Hey, look at that! The title isn’t a song title this time… evolution is real! (::laughs awkwardly::) This blog has mostly been used as a way for me to document my journey from my perspective. I like to view it almost as if it’s my inner monologue- at least, that’s what I try to do. The youtube channel was originally going to be sort of my blog in video form with a mix of family vlogging/documenting the things I make, but it kind of took off unexpectedly, and who knows where it’s going now? I definitely don’t, but I sure am enjoying the process and the sense of community I feel from it. YouTube has been like a warm hug for us- it feels like an extended family, and I’m grateful for it.
I woke up this morning to this video on my Facebook memories from just one year ago. It feels like so long ago and like yesterday, all at the same time. I was so proud of myself for being able to sit up that I made Lee take a video of it, and I’m happy I did.
I wanted to take this opportunity to show gratitude for this phase of my life. My body is still a wreck. I’m in pain every single moment of every day, and life is challenging; however, now more than ever, my soul is at peace. There have been times in my life (many years ago) when I wanted out. I felt ashamed, embarrassed, isolated, and in the darkest of places, and I wanted out. The only thing that kept me around was the love I had for my kids. I stuck it out because as badly as I was hurting, I couldn’t hurt them. Now, it’s right the opposite. My mind is strong, and my soul is happy, but my body feels like it’s constantly walking a tightrope between this world and whatever’s next. I’m scared to die, and I’m scared I’m going to die, but I want to stay so badly. I’m scared that I’ve come all this way, and made all this progress to only get in a minor car wreck that finishes me off, or another neck surgery that goes wrong somehow. It kind of sounds far-fetched, but it’s really not so I’m in a constant rush to accomplish something. Accomplish what? I have no idea, but I know I want a happy ending; right now I’m still a main character in some weird story with all this conflict and the writer doesn’t yet know how the story will end.
This was also taken exactly one year ago today, and it reminded me of something I haven’t talked about before. From left to right behind me: Connie, one of my respiratory therapists; Dalton, Riza, and Stacey- 3 incredible nurses.
Of all the time I was in the hospital, I had one hard and fast rule: Lee was not to be in the room when I had shat myself and had to be cleaned up. At 37 years old, that’s not something I was willing to accept, nor wanted my husband to be involved with. I’m sure most of you reading this would feel the same way if you were in that situation. Unfortunately for me, this rule was broken more than once. I remember having a diaper full of poop that needed to be changed, but it’s a two-person job, with only one available. My husband being the man he is, stepped in to help. He held me on my side while someone cleaned me, and I can remember lying there sobbing. It’s sweet and beautiful and horrific and humiliating all at the same time. I know they were hoping that I just wouldn’t remember, and I’m sure there’s plenty of times that I don’t, but there’s also times that I do. I just remember lying there completely helpless and embarrassed and sobbing uncontrollably.
I remember one day specifically with Riza (in the bright blue scrubs above). They had given me something in my PEG tube to make me go because I hadn’t been in a very long time. When it started coming out, it just kept coming, and coming, and coming. Like lava 😫 Poor Riza spent at least an hour getting me clean from head to toe while I cried, and no sooner than she had finished, it would start coming again. She must’ve spent her whole shift cleaning my poop, but she. was. amazing. She NEVER ONCE got frustrated, annoyed, or showed me any emotion other than pure compassion. She would talk lovingly to me while cleaning me and say how good it was that I was finally going to the bathroom (even if it was in a diaper). I will never forget that. I will never forget how she treated me like a human being deserving of dignity and compassion even though she was having to deal with the most vile parts of the human body. I don’t know if she will ever see this, but Riza, if you are reading this, I want to thank you from the bottom of my heart. You treated me like family, and made me feel safe and dignified. I have tears rolling down my face as I type this; you embody everything healthcare providers should strive to be. You are truly an angel walking this earth, and I will carry your kind spirit with me for the rest of my life.
In just a couple of days, I’ll be having another surgery- just another obstacle/bump in the road along the way. I’m not scared of the surgery, but I have a little anxiety about being in more pain again. It’s not that I can’t handle pain… I’m just tired, but as Larry the Cable Guy says, “Let’s get er done!”