I never told anyone this, but for the past two years, I have been going through depression amid nearly losing the ability of sitting up in my wheelchair, being in extreme pain, four fold, aspirating on food, facing suffocation and being admitted to emergency four times in a single year, not having enough strength to use the toilet, and looking death straight in the eye, more than I can count. On Thursday last week, I was at the lowest point in my entire life when I asked my nurse to get me on palliative care while I planned on stopping fluids altogether. Wilma confessed to me on Monday that she wanted to go home and cry. She didn’t think I’d make it past the weekend. I read a post yesterday by a mom who asked if living with Duchenne ever gets better. Better: what the hell does that even mean anymore? Every parent likes to come to me with the hard questions, asking what their child is thinking and wanting a few comforting words. I wonder sometimes how to tell them when the potential future is so grim, with so many hardships and despair. People look at me on the outside and think that all is well. I suppose they never saw the misery beneath my smile, and neither did they want to. I just didn’t have the heart to tell you, you silly person, you! So let’s see… how do I tell the truth in a positive way? No. The answer is no. It doesn’t get better, and depression can be a result of this disease. Smiling every day is nothing more than a fairytale because we’re human. But wait, just stop for a moment. Is this coming from the depressed Ricky, or am I being realistic again? There are times when I close my eyes so I can talk to the little boy I used to be, asking him what he wants after picking him up from off the ground and cleaning his bloody knees. Every time I do, I end up realizing that in so many ways, I never grew up. I’m still at the pre-diagnosis stage where other children are laughing at me for the way I had a difficult time getting back onto my feet. That Thursday during my breaking point, something inside me initiated and my thirst for life returned because I recognized for the first time that I was too unafraid of death. I was too fearless. You get too good at living, you get too good at dying. I know that before Scott Sands passed away, the man was hurting. For goodness sake, he couldn’t even get out of bed and onto here to update our community about his condition. I remember that when we were still communicating, he told me he was starting a book. We were going to help each other with the upcoming one I recently finished, yet within a year or so, everything went downhill in a blink of an eye. His story, at least in his own perspective: GONE. It didn’t matter to him because it was more important to die with a little dignity away from Duchenne Muscular Dystrophy. That’s perspective no one can even begin to understand as this disease slowly takes away every last ounce of your strength. No. I haven’t faced it all. I don’t have all the answers. However, last week on D-Day, when those eyes within the darkness wanted to take my life, I refused, and if I hadn’t decided on trying to wean myself off of my neuropathic painkillers, I wouldn’t even be here as of this moment. This monster called DMD doesn’t give you the luxury of choice. It doesn’t even give you the luxury of an easy breath. I knew it was going to be as tough as impossible to choose, within “choicelessness”, between daily routines and burning like… remember accidentally touching a hot stove and how your skin began to blister? Like that, only in perpetuity. I’m rising again, my friends, this sleeping dragon that was inevitably to be awakened. I want you to know that with this new book I wrote within the aforementioned past two years, it will be the dawn of a new era in raising Duchenne awareness. I’m going to the front lines, in every part of the media as much as possible. Not many, if any, at my stage, with a tracheostomy and on a ventilator, have done this, but cheers to the future, for me and the next generation. Because I. Chose. Life. This is my better.
Posted on: Thu, 14 Aug 2014 03:32:49 +0000
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