I was recently in a discussion with someone and had cause to mention some of the struggles I’ve faced, of which the highlights include five heart attacks, a saddle pulmonary embolism that should have killed me, end-stage kidney disease meaning my kidneys no longer function and I’m on dialysis three times per week to stay alive, diabetes, ADHD, a below-knee amputation, and more that I won’t bore you with.
During the discussion — and this has happened many times before — they noted how strong I was to persist through all of that. And on the one hand, they are not wrong. But on the other hand, what choice do I have?
But I wanted to talk a little bit on this topic.
If you had told a much younger me what I was set to go through later in life, I’m not sure I could have handled knowing that. And I think that’s one thing that people don’t realize: When you’re thinking about going through something severe like a heart attack or amputation, I think the brain thinks about it like you have a choice. “I would never choose to go through that” — and indeed, nobody would. So I think it is natural to be horrified by the prospect of facing such things.
But that’s not how it works. When I had my heart attacks, I obviously didn’t think to myself “Self, would we like to have a heart attack today?” No, of course not. With my first heart attack, the symptoms came on gradually. Over the course of a couple of weeks, I had pain in my left shoulder that wouldn’t go away. It was sore. It gradually increased and it got to the point where I couldn’t find a comfortable sleeping position.
Rachel asked if I wanted to go to the ER, but of course it was just a sore shoulder, surely it would straighten up if I could just figure out how to let it rest in a proper position. But after the morning she asked, later that day I was just in more and more pain, and I called a Lyft to get to the ER since I didn’t have a working car at that time.
Yes, I took a Lyft to the hospital for a heart attack. In my defense, I had no clue that’s what it was. And in my defense, I had apparently been having a heart attack for a couple of weeks at that point!
In the ER, I got an EKG. A couple of minutes after that, several nurses came in¹ and I found out I was having a heart attack and that they wanted to immediately do a heart cath on me.
Now, of all the procedures I’ve had done to me, a heart cath is close to the top of my list of “do not want” items. To say that they are unpleasant is an understatement. I get squicky about medical stuff anyway, and feeling them move around inside my body along with the fact that it is moderately painful is not a fantastic combination.
But what choice did I have in that moment? The heart cath would potentially be able to ease the blood flow and help keep me alive. Not having the heart cath would not guarantee death, but it certainly would increase the chances. And so, in that moment, I chose to have he heart cath. Although it was an easier choice before the first one. I’ve had five in total now, and once I knew what was involved, I had more hesitation each time. But ultimately, the potential benefits outweigh the discomforts, and so it was an easy choice from one perspective while still being a hard choice from the other.
But that is my point.
I would not voluntarily choose to have a heart cath. Nobody would. But when you are in a position of needing a heart cath, the alternative is much worse. And so the logical human chooses to have the heart cath.
My amputation was a similar choice. After the partial amputation (just behind my toes) had not healed after nine months of trying, it got to the point where the doctors were beginning to think it was not going to be able to heal. And the longer it was not healed, the more chance there was for the related infection to spread to the rest of my body and kill me.
It was not an easy decision. After around 7-8 months of trying to heal it, the doctor began waffling on the issue. I saw him every week, and Rachel and I love to tell the tale of how one week he’d say “I think we’re going to have to amputate, but let’s give it another week” and then the next week he’d say “Well, I think it might be looking better, so let’s give it another week.” It literally went back and forth like that for several weeks.
But then he got to the point of starting to say “I think it’s not going to heal.” It wasn’t a moment of “This is definitely not going to heal.” That would have made the choice easier. But ultimately, I had to weigh the continued risk to a full-body infection that killed me vs. trying to heal a wound that hadn’t healed for a number of months at that point. And so ultimately, I decided to do the amputation.
And as much as I have struggled to walk since then, I do not regret that decision.
And as much as my life has been impacted by being a wheelchair user, I still do not regret that decision.
And as much as I do try to take pride in being strong to have made it through all these things, at the same time, to the question of “How did you make it through all these things?” I have to tilt my head to the side like a confused dog and counter with “What choice did I have?”
What choice do I have?
I cannot undo the amputation, nor the heart attacks, nor the pulmonary embolism, nor the unmanaged diabetes that contributed to all of this, nor the late ADHD diagnosis that also contributed… I cannot undo any of the things in my life that led to this point.
My choices are:
- Kill myself
- Continue to exist
Well. That’s an easy choice to make, isn’t it?
And of course I struggle to try and do the things that improve my health, or at least slow the decline; I try to do things that will improve my quality of life; I try to do things that will stave off death and make life more pleasant in the meanwhile. And to the degree to which I succeed in doing those things, my life is improved. And to the degree to which I am unable, my life will continue until it does not.
The last topic I wish to cover is an interaction with a psychologist I had after my amputation. When I was in physical rehab, it was apparently a standard requirement that a psychologist stop in and have a talk to make sure I was handling the amputation well mentally. I remember the initial conversation well, because I was slightly worried at just how well I was taking it. But he reassured me that many people in a similar position - where the amputation had come after a wound that wouldn’t heal - were similarly relatively unphased by the actual amputation because they had had time to mentally prepare for it, and for them it was an improvement from the never-ending wound like I had faced.
But he had to have a couple of sessions with me, and he’d mentioned that walking down the hallway, he’d heard me multiple times trying to make the staff laugh - to brighten their days. And he’d also heard me blame things on my ADHD.
Which I do. I am very vocal about my ADHD because it is such a large part of my life. I know it makes me explain things a lot because I’ve learned over the course of my life that if I don’t explain enough, people don’t hear the important bits I failed to say, and they don’t understand what I mean.
I’ve learned over the course of my life that there are a lot of social issues that are caused by my ADHD, and while I’m not always able to overcome those issues, I can often recognize and at least acknowledge them, and apologize for them; although sometimes I am jokingly blaming things on my ADHD or jokingly apologizing.
But then he said something that, to be honest, makes me tear up a little bit every time I think about it. He said something that punched me very very deep in my gut: “You have ADHD, yes. I’ve heard you talking about it, apologizing for things because of it, blaming the ADHD for these things. And you’re not wrong, but there’s something I want you to think about. When you try to make people happy and smile, that’s not your ADHD. That is you deciding to do that. And you shouldn’t blame your ADHD for the things that you choose to do.”
Many folks with ADHD have problems being very self-critical. Well, frankly, in many ways we learn to loathe ourselves because of the negative feedback we tend to constantly experience. I grew up with the “knowledge” that I was lazy and made bad choices. I grew up with the negative social feedback of being awkward. I grew up knowing there were many things wrong with me that I couldn’t seem to fix.
Being diagnosed with ADHD and finding out that I had a reason for a lot of my struggles in life was freeing and refreshing. While I might still be a failure in life in many ways, I was not a complete failure of a human being.
And so it was helpful for me to remind myself and others that some of my struggles came from ADHD. Requesting a little patience and grace, bearing that in mind.
But it’s very easy to focus on the negatives. It’s very easy to “know” that I am still, in many ways, a failure at life. I had no successful career — the ADHD tax is very real. It has impacted my health and my expected lifespam and quality of life.
It is very easy to internalize all this negative lack of self-worth.
And so it was a punch in the gut to be reminded that while I deal with all of these struggles, and while I make many bad choices, I also should take credit for the good choices I make.
I choose to try and make people happy. I do that because I care about people. I have huge empathy and sympathy.
And while on the one hand, my entire point of this writing was to encourage everyone to be strong against the struggles they face in life; to explain why it is natural to keep struggling; at the same time, I do have to remind myself that I am strong, and that I do choose to persist and keep trying.
So the last point I want to make is that when you are faced with difficult decisions or struggles; when life throws a monkey wrench at you and gives you problems that impact your quality of life:
You do not get to choose what happens to you. You only get to choose how you react.
So take a deep breath. Take time to process the new information and situation. You can take time to emotionally process it and it’s natural to be angry, sad, et cetera. But then, you must keep calm and carry on.
Because what other choice is there?
If you spend all your time thinking about the past and what you could have or should have done differently, then you will accomplish nothing. And future-you will look back and regret spending all that time wishing you could change what you couldn’t, and not trying to change the things you can.
You cannot change the past. You cannot change the future. You can only decide what to do now, in this moment. And the next moment. And the moment after that.
Do not beat yourself up for the choices you have made. Those choices have already happened. Keep trying to make better choices as you are able.
And choose to keep on keeping on.
—Isaac Eiland-Hall
¹ Note that this is never a good sign. I’ve had it happen multiple times, and no good news follows a gaggle of nurses entering the room.