Since the age of six I've been battling illness with the belief that at some point all my internal strength and faith would prevail, putting my fight to an end. The prayers, the diligence, and the sacrifices would all finally mean something. I would be free to wake up one morning without worrying "how am I going to feel today?" Nope. Fakeout! Instead, here I am, at a total stand still. Somehow after all that I've been through: my heart being ripped out of my chest (both physically and emotionally), my kidney's failing, a tube now in my neck, my battle with my sexual identity, my parents nasty divorce, and my fight to overcome substance abuse...the deterioration of my physical functionality and my independence as a grown man is eating me up more than anything. I don't like pity, I don't like being a burden, I don't like asking for help, and I don't like depending on people, especially if it means helping me off the damn toilet. My legs are dying to give up on me. It's become more convenient to pee in a water bottle at the side of my bed rather than get up, disconnect from my ventilator, and walk the ten steps to the bathroom while taking the risk of falling, pissing myself, or both.
Believe it or not I could handle my legs giving out, I could work with that. But when it's becomes a tiring process to cut up a nice juicy steak prepared by my cousin Manny (slathered with my cousin Mike's sweet chilli sauce of course) because my arms wanna bitch out on me too, that just annoys the hell out of me! When it takes certain careful maneuvering to shave my beard, do my hair, or take off a shirt, sometimes I just sit on my bed and curse the sky. Getting up from bed is a workout. Picking something up off the ground? Forget it. Reaching above my head? Good luck. Why am I always on my phone? Yes, I'm addicted to social media, GUILTY 🙋🏻 (snapchat:Christoballer 😉) but sometimes it just takes too much energy to hold up my head straight enough to look you in the face. But I'm not about to tell you that. Christophe isn't "weak" pffffft.
I think the fact that for the first time my circumstances are totally out of my hands, is what has me hopping in and out of such a dark place. There is no cure, no treatment, and nothing in the works to do so. Doctors advise me not to remain stagnant and yet overworking my muscles can also cause the muscle fibers to break down faster. When do I get a break? When does it end?
Just when all seems hopeless, just when everything inside me wants to give up, that's when it happens...PERSPECTIVE.
"Chris hunny, it's been so long since I've given you a hug," says my mother wrapping her arms tightly around me not only reminding me of everything we have been through during my thirty-two years on this earth, but that no matter how old I get I'll always be her baby boy that she will love and protect.
"Hi Chris!" shouts my two-year old godson enthusiastically with a smile as I walk into my brother's apartment reminding me that I would suffer the worst pains and struggles of life if it meant that he didn't have to.
"Let's do dinner next week please? Thanks!" reads a late night text from sister, reminding me that no matter how busy she gets, or what's going on in her life she'll stop it all just to catch up and check in on me.
"Chris I was listening to a podcast today that was talking about some really interesting developments in fighting Myopathies. Here's the link, I want you to check it out..." reads a message from my younger brother reminding me that medicine is evolving everyday and that it would just be stupid to give up hope now.
A single picture emailed by my older brother of my niece and nephew, reminding me that I still have SO much left to live for. My baby sister is getting married in August! ❤️
We all get down. We all have things going on, we all have "bad days". But is that reason enough to discount the good ones? Is that reason enough to be angry at the world and be miserable? If we have the choice, why focus on the negative? Why allow that to be what gets the best of us? As my Uncle Carlos says, "any day outside of the hospital, should be a good day." And he's right! I'd much rather be binge watching trash TV from my cozy bed than attached to a holter monitor, with a nurse interrupting every thirty minutes in the ICU. I need to be thankful, I need to stay happy. Aside from the weakness I actually feel really good! As nurses run down the list of side affects before my 3 month trach change procedure I realize I'm so blessed to say "no" to things like "diahhrea? nausea? dizziness? blurred vision? pain? bleeding? loss of appetite? etc." But switching my mind frame takes work. It's a cycle and the bad days will always come. However remembering the love that surrounds me and to change my perspective is how I'll pull my self out of them every single time.
I'm not alone. I I know I never will be.
- 1 Man, 3 Hearts
*I gladly welcome any questions. My life is officially an open book. So feel free to inquire within!
