Tag: Disability

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Chronic Disease Emotional Work

Day 196 and Exhaustion

I’m terrified of being tired. It’s the first sign of illness and a trigger of a cascade of traumas for me after fighting for two years to recover my health. The fear I feel when my energy flags is more than mere phobia. It’s the kind of gripping all consuming fear that stops all other emotions from surfacing. It’s a fear that stops joy and anger. It stops my my breathe and chokes out my chest if I pay it too much mind.

I’m already shedding unbidden tears probing a little at the edge of this fear. The fear that exhaustion will never lift sits in my body, scaring me into believing I’ll be trapped forever.

I’m more afraid of fatigue than I am of pain. Pain is complete and totalitarian yes. It limits your world sometimes in the extreme. But pain is not an enemy that cannot be overcome. When pain spikes or throbs I’m equipped with tools to combat it. It’s not that pain isn’t terrifying and all consuming. I’ve written about the challenges of chronic pain. How it robs you of your right mind. But it isn’t an enemy that extracts complete victory either.

I feel I can fight back. Light pain can be tossed out of my consciousness with mindfulness exercises. Even a slight self inflicted pinch can deflect pain. If it’s unbearable there are pharmaceuticals on hand. It’s not that I don’t find pain to be consuming, I do and it is, it’s that it doesn’t feel impossible to conquer. I have tools with varying degrees of efficacy that let me retain my agency with pain.

With exhaustion I have nothing. I fear exhaustion is an enemy I cannot best. There are no tricks for my mind that give me a boost of energy or remove the obstacle of feeling leaden. The tiredness is too complete to be overcome by mantras. There are no drugs for exhaustion. Stimulants can drag me out of bed but the crash afterwards makes it clear the effect was extracted under duress.

A doctor doesn’t mind giving opioids for a patient with spinal swelling but telling them you are tired doesn’t do much. What could they even give you? Caffeine? Aderall? Of course you are tired they say, your body is fighting inflammation. In this moment, I’m overcoming an infection and a poor reaction to anti-virals. An inability to crawl out of bed is a given. Nothing can be done. I just need to ride this out and hopefully it will lift.

But I’m afraid of the tiredness that has taken hold of me this past week. The fear that all of the work and money I’ve put into recovering my help might have been for nothing lingers. I logically know, and doctors confirm, that I’m simply fighting an infection and we had a slight complication with the medication. They say I’ll be feeling well a few days. They asked me to stay in bed for a few days. But I cannot shake the fear that it it’s permanent. The fear that I’ve lost all my progress is real. I just hope I can convince myself that feelings are not facts.

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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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Preparedness Startups

Day 189 and Cascades

One of the reasons we named the fund we invest out of Chaotic Capital is because I’m obsessed with cascade failures. In complex systems one small change can ripple out in unexpected ways. As players scramble to accommodate these shifts, opportunities for power realignments emerge. This is particularly exciting in systems that are man made as we can only create so much complexity in mechanical systems (unlike biological ones). Most startups are built on technology or engineering that are simple complex systems.

The absolute best description of the risks of a cascade comes from the science fiction television program The Expanse and a botanist named Prax. He is describing a failure in the hydroponics system (which both feeds the people and produces oxygen) on a space station on the moon Ganymede.

Because it’s simple it’s prone to cascades. And because it’s complex you can’t predict what is going to breakdown next or how.

While I’m a doomer and a prepper so it was bound to happen, it was this insight from Prax got me into hydroponics. Cascades and chaos and lettuce fuck yes!

But jokes aside, we’ve got a number of complex systems under strain right now. Supply chains, the financial system, our power grids coping with climate change, and even unemployment benefits are all examples of simple complex systems that are experiencing cascade failures.

I’m not in the mindset to lay a Grand Unified Theory of Simple Complex Systems tonight, because I did experienced one today. Colorado just set another heat record today and my air conditioner crapped out. As I set about closing blinds and checking electrical breakers I worried about how my own survival and comfort depends on cascades not occurring.

What if it had been electrical and my refrigerator went out and not just the air conditioner. Then my $5000 a dose immunosuppressant would go bad. If I can’t have that my spine will swell. Then I’ll be in too much pain to walk. Sure this isn’t a simple complex system exactly but I think it beneficial to go up and down the systems that keep our lives intact. If one system goes down do you survive?

This used to be a topic which we all shied away from. Then the pandemic happened and preppers like myself didn’t look quite so whacky. We told stories about the systems thinking that went into basic preparedness. We got a Nellie Bowles Styles piece. It was a lot of fun. But it belies the seriousness with which the topic of preparedness should be approached.

You probably aren’t prepared for some of the cascades that come as the works gets more chaotic. And no we cannot predict it. Shit is way too complex. It’s fucking chaotic as hell. So get some bottled water. I’ve made it easier. Here is what I keep in my go bags. Do it before the next cascade hits. You won’t regret it. I think Prax would agree.

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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.

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Emotional Work

Day 185 and Small Potatoes

I’ve been stewing on something for the whole day so I’ve not felt I had the mental focus to write. Plus it’s 4th of July and I was busy eating BBQ and watching Roland Emmerich movies. I’ve watched Independence Day every single year since it came out and that’s as traditional as Die Hard on Christmas.

The reason I was stewing this morning is I feel like I’ve been wasting my energy on something. It didn’t start as a waste but it’s dawning on me that I’m not the best at protecting and preserving my limited reserves. I say yes to say too much.

I’ve got to stop fucking around with small problems. If I’ve got the capacity to manifest shit into reality 20% of the time why am I using that up on small potatoes when it’s just as much work to do it at scale?

Why put my energy into solving smaller problems when I can swing for the fences? Why do I think small potato problems are worth an iota of my energy. I am the type of woman who refuses to cook because it’s an inefficient use of time when industrial society has packaged foods. So why the fuck do I keep saying yes to people and problems that I don’t think are worth my time when I won’t even boil water? What the actual fuck is wrong with me.

I just feel too much social pressure to say yes to asks. If someone gets me excited to help I’m terrible at stepping back. I got convinced I was a mean bad person when I said “no” as a younger woman. I was told I wasn’t being accommodating. I was told I wouldn’t be well liked if I wasn’t nicer. Now I’m beginning to realize this was potentially poor advice. Might even be a function of gender (got to be a good girl). Either way I’ve got to stop saying yes to shit.

I’ve got limited energy and time. We all do. But it’s especially true for me as I deal with a disability in my ankylosing spondylitis. A chronic disability means saying yes like an abled person is terrible strategy. I’ve got to play the game smarter, budget my energy and time like the limited resource that it is and get over any past perceptions I cling to about “being nice.”

You know what isn’t nice? Saying yes to something you don’t want to do because you don’t want to hurt someone. Then you hurt two people. And one of them is yourself.

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Chronic Disease

Day 183 and Pain

I forget the contours of pain when I’m not in its grip. Such is it’s overwhelming power that pain is the only thing you can focus on when you are in it, but it melts away from your consciousness like snow on a sunny day the moment it dissipates. Pain is both all encompassing and a ghost on whom it is impossible to keep a grasp.

It’s not an original thought I have here that pain is challenging to articulate. Virginia Woolf wrote On Being Ill

but let a sufferer try to describe a pain in his head to his doctor and language at once runs dry

I have an intellectual grasp on what is happening in my body. I can tell you what is happening in great detail. I take an immunosuppressant twice a month to keep the swelling in my upper thoracic spine down. These drugs makes me a bit more prone to infections as we need my immune system to be suppressed to prevent spinal swelling.

But when an infection takes hold my immune system fights back, the swelling in my spine comes back and the pain resurfaces. The pain will sneak up on me despite me being armed with all the knowledge about this cycle. It is still a surprise even knowing it is coming.

Yesterday I went to a doctor and got antibiotics. I came home and got into bed. And I got stuck. I couldn’t figure out what was happening to me. I’d been reduced to a consciousness unable to communicate with the outside word. I couldn’t even communicate to myself what steps needed to be taken next.

Whatever pain achieves, it achieves in part through its unsharability, and it ensures this unsharability through its resistance to language […] Physical pain does not simply resist language but actively destroys it, bringing about an immediate reversion to a state anterior to language, to the sounds and cries a human being makes before language is learned.

The Body in Pain: The Making and Unmaking of the World, Elaine Scarry

I go from having full intellectual capacity to understand my situation and discuss it with others to being stripped of language within hours. I couldn’t even tell myself what needed to happen next. I was stuck in bed. I tried to watch television but couldn’t focus. I tried to play mobile games and couldn’t focus. I was slipping into pain’s grip. It was only a reminder from someone who loves me that I had been lost from this plane of consciousness. “You are in pain Julie.”

I am resistant to taking pain medications. But it’s less about fear of their addictive power or potency. I am resistant to needing their help. When I’m not in pain I have the capacity to “tough it out.” I am able to hold onto the idea that my mind has some agency over my body. But as pain takes over my senses, I lose my agency and willpower. Pain steals the broader parameters of your personhood. I resist taking pain medications because I do not belief it is possible for me to leave my personhood so completely that I need their help.

But I do need their help. My focus narrows to the pinpoint of pain as it’s intensity blooms. And I don’t even notice it happening. I go from independent human to small body gripped in suffering without any awareness of how it happened.

Any other locus of power or human capacity that I normally retain shrinks to fit around the intensity of the pain. I am not even able to seek relief. That would suggest I retain the critical thinking to recognize what my physicians have prescribed I take and the capacity to enact it. I need to be reminded to take a Tramadol. I need to be coaxed into an OxyContin.

And then relief slowly slips over my mind and body. We think of opioids as drugs that shrink your eyes to pinpricks but I experience their relief more like a dilation of the soul. As the constrictive point of all encompassing focus that is pain is relieved my entire world opens back up.

I regain my mind, my willpower, my focus, and feeling in my limbs. That’s something they don’t tell you about pain. When you are in it you won’t feel anything else. The pleasure of a stretch or the relief of a leisurely walk don’t exist in the same reality as pain. You go from having thousands of senses to just one. You only sense pain.

If this all sounds unfamiliar to you I pray that it stays that way. But if it comes to pass that you are gripped by this monster know that it is ok to relieve your pain. There is no morality to this ghost that takes over your entire world. The only moral good that comes from it will be created by you. Pain will overcome you. You become stuck in it. And sometimes it is within your power to break free.

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Emotional Work Startups

Day 174 and Easy for You

I’m not normally the type that reads business books. I’m pretty disinterested in management techniques and organizational structures because I suck at it. And I bring up sucking at MBA style topics because as I was doomscrolling I came across an older article from the Harvard Business Review. The headline was “why do talented people not play to their strengths?” I clicked.

It begins with fairly standard case study chit chat about the NFL and I’ll admit my eyes glazed over. Why had I bothered to click when I’m so not the business school type. And then I spotted a nugget that rang so true I swear I’ve got a little tinnitus from the “ding ding ding” bell that rang in my head.

We often undervalue what we inherently do well.

I’ve written in the past about my struggle to accept things that come easy to me. I have had a self limiting belief about the necessity of struggle and it’s inherent morality. Maybe I’m rationalizing pain and hardship because emotionally I need there to be a “why” for having fought through a chronic illness. Surely suffering through and taming a spinal disease has made me a better person right? Or maybe shit just happens.

And maybe I’ve been downplaying all of the many super power and talents I have. I’ve spent so much time grieving the loss of the hard things like working long hours and always hustling that I’ve been ignoring that i can win doing things that feel easy. Because they might just be easy for me but not easy for everyone. Quoting the article.

Often our “superpowers” are things we do effortlessly, almost reflexively, like breathing. When a boss identifies these talents and asks you to do something that uses your superpower, you may think, “But that’s so easy. It’s too easy.” It may feel that your boss doesn’t trust you to take on a more challenging assignment or otherwise doesn’t value you — because you don’t value your innate talents as much as you do the skills that have been hard-won.

Working long hours were always hard for me. I fought to stay up late because I would find myself fatigued and in pain. I really valued that because it hurt me. It was hard for me. Whereas I never valued being at being ahead on news and trends, or my facility at gaining media coverage, or how easy I found it to spot when the market was going to move. I distrust the skills I can do effortlessly.

But I realize now that those are valuable skills. It makes me a good investor, especially in private markets where seeing where the market is going and alerting people to potential is very well remunerated. So next time you scoff at a compliment from somewhere on you work ask yourself if what you did is easy or just easy for you. You might be surprised to find you have a superpower you never noticed.

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Chronic Disease Emotional Work

Day 168 and Red Queen Running

On a typical week I spend about 8 hours on health care appointments. This doesn’t include basic human maintenance like good nutrition, exercise and sleep. These are straight up hours I spend with health practitioners. It’s a lot.

I feel a little bad complaining about it as most people don’t have the opportunity to pursue some of the things that hold me together. The American medical system is built for those with spare money and time. But I’m envious of people who don’t spend all their spare time and money on healthcare. I cannot even imagine what I would get done if I was as healthy as the average person.

Regular people have the luxury of emotional dramas, personal hobbies and families. I on the other hand get to go to the doctor. I don’t get to stay up all night obsessing over men. I don’t have the capacity to raise children or parent. I don’t get to train for marathons. I’ve written before about the envy I feel for the lives of the fully able.

But mostly I resent that I have to spend so much time on my health just to maintain my progress. I feel like I’m trapped by the Red Queen in like Alice in Through the Looking Glass.

“Now, here, you see, it takes all the running you can do, to keep in the same place.”

Lewis Carroll

Some might argue that having a disadvantage like this focuses you. I’ve become quite a charmer over the years to offset my physical disabilities. I do more in less time because I have to in order to compete. I’ve found ways to thrive in late stage capitalism. It’s entirely possible I’m not standing still.

There is a whole theory of evolutionary biology that these pressures just to maintain your place in the world are adaptive. In fact, it is called Red Queen theory. I guess just needing to work your ass off just to stand still is pretty normal.

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Biohacking Chronic Disease

Day 162 and Reactivity

I’m sensitive to everything. Physically I mean. I’m surprisingly tolerant of emotional volatility, which means I’m well suited to entrepreneurial nonsense and financial chaos. Physically, on the other hand, I’m a hot house flower. Orchids have a wider band of tolerance than I do. If you don’t feed, water and rest me on a precise schedule I will cascade from blooming to dead in a few hours. Only a slight exaggeration.

I’ve got endless examples I can share. I can go from zero strain & a low heart rate when working out at 65 degrees to vascular distress and heart rate spikes at 75 degrees. When I was younger I would get drunk from one drink and now I can’t even have a sip of wine without turning beat red. If a drug has rare side effects I’m virtually guaranteed to get it. My doctors are pretty familiar with this now and like to make jokes about it. “Well .001 of patients experience thinning hair so you will probably go bald!”

On a day to day basis I hate this because it means I have a lot less flexibility to fuck around. I will find out. I need to keep strong rhythms and routines. And I can often spot when even a planned and positive therapy has negative consequences almost immediately.

For instance, I take an immune suppressing biologic every two weeks to keep my immune system from getting too worked up and causing inflammation. I’ve got ankylosing spondylitis which means the swelling shows up in my spine. It’s good to keep this suppressed. This drug lets me walk and live normally which is awesome! Yay! But on the day of my shot and about 24 hours after I feel like shit. I can literally feel my immune system getting shut down in real time. I’m sniffly, tired and slow today. While this is good in the long run, we want to keep my immune system down, I’m grumpy as fuck that I feel the effects of this drug.

The upside to this reactivity is even modest changes show up in my tracking tools. I can leverage many subtle therapies, diagnostics, treatments and supplements to significant effect. It’s probably a factor in my affection for biohacking. I can see results quickly. The feedback loops tend to be short and noticeable for me, which thanks to tracking many variables over a long time span, means I can isolate effects within relatively short order. So while I’m a pain in the ass patient I’m also a pretty emotionally satisfying one. If you make a correct diagnosis on me you will find out pretty fast. That’s so satisfying.

The irony of this short feedback loop reactivity is that I mostly work on longer term horizons and on extremely volatile things. Maybe it’s because I get the benefits of compounding because I have built up so many positive habits? I don’t get worked up by any individual data point because I’m used to seeing extreme reactions in myself. No big deal. I don’t mind chaos at all because I don’t have much chaos in my daily life because I’m constantly managing my own biology. Maybe I’m actually perfectly suited for my professional life now!