Sisyphean Transformation

Many years ago, I was best friends with an outgoing, charismatic gay man named Hunter. We are no longer friends, but I mention him because we used to play this esoteric board-game called the Transformation Game. You start the game with an intention and then roll to be "born." Once born, you travel on your own life path on the board (no one shares the same life path) and you work on the intention you set at the beginning of the game. You work through physical, emotional, mental, and finally spiritual levels to gain awareness and insight into your intention. It's a really cool game, and I've learned lots from it. I haven't played in several years, but recently the game keeps coming into my head because of a feeling that I've been experiencing a lot in the past eight+ months. One of the squares you can land on in the game is called the "Life Depression Square" and you gain four tokens of pain, which slow you down. Only a roll of 5 or 6 can make you move. Otherwise, you just stay stuck in depression. This feeling of stuck in depression is exactly how I've been feeling about my life lately. Like I keep rolling a 2 and get nowhere. And finally when I do get a 6, something else comes along to add more pain to my life and keep me trapped in that isolated and depressed place. A Sisyphean task, this time of transformation.

I keep making efforts to improve my life, keep trying to meet people and focus on creating new memories, and not get stuck in old traps. But unfortunately, I have been traumatized by the events of the past year and I keep getting triggered and it's hard to move forward. Trauma is a quite a beast, and my beast is rather large and especially ungainly. I have a history of trauma from my family, from sexual assaults/rape, car accidents, and bad relationships. My trauma is further compounded by grief: loss of my nephew, uncle, and father; loss of my marriage; loss of relationships/friendships recently. It's all just too much to bear sometimes. I have lost my sense of self, feel a loss of psychological/emotional safety, and my dreams...all types of grief that people don't normally talk about. And I am experiencing it all at the same time. As a result of all this trauma, my ability to "tolerate" certain things is greatly diminished. This graphic explains what I mean:

Being in a constant state of hyper-arousal is exhausting to say the least. I'm always tired these days. Physically, emotionally, mentally, and spiritually tired. I don't feel like I have the capacity to do the things I have normally done in the past...and people are taking note and are not sure how to navigate it. I get it, it's hard to have a friend who seems like they are constantly in a state of meltdown, but remember all that person has gone through. Do you think that you would be able to handle it any better? Know that that person is really, REALLY trying. And Bob knows, I'm trying really hard just to get through each day (sometimes one hour at a time).

From the comic, the Life of Bria

Recently, a friend of mine has downgraded our friendship to an acquaintanceship...and it's mostly because of my hyper-aroused state. It felt like a judgement and it really fucking hurt me. But it's clear that I'm not going to let him back into my inner world because I don't want to be friends with someone who only wants a fair-weather friendship. It's an awful thing, being told that someone only wants to hear about the "good things happening in your life" because when you are on that Life Depression Square, you don't have a lot of good to talk about. And so you get dumped as a friend because you aren't that happy-go-lucky, upbeat weirdo anymore. More isolation ensues. Talk about piling pain on top of pain. I'm not the kind of person that only posts the most beautiful selfies, the most awesome stuff happening all the time, or my amazing plans to do X, Y, or Z on my social media. Instead, I share a pretty honest picture of myself with the world. I share my stories to make others feel less alone, less ashamed, and seen. I am this kind of a friend, and I would like my friends to be similar:

Now I turn to my latest triggering event. I recently started dating someone new....this was the first person since that traumatic breakup right before Christmas. I wasn't in a hurry to move things along, I wanted to respect my pace given where my head/heart are at. It was going well. I was getting to know her and we were figuring out things between us. Just last week, my date asked me how much information I needed to know about the other people she was seeing/having sex with. I told her that I would need to reflect on that, because of my lowered ability to "take on" too much with my trauma brain. What I didn't know at the time is that she already slept with one of my close friends, and would ask that friend out a few days later. My friend is the one who told me. This is not what ethical non-monogamy looks like. I had to end the dating situation because I'm not at a place where I have the capacity to date/fuck the same people as my friends. I'm not sure I will ever get back to that place after what happened with the Yak. When that relationship imploded, it really negatively affected our friend group - we are all friends. I simply cannot go through another situation like that whereby the larger social network is disrupted and fractures. I won't do it to me or to my friends. And I need my friends to understand this. It isn't about control. It's about safety. It may not make any sense to you, dear readers, but I no longer feel safe in these kinds of enmeshed, interconnected dating situations. And I need this boundary to be accepted, not judged or transgressed. Again, it's about my need to feel safe.

To this end, I think it's best if I give up on dating (even casually) for now. I'm just too shattered by everything I've gone through the past year. I didn't even mean to end up dating right now - I just met a really cool human and wanted to get to know her better. But this whole event has just confirmed what I was feeling inside - it's not safe for me to date right now. I need to focus on healing my heart and my mind. To that end, I've purchased a book and have begun working through the exercises to help me gain a better understanding of why I react the way I do when I'm triggered, and to develop healthy strategies to move me away from "reacting" and instead to "responding." A friend of mine posted this graphic to FB the other day, and while it says that it's for children, I think it works for adults as well. A good guide to consider when digging oneself out of a traumatic depression...

I need my friends and support network to read and understand this stuff around trauma and know that I am sincerely doing my best, but that I need help. I need help with regulating feelings of extreme isolation and hopelessness. I need to feel safe through re-connection, before trying to work on my feelings in a "rational" manner. I ask that you please cut me some slack if I seem to be cycling through this stuff. Shifting trauma is one of the hardest things a human can do. And I need your help.

Pain and Ableism

I’ve been composing this blog in my head for some time now. I know that I have previously mentioned my chronic pain in other posts, but I’ve never just sat down and devoted an entire post (or almost) to this topic. And it’s a BIG topic. What I’m going to focus on here is how I have experienced ableism in my life since becoming injured and dealing with chronic pain and its associated mental health challenges.

Depiction of what chronic pain can feel like

Just over nine years ago, I experienced two car accidents, followed by a bicycle accident 15 months later. The bicycle accident compounded my earlier injuries and set me wayyy back (makes sense given car vs. human). I had to change the way I accomplished most daily tasks, including sitting in a chair and brushing my teeth! It’s been a long road of recovery, and it’s unlikely that I’ll ever fully recover from these injuries and the pain they continue to cause. That’s a hard fact that I’ve had to come to terms with over the past several years. It’s a very hard truism to accept though, and at times, my brain wants to protest my body’s reality. But it’s better that I face the pain and try to work with it, than complain about how unfair it is to be chronically in pain. However, chronic pain is not only physically debilitating, it's mentally and emotionally debilitating as well. Physical wellness impacts other aspects of wellness, and vice versa. Since living with chronic pain, my depression has deepened, and my anxiety has grown...these challenges have further been compounded by the last five years of grief caused by the loss of my nephew, uncle, and father, and now the ending of two of my long term relationships (LTRs). 

I experience ableism in my life on a regular basis. It is beyond frustrating! I experience it on transit, in event venues, at work with friends, family, and yes, even partners. I’ve experienced internal ableism as well, which is such a hard place to be in my head. Which is basically when you need to prove that you are sick/disabled when you don't need to prove anything to anyone. I especially get tripped up around “being broken” and “needing fixing.” These thoughts are so detrimental to my well-being, and they insidiously peep their ugly heads up from time to time as I’m going about my life. Again, I try to acknowledge that these thoughts exist but know that they don’t need to hold the power of my narrative in their metaphysical hands.

When I was first injured, I had no concept of how much my life would change. My life changed on personal, professional, and social levels. Everything was impacted by my limitations – physically I hurt so much; mentally, I was not ready to cope with ongoing pain and became frustrated with my experience; emotionally, I felt as though things would never improve and that lead to a more intense depression that I had previously felt; spiritually, I was devastated. I was looking at my life and realized that there are some things that I could no longer engage in doing. My life, as I knew it, was over.

Chronic Pain has lots of effects across all parts of life. I've experienced pretty much ALL of these impacts.

During this time, I had very limited support. I really was on my own. My family was not helpful or supportive during this time. I asked for help in the form of driving, getting groceries, cooking etc. My family said no. My best friend at the time said no. It was so very isolating to feel myself in so much pain and that the people who were supposed to be there for me wouldn't help me! This was the first time that I really experienced ableism from the people closest to me. My best friend and family couldn’t understand what I was going through, and they didn’t even really try. I spent the next several years educating my family about why I could no longer do things. It was exhausting. With my deepening depression around my chronic pain, I began the process of isolating myself while the outside world began to feel inaccessible to me.

Here's some examples of ableism. I've heard about half of these (or more). Please STOP staying shit like this to people.

Over time, I discovered that I was being invited to less and less outings or able-bodied adventures by my friends (and even my partners). This started to really cause mental anguish as I used to be someone who lived to go into the mountains often for hikes and whatnot. And now, I can only go when I'm not in too much pain, it's not too grueling, and is less than four hours duration (sometimes even less). Outdoor recreation isn't accessible to many folks who have physical limitations. Because it's hard to predict when my good days are, my friends and partners have told me that they find activity-based invites difficult to navigate because they still want to do activities but don't want to depend on me/have to cancel the whole plan to go into the great outdoors. Thus, I am either not invited at all to activities, or I'm only invited when there's a big group and with the understanding that if I don't attend, it won't cancel/ruin the entire outing for everyone else. I can't express how isolated, frustrated, and limited I feel by my pain. Or how emotionally painful it is to be left out of activities just because others "don't know how to deal with my high pain days." You know what? Sometimes even I don't know how to "deal with" my high pain days. I am so exhausted by pain, fatigue, and ongoing mental effort to explain my condition and pain to others. It feels exclusionary to be consciously left out of an invite for an activity by my close friends because they don't know a) if I can do the thing, or b) if I will be too much pain to do the thing. My friends still want to do the things. I still want them to do them too. And I badly want to be included in activities with them, especially when they know how much those activities mean to me. But it's hard to find a balance, or a way forward.

I started saying out loud how I need to branch out and make more friends who have have a similar level of ability. I have a few of these friends in my knitting circle etc., but I want to expand my circles as many folks seems rather caught up in their own adulting world, and I want to find new outdoor group spaces that won't have the Yak etc in them. Recently, I've joined the Fat Girls Hiking group as they are a more inclusive community that works with people of various body types and abilities to get them outside and enjoying nature without having to deal with toxic masculinity of some of the outdoor dude-bro culture that exists. While I don't identify as "fat," I'm completely at home with their ethos of inclusion. I've only gone on one chill hike with the group, but I hope to join them for more activities. Here's a great little video by the group regarding making outdoor spaces accessible:

I'm also planning on joining the local Chronic Queers support group that meets once a month in Vancouver. It will be nice to make connections with other folks who just "get it." And hopefully, it will make me feel more connected and less alone and in pain.

In my romantic relationships, I've had to deal with one of the most painfully ableist things ever said to me by my own spouse. "Fox, I just don't think that you are mentally or physically strong enough for motherhood." More than anything else, this phrase undermined my feelings for Bear over time. And it hit hard on the fear that I had years ago when I was going through the legal proceedings for my ICBC accident claims. At that time, I was very much afraid that my chronic pain would mean that I wouldn't be able to hold my babies. Then mix in the very real bullshit in society about how disabled folks shouldn't/can't be fully functioning parents, and you get the amount of anger and sadness I was feeling every time I replayed Bear's message in my head. For the folks in the back, disabled people have the RIGHT to have and raise children. With Yak, she would bring up her desire to have a partner to travel with or go hiking with and she never seemed to think that I could fit that role. Which really hurt my feelings. I can go travelling or hiking - I just need accommodations in order to do those things. But she never seemed to make finding a way forward a priority. She wasn't able (ha!) to see solutions, only problems. And those problems seemed to be with me, and being disabled. I called her out on it in a letter I sent her back in February. I hope she realizes how her ableism was really shitty for me, her partner, to experience. While both Birdfriend and Yak have had challenges trying to accommodate my disability and pain for outdoor activities, only Birdfriend actually has tried to work with me to find ways to include me. And this is crucial for folks of diverse ability. You cannot seek to create a more inclusive space without including disabled folks in the planning of those spaces/activities. Or to put it in graphic form:

It reads: "Nothing about us/without us/is for us"

Now that I'm "singlish" again, I'm going to eventually get myself back into the dating pool, I'm dealing with a lot of anxiety around having to "come out" as someone with chronic pain and physical limitations. At what point do I tell people about it? Do I make it a part of my dating profile description? How much is too much info (e.g. what level of detail won't make potential partners run away?)  This past weekend, I attended Converge Con in Vancouver, and Birdfriend and I went to a session called "Crip the Bedroom" and it was so validating to hear about the experiences of other queer disabled folx when it came to dating and relationships. I started crying during the panel discussion - I realized how isolated I was and how badly I needed connection with other folx who live a chronically ill/pained life. One of the statements that was made was how having a (often visible) disability makes you seem less desirable to people who may otherwise want to date you. This is something that I am concerned about, given the ableist inputs from my past partners. I worry that potential partners may see me, my pain, my grief/trauma, and be like, NOPE! It's hard not to feel like you are "too much" when past partners have made you feel that way. Another point of discussion was how able bodied people read disabled people as sexless/genderless...no longer desireable or fuck-able as able-bodied folks wonder if we can "have sex." As if that was the only question to ask someone! This gets compounded by society over time to the point where sexual education or health care is practically non-existent for disabled folks. Here's a local news article about it. This ableism has real health impacts! And yet, most able-bodied folks never give a second thought to it because it wasn't their (implied normal) experience. I've come across some fantastic writing about dating while disabled, check out this link about Ableism and Dating. It's pure gold! As is this YouTube video:

I suppose that the battle against ableism is going to rage on for some time to come. I just need to ensure that I do the internal work, that I don't allow myself to get steamrolled by societal garbage around disability and being desirable. My chronic pain doesn't define me, while it affects all aspects of my life, it is not ME. It is simply a part of my existence that must be accommodated. Like having poor eyesight and needing glasses (yes, I wear those too), it's just a part of me. And this thing, this chronic pain that is apart of me? I need to realize that I'm not alone in it - approximately 1 in 5 people in North America lives with pain. Since it's so ubiquitous, I suggest a cultural shift is required. Including for us folks with chronic conditions. I'm going to end this blog with one final graphic because I love it sooooooo much: