This blog post is inspired by the following two quotes, that I’ve received many, many times in my life:

“You know, Justin, just sometimes I forget that you’re even in a wheelchair. It’s like you’re completely normal! I don’t even think about it!”

or, maybe…

“You know, when you can’t do some things I get a little surprised because you don’t act like you’re sick. You do a good job of hiding it.”

To be clear, these two quotes do not offend me at all. In fact, with the first one, I guess I’d say I kind of prefer it that this friend is no longer generally hung up on the fact that I use a wheelchair to get around. Yeah, it may be a little awkward if they forget to retrieve my wheelchair that’s stowed away in the trunk of the car that we’re getting out of (and, yes, that’s happened a few times!), but it’s okay. I’d rather them feel a little silly for just a moment than make a huge deal out of the potential chore of stowing and retrieving my chair for me.

So, a good friend, Kate N., recently shared this article with me, and I wanted to share it all with you, too (you can download a PDF version of the story here).

If you have the time to read the whole thing, that’d be great, but I understand that you might not and instead are reading this. :) So I’ll give you the Cliff Notes version, if you will.

The article is a story written by a woman named Christine M. Lupus lives with her. First things first, I don’t want to compare any health issues I’ve had  to her struggles with Lupus; not for better and not for worse. I think comparing in general, and in life, is a slippery slope. Especially comparing someone’s experience with any kind of sickness to another is idiotic. Everyone has their own experiences, reacts in their own ways and, most importantly, copes in their own ways. So it’s very important to understand that before you continue reading.

Now that I’ve explained that, there are so many instances where I connected with what Christine wrote. The major theme behind her story is that when one is sick they have to count spoons for their daily activities. You may begin the day with a set number, and some of those spoons may be taken away unexpectedly, but either way – you’ve got a certain number, hopefully, for starters.

For example – the having to “count spoons” for your daily activities. As a person that has paraplegia living with him, I do have to be very calculated about even the most simple day-to-day activities. Things that most people wouldn’t realize, like how long am I sitting up in my chair? How long can I do that for becuase of the pain I know it will begin causing to my lower back? How often am I adjusting the pressure on my very sensitive pressure points? What different things do I need to be successful on a given day, like will I be rolling around outside a lot and should have brought my gloves with me so they don’t callous and bruise?

And then there are the more personal and serious things, like will there be a clean, and hopefully accessible restroom available wherever I’m going for the day? And if I’m battling an infection – timing the schedule of my antibiotics (sometimes multiples medicines that must be taken at different intervals) so that they don’t negatively affect my disposition towards others, say, at work. And even in life part of my own health challenges have seen me being on 100% bed rest, at home, and being forced to completely work and live from home. But even still, on one of the antibiotics I was on made my sweat smell like sulfur and I got deep night sweats EVERY night as a result of the fever caused by the infection. HOW DO YOU EVEN HANDLE THAT?! (You have to do a LOT of laundry and you very much so procrastinate making your bed.) And at another point, I had to go to my physician to get IV antibiotics every 12 hours. Nuff said. Imagine trying to live life like that. It’s a challenge.

And then, yes, the fact that I need to eat something immediately before or soon after taking those medicines at all times, and how that affects the plan of your day (especially for someone who isn’t shy about eating only 1-2 large meals each day!

I share all of these similarities to show you that while Christine’s illness and her challenges are different, in many ways the spoon analogy is so applicable, especially when people don’t understand the day-to-day challenges you’re actually facing because you “seem” to handle them so well. A la “well, you don’t look sick.” Well, yes, I do try very hard to not make all of those aforementioned concerns and worries anyone else’s problems. While I’m not afraid to ask for help or consideration in special situations (especially, for example, while traveling) I do try for the most part to handle those things myself.

Christine’s words were especially powerful to me when she said, “if I don’t try to explain this, how could I ever expect her to understand?” That’s essentially the reasoning behind my recent revelation of transparency. In my former life I was particularly private about things like this but over the years, iI’ve had several mentors and folks that I know care about me encourage me to share more openly. And I’ll admit that in some (a lot) situations, I’ve found some good things and solace in doing that. 

And really resonating was: “Christine, How do you do it? Do you really do this everyday?”

A lot of people ask me this…usually appended with “and with a smile on your face?” I’ve iterated many times on this blog how thankful I am for the community and village of folks around me like my close friends, my dog, family, my roommate, and others, who really help make my life what it is, especially when I can’t. Along with a great deal of optimism and a naturally very positive spirit, that’s how.

And one last quote I’d like to share from Christine’s story before I wrap this up: “I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general.” Because when you go from being someone who is having lunch or dinner with someone 4 nights a week, and constantly being social in ways that other people can only imagine…to someone who is very strategic and says “Oh, I can’t come out tonight becuase I have plans tomorrow afternoon,” people may judge you. I’ve been on the receiving side of that judging. But if those judgers understood the spoon theory more deeply and practiced compassion to do so…it’d be impossible to judge that person’s challenge. Even though you really shouldn’t judge in the first place.

Thanks for reading. :)