List of Characters:
Gabe: Boyfriend, Likes to be doing things, Going places, Shooting things.
Mary: Girlfriend, Likes to lay around, Drink coffee, Talk about death.
Monty: Dog, Drinks out of toilet, Plays hard, Sleeps Hard.
There’s something sick people tend to forget sometimes, and this is that being sick isn’t only a struggle for us, but also tends to be a struggle for the people around us, too. It’s nobodies fault really, it’s just the reality of these circumstances. Spending the last month with Gabe, I saw how the illness effected more than just me, and the trouble it can stir up in our everyday relationships.
Gabe seems to me, limitless. It’s like he never tires. He can go and go and go and then he can go some more. Sometimes I tire just watching him. I envy his energy and resilience. He can only sit around for so long before he starts to go stir crazy, and that’s a huge fundamental difference between us. I don’t feel the need to be going places and doing things, and Gabe, well, does. “Do you want to go drive bumper cars today? Do you want to go to the shooting range? Do you want to go hit golf balls for a while? Do you want to go camping tonight? Do you want to get it on? Do you want to go jet-skiing? Do you want to go to an amusement park?” All of these questions are usually answered with somewhere between a grunt and a moan, sometimes a staunch “No” and sometimes a yawn and a “Maybe” if I’m feeling dangerous. Poor guy. How he ever ended up with a girl who barely moves I’ll never know. It’s easy to see how how he’d become disheartened.
It’s depressing, I know. The fact that an “amusement” park sounds like everything except amusing is depressing. But I’m just so used to the consequence of me saying “yes” to the normal activities that normal people find fun- and that is, a crash–that it has become my conditioned response to say no. I can’t drink anymore. I can’t be on my feet for long like I used to. I can’t stay up late or get up early. Sometimes a trip to the grocery store puts me over the edge and I pay for it. When you’re barely keeping your head above water, the slightest activites can drown you. So I’ve become conditioned to say no to a lot of things, simply because I know what will happen when I say yes, and often it’s more than I can handle. Sometimes I say screw it, I go and do what I want, knowing somewhere deep down that I’ll pay for it later. Every now and then, it’s worth the price I pay. But it’s rare. More times than not, I’m kicking myself for saying yes.
But as tired as I get in saying “No,” I see that it’s just as waring on Gabe in hearing “No.” I’m so used to thinking “He’ll never understand what its like to be sick all the time” that I never considered that I’ll never understand what it’s like being healthy and dating a sickley. Especially one that shoots down your ideas of fun and takes up ample couch space. The truth is, if you’re going to be with someone who has this illness, you have to be independent and comfortable with leaving your loved one behind and doing the fun things without them. I know it seems incredibly depressing, but what is harder for a sick person, is trying to keep up with a healthy person. It just doesn’t work.
What’s also hard is the desire not to disappoint people. I hate the feeling of letting someone down, canceling on plans, or suggesting activities that only a 90 year old would be enthused about (How about we play scrabble again for the 90th time?) The problem is, no one else will say no for me. No one will suggest we stop and rest every thirty minutes. No one will make sure I’ve taken all my pills. No one will play lifeguard and see that I’m waring down and suggest we cut off the fun and go home. Only I will do these things. Which sort of turns me into the negative nancy of fun and activities for others. It’s exceptionally difficult to suggest to young, energetic, tireless twenty somethings that we wind down the day and lay on the couch and talk about life and existential questions. Doesn’t that sound GREAT?!?! To most people, no, it doesn’t. And that’s where the trouble lies.
This illness has strained many of my relationships- intimate, friendly, and familial. I remember once my brother and I had a shouting match outside an NYC restaurant because Nick wanted to go on a walk to digest his meal, but I was feeling especially fatigued and didn’t want to go. “It’s just a brisk walk! It’s good for you!” And he honestly thought it was, but I knew it wasn’t. I was at my physical limit that day, and a 5 block walk was out of the question. He stormed off on his walk in frustration and I taxied it home with discouragement. But I hadn’t really educated him on just how sensitive this illness was. I was sort of still trying to live like a normal person back then, so when the sickness would come out and demand I obey it, it left everyone in a state of confusion. We’ve come a long way since then. Now I hear him defending me to others, even suggesting we cab it home when I consider walking. We’ve both learned a thing or two.
One question I ask is: Where do you draw the line? If I keep saying no to everything, won’t I eventually turn into a hermit trapped in a dark house with zero friends and zero fun? Because that sounds especially awesome. Wait no, that sounds terrible. The lesson for me has been finding the middle. Finding the area of compromise which keeps me alive with the pulse of life but doesn’t land me crashed in bed for 3 days. There is a middle ground, and part of my education in the last few months has been finding it. I’m still learning, too. In truth, it’s painful saying no all the time, when what you want to say is yes. But again, I have to be the master of my own domain! My domain happens to tire out after about 30 minutes of doing almost anything..standing too long, sitting too long, walking for too long…it’s ridiuclous, but it’s reality. And it doesn’t mean you have to turn off the fun. You just have to get creative. It’s also sort of a “Pick Your Poison” kind of situation. Do you want to say no and momentarily suffer sadness? Or say yes, and physically suffer for at least the next day?
Gabe and I are never going to be on the same level physically. This is someone who chased down rabbits on foot and wrestled an alligator on our first date (hence his nickname Gator) and worked 12 hour shifts of manual labor on an oil rig. (I’ll get to these stories, soon.) I..um…showered yesterday. So, there’s a little space between us when it comes to physical capablilites. But, we’re learning. I’m learning how to say no but stay positive. He’s learning to do the things he wants without me, and somewhere, in the grey of life, the circle of compromise, in the middle..we meet. All we can do is try.
To all the loved ones of sick ones out there, I know us sickley’s are a pain in the ass. But we do appreciate even the effort to understand. I see now, I need to try and understand, too.
Health, Happiness, and Compromise.