With every new challenge ALS brings to us, it takes acceptance and adjustments. Acceptance that this is the reality now. First comes the feeding tubes, the catheters, the traches, the vents, IV food (for us), to loosing more and more mobility, to bed sores. Once you can accept the reality the adjusting seems to come a little more naturally.
Acceptance has been something that we have had to work towards. It's a hard thing to accept the realities of this disease. It's hard to accept that there's not more I can be doing, or that there's no more help I can be given from nursing stand points, or that there's no medical treatment for all these complications, or that we have another wound to address.
Sometimes trying to wrap my mind around accepting things I do no like, is a challenge for me. My warrior mentality kicks in, no way will I accept this. I don't like it. I want to change it. I will change it....
Then I get exhausted by running around with zero focus, accomplishing close to nothing; because I'm still wracking my brain on how to change the unchangeable. On moments like this, where I'm stressing the situations I cannot change, I find myself doing the mindless scroll on the phone. Basically, I'm filling my brain with other peoples lives and dreams, to avoid facing my reality; because I haven't accepted it.
*God help me to accept the things I cannot change* Yes yes....I hear you serenity prayer.
This, without meaning to play on words, is unacceptable. Here's a simple truth I realized this week, because I have been indulging in the many distractions in front of me; I've been holding myself back. I haven't worked as hard as I could, I haven't done our taxes, finished my Ayurveda class, worked on my book until yesterday. The list of things I have not made the mind space for is long, and something to add to my list of accepting.
Aside from our daily 2-3 hour wound care and re positioning and the many other minutes to hours I spend with Steve, I have been wasting my time. Accusing all kinds of other circumstances of doing so.
Of course, I'm accomplishing tasks, EVENTUALLY. I have too much to offer the world to be wasting my time on the mindless checking out. Don't get me wrong, social media is a huge part of my life; and probably always will be. We have grown to love a lot of our followers and supporters and have even made life long friendships with people we've met on social media. It's important to share our story, as it's making a large impact in the world; and it's a beautiful thing to see Steve light up as he's changing lives.
However, there's mindful social media, and mindless; and it's time I let go of the mindless. There I accept that I've not been fully practicing what I preach, I have found chunks of my day where I can't tell you what I did with it, and now I know that I'm not always living in the present.
IT IS SO EASY to check out, to do the mindless scroll, and to try to hide from the reality of the situation, however it doesn't help anything. All it has done was leave me feeling like I am not living up to my potential. I have so many ideas, creations, words, visions, etc that if I better used my time I could see come to fruition.
So here it is my public acceptance that while yes I am doing the very best for Steve in being his caregiver, the rest of my time; I've been a hot damn mess. I accept that most days I will not be able to do enough for Steve. I can't take away his pain, or stop him from having to endure so much to stay alive; but I can be there with him fully present and allow him to experience this knowing he's not alone. Then because he does enjoy alone time, I owe it to him and myself to be using it wisely.
So I'm going to be making a change. I'm not saying it will be easy and I accept that, but it will sure as hell be worth it when I can go to bed at night knowing that my day was spent in mindful activity. I want to know that I put my all into each day. Because life is too short for the mindless distractions, and I'm a damn warrior-meant to do much more with my life. So it's time I step up.
I'll still be here in the social media world, so you will still see me. I just will not be spending hours mindlessly scrolling through a feed seeing things that may or may not even serve me. It will be more dedicated to actual conversations with people who inspire me, people who support us, and hopefully it will be a place for me to continue mindful living.