On the Road Again?

Last time I wrote it was about the very real struggles I was having with a traditional 9-5. That has only continued to get worse. While I don’t know if any of my co-workers would agree, I feel the quality of my work is suffering. My work is not only a source of pride, but I work in arenas I am very passionate about, so not being able to give my all is unacceptable to me.

My husband is also tired. He is likely tired of tiptoeing around my extreme depression and taking care of things when I just can’t move, but he is also dealing with his own anxiety and job unfulfillment.

Thus our most recent conversation; we area considering full-time RVing. We have started to look at both 5th wheels and Class C motorhomes and creating sufficient savings to purchase one. We are beginning to downsize the house and look at options for remote and freelance work and working out necessary details like health care.

It just feels like it is time to get back to just living. Neither of us felt like ‘traditional’ people when we met but somewhere along the way, we became married homeowners with full-time office jobs and little energy to explore much of anything new. This isn’t living for us. I’ve moved before and it is true that wherever you go, there you are. I know my depression won’t magically disappear because I am living in a motorhome but I am hoping to have freedom in my work, and spending my time experiencing new things rather than getting caught up in a mundane routine will help me to see much more of the beauty that life has to offer.

I hope to document it well and share the experience and transition with anyone that wants to read about it.

My Struggle with the Monster that is Work

Trying to figure out what’s next is hard. I have long figured that I was not capable of maintaining your standard 9-5 job. Yet, I continued to work towards it, thinking if I could find the right position, right boss, right company- I just hadn’t found the right fit.

 

I think, after having to take some time off because of deteriorating mental health for the third time in my working life, I can be pretty confident in saying it has nothing to do with the fit.

 

I have the greatest job. I work in public disability policy and advocacy. It is my dream. I just completed my Master’s in Emergency Management and have been given some freedom to incorporate that into my work.  Yet, the anxiety I feel at going back into the office tomorrow makes me want to hide away and put it off forever.

 

I strive under pressure and stress at work until I just don’t anymore. My brain stops engaging, my depression blooms, my health and sleep decrease, and few things-whether in or out of work- bring me joy. I am just too exhausted to function at even several levels below my traditional pace.

 

Still, I can’t shake off the societal pressures that that’s what we do. Why else spend all this time in school? Why else rack up student loan debt, however minimal? When my husband says, “Just stay home, we can figure out living on one income.” I can’t get passed the imagined stares and judgments at a ‘stay at home spouse’ with no job when we have no kids. When people say, “You’d probably qualify for Disability.” I can’t help looking at my body (though I can’t see my mind), and thinking, “I’m just not disabled enough.”

 

So what next? What now? I’d love to write but I don’t know what about. I’d love to do research, but I find little available in a field I am passionate about. I’d love to work remotely and travel for a while, but doing virtual assistantships or survey jobs seems like letting everyone that supported my academic journey down.

 

I don’t say this to just complain. It causes me honest mental/emotional anguish, whether real or created, to determine my next steps. Like I am stuck on this precipice of change but any decision I take just leads me to step off and fall to my death.

 

How do we determine what’s good and right for us? When do we stop trying to force a ‘normal’ that just doesn’t work for us?  I thought it ended with high school but maybe that was just the start. This workforce game is just another monster and I am still trying to figure out how to beat it.

Who do you Matter for?: Activism When Your ‘Self Care’ is ‘Self Harm’

 

CW/TW: Self-harm and injury

 

“Who do you need to matter for?”

The question was posed to me in my first meeting with a new therapist. It hit me surprisingly hard and I had to hold back tears. I hadn’t actually considered the ‘who’ in my fretting and over compensating and pushing myself to the brink.

 

I have long ago determined that I must do everything at 100 miles per hour in order to make sure that I’m accounted for, that I am offering something to the world. That I am worthy of…what? I had never stopped to consider that what/who of the situation. With one question this therapist threw me.

 

I wish I could say that brief pause caused me to step back, take a break, replot the course. It didn’t. But it did make me consider who it is I want so much to be there for.  

 

I came into work today feeling less than capable of taking over the world, as I have for some time now. When putting together some dates for a lunch, we regularly had to question, “Is that restaurant accessible?” while trying to use Google Street View to catch a glimpse at the front door because we know that the answer we’d get if we called the restaurant was just as likely to be wrong.

 

This happens because, despite Federal laws and building code requirements, businesses regularly get permits to open businesses in inaccessible buildings.

 

This realization and frustration with inaccessibility in the built environment is what determined the course of my undergrad education and what I do for work now. It is why I got an Urban Planning degree and became International Code Council certified in Accessibility. At the time, and in my work today, I guess it’s what I need to matter for.

 

Because I have friends that can’t come to my house for my birthday or when they need to talk. I have colleagues that can’t just decide to go out after work without first scoping out the accessibility of the meeting spot. There are events that I miss because the space is too difficult to navigate in a flare.

 

Right now my email is full of the work of partners fighting rent increases in subsidized housing, work requirements for access to healthcare, and for disability representation in the media. All these are issues that affect the perceptions and ideas but also the very basic necessities of life for people with disabilities, POC, and low-income individuals.

 

Yesterday, I sat in a conference room full of women of color discussing how they are still told they cannot do or are unfit for certain work tasks based on their gender and skin tone despite being mayors, lawyers, CEOs, and public servants.

 

I watched trans friends be destroyed by the news of forced sterilization in Japan, and saw marriage rights be removed for same sex couples in Bermuda.

 

My need to matter, whatever that means, is for all those parts of me that belong in each of these categories. For the part of me that incessantly needs the world to be better.

 

But where does that leave my well-being?

 

I’ve been made a wreck with the continuous go-go-go of life but no matter how I try, I cannot slow it down. Yesterday, I had two separate panic attacks at work yet continued on my course. It is wearing me thin, and while the logical part of my mind is very cognizant of it, my feet keep moving, my hands keep typing, and my mind keeps racing from one thing to the next.

 

Do we take time for the ever elusive ‘self-care’ as people who care about others? What does self-care mean to a person whose main sense of relief often comes from things that are classified by professionals as ‘self harm’?

 

I haven’t cut myself in many years though the thought is regularly at the edge of my finger tips. Instead, I’ve moved on to less obvious — and admittedly less satisfying — forms of self harm. I pick my face, nails, skin until it burns and bleeds; I run until my lungs burn and I want to throw up, way past a runner’s high and a good cardio exercise; I pull at and out my hair.

 

While I would be quick to say I don’t do these things to harm myself (hey – running is even good for you!), they’re just coping mechanisms. Would I feel no qualms about a friend using alcohol, hard drugs, or risky behaviors as their coping mechanism?

 

If that’s the case, what options do I have? Doing my nails or going for a massage might have some temporary pleasure but it hardly releases me from the agony and chaos that is often residing in my head. What does self-care look like for me?

 

Recently I’ve seen blurbs floating around social media that ‘self-care’ does nothing for the poor who can’t afford the time off or pampering that is often associated with the idea. I feel like it doesn’t apply to those of us whose ideas of relief stem from self-destructive behaviors either.  One US study estimated a nearly 6% lifetime prevalence in self-injury; it’s not just girls or teens but adults trying to cope with their lives.  

 

So what are the options for people like us? A quick Google search brings up the same hotlines and coping skills I’ve seen my whole life. Taking a walk, calling a friend, petting an animal, focusing on your feelings…all which work to an extent, but never seem to provide quite the break I often feel I need.

 

This blog does not have an answer. I just know that people are hurting and often I feel I have to be involved in fixing that, but I can’t do it without hurting myself.  

 

It is hard to determine if ‘self-care’ is a myth or if the ideology of activism does not permit times of rest. Whatever it is, it must change and the disability community seems a perfect place for that to happen.

 

If anyone understands how difficult it is to fight under pain, how impossible it sometimes is to take place in a march or a sit-in, how necessary it is to take care of oneself, it is disability activists.

 

Maybe in our activism for a better, more inclusive, more compassionate world, we also must fight for ourselves. For a world where being a part of the fight doesn’t require nightly punishments. Where individuals feel supported in sitting out the next protest or backing out of the next phone drive as well as being supported when their time and effort is 110% dedicated to the cause. Sometimes we can only give 10% and stay alive.

 

Maybe sometimes a little self-advocacy is what we need for self-care.

I am in a black hole…

Valerie is sitting in a dark room, looking down at the camera. Her face is blank and tired.

I told myself if I was going to start a blog, I needed to be active in posting. However, I am currently in a black hole and my will to be productive is zilch. I have some longer pieces brewing on homelessness and disability and on inclusion of disabled people in disability-centric research, I will get those out as soon as my head is quiet enough to concentrate.

The goal in this blog is to provide information, primarily about disability policy topics. However, it is also about me.  This is a very real part of my day to day. Right now it is many days.

I hope to gain readers that will be able to stay with me on the journey, even when that journey causes me to produce at a slower pace that expected.

Take care, be well, I will catch you all soon.

My Husband’s Been Married to Borderline Personality Disorder for 5 Years

CW: Suicide

 

 

This week my husband hid the Percocet without telling me. He hid the Percocet because a few weeks ago I sat on my bed with a handful of them, not feeling sad, just calm and empty and ready to finally not be alive anymore. I didn’t do it because of a strange, almost vain reasoning: the opioid epidemic. I didn’t want anyone thinking that I overdosed on Percocet because I was a closeted, functioning addict.

 

My husband hid the Percocet because he knew this story. He did it without fanfare. I only found out because I needed one for pain so he mentioned over the phone, “Oh by the way, I moved the Percocet to that top shelf you can’t reach, you’ll need to get the step stool.”

 

This is a type of everyday life for him and for us. It is the type of life where he checks in every so often to every day, depending on how it’s going, to ask me if i’m “doing okay” which is largely code for “do you want to end your life and/or never leave bed again?” and where I’ve agreed to always tell him the truth. Sometimes its “I’m fine” sometimes it’s, “I can’t do this” and occasionally it’s, “Maybe we need to talk about me going back to the hospital.”

 

Despite the fact that my husband has intense anxiety, we have managed to find balance in this reality. He is not anxious so much as concerned. My suicidality just is.

 

I have Borderline Personality Disorder. My diagnosis was very recent (within the last two years) but I’ve been miserable since I can remember.  After my diagnosis I avoided therapy so much of what I’ve learned about BPD has been from websites and forums.  The more I gathered the more things just fit. So much about what others didn’t get about me started to make sense.

 

It explained why a chief complaint of a high school friend was that I “felt too much.” It explained why I fall in love so hard, fast, and unyielding. It explained why even my depression did not seem like other people’s depression. It helped my gracious husband understand my extreme affection and dependence on another man who (despite knowing him for almost a decade) I didn’t really know, we learned together he was my “Favorite Person” (Note: for those unfamiliar, a Favorite Person or FP is an individual whom someone with BPD is extremely emotionally dependent on and often swings between intense idolizing and devaluation).

 

It explained my impulsivity which was the first sticky point in my and my husband’s relationship. He doesn’t handle change well. Not just big change either. The first time it came up was early in our relationship when while walking out to his car I told him about a battle of the bands I had just heard about and asked would he be up for doing that for our date instead. He had a bit of a breakdown. Explained how he really didn’t like that I was always changing plans after we’d agreed on what we wanted to do. He wouldn’t learn for another few years how I packed up what I could and moved across the country to be with him with no job, $500 in my bank account, and living with a guy I found on a craigslist ad who said I could have a room for free if I drove him around. What we were doing that day was small potatoes. Still, it was and is difficult for me.  We came to an agreement. I told him I’d try but that I would never be the type of person to settle down. If he needed someone that could be rooted he’d need to find someone else, but that I would do my best to try not to change things without notice unless I felt like I’d explode otherwise.  

 

I really think that is what it is all about. I have seen so many people on Twitter or forums afraid that finding love with BPD is impossible. But my relationship is not a unicorn (though I feel fairly certain no one will find a husband as wonderful as mine) but I do think it’s about honesty, which can be hard for us with BPD.

 

I don’t mean honesty as in not telling lies, but honest about what we need and what we feel. For many of us, we’ve so long been criticized because of what and how we feel; add to that a difficulty trusting and a desire to accommodate and it makes it hard to be truthful about what we need. While I’m not some type of relationship guru, I think that’s imperative.  

 

Voicing what you need to a person that you care about helps you self-care and ensures you’re with a person that can love you back because some people won’t be able to.

 

My husband loves a woman who he has to worry will take her life.

He loves a woman whose emotional buoyancy is strongly attached to a different male.

He loves a woman that can’t be still despite his need for calm.

He loves someone that rarely is able to believe he loves her and he won’t leave.

He loves someone who gets jealous at the idea of him loving children more than her.

 

But even before a diagnosis, before we had words or names for these aspects of my personality, I told him they were there and he told me he’d take them. He loved my mental illness and that helped me love myself. I am now proud that I ‘feel too much’ when before those words haunted me.

We celebrated our 5 year anniversary this week. That isn’t a long time, but I didn’t plan to live this long, so it feels like everything. I didn’t plan to marry for love, but figured I’d marry out of loneliness, so this is a gift. I guess I just want those who are so worried you’re unlovable due to mental illness to know that it is okay and you are allowed to need differently. That there are people out there who are okay with loving differently and validating you a million times in a million different ways. But I do think it takes being okay with yourself so you can let others know what you need and sometimes that part is really hard.