2015-06-10 Posted By Jenna
Growing up, there was less and less of a reason for me too keep my peers in the loop of what was going on in my life, medically speaking (which was a lot as a kid). It hadn’t always been that way, but (among other things) I didn’t realize that when my peers asked me questions like, “How do you go to the bathroom?” (when we were in elementary school) they weren’t expecting the same clinical/graphic answer as when my doctors asked me about that topic. D’oh! It was confusing for me! I didn’t know whether I should be completely honest when people asked me questions (because I already knew a lot about my condition early on to answer them), or to be completely closed off, defensive even. I didn’t know how to find that balance between satiating people’s general curiosity, while also letting people know that I was more than my condition. Heck, I didn’t even know there was a balance! And let’s not forget the times that you inadvertently over-share because the circumstances of your daily life have become “normal” to you, and you forget that it might not seem that way to others. Oops… So, over the years I coped by getting very good at being independent, flying under the radar and just getting through it on my own. That is, until university.
(For the parents of someone with a chronic condition, or you are that someone going through elementary or high school - IT GETS BETTER! I Hopefully with these tools, and your willingness to learn and engage with others who might have ideas on how to navigate all this will not have you waiting til university, though! However, one hint I can give you is - TRY to be confident, it draws people to you without really trying.
But back to me and when I FINALLY realized I could let people into my life without feeling like a victim or a burden. I was fighting a very bad common infection, a UTI (urinary tract infection), over Easter weekend 2010 when this little…bugger… would. not. let. go. I was in my dorm room trying to appreciate the rare silence of nobody being around to try and sleep, not having kept a thing down for three days straight and my temperature RISING - I was into trouble. The most obvious solution took awhile to cross my smokin’ hot brain - if I do say so myself!
Believe it or not, even at 20 and having a congenital condition (from birth) - I had never ridden in an ambulance. So I thought, I’m sick and DEFINITELY need to go to the hospital so I’m gonna ride… in style, I deserve it! And let me tell you, what service! There was a bed back there that was WAY comfier than the one in my dorm, they were giving me as many blankets as I wanted (no charge), they knew how to fold my wheelchair without instruction and without breaking it, and they got me there quickly with that nifty siren (I really need to get me one of those for my chair AND car). It was luxury like I had never seen (within the healthcare system). I was almost sad it was over. Sorry, “over” is probably a bad word choice for the end of an ambulance ride…yikes!
Remember my mentioning my propensity for independence? Well, I do have to confess that before the ambulance came I had packed a bag of supplies, tidied up my room (which my mother now realizes takes a medical emergency and the potential of good-looking paramedics to get me to do) and jumped up onto the gurney faster than they could offer to help. Nothing shoots a nearly lethal amount of adrenaline and testosterone into my system faster than when I know people are going to assume/know I need help. However, I did learn that night that I did have limits to my independence because as I was blowing up my cell battery trying to persuade my parents - on the other side of the country - that I was fine and that they didn’t need to come, my battery was quickly dying. I had forgotten my phone charger when I was packing. OY!
So, what's a person to do at 6am in the morning on a holiday weekend to solve this problem? (Keep in mind that I faced this conundrum without having really relied on other people before). You think wayyyy outside the box, and you call your best friend (hoping that she is in town over the holiday, while at the same time crossing your fingers that you’re not tainting your relationship because life has happened to you), and you realize what you’d do if the roles were reversed to know your worth.
Let me guess, some of you are yelling “DUH!” at your screen? Well, lucky for me, my friend didn’t go that far. (Though she was very quick to point out the fact that if I had called her earlier, since I needed HELP, I would’ve found out she had been in town the WHOLE weekend to help me out. I really wanted to point out to her how awesome the ambulance ride was, but quite out of character for my maturity level - I was able to figure out on my own that this was not the time to do say that, while humbly admitting the lesson had been learned. So after her making her point, and me keeping mine to myself, I begged her to grab my phone charger so that my phone wouldn’t die and have my parents think that the same fate had befallen me (“Whenever you get a chance,” I added).
Within half an hour, she was there with a phone charger, an extra laptop, a mountain of DVDs and an offer to get me the breakfast of my choice. This was the first time, really since early elementary school, that I had let a friend into my “sometime world.” And let me tell you, it felt like freedom. I felt like I could finally accept my whole self and all of the parts that made up me because I had found people who did the same.
This really painful experience (literally), became an opportunity (for my soul and my spirit). When I finally came home, it (finally) became much easier to catch a lot of my friends up on a part of my world that I had tried to hide. The leap of faith to be honest and vulnerable didn’t seem so scary anymore. I told them about my “skill” for getting serious infections that need to be jumped on, I told them why I got those infections, and I told them that they are a part of my life that I didn’t see going away. And being honest with these people has continued to help me to this day; because they knew the finer details, they knew that I wasn’t taking the necessary steps to deal with another infection a year after that Easter weekend - which ended up saving my life. But that’s a story for another time.
Life happens. That means different things for different people. In any relationship it isn’t always going to be smooth sailing - sometimes you’ll need more support that usual and your friend will be there for you, and sometimes they’ll need support and you’ll be there for them. To some of you this may sound like a myth more than a realistic fate (it did to me before that day), but when you’re willing to admit who your authentic self is - with all your unique strengths and need for support - the right people will come into your life and you won’t have to expend so much energy trying to be who you think they want. These people might not be everyone you meet, but it honestly won’t matter to you in the end - plus it’d be really annoying if your speed dial was too long, anyway!
Anybody else have a story about when they realized they had people in their life who didn’t dwell on your health challenges, but saw you as a whole? Want to share?