Something happened this trip that hasn't happened in previous ones that took me a little extra to digest. Steve reached his breaking point. Not just a fleeting moment of "I can't do this." His actual, "What am I doing? This is crazy breaking point."
If you follow us on Facebook you probably read his status, if not; here:
This last hospital stay, I said I'm done with this life to hope. I said to call just call my parent's so that I can say goodbye to them, so let me paint you a picture of the last twenty four hours. I just found out that my pick line had yeast infection in the site that was pumping yeast in to my blood stream, so they pulled it out ok, so I'm feeling good with this, then they tell me that my liver enzymes are going down crazy fast because of the tpn food's I'm on, and that I'm not really allowed my pain meds. So, they need to get my food in me, so the simple things will be to stick me with an IV, oh yeah, but they already shot all of my veins through previous visits etc. So, they sent in six of their best at finding veins. Well, they didn't tell these brave men and women that I swollen to double the size of my normal self, so they were putting the turnicut on so f'n tight and digging in my arm's, hand's etc to find a vein. This went on for five hours or so. Mind you I'm not allowed pain meds throughout this ordeal. I was stuck upwards of seventy times in that span of time with the digging around. So, lets go back to when I said MERCY God and to hope. Okay I woke up at two in the morning with a one hundred and four degree fever. So f'n cold I was, and the only thing they can do is a freaking ice bath. So, hope and my nurse KAY were dumping ice on me and putting ice soaked towels on me that would be hot to hold after five or ten minutes on me. I gave up for ten minutes, thank you God that my dad didn't answer the phone calls or I would be another stat on als's board. I'm so happy to be alive and I love Ya'll so so so much, and i'm to my wife who kept putting ice on my naked body even as I was giving up, you're my angel, fighting through your tears for me, I'm so so lucky you're in my corner, I love you so much boopy poopy. Als is not going to win, we have a new plan. God bless you all, I love Ya'll so so much and thank you for your support!!!
(Steve meant his liver enzymes are high not dropping.)
So since being home from the week long hospital visit, I keep waiting for Steve to perk back up to full out positive Steve. However, it hasn't happened like it has with the other trips. He's still fighting with all he has but his mind is tired. When his body has been taking a beating his minds always gotten him through. I don't believe Steve is giving up but I can see this disease stealing that sparkle little bits at a time.
So how am I dealing with it all? All in all I would say so-so. Part of me is working to build him back up; both his body and his mind, where the other part is trying to allow him to feel however he wants. This has always been his journey, his choices; and it's hard not to want to force my "stuff" onto him. I want him to feel the same way as me, and that's not real life.
Up until now, my usual motivational speeches, silliness, and meditation ceremonies would always help him come back from the darkness that is ALS; this time it's really up to him if he wants to come out or not. It's teaching me to step back. It's teaching me to let go of control. It's teaching me to accept.
Accept what exactly I don't know, but it boils down to this. When I said yes to marrying Steve and going on this journey with him, I said yes to supporting his choices in this. It's not about me. I battle the it's all about me Leo side in me daily, so this one is hard.
Obviously, this isn't a blog to get everyone stirred up; you read it Steve's still here and he's still fighting this beast. This is a dialog about me accepting the reality of , "How long can one actually withstand this kind of a beating." It's about the impermanence of this life. I always talk about taking in nature and all the beauty because it's not permanent and will go away, and truly try to view our lives with that in mind, but secretly (or maybe not so secretly) I've always believed ALS would have a cure by now. I did. Sounds crazy to those who have gone through this for 20-30- even 40 years for my unreal optimism of a cure/treatment; but I truly believed it.
Life with ALS is beyond what you read about ALS symptoms, it has layers and layers of complications. When you stump and awe your medical team because of unseen before complication after complication; it's exhausting. I have to stop fighting the acceptance of this reality because when I signed up for this, I signed up for standing behind Steve's every decision, and if one point he says, "Okay I fought the good fight, and I can't physically do it anymore." I have to be okay with that. I just have to.