It Gets Better: Why You Shouldn't Despair

Eleven years ago today, I was diagnosed with Acute Myeloid Leukemia. I'm amazed at the difference between then and now.

June 2007

June 2018

The funny thing is, though...I almost forgot. You'd think the date would be scarred into my memory like a horrific brand—but for at least the last several years the date sneaks up on me and it isn't until one or two days before (and in a couple instances, the day of) that I remember, "Oh, yeah, cancer...that happened."

It's a good thing, though. A few years ago, this day was a crushing reminder of all I'd lost. The college experiences I'd never had, the physical activities lost to me through the damage caused by both cancer and cure, my freaking gorgeous hair, all of it. I'd hide away and mope and cry and numb myself as best as possible, all to get through one single day.

I'm not sure when that stopped, within the last five years for sure. The question is...why?

There are a couple things I've attributed this to:

1. Adaptation: The human mind is a crazy, weird, wonderful thing. I couldn't even begin to list all the fascinating things about it, there's been countless books written on the topic, but the one that helps dull the pain of remembrance and allows me to forget the day my life was forever changed is our ability to adapt to even the most mind-bending situations.

There's a lot said about desensitization today, particularly when it comes to violence. However, we're constantly desensitized to almost everything. Think about it—to people living 50 years ago, our lives today are almost unrecognizable. The sheer ingenuity and complexity of our technology alone is an absolute marvel and wonder.

We landed people on the Moon! "Yeah, whatever, big whoop, let me look at cat videos." Now, wait, how can you even look at cat videos? Less than thirty years ago, it was next to impossible to easily access the wild and wacky antics of fuzzy felines, now, it's a ubiquitous phenomena that threatens the very fabric of our existence. Or something. Maybe not. But you get my point.

Same thing with cancer. I started off numbed to it, not through desensitization, but through sheer shock. "Surprise! You have cancer. Here's a menagerie of exceedingly toxic chemicals, have fun." Ten years later, that doesn't phase me. I've relived and replayed those memories thousands upon thousands of times—especially when writing my memoir—and over time, my well of tears dried up, my anxiety and trauma of revisiting those nightmarish days of life and death faded, and it all just seems routine.

I've had ten joint replacements since 2010. I'm so used to surgeries I actually look forward to them now! It's my new normal, a known entity—as opposed to normal life which scares the hell out of me because I have so little experience with anything outside being pumped full of drugs, of having pieces of me ripped out and metal shoved in their place. But that's just another thing to get used to, and I'm sure that the more I expose myself to the more mundane, normal experiences most people know, the more my anxiety with regards to that will fade.

2. Time: There's a stupid cliché about time healing all wounds—it's utter BS. Time doesn't heal all wounds, not by a long shot. But it does grant you perspective and distance, and with that, an easing of suffering.

The memories and traumas become fuzzier, less distinct. It begins to feels less and less like something that happened to you—though there are still moments when it comes back clear as day. Of course, the pain never really leaves, but you're able to put it into better context.

While you're dealing with cancer and treatments and the after-effects of both, it's hard to focus on anything but the present. A decade or more later, you can look at where it all led you. Is it likely your life isn't as good as you would have hoped before cancer? Sure. But you get a chance to view your past through whichever lens you chose. Did cancer mess everything up? Or did it set you on a different path?

The key is spinning cancer in a positive light, in reframing your experience so you can find positives to take away from it. "But cancer sucked, how can anything good come from it?" Good question. I can't answer that, because all experiences differ—we're individuals, our paths diverge from the common origin of diagnosis. The only person who can reframe your traumas is you.

So, for those going through cancer now, or having just entered remission, don't give up. It takes time, experience, it takes getting used to, but the mental and emotional anguish of your fight with cancer—if not the physical difficulties—will dull. Let that comfort you in difficult times—for we are only as strong as we think we are.

Takeaways:

• Cancer sucks (shocker)
• Your mind has the ability to adapt to even the most challenging situations
• Distance and perspective help to ease the pain of past experiences
• You're as strong as you believe you are

National Cancer Survivors Day - What Can You Do?

Today is National Cancer Survivors Day.

So, let's talk about the ugly truth: surviving cancer is just the beginning.

This is a topic for which I raise awareness whenever I can. I've given talks to schools about the realities of life after cancer, and it was the main drive behind me publishing my memoir about my battle with cancer and also the effects of the treatment.

For most people, they receive an almost overwhelming deluge of support when they're first diagnosed. In my case, my hospital room felt like a daily revolving door, with dozens of visitors throughout the day, and sometimes with groups of 10+ showing up to check in on me. But over time, the support turns from deluge to a downpour, then to a rainstorm, then a drizzle, then a spritz, until it becomes mist so fine it's difficult to see sometimes. Toward the end of my treatment, I would go days without having a visitor—though there were still a handful of friends who would come to see me or text me and things of those nature.

This effect becomes more pronounced once you enter remission. A lot of people tell you, "Good job! You beat cancer, so you're all better and don't need us anymore. Peace, dude." Okay, maybe they don't say it like that—certainly not so overtly—but that's the gist of it: You're all better, you don't need us. Except you do.

Just because someone is in remission doesn't mean they're cured or even better. There's the fear of the cancer returning; depression and anxiety and PTSD common among a large portion of survivors; drug addiction from all the narcotics, which affects roughly a third of all survivors; and a whole menagerie of other side effects that vary from cancer to cancer, treatment to treatment, person to person—too numerous to even begin listing.

It's this fact, that there is still a lot of recovery for most survivors, that seems to get swept under the rug. Personally, I believe this is due to a couple factors:

1. People just want to be happy for you. Everything is good and you can return to your life. That optimism, while good-natured, tends to gloss over the side effects from having chemicals pumped into your body that are so toxic the nurses have to wear gloves when handling it, or being dosed with radiation, or having bits of you cut out. So, instead of: "You beat cancer, hip hip hooray!" the reality is more like: "You subdued cancer for an indeterminate amount of time, hip hip replacement!" 
2. The majority of the focus—the research, the attention, the money, the drug studies, the support—goes to cancer. It makes sense, cancer is a single big bad monster that is easy to vilify and rally against. What's not so easy to gather an army of support for is the million problems that come after. There are an insane number of different side effects, but the bigs ones for me were: Graft vs. Host Disease (which did a better job at almost killing me than cancer), Avascular Necrosis (a degenerative bone disease that came about from treating the GVHD and so far has led to 10 joint replacement surgeries), depression, anxiety, PTSD, arthritis, osteoporosis, drug addiction, 100 pounds of weight gain, and quite a few other smaller issues that cropped up as the result of treating both the cancer and the side effects of the cure.

So what can we do to better care for our millions and millions of survivors? People in the medical field can work to create more and better Wellness Clinics and Survivorship Programs. There aren't a ton out there at the moment, and hardly any when I was first going through my early post-remission days. Having resources like these available, places where your care can be centralized so you don't have a small army of doctors and specialists who don't communicate taking care of your variety of problems, is key to ensuring the survivor has the best quality of care possible.

For everyday folk, friends, family, the best you can do is continue to be supportive. I know it's exhausting work and painful for those close to the survivor, believe me, I do, but the best way for someone to get through all the challenges is to have a good attitude.

Now, that doesn't necessarily mean they should always be positive, because there will be sucky days where they feel like a cold turd warmed over, but it means being there for them and assisting them with whatever possible. Distractions are good, doing stuff they used to do to give them a semblance of normalcy, even if for an afternoon.

If you're not sure how you can do that, then ask them. I think there's a fear of bringing up health issues with cancer survivors and patients in case such topics depress or upset them, so it's best not to remind them. However, that is hardly the case. In fact, talking about such topics may actually be better than sweeping them under the rug, where nary shall they be seen again—it stops survivors from feeling like everyone is walking on eggshells around them, like their experience, horrific though it may have been, never happened. News flash: it did. And discussing it allows you to learn what the survivor most needs to be in the best frame of mind.

So, the best thing you can do is be open and honest with survivors. Remember, survivors are not delicate panes of glass, but people, as vibrant and diverse in experience and need as anyone else.

If you know someone who is a survivor, or if you know people who are friends with survivors, please pass along this information. It is vitally important that we spread awareness about life after cancer so survivors can receive the same quality of care and support that cancer patients.

Coming Out Aspie

Hey, all,

Over the last year, I've been debating a rather personal issue—whether or not to reveal my true nature, who I really am. I'm not naturally one to volunteer information about myself unprompted—which is why I wrote a book about my life, clearly. On the other hand, I don't wish to feel like I need to hide who I am because of what others may think or say about me. So, for the first time in almost twenty years, it's time to open up.

I have Asperger's Syndrome.

Might not be what you were expecting, but there it is all the same. For those unfamiliar with it, Asperger's is an Autism Spectrum Disorder characterized by having very specific, almost obsessive interests (like my fervent love of space), normal-to-high intelligence, difficulty with social situations, having a flat affect (both of which I've learned to mask over the years), muted emotions, difficulty understanding emotion (both others and my own), a desire to have everything in some kind of order (OCD-ish), and many others.

We call ourselves Aspies, those of us on the Asperger's end of the spectrum. The rest of the world, generally speaking, are neutrotypicals (NTs). For most Aspies, NTs are a very odd species. Your reactions, your logic, your emotions, these are foreign to many of us. And yet, we live among you, watching, lurking, waiting to rise up and...oh, wait, that's the AI. Never mind.

I found out I was an Aspie at 5. For years, I just thought of myself as me, and did what I could to get along with the kids around me. But I always felt something lacking with my peers, and gravitated toward adults, with whom I could more readily converse and actually enjoy those conversations. Sure, I played with kids my age, but never found the same satisfaction of  But, when I moved to San Diego, thrust into middle school with no friends or understanding what most kids were really like, I was constantly harassed, bullied, taunted, you name it. I made the mistake of revealing what I was—different, and thus a target for ridicule and mockery.

So it shouldn't come as any surprise that I tried to hide what I was. It didn't work well at first, I had a few friends, a little band of misfits who really only had each other, but besides that, the world was a lonely, dark place where people made no sense.

After a while, I realized I could start to make some sense of NT behavior. I began to careful study, going on over 15 years now, to understand and learn how to imitate "social" behavior. It paid off. Within a couple years, I could feign social competence—what inflections to use, which affects to wear, body language, speech patterns, the whole shebang. Although, I still constantly talk about space and science and all the fun things I learn from documentaries.

It wasn't...isn't...easy. It's rare for me to be able to put aside that NT mask and just revel in my Aspie-ness. My mind is constantly working when I talk with others, figuring out the right words to say, when the right time to speak is, which facial features to adopt, the tone, what humor is appropriate, etc. Those dozens of tiny little things people not on the spectrum do unconsciously when they interact with others, for me at least, all are carefully controlled variables in constant flux based on an extensive database born from years and years of study. And even still, I don't always get it right.

Let me be clear, this is not what most Aspies are like. I've been able to integrate myself into the neurotypical world fairly well because one of my obsessions is psychology and people. I'm fascinated by what makes people tick, why they do what they do, learning their fears, their drives, and it gives me an enormous advantage over other Aspies who do not have my same base of knowledge, and even over some NTs.

All this work is exhausting. It's wearing and draining to constantly pretend to be something I'm not. Which is why I've decided to come out. I no longer fear the taunts of the insecure people, of the bullies who would deprecate me for who I am. If someone wants to be my friend, I shouldn't have to play the part of normal human for X amount of time before I can reveal a large part of my personality is merely a charade to hide my true self for the benefit of social lubrication.

Now, that doesn't mean I'm going to drop everything I've learned. I'll still use the tools I gained to hide among the neurotypicals, but no longer as a front, but simply to be polite and make sure those I talk with aren't uncomfortable by my monotone and flat affect and muted emotions.

So that's it. I'm out, and I'm damn well proud to call myself Aspie. Wouldn't have it any other way.

~Andrew

PS: Yes, I do have Asperger's. I've had several psychologists seem incredulous when I tell them, and then I drop the mask completely and they say, "Oh, okay, you're right." So just because I might not act as though I have it, trust me, I do.

Feel free to ask any questions in the comment section.

The Path to Normalcy

Hello again,

It's been an incredibly hectic few months. Which leads me to something I feel is important to discuss that I'm sure isn't all too foreign, at least on some level, to many:

I tend to get overwhelmed somewhat easily, especially with the more mundane aspects of life—work, school, bills, insurance, socializing, what have you—and especially when they're all happening simultaneously. For years, I felt ill-equipped, like a failure, for not being able to deal with the realities of independent living. This was a near-constant thought I repeated like the world's worst mantra.

Yet, when it comes to traumatic events in my life—surgery, car accidents, cancer scares, joint collapses, etc.—I cope far better than most. After ten years of dealing with grim prognoses and continual setbacks, what most people would consider horrific experiences are my normal. The reason? I was diagnosed with  leukemia a little over ten years ago, just as I was about to graduate high school, and so instead of learning and adjusting with my peers to adulthood, I struggled just to stay alive and, once I'd come out the other side, to recover. The natural path of leaving the nest and learning to navigate the real world wasn't mine to walk. Instead, I found myself on a more winding path to a reasonably normal life, slowly picking up the skills necessary to do so.

While I added to my repertoire of life skills, I contended with numerous surgeries and other setbacks that served as an ever-growing ball and chain that slowed my progress to a crawl. And the depression and anxiety and PTSD from my battle with cancer and the cure were as broken glass along that path, pain and suffering that reinforced the belief it was far easier to stay put than continue on to endure further cuts, slowly bleeding my resolve. Each additional mundanity increased the incline of the path—growing ever steeper, ever more daunting.

The combination of these factors is sometimes enough for me to shed some of my less urgent tasks to pour my effort into those that are necessary—to ease the angle of the path and thus the energy required for forward progression. Over the last couple years I've become better at juggling multiple responsibilities, but it has not been easy, and I've had to do it almost entirely on my own.

I know I'm not alone in this predicament. Many young adult cancer survivors have similar issues, as do people with depression, anxiety, and other mental illnesses. That's why it's so important to find ways of tailoring support to those who struggle, because as it sits today, the resources can be improved. It begins with our attitude toward how we offer support and what we think adequate to get these people back on their feet. Unfortunately, the problem doesn't just go away when someone is "cured," there are lingering after-effects that can be just as damaging and difficult to overcome as the original diagnosis.

The issue is a pervasive one, and only when we work to find the best treatments not just for those currently suffering their maladies, but for those recovering as well, can we ease their path back to normalcy.

~Andrew