Nice

You know what's nice? When you have family that offers to help out when you're scared and having surgery.

I remember when my dad had a cardiac catheterization when I was in college. He told the nurse that it was important I take him because I wasn't sympathetic enough to his illness - that I didn't understand the seriousness of it. He said I was self-centered like all people my age. (He didn't think I could hear him but I was standing in the hall crying; I was so worried about his condition.) But I heard him and that's why I made it a point to attend - or at least offer to attend - every major surgery my parents had in my adulthood. I drove to CT when my mom had lumps removed in her breasts and her varicose veins done. I flew out to Ohio to help my father recover from his open heart surgery and his spinal stenosis. As an only child, it just seemed like the responsible thing to do.

I always knew it didn't go both ways. My parents get pretty preoccupied with their own lives; they're retired, and they want their retirement to be fun. Besides, when my parents visit it's always about their needs, so having them around when I'm sick never really works in my favor. That's why didn't tell them about the week I was in the hospital in 2004 or the week I was in the hospital in 2008. Stupidly, I decided to tell them I was having surgery this week. As an only child, it just seemed like the responsible thing to do.

Of course they didn't offer to help. They didn't offer to come keep me company or help out with cooking and chores. They just complimented me on how capable my husband was of taking care of everything - which I guess is something because for the first 8 years of our relationship, all they did was tell me what a terrible person he was. Ironically, they started liking him when he took care of me when I was in the hospital! I guess they really do think that he can just take care of everything!

Anyway, it's just nice when you have family that offers to help. Even when you don't NEED help, just the offer makes you feel less alone during a scary time. Or at least, I guess that's how it makes you feel - I wouldn't really know.

honestly, baffled

August: wife of best friend dies

Mom: I’d like to get her something – what do you think she could use?

Me: I don’t know but I’ll ask. Thinks to self: oh, I dunno, a housekeeper, driver, nanny…

Me (to best friend): hey there, my mom wants to buy you something – anything you need?

Friend: Actually… you know what… I would like to go do a spa day with you to rest & relax.

Me (to mom): She said a spa day. Don’t know if that’s what you had in mind but it was the first thing she mentioned – and she doesn’t usually ask for things.

Mom: Sounds like a great idea!

September: horrible visit to parents’ house

Mom: So what spa do you want to go to?

Me: Um… I have no idea. I don’t know a lot about spas. I know there’s one near her house – you could try there?

Mom: Well I don’t know about spas in your state! What do you want to have done?

Me: Thinks to self: bullshit, you lived here for 30 years and you go to spas all the time. Well… I guess just a day-package type thing. Can’t you just do a gift-certificate?

Mom: Well I don’t know what you want to do. You have to tell me.

Me: Let’s just table the idea. I don’t really have time to research this right now since I’m helping her find therapy and other basic needs.

Mom: Well let me know when you have time to look into it.

Me: Um… if it’s YOUR gift, shouldn’t YOU look into it?

October: emails from hell

Mom: I was just thinking about the spa idea for you two.  Let me know when you decide on a place that works for both of you.
Me: OK. Here are 3 spas near her house. Just pick whatever you're comfortable with.
Mom: I have been doing a little investigating of the places you have suggested for a spa day. Are you thinking of trying to do this before you have your surgery on Nov. 11th?
Me: Thinks to self: um, that’s not my surgery date…
Mom: One place, while I'm sure is lovely, is out of sight price wise. The other place, not surprisingly, because it is a day spa, is much more reasonable. I can do a gift certificate online for two packages.  It sounds like this is what I can afford right now. I have a lot of charity expenses right now, too, but I think I can swing this.  Thanks to Uncle Sam and my Social Security checks!

Me: Um… if you can’t afford this, you aren’t obligated to do this. I’m sure my friend forgot we even talked about it; she has so much on her mind.

Mom: Well, it is too expensive, but I will honor the commitment I made.

Me: Okaaaay….? Also, it’s very unlikely we’re going to fit this in before my surgery. I’m only free 1 of those weekends and we both have so much going on right now I don’t want to pressure her to fit it in if she can’t.

Mom: Well do you want to call her and make a plan?

Me: Not really. She’s struggling with getting laundry done and making the kids’ lunches right now. I don’t think scheduling this is a top priority at the moment. We’ll do it eventually.

Mom: Well I wanted to get her something she can use now. I guess just let me know when you want to do this and I’ll order the gift certificate online.

Me: Thinks to self: well that’s clearly not going to happen. And who cares what YOU wanted. YOU didn’t think of something, and she didn’t ask for that.

And. Scene.

you have GOT to be kidding me...

Hmmmm.

So I stumbled upon this website a while back while researching ACE’s (Adverse Childhood Events). Because someone like me who has a host of Axis I diagnoses and a glaring Axis II diagnosis, is pretty much likely to have a pretty ugly ACE score. And as I read the website it described, well, me. I have somatization up the wazoo:

• IBS w/complications
• CFS w/myalgia
• Insomnia
• Migraines
• Telogen effluvium
• Eczema
• Scoliosis

Some even argue that my chronic UTI’s and even my Raynauds Disease could somehow be related (poor self-care and low-grade autoimmune symptoms respectively).

But as I mentioned in a recent post, I have to have a hysterectomy in about a month for a new problem: adenomyosis. Initially, I assumed that this had nothing to do with any of the above. Still, it was kind of annoying that it was another illness that would be pretty difficult to discuss in public: “oh yeah, I’m taking next week off to have my uterus removed since its lining is trying to grow into my musculature!” Not really water-cooler talk. But it wasn’t a psychiatric or even psych-related diagnosis so I was kind of happy about that. (You know what a bitch mental illness is when it’s a treat to have a regular-person illness.)

But then I was talking to the husband the other night about the cause of adenomyosis. Essentially, endometrial tissue is part of one’s immune system. And there are theories out there linking its occasional freakout to autoimmune disease. (Oh, did you catch that part about the flu-like symptoms? I DID.) And from an epidemiological standpoint, people with my cluster of somatizations are much, MUCH more likely to develop adenomyosis. 

So here’s my PSA for the week:

Hey parents! Don’t scare the shit out of your kids - especially the kinda sensitive ones. They’ll be traumatized and that trauma will cause a LIFETIME of health problems - oh and probably reduce that lifespan to boot. So, you know, maybe try to chill the fuck out when you’re together. 

FFS...

Boundaries

I emailed my parents today and told them the Antarctica trip was "too long" of a trip to take during the school year. Who knows if they'll buy it – who cares. I read and reread the last post about 100 times and we both came to the realization that we'd be idiots to lock ourselves on a boat with them for 14 days.  We'll pick another destination I told them… I'm not sure if I believe that. Frankly, the toll that visit took on me was astounding. I came back so depleted that I wound up getting an incredibly bad cold that I'm still not over.  Maybe it's turned into pneumonia or asthma or just simply got my chronic fatigue so flared up that I feel sick all of the time. But as I told my self and this blog a few months ago: taking care of them does not work and only makes me sicker. Occasionally I should listen to myself…

So the new rule will be this: I will never, ever, agree to spend any time with them while I am in their presence. Clearly I get too dysregulated to make good decisions. I will make up some excuse about needing to check with work or something but I will never commit until I am home and in my right mind. There probably should be other rules, but for now this is the easiest one I can think of and that's the most likely to be able to implement.

I cannot control them, but I can control my own actions. And it's becoming ever increasingly clear that I must control decisions around my health. I feel like this post should have some sort of big mic drop at the end but honestly… The whole thing is just sad.

Fool me once

This is going to be a bit… scattered. I’m trying to work out what the hell happened this weekend so I can see if I can make sure it never happens again.

So back to Christmas. (Yes, sorry, the saga goes that far back) We visited my parents at their house and it was not a great visit. My husband got a terrible stomach bug, which meant that some of the diversions I’d scheduled didn’t pan out. Most disturbingly, my parents’ didn’t really seem to appreciate that my husband was incredibly sick and just could not do certain things. I could tell that they were frustrated by his lack of energy and how limited our activities became. I wound up spending a huge amount of time worrying about everyone. On the last night they’d scheduled a dinner party with friends of theirs – even though my husband had barely eaten in a week and was weak as a kitten. It was one of the more thoughtless things they’ve done in quite a while and I seethed the whole night. Afterwards, with a major snowstorm barreling down on us, we drove to the airport where we stayed overnight so we wouldn’t miss our flight. My father complained and chided us for taking our rental car to the dinner party. As I drove through the terrible storm with my very sick husband next to me, I wondered if we should ever visit them again.

However. Since we’d had all this down time, my parents became obsessed with planning our “annual family ski trip.” Their main criteria were that we commit to plans ASAP and that we find a location that could accommodate their dog. My husband and I grudgingly agreed to a time and place – though both of us felt bullied into it. But what could we say? No, we’re not going skiing with you because we don’t like you? All the excuses are too implausible or too harsh. And on some level we like skiing but we always approach these trips with such trepidation – especially since it usually means that we’re taking almost half our vacation days with my parents. Finally, when they insisted I choose plane flights on the spot I had a meltdown. I told them that I was far too overwhelmed to make a decision on how we’d fly to this pretty inaccessible location. I couldn’t even consult my husband since he was too sick at that point. I promised I’d take care of it as soon as we got home and things had quieted down. And of course, when I did book the flights I was so distracted and upset I still wound up making costly errors.

________

So fast forward to February and we make the incredibly long & complicated trek out to the mountain they’d chosen. But the entire trip, I just kept thinking about how my husband and I would finally have a few days out of our busy schedule to spend together, doing something we loved. But when we arrived, dead tired, we were informed that they’d decided (since this was a school vacation week) the mountain was too crowded. To remedy the problem, they’d hired a private ski instructor to take us around for 2 of our three days. All dreams of spending time alone vanished. We’d be with them – and more importantly, living by their dictates – the entire time. I seethed. The ski instructor was a nice enough guy but by that point I’d shut down. Seeing me so upset, my husband shut down as well. We’d taken off the better part of week for this trip, spent a fair amount of money, and we were having a terrible time. On the last night as my father criticized me for mentioning my Chronic Fatigue diagnosis, I wondered if we should ever visit them again.

And unlike other visits, this time I had data. For Christmas, my husband had bought me a heart rate monitor. One of the symptoms of Chronic Fatigue is a racing pulse and it’s been helpful for me to keep track of what sets it off. Well, during that brief visit, my resting pulse shot up to unhealthy levels.

_______

By March, I’d decided that I wasn’t bringing up any future trips – we’d just let things lie. But of course, my dad couldn’t have that. One night on the phone, he informed me that he and my mother were signing up for an extended cruise in December. Despite promising to celebrate Christmas at our house for the first time ever, he went back on his word. Insulted and frankly incensed, I decided to draw a hard line in the sand. They were still welcome but we were staying at our house regardless of what they did. They could not bring their dog and the day after the holiday we were going to go on a trip by ourselves somewhere we’d enjoy. Although my husband said my email wound up coming off as business-like, I tried to soften what I knew would be a blow: “If you'd like to plan another time to get together you are always welcome here. We could also come to your house this summer to celebrate your 70^th birthdays in person if that would interest you.”

They finally relented, agreed to come for a few days at the holidays after their December cruise and said, of course they wanted us to come visit for Labor Day weekend. I felt like I’d stood up for myself but I also worried that I’d played on their fears of losing contact with us to my advantage. I try to take the high ground whenever we interact because otherwise, I find that I can all too easily stoop to their (childish) level. And then I end up feeling even worse about myself.

_______

So as you may have noticed, yesterday was Labor Day. And we flew out for the weekend and it was awful. (I know, you’re shocked.) We’ve had a hell of a summer. For a short time this spring we were worried that I had ovarian cancer. (I don’t – I just need a hysterectomy.) One of my students was diagnosed with a rare, terminal cancer. Our friend DIED from a rare, terminal cancer. My husband had a strange health problem that caused him daily pain for reasons that remain a mystery. And then on Thursday, one of my husband’s students was diagnosed with a rare, terminal cancer. We’ve been running on fumes, dreading this trip to my parents’ house and now we were leaving completely shell-shocked. The trip was doomed to failure.

Still, we tried to be patient with my parents and do whatever made them happy but our frustration tolerance was incredibly limited. I immediately ran a 100 degree fever, developed a blinding headache and my resting pulse shot up by 10 points overnight. Finally, Sunday night, my husband and my dad got into it over politics, which led to a particularly heated argument. I knew my husband wasn’t actually THAT mad – he was just exhausted and upset. (And in his defense, my father was saying horribly racist statements.) But my parents couldn’t read any of this and my mom got very judgmental. “Don’t lecture me,” she said as my husband tried to calm her down after the storm had blown over. Hurt, tired and confused, my husband gave up and, then after my father begged us to pretend that all was well so my mom wouldn’t yell at him for weeks, we filled the remaining few hours of the trip with stony platitudes. Leaving for the airport yesterday, my husband offered an olive branch and said he was sorry to have lost his temper – that he’d just been overwhelmed lately. My mother barely acknowledged his statement. “Well it’s all over now, right?” She said. No mom. No, it’s not.

And of course it’s not over. Because as a present for getting tenure, my parents gave my husband a present with so many strings attached it’s kind of hilarious. They offered to pay for a family trip for the four of us wherever he wanted to go in the world. He’s dreamed of going to Antarctica since he was little and we’ve been eyeing a great trip we’d planned to go on when he turned 50. We’d have to save up a bit but it we could afford it by then. But then, hearing my parents’ offer, we – stupidly – jumped at the chance. We got all excited about the idea and started looking up dates and facts about penguins. And then the fight happened and as we drove to the airport yesterday, bleary-eyed from a fitful night’s sleep, I wondered for the 1 millionth time: should ever visit them again?

Life's Too Short, But They're Wrong

So I’ve become obsessed lately with the lyrics to the song, “Just Go On” from the fictitious musical, “Gangly Orphan Jeff” from the Neflix series Unbreakable Kimmy Schmidt. For those of you who may not have watched it on YouTube 12,000 times, here’s a snippet:

Oh, the sun will rise in the morning

Or so I’m told, but who knows?

You could win a million bucks in the morning and then get rolled

By a mob of stinkin’ hobos

Good news, you can’t lose

When you tell Mr. Blues that you choose to keep going

We’ll never stop; we’ll keep on moving forward

Even if we don’t know what we’re moving toward

They say life’s too short, but they’re wrong

—It’s so long

Sometimes the only way to go

Is to just go on.

It’s sung by the amazingly talented Titus Burgess and Carol Kane and penned by Tina Fey’s clearly genius husband, and perfectly encapsulates the last few years… oh hell, it encapsulates my entire approach to life for the past decade or so:

just go on.

I am just floored by life these days. It’s like an insane game that no one would choose to play if they had any choice in the matter. Just when you think you’ve mastered one level, it throws a new, much harder, task in your lap that you need to complete while blindfolded and hogtied, thankyouverymuch. I’ve started to seriously respect my elders because, damn… if you can fit this much living into 40 years, I can’t even imagine what happens to you by the time you make it to 80…

So my best friend’s wife passed yesterday. And wow. It’s all the kinds of awful.

• She did not go gently. It was a horrible, painful, ugly death.
• My best friend had to watch this over the last two months and it wrung her out in a way I haven’t seen since she worked on the pile after 9/11.
• She leaves behind two small boys who she never really got to say goodbye to.

But there’s so much more. In the years before she passed, her wife changed a lot. Illness made her scared and angry and it became easy to forget who she was years ago. So along with the relief that any family experiences when someone with a terminal illness finally passes, it’s all mixed up with relief that the years of struggling (sometimes with her) are also over. No one wanted this for her. But no one wanted her to keep living the life she was living either. But no one wanted her to DIE for that to stop.

The changes in her personality over the last 5 or so years affected my life in a lot of really profound ways. As she became more tired, she circled the wagons. Suddenly our families were still close but we rarely saw each other. We lost our main support system and often felt very confused and lonely.

And as she became more anxious, she became more rigid. She went back to what she knew – a very old school, “my way or the highway” kind of approach to life. It was hard to watch – and probably very hard to live with – and likely what killed her. Instead of going and seeing specialists and new doctors, she trusted her familiar (negligent) local doctors and didn’t follow up when they found the first signs of cancer back in November of ’13. “Probably just a fatty liver” they said. By the time we realized they were wrong six months later, it was terminal.

And of course… when she got the terminal diagnosis, we had to stop our surrogacy plans with them. It was the only reasonable thing to do. And yeah, I have emotions about that. It may never have worked but it’s hard not to think, “what if we’d known” before we started. We could’ve found another surrogate. Yes it would’ve been very difficult. But we might have a child now. And of course, I’m not putting all on her. We all made decisions. But all our lives became wrapped up so tightly that it’s hard to know where one decision starts and another begins.

But mostly, I’ve been floored by how sad her passing has made me. We’ve been living in “how is she” mode for so many years that it kind of took the focus away from the actual – wow, she’s going to be GONE – thoughts. My husband and I had a really long, really hard talk last week after spending the weekend with her boys and he called me on a lot of things. He challenged me to put myself in her shoes and when I did, all the reasons why I love her came FLOODING back: her tenacity, her fierce love for her family, her humor, her generosity. Yes, she had been limited for the last few years but our relationship goes back over 21 years. And man, did we have some good times. And boy was she a wonderful person. Flawed like each and every one of us but my friend and – honestly – family member who I loved.

And finally, none of this (never mind those last 3 paragraphs) is about me. It's been an palpable challenge to think about what my friend and her family need and not what would make ME feel better. Every bone in my body wants to run to her side and walk through this with her. To be her helper, to make things better. But that's not what she wants. She wants space and the ability to make decisions on her own and the right to take her time with how she processes all this. And giving her that space has been an honest to god, hit you over the head, life lesson about how to not be self-centered. I've watched people in her life struggle with this in a variety of ways and it's not like any of us are getting it right. It's just actually painful to watch and to realize that wanting to help is more about you than it is about the person who is suffering. Yes, there are some things I can do. But honestly - not much. Life is so hard; and it's so long.

two & two together makes...

Of course you realize... if you read the last two posts back to back, this means my boss is Calypso.

inflamed

I’m learning a lot of lessons recently. I don’t know what I should attribute these revelations to… but it doesn’t much matter. Ultimately, I wanted 2016 to be a year where I devoted my free time to self-care and maybe, just maybe, putting that desire out there opened me up to the possibility of change.

For starters, I’ve been learning a lot about my body. I hired a personal trainer in January who’s been helping me understand its strengths and weaknesses. Recently we’ve been re-framing my Chronic Fatigue as “inflammation” and noting correlations between my mental state, the behaviors it produces, and the effects these elements have on my physical state. It sounds so simple but it’s the kind of thing I’ve NEVER paid much attention to. I’m pretty good about getting sleep but otherwise, I don’t think about hydration, nutrition or my resting pulse. And after looking at these metrics, it’s no wonder everything in me is inflamed. As I’ve been training, I’ve been shocked by how truly debilitated I’ve become. But since I know have a long road of rehab ahead of me I’m being patient with myself. Reversing decades of damage takes time.


Probably (and most importantly) I’ve been working on my co-dependent relationship with my parents. My husband and I struggled through two, back-to-back terrible visits with them this winter and then, a few weeks ago, my father informed me that we’d be in for more of the same next year. He had no intention on honoring the promise my mom made to celebrate Christmas at our house this year. I’ve explained to my mom that a difficult thing about not having kids is that you never get to celebrate a holiday in your own home so she said they’d come. I doubt my dad ever meant to follow through on this and so he conveniently found an excuse as to why they couldn’t come.

So despite all the old neural pathways that were racing through my mind insisting I couldn’t assert my own needs, I did exactly that. I informed them that I was disappointed and that they’d be missed. And that we’d be making our own plans separately. They’re currently sulking and haven’t mentioned the matter since. But most importantly, I’ve ceased to care. We don’t value each other’s company. We don’t even really like each other. I don’t care if I win or lose - I’m just not going to keep playing the game. Trying to take care of them doesn’t work & only hurts me.


Finally, I’ve been thinking a LOT about my equally baffling relationship with my boss. I mean… something’s gotta give. I’ve been talking to my friend back in California (the one I posted about back in January) about this really annoying feature of our shared diagnosis:

“Impairments in interpersonal functioning: Intense, unstable, and conflicted close relationships, marked by mistrust, neediness, and anxious preoccupation with real or imagined abandonment; close relationships often viewed in extremes of idealization and devaluation and alternating between over involvement and withdrawal.” – DSM V

Out of all the *super fun* things there are about being a borderline, this diagnostic criteria is just the most awesome of all. This tendency to become overly attached a person who gives us the sense that they can fill our needs. I could probably name a person from each part of my life I felt this way about. Thankfully, since I've been with my husband, this has been a LOT less of an issue and the only times I struggled with this recently has been during periods of extreme stress.

But I’ll admit: I’ve had the tendency to make my boss this person at times. And I see her every day so I've thought a LOT about the kind of person who becomes enmeshed with a borderline in these kinds of relationships and what THEIR needs are. It’s a two way street. I see her gravitate towards creating a relationship with others who need her. These people have the need to be caregivers but not always the capacity. It's only when we can describe what's happening - and more importantly, see that there are positive things about us that drew THEM to US - that we can start to end this lovely tango. I wish we could find that special thing without needing these people since we're obviously quite, well, special in our own right.

I opened up my facebook feed this morning to see a picture of my boss at a social function with a colleague who I adore and respect (and I hired). And I was immediately jealous. I know she drives this colleague completely crazy and facebook is a space of manufactured happiness and a picture of them hugging with #loyalty  beside it does (when they are most likely quite drunk ) does not even tell a fraction of the story. Last week he said she was the most verbally abusive person he still spoke to. And despite all this, I instantly plunged into a “why even bother” kind of mood. And yes, this comes on the heels of about six other horrible things she’s said or done to/near me in the past week and maybe because of that, it suddenly clicked:

I’m afraid to go out on my own because she has this hold on me – one that is part of my diagnosis. 
And on some level she knows this.

I mean, my husband has probably said a similar version of this about a hundred times but my recent conversations with my friend in California reminded me that I have a hard time putting my needs first in relationships. I put my work before my health. I put my parents’ needs before my own. And I put my loyalty to my boss before my own professional goals. And it has to stop. I need an anti-inflammatory STAT. Because have you seen my resting pulse rate? Yikes.