What to Expect When This is Not What You Were Expecting

This month I’ve spent three Monday’s in the ER, in two different states. This week I was admitted to figure out the central line issues I’ve been having. I never expected this to be my life. I never expected to have to deal with iron infusion and blood transfusions and surgeries and central lines and goddamn pain. Oh god, the pain. The pain is gnawing and ever-present and utterly out of reach of language or understanding unless you know this pain. But it hurts. It hurts so fucking badly, all the time, and it always will. I should be picking out dorm colors I’ll regret halfway through my first semester instead of dealing with all of the above. I never expected this to be my college send off. I don’t know what twists and turns my feet have followed to get me here. This is not how it was supposed to be. This is not the scenario I had the roadmap for.

In a month I am supposed to pack up my entire life and move it across the country. Alone. And I thought this would be the most exciting time in my life, I’d venture into the portal to hell that is Bed Bath & Beyond and pick out sheets and towels and shower shoes and coordinate with my roommate who is getting the fridge. Instead, we are choosing doctors and coordinating with home health and making plans for what to do if something goes wrong. Because something always goes wrong.

And when I’m there I will have to set up TPN every single night. Wipe, Fill syringe, wipe, inject, wipe, fill the second syringe, wipe, inject, mix, spike bag, turn on pump, prime tubing, saline flush, clamp, connect, start pump. In the mornings, I set up feeds. Turn off pump, throw away old bag, flush, shake formula, pour formula, prime tubing, connect to pump, connect to tube, start pump. And then there are all the medications. And doctor’s appointments and labs and tests and bad news and on and on and on and on and on. And it all feels impossible and never-ending and big right now.

The other day I collapsed into my mom telling her I couldn’t do it; I couldn’t move to Boston. I still don’t know that I can. I kept telling her I don’t know anything, I’m going to be all alone and I don’t know anything. I also told her that she can’t tell anyone I’m scared because they won't believe in me. You see, I haven’t been allowed to be scared because already there is doubt that I can't do this. I understand why. The same reasons I have doubt. Cobblestones and hospital admissions and sick days every day and needing help with basic tasks.  But I am allowed to be scared and I need you all to believe in me despite that. I. am. terrified. It is a bone-deep, unspeakable fear. Every kid going to college is scared, it’s a right of passage. But not like this. This is different, I am different; I am chronically ill and disabled.

And because of that, it’s true, I don’t know anything. I got sick when I was fourteen and I think for a long time people around me didn’t know what my prognosis or my future held so time was stalled. I never learned how to cook or do laundry or drive or pick up my own prescriptions because I think most people never really thought I’d be able to get the chance to do those things on my own. But here I am. The closest thing to a clue of how to do this is the pamphlet they gave me this week in the hospital A Patient’s Guide to Blood Transfusion. Which actually, if read metaphorically does offer some insight. I need more than metaphors though. I need you. I need my village, even though I’m not sure I can do this.

I need all of you. So I am asking something of you during this transition. I am asking you to simply get out a piece of paper and write something. Tell me about your college experiences. Make me a playlist. Give me your favorite family recipe. Give me your best and worst advice. Send pictures of your dogs or cats or babies. Tell me your favorite poem. Tell me what you learned in college. Tell me your dorm room essentials. Tell me your best midnight snack when you've been studying for hours.  Tell me about your fears if you're also going off to college. Tell me what to wear to a job interview. Tell me what movies are your favorites. Tell me how to schedule a doctors appointment. Tell me anything. Essentially, write down and seal up some of you and some love. And then put it in an envelope and mail it to me. You can message my mom or I for where to send it if you don't already have our address.

I will cherish them and sprinkle my dorm room with them to warm me on the cold Boston days. I will let them give me strength when my iron is low. And I will do this, I will get on a plane in less than a month with my fear and uncertainty stowed away as my carry on and I will do it. 

Also. Donate blood if you're able to. Please.