The Ever-Shrinking World of the Chronically Ill
July 23, 2015 | Posted in: chronic illness; support
I feel certain that most of you have at least heard of if not ridden the iconic “Small World” ride at Disneyworld in Orlando. Every time we traverse the park, the kids insist on at least one ride on “Small World” the thing is, once you do– that devil tune is forever imprinted into your brain. You’ll be singing it for days on end. “It’s a small world after all, it’s a small world after all, it’s a small, small world- it’s the anthem of the chronically ill.
Chronic illnesses vary so much in their nature, but there is one thing they have in common: limiting your life. Whether it’s losing physical function, social function, mental function, emotional function or all of the above, these illnesses have a sneaky way of making our worlds smaller and smaller over time.
Now, I have to say up front for legal reasons that I’m no magical world expander and if my tips don’t work you won’t get your money back. But since they were free, we should be okay.
It breaks my heart to tell you that there was a time in my illness when I looked around at my life and I was disgusted to find myself totally and completely defined by illness. It’s what I talked about, thought about, researched, etc. And I felt like, hypothetically speaking, “How would I go about changing this if I wanted to?” Here are a few things that I’ve learned along the way:
Reconnect to you: You were a complete person before your illness, with likes and dislikes, opinions, favorite songs, and ideas- sometimes you might have even talked about them. Are you still doing those things? Are you staying up to date with the things that mattered deeply to your heart? Journaling could be good here. Start with any random prompt that strikes your fancy and just run with it. (i.e. I really care about things like, I remember when I, things I like about me are, some of my favorite things are, some of my least favorite things are, ) Listen to your favorite songs again. Buy a shirt in your favorite color. Write a new poem. Express yourself.
Reconnect to your passions: So maybe you are growing impatient with me and you feel like, “Didn’t we just do that?” Well, hopefully in reconnecting to you, you rediscovered some of your passions. This is the part where you do something about them. Now, this might be painful and you might want to curse me. You might be thinking, “I thought you knew I was sick. I thought you knew I couldn’t do those things anymore.” You know they say that athletes are the only people that die twice, but I’ve always thought that those who battle illness do as well. So yes, maybe you can’t do those things in the same ways. But I need us to think outside of the box here. How CAN we do them? Is there an app that can read your favorite author to you? An online group that wants to discuss your poetry with you? A group of car lovers that meets once a month and would be willing to come to you? Better yet, do you have a tech savvy nephew that would be willing to search these things out for you? YOU have a purpose. Your life has meaning. We can’t just give up on you. What did you always want to do? Rescue orphaned animals? Can you volunteer at the local shelter one day a month? NO? Can you help raise money for them online?
Reconnect with your people: So often, I feel like I’m not up for company, when what I’m really not up for is spending a day’s worth of energy primping for company and picking up toys off the floor in preparation for their arrival. Let’s be honest: Is this something that a little dry shampoo, tooth brushing and foot scooting toy removal can cure? Then I say it’s worth the investment. We all have our days where this too, is absolutely not an option and that’s okay. We also have people that won’t accept that offering, and those people need to go. Sorry, folks- Jesus loves you! Some of the people you connect to may be online simply because it’s easy access and as long as things don’t get weird and x- rated (I’m talking to you random dude on twitter who sent me porn!) Then what a blessing! The point is, we weren’t meant to do life alone. Reconnect to your people. They need you. You need them. The world needs that thing that only YOU can bring!
I pray that you find your worlds getting larger and larger, your lives become richer and richer by the day!