It happens. Not to everyone, not to all of us but enough to know it happens. One minute, you’re flying high, fuck walking, and feeling like you can handle anything as long you’re not alone. As long as people see you as you like. As long as things stay like this. Even doing those good days, good times, I feared what would happen if I continued getting worse. How much traveling, living overseas, and taking kids on cultural explorations could I really do if things got worse?
In my darkest imaginations, I always feared what happens if I got worse. What happens to my goals? What about my vision board? Do I give up, lay in the bed, and squeeze out whatever life I can find watching TV and listening to podcasts? *sniffles starting*
The flat ugly of beautiful is this. As hard as you fight your illness, as much as you smile, hold pain under your breathe, you are changing. I felt it years before I spoke it out loud. I was changing to BE better because of my chronic illness. You will change too. My interests shifted from boy-heavy, action, blow up stuff movies to romantic comedies. *awwww*. My diet changed from anything and everything to Pescatarian. *gulp*. Yoo. Dawg. Homie. King. I don’t even drink alcohol anymore. *clapping*. Every one of these changes cost me conversations and quality time with the people physically closest to me. Sports, video games, and driving are no longer anywhere near my list of to-do’s. Without these tiny conversations, I’m slowly left off more and more text groups, my messages arent’ returned or paid attention to, and people don’t leave emojis and LOLs nearly as much. For what it is worth, I do the same. I’ve stopped giving reactions on group feeds, quit sharing what I find interesting, and slowed on sharing my stories. I’ve made monumental improvements to my perspective, more resilience, less crying.
I write in my Gratitude Journal several times every day to manage my negative thoughts and overthinking but it is as relentless as the progression of my illness. Sometimes, I feel like it’s the only thing I have left, the only thing strong enough to hang around me and my changes. Even my Queen, wife, the lust of my loins is confused on what to do about this life. She is suffering watching me take body blow after body blow, careful to avoid the headshots and arm grabs. I know it. I’ve felt this. My potnas tell me how hard it is watching me move. “Bruh, nothing you do is easy. It hurts watching and helping you get around.”
Today, I finally had THAT conversation with her. I held tears telling her not to waste her life hoping, wishing, praying, grinding, reading, and taking care of me. It’s not right. I can’t help fairness but I can do something to correct directions. This was the quietest, longest conversation we had. She told me that she didn’t want to go from wife to caretaker. I totally get that because I would NEVER want my Queen to assist me with bedwetting and bedsheets of boo boo. (Lord have mercy have my poor little pride.) She told me she struggled to ever find a moment to be romantic with me all. My actions and movements bring her pain. My schedule doesn’t match her waking hours. This is the ugly side of beautiful. As hard as you, I, try, the simple truth is that friends and family are casualties of war. This battle with chronic illness, and chronic pain is never-ending, every single day, every freaking second. I wake with it, sleep with it, eat with it. I do so much self–care to manage my thoughts and emotions that I don’t have time to make adjustments for anyone else. As my marriage teeters, leaning this way and that, all I can do is think about it, remember how things were, how many friends were, how many good times were…
This is the ugly side of beautiful. It’s beautiful being strong, keeping things going, inspiring others, and giving middle fingers to chronic illness and physical limitations. It is powerful to see someone pushing forward, mindset OVER bullshit, BEING better despite negative thoughts. The ugly is the loneliness, the very independence you pride them, US, with.
2 thoughts on “The ugly side of beautiful (love, MS, and friends)”
*bows* This IS the therapy. I feel people’s sympathy, homies, kids, wife. I’d rather rock it alone than feel I drag others’ down. I sincerely appreciate the love but I am who I needed, I am who I need now. *tears fall on the pad*
Heavy stuff, thanks for sharing and bringing us along on your journey.