Tag: Pain

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Emotional Work Internet Culture

Day 283 and Presencing

Nick Couldry uses the term ‘presencing’ in his book Media, Society, World to talk about how we go into digital or media spaces to manage our presence over time. It’s a way we cultivate a sense of wider purpose through a public presence. And because of the way suffering and trauma marginalize people, this act of making yourself more visible is even more important.

I was browsing Anne Helen Peterson’s newsletter Culture Study when the above quote hit me over the head. The interview was on the topic of ambiguous grief with a media studies professor Samira Rajabi. While the writing is almost uncomfortably academic it resonated with me immediately. I have been engaging in presenceing for the entire course of my illness. I just never had a name for why I felt like a public presence mattered to me.

While it sounds unbelievable, I never considered that I might be using social media as a way to give myself visibility in the face of the trauma of an extended and chronic illness. I’ve always been a heavy user of social media so I didn’t find it unusual that I spent significantly more time on Twitter and blogging as I went through the diagnosis and recovery process.

I had been used to being visible in my previous life. I was regularly in media for my startups and I had cultivated some amount of public presence on and off since I was in college. But I didn’t really become a Twitter personality that cultivated a presence and interactions and a voice until I got sick. Without knowing it was presencing myself.

In American culture in particular, there is a strong preference for triumphant stories. So we can conceive of suffering if it can be managed and overcome, but rarely do we know what to do with a story of chronic pain and suffering and how relentlessly it reminds a person that they no longer fit into the so-called “normal” world. To me, it becomes even more important for those people to be seen.

I really wanted my story to fit into a narrative when I first got diagnosed. I had all kinds of ambitions of overcoming and healing that were quickly dashed on the reality of my life. I was never going to be normal again. And I hated that. I still find myself overcome with grief at the prospect that there is no triumphant return.

But I want people to see that grief. And see that it’s alright. That life went on. I didn’t lose myself. Even in pain and illness, or perhaps because of it, I’ve gained ground in finding myself. The pain and degradation of illness is ugly and shitty but also powerfully transformative.

I have not given up just because the narrative isn’t clear and the story has no simple arc. Any impression we have that stories have structure is imposed in hindsight. We love our post-hoc rationalization. We love our pattern recognition. But the through line is never clear in the moment. And that’s why presence matters. We all need the visibility of the truth even if it doesn’t fit neatly into the story our culture has given us.

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Media

Day 281 and Villains

This is a post that will have spoilers about the end of the second season of Ted Lasso. Do not read any further if you have not seen it. I’ll put an extra paragraph to keep it from your eyes and we can meet again tomorrow.

SPOILERS BELOW

The first season of Ted Lasso may be one of the most perfect seasons of television ever made. It’s like being inside the best session of therapy you’ve ever had. The kind where you have a breakthrough so profound that the hurt and agony of your worst childhood trauma suddenly feels not only bearable but also the reason to fully love yourself. It’s just that good on the emotional truth scale. The warmth and safety and growth is beautiful.

But season two leans into tropes and villainy where it used to rely on nuance and kindness. Rather than feeling the pride and hope of emotional truth that has been hard gotten (the truth will set you free but first it will piss you off), we are given the obvious end of Nate betraying Ted and Rebecca by going to coach for Rupert’s new team West Ham.

Nate makes a massive accusation that Ted abandoned Nate emotionally but we are given roughly thirty seconds to wrack our brains for these betrayals before it is revealed that Nate has chosen to abandon Ted. How do we feel about this? Wouldn’t we normally explore how both people contributed to the feeling? But nope it’s send Nate right into insecure narcissistic reactivity rather than mine for the potential nuance.

We could have been given a story where we see Nate and Ted equally participating in the traumas they each carry and how it affects their relationship. Ted with his fear of abandonment brought on by his father’s suicide very well may play out that pattern of abandonment on Nate. But that’s left largely unexplored. Perhaps it could have shown us how Nate intuitively sees that because of Ted’s unresolved pain with his father, Ted in fact isn’t fully there for Nate in his new role as a surrogate father figure coach.

The struggles of a young man coping with a new position and unexpected authority granted by father figure like Ted juxtaposed against Nate’s own issue with his father who doesn’t show him respect would have been an empathetic story in the hands of this show.

There was so much fertile ground for how each character could trigger emotions in the other and for how they could own and resolve these feelings. But instead it’s straight to villain don’t pass to don’t collect 200 dollars. By the end I wasn’t even sad about the loss. I’d resigned myself to the conclusion. But they could have done so much better by everyone. Even if Nate must experience his darker impulses we would have been wiling to see the full journey of how he arrived there and the pain other’s traumas has inadvertently wrecked on Nate.

I guess I’m not sad. I’m just disappointed. And that’s how you know it really mattered to me.

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Emotional Work

Day 274 and Amends

If you have ever had an addict in your life you may be familiar with 12 step work. You probably know that the first step is admitting you have a problem. As anyone in recovery can tell you, the steps don’t get any easier.

I have attended Al-Anon and ACA because I’ve had addicts affect my life and I come from a family that has suffered from the dysfunction. I’ve worked the program. It’s benefited me enormously and I recommend it anyone who has experienced the harms of addictions. Because of this experience working the program when I see others in recovery I try to remind myself that working the steps is for them. I don’t owe them anything. But I do believe in grace, forgiveness and redemption is possible.

I had a formerly very close friend reach out to me to work the 9th step recently. They wanted to make amends.

Make direct amends to such people wherever possible, except when to do so would injure them or others

The 9th step is arguably the most powerful culturally to emerge from 12 step programs. While we all know admitting you have a problem and giving yourself up to a higher power is crucial to begin your recovery, making amends is about taking responsibility for yourself. It’s a step people can rush or even avoid entirely. Amends is not about saying your sorry. Amends is about taking responsibility for what you have done so you can move forward in recovery. Only by owning your past actions with those you have harmed can you begin to forgive yourself and believe that you are worthy of sobriety. It’s not really a step about other people so much as it is showing to yourself that recovery is possible.

I was overcome with sadness when this former friend reached out to me. Their alcoholism made me feel deeply abandoned as I lost what has been a close and meaningful friendship. But I didn’t feel any anger. I didn’t particularly feel wronged. Just a deep aching sadness that my friend has been taken from me and there was nothing I could do.

There are people in my life that are in recovery that have never made amends to me. Or at least they have not formally asked to make amends as part of a program. They’ve simply slowly done the work to show me I can trust them in my life. And I’ve forgiven them. But the actual step of making amends is a meaningful one. There is a reason it’s so hard to do right.

I don’t know what the future holds for my former friend and I. The fantasy I have is that they remain sober work to rebuild the trust and friendship we once shared. I missed them terribly. I mourned their loss like a death. But this is my fantasy not reality. Reality will he more complex.

I’m sad that even having been lucky enough to receive amends from them, it doesn’t mean all is well. Our actions have consequences. That’s why the 9th step is make amends and not apologize. Amends is fundamentally about owning what you have done. So while they can now begin the process of forgiving themselves, and knowing that in good faith they did make amends to me, my journey towards regaining trust in them is just beginning.

Which means I need to be responsible for my own feelings. How will my actions to accept contact, make amends, and forgive affect me, my family and my friends? There are other people that were harmed by their alcoholism. I don’t actually know yet. The sadness is still so strong. But I do know that I will attend an Al-Anon meeting, and I will pray, and I will work the steps too. And I pray willingness will come.

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Emotional Work

Day 235 and Grief

One of my Twitter mutuals suggested I explore the work of psychiatrist Francis Weller and his work on grief. I spent two hours with his lecture and another hour on the writing and exercises explored in this talk available on YouTube. I found his five gates of grief particularly helpful.

1.Everything that you love, you will lose. 2. Places inside of you that have not known love. 3. Sorrows of the works. 4. What we expected and did not receive. 5 Ancestral grief

I have been exploring my childhood emotions and the unconscious way those experiences still affect me. Using Weller’s gates of grief I see I need to grieve but also understand these patterns and what I gave up as a child so I can see what to let go now as an adult but also understand what gifts it has left me with.

In the framing of the second gate, I felt abandoned and unloved as a child. There were parts of me that were never loved. It was a challenge to get attention. This has left my inner childhood fearful that love is unreliable, attention is fleeting and abandonment is always to be feared.

Francis Weller asked what are these lessons or emotional complexes protecting? Why do I feel this way and what did I gain? At the heart of every experience is a jewel of great price. I was protecting and nurturing the capacity to get my father’s attention.

As a small child I didn’t understand why he didn’t pay attention to me for the things I wanted and I liked. So I found ways to get his attention through the things he liked. I developed the expectation I would be ignored. I wouldn’t be paid attention to unless I made myself appealing. So I learned to cut deals to be paid attention. I learned useful skills this way. A pearl of great price indeed. But I was also giving up the idea I’ll be loved just for being his child.

That all the things I did to change myself to be paid attention to and to be loved never ultimately got me what I needed when I was a small child is a loss I must grieve. I’ll never be able to go back and feel like I was wanted. No change I made fixed it either. I must mourn the second gate.

To leave behind these coping mechanisms or emotional complexes, to grieve them, is to admit that they did not work. I cannot change that I felt I was not wanted or loved. They have nothing to offer me now. I have to grieve the lack of a loved childhood to love myself in adulthood.

But it is not a bad thing. Francis Well shares that the other hand of grief is gratitude. In one hand we hold grief and on the other gratitude is in our other palm. So I recognize I have gratitude that my childhood gave me the skills to see what others want. I see what they are looking to find. I know what others are manifesting. I see what others are building and making and wanting. I learned to see the power and magic of others so I can hold space for them. And I learned how to golf. Useful skills indeed.

I grieve that this was my tool for attention and love as a child. I deserved love and attention just for existing as a child. But I am grateful for what it has given me as well.

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Emotional Work Startups

Day 230 and Punishment

I wish I understood why we feel the need to punish ourselves sometimes. What is it about human nature that makes us abuse ourselves? Oh we deserve it. It apparently has a social purpose as well according to Psychology Today

Self-punishment tends to serve a dual purpose as it not only relieves internal feelings of guilt but impacts how others perceive us as well.

I’ve been feeling guilty. This month is the two year anniversary of me selling my last company Stowaway to a private equity firm and pursuing a medical leave to diagnose and treat my spinal condition ankylosing spondylitis. It was a happy ending, at least mostly, with the company being put into better hands than mine. But I still felt guilty.

I felt bad I didn’t live up the expectations of our biggest dreams. I felt guilty I didn’t 100x the capital for my venture investors. I felt guilty that my colleagues had dedicated so much to me and I had failed to deliver on the outcome we had dreamed of in our early days.

So punishing myself seemed like the right thing to do. I deserved to be sick. I deserve to be in pain. I deserved for the whole world to read about my experience and my failures. I deserved to be shown in public as a weak sick woman. It sounds so abusive when I write it out. Like I thought I deserved to be tortured. But maybe that’s exactly what I felt.

I am trying to unearth why I have the self limiting belief that punishment is what I deserve. As it’s more than just the circumstance of selling a startup and not seeing the results I wanted. It’s got to be deeper than the rationalizations I’ve given.

I’ve practice family systems therapy. The basic premise is that our childhood informs how we react as adults. And by healing the rough patch’s or even traumas of those times we can live the life we choose. For me I felt abandoned as a child. I wanted my father in particular to be emotionally available. But it just wasn’t to be. But I held on to the idea that I must have deserved to be abandoned. But of course it had nothing to do with what I did or did not deserve. It wasn’t about me at all.

Now I remember that I am a capable, brilliant and above all reliable person who needs to accept what I can be and not be bound by what I learned in failure. Finding that and turning it into your superpower is where the real success comes from.

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Chronic Disease

Day 224 and Wanting a Break

I don’t want to write today. I feel foggy, unfocused and anxious. I had to have a medical procedure last week whose preparation was destabilizing. I felt pretty good coming out of it but a few days on I guess recovery has its own logic.

I don’t want to feel like this. In order to have the procedure done we had to remove me from all of my medications. Not normally something you do unless you have no other choice. Which in the end I didn’t feel I had. And I’m struggling. Modern medicine works pretty well. Some of science is neat.

I don’t want to be writing about any of it though. I’m scared, tired, sad and angry about all of it. I want to be alone. But my mind is so fatigued I cannot come up with any other topics. I tried to focus on fun things like the PR DAO I’m working on and some investments I’m excited about.

But I just can’t seem to make sense without a lot of energy and focus. And the doctors would prefer I keep the energy for my recovery.

So I’m stuck writing baleful takes about sleeping and migraines. I’d rather crawl into a hole and lick my wounds in private but I promised myself I’d write every single day.

And it seems I’m unable to write anything remotely intellectual. It’s all emotions and physical ailments. No wonder I’ve been watching so many BBC period dramas. Their leading ladies seem so relatable at the moment. Which is why I’m stuck writing about life as if I were some talentless version of Virginia Woolf. I’m incapable of writing about anything else but the consuming nature of feeling like shit. Write what you know is all fine and well until the thing you know most intimately is physical frailty.

On the bright side I did learn today that Herman Melville and I share the same diagnosis; ankylosing spondylitis.

Herman Melville endured chronic pains in his joints, back and eyes, symptoms consistent with ankylosing spondylitis, an autoimmune disease.

Maybe pain relief was his white whale too. Of course, he didn’t have the benefit of biologic injections like IL inhibitors. Maybe that’s why he wrote the great American novel and I’ve got a daily writing habit. I know glorifying and romanticizing suffering is a habit I’ve got to kick.

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Chronic Disease Emotional Work

Day 195 and Waiting on Hand & Foot

I’m embarrassed that I need help with minor physical tasks. I’ve got an infection of the self sufficient Americana myth that seems to have taken root right in my very marrow. If you need something done you’d better do it yourself right?

When I was much sicker and undiagnosed two years ago, it felt easier to accept help because surely it must be temporary. There is no harm in needing help if you know you can pay it back tenfold? There is no harm in being unproductive for a time if you can pay it it back with interest.

But what will if can’t pay it back? What if I must rely on the kindness of others forever? Early on I struggled with little things like needing to use a wheelchair in the airport. I told myself stories like“I could walk if I just tried harder and accepted more pain” as I went through the concourse on the way to a hospital stay. I couldn’t pay back fellow travelers for slowing them down. And maybe no one minded that I was sparing myself pain for little inconvenience on their end. Perhaps I could accept small types of kindness.

But what if it’s not temporary? And what if it’s a significant amount of help! What if I do need help with basics for the rest of my life? Thanks to a recent trip my husband took I learned his running of the household increases my capacity by a full 30%. I could do everything just fine on my own but it would make my life much smaller. And it doesn’t seem to make his life any less enjoyable. On the contrary he shines when showing off his excellence in operational matters. It’s possible what I see as an undue burden is something he quite enjoys.

But I can’t quite convince myself it’s a good thing. The self audience myth has a deep hole on me. But if a third of my capacity disapates into tasks like cooking, cleaning, errands, and logistics but I’m enriched and energized by work like writing or working with the media then shouldn’t the choice be obvious?

And yet I still find myself embarrassed and angry about my limitations. . Why did it exhaust me so much to stand and wash lettuce? Or require so much rest to recover from a short run to the pharmacy. Those are small, albeit physical, tasks. My soul feels broken and my body a traitor with these small physical limits.

Whereas other pursuits can be done from bed. And even though it sometimes makes me sad it’s not always my choice, I don’t mind that my world is often limited to lying flat for hours on a mattress. I don’t resent it. In fact, it makes me rather happy. I’ve got the whole world available to me thanks to the internet. I can invest as easily in bed as from a fancy office. Twitter is just as good a connection to the networks of ideas and power as conferences or clubs. Better often.

The only part I resent is feeling like I’m a burden. Like I need to be waited on head and foot like some aristocrat or an ailing relative. Well not like an ailing relative. I am ailing. That part is the. But I can thrive in it with help. I just hope I’m not to embarrassed to take it.

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Chronic Disease Emotional Work

Day 193 and Downward Pressure

I’ve had a terrific year (pandemic aside) with significant progress on my health. I’ve become used to seeing positive trends, especially within the last six months. But the last month has been a mess for me and the downward pressure is getting to me emotionally. I’m afraid. The fear of a setback is palpable.

I haven’t been able to pinpoint exactly what has been causing a dip in my progress or frankly if it is even a dip, as it could just be a few bad days. It may be that I’m just not progressing as fast as I could have hit some Pareto Principle limit and it’s just going to be a slog to get the remaining gains. Some of my metrics continue to improve (I’m seeing cardiovascular improvements still) but my energy, pain and inflammation seem to be going in the wrong direction.

I’m crushed by the exhaustion in particular. And sadly I know this to be real. Because I take immunosuppressants I am prone to infections. To combat one I was put on a course of antibiotics which seems to have some negative side effects. So now I can’t tell if I am exhausted because I am running an infection or because I’m having a bad reaction to the drugs. Could be both.

I feel angry at my body for this pause in progress. I’ve been working so hard at improvements. When I look at how I spend my time I am often overcome with resentment and envy of healthy people. It saddens me how much more of my life needs to be dedicated to doctors than a normal person. It’s especially frustrating as in the spring I was regularly noting how well I was doing and how much capacity I had to work.

Of course, the benefit of writing every day is I can go back and see what was going on. I’ve been doing plagued by the caprice of my body before.

The trajectory of my health is one of continual improvement but scatterplot is jagged as hell as each day vacillates between health and pain.

It’s my hope that this is just another local minima and I’ll be able back to my “normal” soon. Even if I have hit 80% of my gains I can manage with that. But it’s valuable to recognize the negative emotions as they come so we can let them go.

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Emotional Work Preparedness

Day 192 and Cherries in Air Conditioning

I found myself eating an entire pound of chilled organic bing cherries in bed while binging episodes of Downton Abbey this week. Watching the British aristocracy cope with modernity poorly seemed like an excellent balm for the climate anxiety that has been gripping me during the consecutive heatwaves inflaming the American West.

I’m a doomer and a prepper but recently I’ve felt completely defeated by the looming impacts of climate change. And I’ve been manifesting it is a kind of orgiastic panic of consumption. We had a windfall this year and it has soothes some of the panic I’ve had about having the resources to survive. Maybe it will be miserable but we might have enough wealth to avoid dying.

But I’ve been spending more on petty purchases of comfort. I’ve bought 2lbs of organic cherries, the large carton of organic blueberries, the $15 bags of dark roast coffee for espresso, and the $10 bar of 95% dark chocolate without a second thought. We’ve had sashimi for lunch and on Friday I ordered a lobster roll. We live thousands of miles away from the ocean in Colorado. We don’t grow or fish any of those crops here.

The excuse I’ve been using is that I’m concerned (nay convinced) none of these things will survive the next 25 years except as extreme luxury goods. If I can see the changes coming should I not enjoy the access I have to food that will no longer be available in my fifties? If I can see the end coming why conserve? I’m not Exxon or BP or some giant mining extraction concern in China. My forgoing small luxuries as an individual will do nothing to stop the catastrophe and I would like fond memories of the taste of a cool tart cherry in my twilight years. Burn me at the stake for it I guess.

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Chronic Disease Emotional Work

Day 186 and Broken

I’m coming up on my two year diagnosis of ankylosing spondylitis. I’ve had two years of feeling broken as I waded though the long haul from being bedridden to now being reasonably healthy. But I’ve yet to let go of the feeling that I’m broken.

Being a productive worker has been a part of my identity for my entire work life. To experience two years of not contributing financially to anything nearly broke me. What value did I have? How could I ever recover?

But I’m not broken. I’ve got more limits on my time as I just focus on health and wellness to avoid a repeat of my medical leave. But I doubt most people would know or care. I’ve been doing some of the best work of my life recently. So why does this feeling of brokenness persist?

Some of it is tied to me making some mistakes as I transition back to workout full time. I feel I owe people my time and work as I let them down. I feel I have a debt to pay off (not a literal one but more emotional for having stuck with me when I wasn’t useful). So I’ve been tolerating some people and work that I should probably let go. It takes as much energy to work on small potatoes and worry oneself about as it, as it does to aim for the big projects and goals.