Storytime: The Unforgettable Infusion Adventure

They say a picture is worth a thousand words…. This photo is no exception. I remember this day so vividly, which is rare considering I often have some serious brain fog. I’m a person who will remember emotions over details almost every time. This particular day though apparently had some extreme effect on me because I remember it near perfectly.

It wasn’t a rare day by any means, I was just in for one of my routine infusions. People came to see me, I got my usual nap in, I caught up with all of my nurses… The normal every three-week routine. However, my mom got the day off work so she could spend it with me. If anyone knows my mom, they know she’s a party in a person, in the very best way of course. Today was no exception. She was in the mood for something new and exciting.

I’m not one to take risks, most anyone close to me can attest to that, but my mom on the other hand, she’s a risk-taker. It was the afternoon and my visitors had left. I had told her I was hungry and ready for my post-nap meal. Typically she goes down to the cafeteria and just calls me to read off all of the specials of the day, but today she wanted more of an adventure.

I’m very close to my nurses and the staff on the floor where I get my infusions, so I probably get away with more than the average patient. However, there are things I don’t even dare ask. Like leaving the floor to go down to the cafeteria while hooked up to an infusion serum that’s in a glass bottle and happens to cost $10,000 a pop. My mom however, she had no such reluctance and asked away with a boldness I only wish I possessed. My nurse was understandably reluctant, but with both my mom and I promising to be very careful and to come right back if anything should go wrong, she eventually agreed.

When I tell you my heart was racing, I mean it. As I’m writing this I can’t help but laugh a little, the thought of getting a thrill from going to a hospital cafeteria! It really is the little things I suppose. Nonetheless, here I was, watching my nurse ever so carefully transfer my infusion bottle from my walking pole to the wheelchair pole. I felt kind of bad, asking for something so unconventional, but even I was enticed by the idea of a little freedom.

My infusion bottle is hooked up to some IV tubes, which are inside a pump that controls the rate of speed at which the serum goes into me. All of that is then accessed into my port which runs into a main artery to my bloodstream. Complicated and intricate? Yes. Something I think twice about? Barely ever. However, in those moments I couldn’t help but worry… What if the bottle fell off the pole and broke? What if somehow my line disconnected? What if, God forbid, the pump started beeping?! That seems small in comparison to the other possible outcomes, but let me tell you, it was my biggest fear.

You see, my infusion pumps have a reputation for being quite obnoxious at times. The serum that I get for my infusions is very thick so it will often bubble up inside the tubing and cause the pump to start beeping. Trust me, that gets old very quickly. Ask my friends, I’m sure they’ve witnessed this more times than they can count. However, add putting that bottle on a wheelchair while it sways back and forth… That definitely increases the chances of upsetting the already fussy pump, as I’m sure one can imagine. Now this beeping isn’t just some quiet you-have-left-the-fridge-open-too-long sound, this is made for nurses to be able to hear through closed doors and across the hall. It’s made to grab people’s attention and trust me, it definitely does it’s job.

Picture this: my mom wheeling me and my $10,000 glass bottle of livelihood through the halls, in an elevator, over numerous bumps, to the cafeteria. Saying the pump was going ballistic is an understatement. The beeping started almost immediately. Once we walked through those double doors to leave my infusion floor, the ever-dreaded sound commenced. Every single time it beeps my stress levels go up at least 10 notches, so you could say I was a bit tense.

Once it started beeping the first time I wanted to high tail it back to my safe hospital room with my nurses and endless supply of purple popsicles, but my mom was determined, “we’re already in the elevator, we’re halfway there! It’ll be fine.” she reassured. The only saving grace of this whole treacherous experience was that the pump has a silence button. Thank God. Unfortunately though, that doesn’t stop it from starting up it’s high pitch song again. And again, and again, and again…

If it weren’t for the fact that food was the end goal, I would’ve wheeled myself back up before the pump could sing again. Eventually we made it to the cafeteria and collected our meals, but not without my pump making its signature noise, quite a lot of stares, and my annoyance through the roof.

I tell this story for two reasons: one, because it’s comical picturing my mom and I fighting with this pump for what felt like the longest 20 minutes of my life just so I could acquire food; two, because I felt such intense emotion through it all. As all of this commotion was happening lots of people watched the scene go down. I don’t blame them, if I heard a loud and equally annoying sound out of nowhere I’d seek to discover the culprit too. However, the stares and looks of concern and confusion got to me. I started feeling embarrassed, ashamed, angry… I wanted to be anywhere but that cafeteria. I wanted to crawl in a hole and hide.

I’ve always felt “different” than my peers and most people I knew growing up. A lot of the time people knew me because of my illness which automatically set me apart. In my head I was the “sick girl”. The one who could never make a whole week of school or use the same arts and crafts supplies because of germs or run around without feeling worn out after 10 minutes. I never knew where I fit or if people were just friends with me out of pity. I let the Enemy build up these lies in my head for years and years. They became so engrained in me I saw them as truth.

In that moment in the cafeteria, with everyone looking at me, I felt my mind revert back to those lies. That because I have an illness I’m somehow “less than” or that I’m some sort of spectacle. That I’ll never measure up or fit in. That I’ll always be lagging behind and never on the same level. So many things that are just so utterly false. As I was feeling all of these raw emotions I started growing irritated and began snapping at my mom, who did not deserve my pointed anger. All she wanted was to help me feel “normal” and add some fun to an otherwise draining and monotonous treatment.

After we got our food and headed back up to my floor I started growing shameful of my feelings and behavior. Of course it’s a valid response to feel a bit dehumanized when people are gawking at you like you’re some sort of animal in a zoo, but I also knew my embarrassment was a bit out of character. I’ve always been a pretty open person when it comes to my illness and all of the emotions that come with it, but I’ve also always preached that it’s nothing you should ever feel ashamed of. You are just as worthy, capable, and an asset as anyone else. How come then in that moment did I feel so very opposite of all of those things?

The Lord used that experience to teach me many things. He reminded me that my worth should never be placed upon how others see or think of me. He lovingly helped to open my eyes to the lies I stored in my head for so very long. He brought to my attention the strength there is in weakness. That even in the moments when I feel my most vulnerable, bare, and fragile He is giving me the strength and sustainment each and every step of the way. He calmly whispers the Truth of His Word to my heart… That He delights in me and knew me even before I was in my mother’s womb, that though my physical body may be weak, He is my ever-present help.

As my mom and I reached my floor and got out of the elevator I apologized for snapping at her and thanked her for always trying to bring joy in even the most tiresome situations. For loving me enough to press that silence button over and over and distract me from any unwanted stares or attention. For always having my back at each turn.

Naturally, of course we then decided to do a little photoshoot (see picture above). Mostly because it was such an eventful half hour and must be documented, but also because you have to celebrate even the smallest moments of joy. Even if that joy is plagued with obnoxiously loud infusion pumps and the Enemy trying very hard to deceive you. In the end though, it makes for a great story and a great moment for the Lord to destroy lies that were never meant to be there in the first place.

For anyone who has any type of illness, disability, or anything that makes you feel “weird” or “different”, please know you are just as beautiful, strong, and capable than anyone else. You are not in this alone. There is Strength in weakness, there is Truth to counteract every lie.

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