

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