Everyday advocates

March was all about the word ‘advocate’ for me. I took matters into my own hands and got myself a cardiologist appointment…

Let me just interrupt that train of thought for a second. If you are curious about how that cardiologist appointment went click here or go to the top of this page and click on the ‘connect with me’ tab.

Okay so my one word for March was advocate…

Sorry, another interruption. Just in case anyone is wondering what my one word for April is I’m not going to write a post about it because I have nothing interesting to say. My word is sleep simply because I haven’t been sleeping very well lately, mostly due to symptoms, and I’m trying to change that.

Okay. Once again, my one word for March was advocate! As such, I’ve been thinking a lot over the past month about what it means to be an advocate and I’ve come to the conclusion that being an advocate is a lot more relevant to everyday life than it may sound. It’s kind of a heavy word. On one end of the spectrum, when I picture an advocate I think of someone protesting at parliament or arguing on someone’s behalf with lots of yelling and threatening hand gestures.

Then on the other end of the spectrum I see all of us regular people going through our regular days and making regular decisions. A lot of times, though, those regular decisions have a positive impact on our life or someone else’s life and it’s then that we become advocates.

I worked hard to get myself in to see a cardiologist in March, but that’s not the only time that I advocated for myself. One day I decided that I would run my feeding tube every day for the next week. I can tell you that I felt miserable that week and that every day was a little bit worse than the one before.  I was counting down the minutes until I could take my next dose of anti-nausea medication and I was up until the wee hours of the morning with nausea that wouldn’t settle down even hours after I unhooked my feeds. But despite all of that, each day I would try again.

Why? Because I was advocating for myself. It sounds counterintuitive, I know. How does making myself feel miserable have a positive impact on my life? But it’s not just about the here and now. When I chose to try and run my tube feeds I was advocating for my future. In the long run, tube feeds are a much safer and healthier option than TPN, so I was trying to do what was best for me overall. Besides, if I never tried how would I know if things had gotten better?

After five or six days I gave up, and by giving up I was also advocating for myself. Instead of advocating for the possibility of a healthier future, I was advocating for a better quality of life in the present. I owed it to myself to try running my feeding tube, but I also owed it to myself to stop when the misery became too much to handle.

The thing about being an everyday advocate is that it’s not always straightforward and it’s not always consistent. Being an everyday advocate is about looking at the bigger picture and considering multiple factors, factors that change in importance over time. Sometimes ‘what’s best’ can change even moment to moment.

I am an advocate for myself when I choose to eat something and let myself enjoy the simple pleasures in life even though I know it will likely make me sick later, just as I am an advocate when I choose not to eat something knowing it will avoid triggering my symptoms. I am an advocate when I choose to socialize with my family and friends knowing that all the talking and laughter is going to make me happy but leave me with a pounding headache, nausea and dizziness, just as I am an advocate when I choose to miss out on the fun knowing that I will be in better shape to do what I need to do later. Fun now, pay later? Or discipline now, easier time later?

Like I said, it’s not straightforward. Neither decision is the ‘right’ one, as it depends on other circumstances at the time. And both options have their downside. Every decision we make has negative outcomes so it kind of seems like we can never win.

But here’s the cool part: every decision we make has positive outcomes, too. We have so much power to put so much good into the world. We have the ability to advocate for ourselves and for those around us every single day. We have the chance to make our own lives and the lives of those around us better. Every single day.

I know it sounds obvious…duh, of course our decisions affect our lives…but I guess I lost sight of how much control I actually have. For someone living with an illness where it feels like I have no control whatsoever, that’s a pretty powerful reminder. I can’t control my illness, but I can be an advocate for a quality of life despite it. Every day I get to be that advocate. And it’s not just me, it’s all of us. As hard as we may try, there are so many things in life that we cannot control, but every day we get to choose to try again, to start anew, to reach out and to carry on anyway. Each of those choices is a chance to be an advocate.

It’s a big responsibility, but it’s also a big opportunity, and I’ve also been a glass half full kind of girl.

Opportunity it is, then.

5 thoughts on “Everyday advocates

  1. I love the phrase “everyday advocate”. I’m going to apply that to my own life – it’s already been quite an eye-opener to think about it this a.m. Thanks for the inspiration!

  2. I so love that you are such a powerful advocate for yourself. I appreciate those times when you know that you can’t give anything to anyone – but I also so appreciate those times when you choose to laugh with your family (like tonight!). I know how much this costs you. I also respect those moments when it takes all that you have just to breathe. Thank you for choosing to share your life with us – I am a better person because of you – all my love – Mom

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