Remember Me As Someone Who Always Gave More
The downside to losing your hair is that your constantly clogged shower drain will cost you an absolute fortune in Draino. But hair loss expenditures balance out because what you spend on Draino, you save on not needing bikini waxes.
This is just one of the little facts I’ve learned about being sick. You learn a lot when you’re sick. You learn tricks to keep yourself from throwing up in public. You learn to smile and make a joke about being ditzy when your memory loss kicks in. You learn to pretend your nose is stuffed up from a cold and not because you were crying in your car after your doctor told you the same antibodies that make your immune system attack your body will also attack any baby you try to carry, causing you to miscarry. You learn that you’ve developed a condition called menorrhagia. You think to yourself, “’Menorrhagia’ sounds like a combination of ‘menstruating’ and ‘hemorrhaging,’” and you’re right! It’s the prom scene from “Carrie” happening in your pants once a month.
You learn that you’re no longer you. You’re now the sick version of you, and the sick version of you is not someone you recognize.
I’m still getting to know the sick version of me, this me who’s living with two autoimmune diseases. A relative told my mom over the holidays that I’ve changed, I’m not as much fun anymore, I’m not carefree, I don’t laugh like I used to. I know I’ve changed. I’m the one who has to live in this sick body, has to try to think with this sick mind.
As much as my diseases have impacted my body, their impact on my mind has been the hardest to come to terms with. Symptoms of my conditions include impaired cognition, difficulty learning, aphasia, memory loss, depression and anxiety. A mental cocktail for a super fun time.
There’s this girl I met recently. She has only ever known me as this person whose brain doesn’t work well, and I hate her for it. Each time aphasia kicks in and I say the wrong word and she smirks, I want to tell her, “I was a National Merit Scholar! I got a perfect score on my SAT verbal! I gradated college summa cum laude!” But there’s no way to casually work that into a conversation without sounding like an a-hole, so I’ll just put it in this essay instead.
Speaking of being an a-hole, I used to mock people who stopped eating gluten. Gluten is in everything delicious! Why would a person give up eating everything delicious? Because when your doctor says not only will you never get better, you’ll progressively get worse, you are willing to give up anything just to feel better. My greatest desire is to not feel awful, and so I have given up gluten. And grains. And nightshades. And dairy. And eggs. And alcohol. And coffee. (Well, I cut back from six cups of coffee to two a day.)
Going on strict diets that random people on the Internet swear will cure me isn’t just about feeling better. Maybe if I give up indulgences, the sacrifice will heal me. I am superstitious enough to believe that surrendering my favorite foods will act as an offering of sorts. If I can finally be good enough, I won’t be sick anymore.
I’m lucky that I’m dealing with memory loss and impaired cognition while still in my twenties. If I were 50 years older, and my brain started failing this way, they’d put me in a home. And there is a bonus to having memory loss: cancelling plans has always been one of my favorite things to do. My friends used to give me a hard time for it, but now if I don’t show up someplace, they assume it’s because I’ve forgotten. It’s really very convenient for me because I’ve become even more socially lazy since getting sick.
My social laziness has a hidden motivation. I don’t reach out to my friends because I’m not the person they fell in love with anymore. I don’t want them to see my hands shake or see the confusion on my face when I can’t remember something simple. I don’t want them to hear me throwing up when it’s not from being hungover. I don’t want the way they look at me to change, but change is inevitable when your body turns on itself. And even though I’ve changed, it doesn’t feel like I have. It feels instead as though everyone is moving forward around me, without me. I’m stuck standing still, always waiting. Waiting for when I feel better. Waiting for the mental fog to lift. Waiting for my life to start again. But this is my life and it is happening, even when it feels as though it’s happening to me.
I am stagnating, and sometimes I resent it. It is hard to live with fear and pain when there is no expiration date on that fear and pain. Other times, I am grateful for the stagnation in my life. It keeps me from being noticed. If I keep my head down and don’t ask for too much from life, fate might forget about me and not send anything else bad my way. There are other times when I want fate to notice me. I want to live a big life with my big voice and big personality. There is no one way to be sick. There is not even one way to be sick during the course of a day. My attitude changes all the time.
There are even times when I am grateful for these diseases. I don’t want to go back to who I was because I am so much more now. Being sick has given me more patience, more compassion, more understanding, even more hair. Before it fell out, my hair was stick straight. The hair that has grown back in is thick and curly, with a streak of gray down the side. I’m leaving the gray because it makes me look like the powerful witch I’ve always wanted to be.
My fear is that the worst will happen and after I’m gone, people will only remember me as the saddest parts of who I’ve been during my illness. This is what I desire least, and often what we don’t want can be as great a motivator as what we do want. Desire is a passionate longing, and through being sick, I have discovered I have a passionate longing for more. I want to do more, see more, and be more than just a sick girl. I want my loved ones to know (and God forbid, remember) me as someone who always gave more.
Pinterest has been showing me a lot of inspirational quotes lately. You know life’s not great when an algorithm is worried about you and tries to reach out. And I’m a little disgusted with myself for actually being inspired by dubiously attributed Internet quotes. But one of the quotes I saw was, “Honor the space between no longer and not yet.” And that space is where I am now. I cannot define myself by who I used to be. I am not that person anymore. I don’t have my old abilities. I don’t even have my old memories. But I do have the rare chance to let go of every way I defined myself and to face who I am right now. It is freeing to know yourself in your present rather than as some outdated version of you. If your old definitions of yourself aren’t working anymore, cast them aside and make facing who you are right now your greatest desire.
