This is the long-delayed third part of a 3-part post about my experiences leaving my job, starting a business, and taking control of my life last year. I really recommend reading part 1 and part 2 first.
This post is also a lot longer than I meant it to be, because I have so much I want to get out, there’s too much I don’t want to leave out, and editing it more would only delay me posting it even longer. But if you follow my blog, pieces like this won’t be the norm for me. This one is special.
(I also kind of left the Hobbit theme here, but I’ll come back around to it with something relevant at the end.)
In this part, I’ll go into some other difficult events that also affected me last year during all the other situations I dealt with, but also how I used those experiences to change the direction of my life. I don’t know if a trigger warning is really necessary, but I want to mention in advance that I’ll be talking about topics like depression, PTSD, suicide, and loss.
I do hope it helps someone else.
And don’t worry, it won’t all be a downer. In fact, I hope it’s the opposite.
I want to start by going back a bit.
While growing up my older brother and I had a pretty contentious relationship. He bullied me pretty much constantly. A lot of it was typical sibling stuff, but he also had a lot of personal issues, and he often focused on me as the target of his frustrations.
Unlike me, he was also extremely athletic and worked out obsessively, maybe as a focus for his manic energy, and while he often tried to push me into participating in sports and working out with him, he always did it in the least encouraging ways possible. He would often force me to “work out” with him, which really just involved him pushing me harder than I could handle while calling me weak. He would get me to play football with him, which often just involved hitting me with the ball and yelling at me when I didn’t catch it.
And it all turned me off to exercise and most of sports in general for much of my life.
Years later, after lots of counseling and some deep introspection, he called me up one day to apologize for how he had treated me all those years, and I immediately forgave him. Over the years we eventually bonded in our own way, like a lot of siblings do when they grow up. He still had issues, and having him in my life was always a challenge, but our relationship at least was mostly positive.
And eventually when I reached my thirties, with the encouragement of friends, I started to really work out for the first time. I created a new relationship with exercise and taking care of myself. I started to get pretty fit and it felt great.
But ultimately my illness had other ideas.
The Challenge of Exercise
Working out now is a lot harder for me than it should be. Besides my regular problems with fatigue, dysautonomia and specifically the postural tachycardia (POTS) that I have often result in something generally called exercise intolerance, which results in extreme difficulty doing any kind of exercise or physical activity. It might manifest as fatigue, pain, or lightheadedness during or after a workout.
This is exercise intolerance in action:
When someone talks about just not feeling like working out, I think it’s easy to confuse this problem with “laziness” or “lack of willpower” but the reality is – when it’s hard to even get out of bed, shower, and leave the house, then actual exercise can take a real toll on you. I spend most of my day working towards building up the energy to just do much of anything, usually hitting my peak late at night, at which point I often feel pretty “normal.” I even looked into 24-hour gyms at one point, but the ones I found were always prohibitively expensive.
Once my current symptoms set in a few years ago, I would have to conserve my energy to get to the point where I felt like I could even do any physical activity, and during and after working out I would feel extremely light-headed and fatigued. I would often have to lay down for a while, and would feel generally useless for a few hours afterward. Sometimes I would shake. I found that my elliptical was too hard to use. Over time it got harder and harder to make it to the gym, or even to do any kind of workout at home. It was hard to the point that I felt it was actually impossible at the beginning of last year.
This difficulty with exercise is made more frustrating by the fact that physical deconditioning is a major component of POTS symptoms, and in many cases it can actually be alleviated (somewhat) by exercise. Exercise is often one of the first treatments suggested by doctors, and several have refused to recommend additional treatments until I’ve done some amount of exercise first. It’s a tough pill to swallow(no pun intended) when you feel like you can barely get around. There are even programs designed to cater workouts and physical therapy to people with exercise intolerance and orthostatic issues, but I’ve personally never found one that could work with my circumstances, or that I wasn’t warned away from by fellow patients. And I’ve never been able to talk to an expert about approaches I could take.
I’ve also been told repeatedly that water exercise would be advantageous because it would not only offset the difficulties with standing during the workout, but also better strengthen the nerves in my legs that cause most of my problems. But I’ve never been able to find time or energy to go during the day when pools are open.
So all around exercise just seemed like an insurmountable challenge. I was sure I just couldn’t do it. I got tired of paying the steep monthly fees for the gym membership I wasn’t using and let it lapse. I basically… gave up for several years.
But my brother changed all that last year.
Early last year my brother came to stay with us for a while. He was deep in depression, struggling with anxiety and trauma, and needing a support system while he sought treatment. Thoughts of suicide hung over him – something he’d attempted multiple times over the years, including a few months earlier. He was traumatized by his mental illness and recovering from a damaging relationship. He was deeply troubled and we offered him help and a place to stay. So while fighting my own battles with health and work, I would use sick days to take him to his counseling, and would force him to take his medications, while at the same time hiding my own from him.
(I should actually take a moment to point out that since he was adopted, none of his issues were related to the genetic EDS or dysautonomia I dealt with myself. Whatever inherited difficulties he had came from a very different place.)
But most of his time with us was spent on our couch, where he slept, ate, and played games on his laptop, deep in a funk that he couldn’t climb out of. Eventually we realized he was scared to leave the house and to be around people. His presence was extremely difficult and draining on my family.
Late at night we’d have long, deep conversations about life and how our brains worked, and we’d talk about my own health and work issues. In spite of his doubts about his own abilities and future, he said he really believed in me and told me time and again that I needed to be working for myself. And more importantly – he told me that I was capable of doing it. That I’d be more successful working for myself, and that I’d be more free to work the way I wanted and needed to work. That I needed to take control of my life.
He felt like I could do what he couldn’t, even given how difficult my own circumstances were.
And he told me that I needed to be exercising.
Among the many other degrees and work experiences he gained in his whirlwind life, my brother had also worked as a certified personal trainer. And he really needed to be exercising himself – it had always been his hobby and his catharsis, and at that point he just couldn’t bring himself to do it. He knew that working out in general would help his mental state, but he was paralyzed with fear of leaving the house, and even of going to the gym. He couldn’t even bring himself to do any workouts at home, or get on my elliptical. I didn’t totally understand his fear, but I recognized that in a way it was similar to my own. So ultimately I found something that would get him out of the house – I suggested he take me to the gym, and he agreed.
It also turned out the gym chain he used was very affordable and open 24-hours – perfect for the crazy schedules we shared. So in the middle of the night, after the rest of my family was asleep, we’d take off. We’d work our way around the gym as he showed me the various machines and types of workouts I could do. For a brief time he became my own personal trainer and coach.
The most surprising part of the experience was that it was such a far cry from our childhood “workouts.” Now when we went to the gym together he was considerate, patient, and supportive. He understood my limitations, and showed me how to work around them. We focused on using machines that I could use sitting or lying down, and we took frequent breaks. He would challenge me to push myself, but recognized when I reached my limits.
Over about four weeks he helped me learn how to really test my limits for the first time, and to not accept the idea that I couldn’t do something without at least trying it first. Unfortunately at the same time he was trying to teach me this lesson he didn’t do much of anything for himself. While I did some workouts he had laid out for me, sometimes he would pick up a weight and start to do reps, then shake his head and put it back down.
I don’t think it was too physically difficult for him.
But I know that he did get something out of helping me – he felt like he had value that he could share, which was a feeling he had been missing in his life. He started talking about going back to doing personal training professionally.
After a month I had an exercise program and the understanding and motivation to follow it. And after he eventually left us and went back home to deal with his problems and figure out his future, I kept at it on my own, and checked in with him whenever I went. He’d get on my case when I didn’t go, just like I needed. At some point I thanked him for helping me start to turn things around, and in turn I encouraged him to keep believing in himself and to get the help he needed.
But it didn’t work. After running out of his medications he sunk into a deeper depression and psychosis, refused to get more medication, or any kind of help… and a month after leaving us, he succeeded in taking his own life. It was a year ago this week.
It’s pretty easy to describe that period leading up to and after what happened as the most difficult time in my life. The pain and anguish we went through was almost indescribable.
But despite dealing with the grief and loss and trying to understand what happened that I have had to deal with, my brother also managed to leave me with a new mental state. He shaped me and my future far more in that one last month than all the years he ever did growing up.
A month later I quit my job, and didn’t look back.
After his loss it took me a couple months to get back in the gym, just for the emotional difficulty. But eventually I made it in. Then I slowly kept going, kept pushing, got back on the schedule, kept testing my limits. My wife gave me encouragement and support. A friend offered to keep me accountable, and I still frequently check in with her when I go. Over the next few months I started feeling better, and at this point I’ve been going regularly for almost a year.
I haven’t seen much improvement of my symptoms yet, and I know that it will take a while. But I have seen a big improvement in my overall well-being. I feel better. I feel stronger. I feel more mentally capable after I work out. The fog clears some. I feel emotionally healthier and better able to deal with everything when I’m hitting the gym regularly.
Late last year I met another dysautonomia patient named Jenny, and learned that she’d been working out heavily over the past couple of years, and that while she was doing more in her workouts than I thought anyone with POTS could do (she recently deadlifted past her own weight), she said it took about two years of working out before she started seeing any real improvement in her symptoms, and she still pays for every workout. And for anything else she does.
Everyone’s different, but Jenny’s story was a good insight that it both could be possible to get better, that it will be hard, and that it can take a while. I realized that I can’t give up if things don’t change enough. I know I’m probably in this for the long haul.
And I keep having to remind myself to follow my brother’s advice and constantly find the balance between pushing myself and being careful not to go too far. I still pace myself and take a lot of breaks. But right now I’m erring more on the side of doing too much than not enough. I know now that I can handle it.
It’s sort of a metaphor for my life in general right now.
I’ve learned to change my understanding of the word “can’t,” and I’ve started to push it out of my life.
My brother couldn’t overcome his fears and self-doubt, but I know that was a manifestation of his mental illness. When he was medicated he knew what he needed to do to fix his life, and that he could overcome his challenges. In the end the illness won, and his fears took over. I won’t let mine.
It’s not that I owe it to him, it’s that I learned from him. That he taught me better than he was ever able to do for himself.
So at 1 AM in the middle of the night, I’m there – pushing myself, ignoring the idea that I “can’t” do something until I’ve pushed myself to prove it.
A Matter of Perspective
There’s a common thing I’ve seen in patients with POTS and similar problems, where they’ll sometimes push themselves to do things they need or want to do, to even be part of the world, and then they’ll pay for it later. Someone might clean their house and collapse at the end. Someone else might go to a concert and spend the next few days in bed. I’ve also noticed that a lot of POTS patients are similar to me in the sense that once they start moving they can do well and keep going, only running into problems when they stop. As with Jenny, I frequently hear how POTS patients can, for example, make their way around a grocery store, but it isn’t until they stand in line at the end that they feel light-headed and the world starts to close in.
It all makes me want to keep going and just refuse to stop.
I was also really struck by this story of high school sprinter Kayla Montgomery when I saw it on ESPN recently (ironically enough, at the gym). Kayla didn’t just run track in spite of her multiple sclerosis, she excelled at it. She ran her heart out despite – or maybe because of – not being able to feel the pain, and she would win, falling into her coach’s arms at the end of the track.
Her amazing story is really worth watching.
I can’t compare myself to Kayla, but I think sometimes we do have to just push ourselves till we crash. Then keep pushing ourselves, and keep crashing. It may be that that in some cases that’s the only way to get better, or to achieve the things we want to achieve when our bodies, minds, or life stands in the way.
I’ve met a lot of patients with illnesses like mine who are literally too debilitated to function and get out of bed or a wheelchair, much less walk, exercise, or even live their lives. But I also think there are a lot of us who also hold ourselves back with fear and self-doubt, and by letting our minds determine what we can’t do.
But there’s also my friend Claire.
I met Claire several years ago as a fellow dysautonomia patient and patient advocate in my area, and we quickly bonded over our common illnesses, and a shared love of all things geek. She was extremely debilitated during this time, far more than I ever have been. After spending months in the hospital following the birth of her second child, and having been forced to shut down her successful flower business, she was now essentially homebound and mostly bedridden, and relied heavily on a motorized wheelchair because she could barely stand without fainting. She couldn’t climb stairs, drive, or do much to take care of herself or her kids. Her family helped to compensate as much as they could, but she was essentially trapped in her body.
After years of tests, last year Claire was eventually diagnosed with chronic lyme disease as the underlying cause of her autonomic problems. She went through some new treatments – regular injections of saline through IV (via a port implanted in her chest), then removed sugar, dairy, and grains from her diet – and she eventually started to see some very minor improvement. There were signs that she might be able to get better and live her life again. But then something jarring happened that completely shook up her already difficult situation.
Her husband left her.
After years of being mostly bedridden and completely dependent on others, she was looking at having her own place, having to take care of her kids on her own, and finding a way to work for herself to make a modest income on top of her disability income. She discovered she had to push herself more than she ever thought she could.
And then an amazing thing happened. She started really getting better.
In August my wife and I took her out for coffee – one of her first times going out with people in three years. Soon after that she and I had lunch out too, and then she started meeting up with old friends. She started using Lyft to get around and attending social meetups, meeting new people and making new friends. She started driving again. She started picking her kids up from school, taking them to the park and to their events. A couple of weeks ago she attended a local sci-fi con, steampunk costume and all. She’s started working on restarting her business. She lost 75 pounds. She started dating.
The medical and dietary changes she made definitely had a big impact, but it wasn’t until she moved out on her own that she reached the point of minimal function needed to start really getting better. She no longer had her husband to lean on, she had to take care of herself, and she had to take care of her kids. So she pushed her limits, and found that even while getting better she was able to do far more than she thought she could – more than anyone else had given her credit for, or ever helped her to do. She was no longer bound by the lower expectations of those around her, or even her own.
She realized she was only getting by and accepting her situation when maybe she could have been pushing herself to do more. And she didn’t learn that until she really tried, and now it seems like she has no limits. She still crashes, still pays for every physical thing she does, but she gets out now more than I do. I find myself needing to keep up, and I’m glad for it – for her sake. And because she serves as an example of what’s possible.
I recently heard an episode of NPR’s Invisibilia that talked about Daniel Kish, a blind man who learned how to get around just using sound – even learning to ride a bike – and who now teaches others not just how to use the same techniques, but to change all their perceptions about what they’re able to do. And he teaches those around them to raise their expectations of what blind people are able to accomplish. It resonated with me and seemed like it probably applied to Claire’s experiences the last few years, and maybe my own.
If we have low expectations of ourselves and those in our lives, we’ll never truly discover our real limits.
A Call to Action
As I mentioned above, I recognize not everyone with a chronic illness like mine can do even the least bit of exercise or any physical activity.
I know that my symptoms are bad but still not nearly as bad as what many others deal with. I think everyone does have their own limits.
And not everyone who struggles in a workplace is in a position – or has the in-demand skills or business knowledge I have – to be able to take a chance on just up and quitting their job and hope for the best.
I also know that not everyone has the amazing support that I have from family and friends. Not everyone has an amazing spouse like my wife Amy, who not only never questioned that I should quit my job – she didn’t understand why I didn’t do it sooner. She’s been there for me during the most difficult times, compensated for me and supported me, and pushed me to be better the whole time.
And not everyone has as supportive a father as mine, or a mother like mine, who I was so scared to tell I was leaving my job during what was already a traumatic period for our family – mostly due to my fear of her worrying over me – that I didn’t even tell her until after I’d already left, but who took a moment to think about it, took a deep breath, and said “Good. You can do better.”
I know in a lot of ways I actually have it good. My limits are broader than others.
But still I think quite often people with these challenges in their lives don’t push those limits enough.
And people who don’t even have these kinds of physical, mental, or emotional challenges have almost no excuse not to be pushing themselves. I was really struck recently when I saw Simple Programmer blogger and speaker John Sonmez posted a podcast about overcoming your limiting beliefs, which he recorded while running farther than he ever thought he could, just by choosing not to stop.
I realized in the past year that I was pushed to a point where I had to make a change and not look back. I was broken by life and illness and stress and loss, and decided I had to push myself further than I’d ever considered possible.
And I’m still pushing.
Case in point – in the lengthy process of writing this post, I thought a lot about this new mindset, and upon reading back through what I’ve written – I caught myself.
You might have noticed that I mentioned earlier that I can’t get out and go to the gym during the day, and that I can only really exercise very late at night when I have the energy levels to get out and do it. Well, now I’ve decided to question that assumption, and test it. I’m separating “impossible” and “very hard” in my mind, because I know that the latter can actually be done. So in the past couple of weeks I’ve been to the gym twice during the day. It was extremely hard both times – I was light-headed and had to take long breaks, even laying down on the floor a couple of times (I need a sign that says “Don’t worry – I’m fine”). But I’ve recognized that at this point one of the few things that might actually improve my physical state during the day is to push this limit, and assume that by doing it enough it’ll eventually get easier and easier.
I drink water, lay down, take deep breaths, wait for the spots in my vision to go away. Then I get up, and I keep going.
It will get better. Soon I’ll go to the pool during the day too. Maybe eventually I’ll start getting stronger, sleep better at night, and have more energy during the day. Maybe eventually I’ll feel like I can rejoin society, and spend more time with my family on weekends. I won’t know until I try.
What it all comes down to is this – looking back at the past year I’ve learned that there is definitely a line between the things I can do and the things I absolutely can’t do, but that line isn’t where I thought it was, and I won’t find where it is until I push myself. And I won’t be stopped by my own self-doubt and fear.
The wall that stops me from getting better won’t be a mental one.
Whether he meant to or not, that’s what he taught me.