For a little change in pace, I started writing this post from my infusion chair: my home-away-from-home, last Saturday morning. I’ve been doing this routine for 4-ish consecutive years, and it’s become such a part of my life that the first thing I did when I walked into “Bay 2” was rearrange the furniture. I know it sounds crazy, but when there are things in your life that are outside of your control (a chronic illness, for example…), it becomes easy to try to control everything else that isn’t.
For as long as I can remember, my lines have always been placed in this rock-star vein I have in my left arm, so when I saw the IV pole on the wrong side of the recliner, I had to immediately take action and swap it out with the vitals machine. I couldn’t let all of those wires cramp my style.
But the reason I lugged my laptop to my treatment, however, was not to get into “How to make your hospital room cute: 101”, it was because I have had a particularly nerve-wracking experience surrounding my regularly scheduled programming, and the part of it that really made me need to put hands to keys was an interaction I had with someone that left me questioning, “How do any of us do it?”
As most of you know, a good amount of the conditions that we suffer from in the chronically ill community cause our immune systems to become compromised. On top of that, the methods of treatment for those conditions tend to weaken them even more, which in a lot of cases, is intentional, but leaves us more susceptible to catching a whole slew of other shit we don’t need to be dealing with.
But what happens when the chronically ill become “healthy-people” ill? You know, the times that you wake up with something out of the blue, and there’s the strong likelihood that it’ll go actually go away? (A novel idea, I know).
Well, I was faced with this predicament this past weekend, and it caused me to have to make a serious judgment-call. “Should I postpone my Remicade infusion and wait out whatever is temporarily making me ill, or should I take a chance and have my treatment, making it harder for my immune system to fight off whatever is virally occurring?” Since my infusion center is booked-out for months, I was worried about causing a flare-up of my joint disease as a result of the delayed dose, so I decided to go with the latter. But as anyone can imagine, there was seemingly no right answer, and my anxiety about all of this went through the roof.
The thing is, I’m accustomed to having to make tough decisions on a daily basis, just usually to a much lesser degree. “Do I prep my meals for the week on Sunday night, stressing out my joints standing in the kitchen for a couple of hours, or do I push myself through the discomforts I experience in the morning before work to make my food for the day?” These decisions that we, as sick people, are faced with, seem light and airy at first glance, but the wrong choice could impact us greatly, and as I feel I’ve exemplified, both options are often detrimental in some way.
What I have yet to be able to deal with, however, after 32 years on this planet, is finding a balance between remaining tough while concurrently finding someone to lean on. It’s pretty natural to become more vulnerable when you’re not feeling well, so when you’re hit with a whole lot at once, I think it’s fair to say that you just want someone, anyone, to swoop in and say, “I got this.” I have never needed much from others in that way (although, I’ve certainly wanted it at times), and for some reason, I conditioned myself at a very young age to be exceptionally resilient when not getting that “want” met. I’m not sure where it stems from, because my parents were both very supportive and overprotective of their sick kid, but I’ve always handled my illness in a very black-and-white manner.
For example, last year, I somehow contracted e-coli for the second time in my life. When healthy people get this bacteria, they normally kick it within a few days, and most of the time they don’t even know they have it, because it just presents as a nasty stomach bug. I, on the other hand, develop debilitating abdominal cramping and a whole shitload (pun) of other gross symptoms that typically make me utter the words, “just end it all.” It’s easily my least favorite way to get sick, and I wouldn’t wish it on my worst enemy.
Obviously, when I’ve gotten that sick, I’ve taken a trip to the ER and was admitted, but I’ve been to the hospital on numerous occasions, many of which my family and friends don’t even know about, so that doesn’t automatically mean I’m panicking. The difference in this scenario was that I was sick to the point where fear crept in, and I ended up calling my parents because I was unsure of what the outcome would be. However, if for some reason I started to feel abandoned in the situation, I would have immediately rejected all offers for help and managed it on my own.
This is all a long way of getting to the reason I felt compelled to write. In my everyday life, with my everyday illness, I do it all. I manage my doctors’ appointments, make sure I take my medications, pick up my prescriptions from the pharmacy, and haul myself to and from medical facilities. And when I get sick after treatments, I take care of myself; I make sure I stock up on food, and I make sure I have natural and prescribed remedies on hand to deal with the side effects.
I walk my own damn dog.
And when my current dilemma came to be, where I started to feel the weight of everything that was happening to me physically, I expressed to a friend that it would be nice to have some company, mostly because I was afraid of having an allergic reaction as a result of my body being in a weakened state. I wasn’t necessarily asking for help, but I also wasn’t expecting the response to be that he wasn’t “comfortable” coming along.
Sitting and thinking about that response in this moment doesn’t have the same impact that it had when I was in distress, but it does leave me wondering. As I mentioned above, it takes a whole lot for me to feel the desire or warrant to even share that feeling with someone, but once I was rejected (again, for something I hadn’t even requested), I immediately shut down. Rather than allowing myself to feel disappointment, I iced that cake with a whole lot of “well, fuck you, then.”
It’s funny, because I know that’s probably not a healthy way of dealing with those types of situations, but I also know that it’s always worked for me, because I don’t waste time sitting around crying about selfish assholes when I need to be worrying about things that are more important. Also, that emotion almost always immediately repurposes itself into something better: fuel to fight. When I feel disenchanted by someone’s lack of integrity, I somehow become stronger and more determined to get through whatever I’m dealing with – but again, not from a healthy place – it happens out of spite.
A lot of us talk in my live chats and comment strings about how isolating it can be to be chronically ill, and for me, situations like this have been the main cause. Since I am dealing with something that controls everything I do, it’s hard for people to understand the emotional component that comes along with that. Being sick, for me, usually feels like a toss between convincing someone that I’m not a flake because my illness caused me to cancel plans at the last minute, and convincing someone that I don’t need help, because they weren’t going to help anyway. Maybe it’s a matter of pride, but no one wants to be labeled as incapable, especially when the cause, in this case, has nothing to do with my drive or determination otherwise.
As a result of these encounters, I have lost a lot of relationships in my life. Sometimes it’s a friend who decides they won’t make dinner plans with you ever again because they put on their “face” for nothing, or someone who uses your inability to be reliable as a scapegoat or justification for their own lack of consistency. Sometimes it’s someone who refuses to understand that you have physical limits, and makes plans that you can’t be a part of as a result of your incapacitation. Sometimes, you might be “blessed” by someone who decided that they need to start keeping score – you know, the ones who helped you hang curtains once or twice, and when you call them out for shitty behavior, they remind you of “that one thing” they did, “that one time”, 3 years ago. Worst of all, it can also be someone who comforts you in a way that makes you think it’ll all be OK, until they realize that providing any level of emotional support offers nothing tangible for them in return, and you’re left hanging out on a limb, with nothing but lost confidence in the human race.
For me, all of these interactions add scars, and sometimes I think it’s those scars that make me more resilient than anything you could see on my body. Because really, what is this life if you don’t have people to share it with? What exactly am I working towards, if I’m experiencing all of my successes alone? There are many people out there who say you shouldn’t expect anything from others, because then you won’t be disappointed, but I have always felt that this was just a bullshit way to rationalize away one’s ability to just be decent.
I’m not really sure what has made our society so cold. Over time, I’ve felt like we developed a general lack of commitment to anything, really, and that this character flaw has spiraled into this mess of everyone sort of being on their own, whether they know it or not. People get divorced after having a fight, and they cheat on their significant others rather than getting out of the relationship when the decision is made to not work on things. There also seems to be a ton of competition on social media to maintain some sort of semblance of a “cool” life, when no one appreciates how to create one that’s simply fulfilling.
What I’m trying to say is that I think if people took a step back, thought about their actions, and really understood how they affected others, perhaps we wouldn’t constantly be in this position of feeling entitled to act like animals. It’s interesting, because our society tells us that we SHOULD feel entitled to do/say whatever we want, because it’s our lives and to hell with anyone who gets in the way of that, but people forgot a long time ago that everything is cyclical. Putting bad energy out into the universe eventually comes back to us, and if you’re foolish enough to do that in your own immediate circle, you can be sure as shit that it’ll find it’s way back to you a whole hell of a lot faster.
When I lay down at night, I don’t just pray for loved ones on the surface and call it a day. I pray that those who lack compassion for others are able, at some point, to reboot their perspective and start viewing the interest in another’s well-being as an investment for their own. We need to stop cutting people out of our lives for things that deserve a slap on the wrist, or better yet… a conversation.
And finally, I feel that I’m living in a world where I am routinely punished for the hurt that those close to me have received from someone else. I am not perfect, and I’m sure this post probably gives the feeling that I think I am – but that’s not how I feel at all. I guess I just wish sometimes that rather than people relying on bitterness and questioning my genuineness (yes, it’s a word!) they would see “Becky” before anything else.
I’m not some opportunist who cancels plans with you for better plans with someone else – I’m Becky, and if I need to make a change at the last minute, it’s because my disease had other thoughts about how my night should go. I’m not some pathetic antisocial slug – I’m Becky, and if I say I can’t walk the mall with you, it’s because on most days I can barely walk to the bathroom. I’m not a charity case who expects people to do all the heavy lifting – I’m Becky, and if I ask you to help me with a repair in my apartment, you better believe I’ve already tried to do it myself.
I’m not the roommate who left you hanging with the other half of the rent in the middle of your lease. I’m not ungrateful or unappreciative of the little things in life. And finally, I’m not some girl who broke your heart. So before you see our relationship as “imbalanced” or taxing because I can’t commit to plans the same way, or because my memory was wiped out by meds, or because my gravitation towards you when I’m sick makes me look like a clingy girlfriend, please remember that you weren’t the only one inconvenienced, disappointed, or scared to be vulnerable. Before any of those thoughts creep into your mind, I beg you to remember one thing.