Hope v1.5

My mental abilities aren’t enough at the moment to make many of the posts I’ve been daydreaming of. Those will soon follow as I have a lot to share. Some really amazing stuff and a whole lot of things that aren’t such good news.

Hopefully I can start posting some of the things I’ve written and meant to post. See, as many of you will understand, my brain seems to work and think in fragments – even on the best days. And for me, the trick is to get as many fragments together as I can and hope it comes out as something that resembles sensible thought. My posts generally take me a very long time and take tremendous effort. Again, something I am certain many of you can relate to. So I tend to miss the opportunity to post my thoughts and updates as my brain tires throughout the day. But it is my mission to help each and every one of you. Always.

Just please know that as much as I want to help, I am still very ill. Daily tasks are still overwhelming to me, even on my best days. I just want you to know that I am here, even if I am unable to communicate at the moment. And that your messages do reach me. I will try harder to check my messages now that I realize just how many of you have been sending me your questions, admitting your fears and reaching out for a beacon of hope.

Until the day I die, I will be here to help. So please, keep it coming! It fills me with purpose and hope just the same. And I have much love for you all.

Patrick, Lucas – Your messages were the ones I saw first and some of the things you wrote really hit home for me. Patrick, your last line was haunting for me. I too remember all too well being frustrated and not understanding how come it would take me 30 mins to write 3 or 4 simple sentences. Little notes like that inspire me to write, and I suspect my writing on such subjects will be amazingly helpful to others who are experiencing it too. Maybe soon I will start to share some more intimate details and share my logs and such. My challenge here is I want to share everything, but I don’t want to scare you or make you lose hope. Which is why I usually only share the good stuff. Please, let me know if it would be too much for you to hear it all. I need some feedback here.

In the meantime, I have a message for you.

And remember: Never, ever give up. This is not a death sentence. Live. Live with purpose, meaning and intent. Even if you can only move your wrists today, no matter how horrific the pain is… NOTHING can take this day from you, and NOTHING can take your quality of life away – except you. YOU truly can control how this day will end for you, and you can control what it means to you. Live my friends. Live.

Your Friend in Fight – Michael

Recorded scrap of paper – 25 October 2013 – 8:20PM

25 October 2013 – 8:20PM

Although I’ve been doing better recently, a lot of times I have a hard time talking a long time. At least later in the day, like it is now. It’s 8:30 or something.  And uh, things are always much worse starting in the afternoon. Goes downhill, always.  But, I have a hard time getting through the mental state to know to pick up or find this recorder. A lot of times when I do I get mentally lost. Like now, my breathing is just shallow. So I – I need to take a break and stuff. A lot of times I’m silent. Um, but it’s hard getting my thoughts out – even when I feel I have some I can get out. If I don’t have someone – like a scribe chasing me around listening to me babble – which would sound absolutely bat-shit crazy. Um, I can’t always get my thoughts out because they’re always so random and scattered. I started this recording with something specific I wanted to say, and, having a very hard time getting back to it.

And uh,… anyway… Thoughts into actions – or the thoughts out somehow. By the time… if I’m able to get to the computer to start up the video…  like I need to be in front of a piece of media, uh, recording media, when these thoughts come. And it somehow just needs to be out. Um… because I don’t have the physical stamina often, at times like this,  when I get the thoughts but I um, my body’s having worse issues as is my mind. My um, my ‘ability to get things out’ mind. So I lose my train of thought to be able to write often, and if I try to type it my fingers start having a hard time, my arms start having a hard time,  my eyes start having a hard time so that’s another big problem. My eyes get so tired, they just fatigue so fast. Still orders of magnitude better than it’s worst point. But… but all these different issues that I have come together because they all happen at the same time to make things – not impossible – but um, uh… not successful. It doesn’t happen or amount to anything that becomes of any effect on my situation. Nothing comes of it. I either lose the scattered pieces of paper – because I’ve done this for all these years. Not as much recently, the last year or two, uh, I – I didn’t give up of course. I never give up. Clearly, I don’t give up.

But uh… See and the more I talk too in this, I try to get thoughts out but I’m distracted by my heart. Right now. I’m distracted by the pains running down my legs. The different types of pains in my legs and  running down my legs. The tightness in my chest. I’m distracted by my eyeballs that hurt so bad. Distracted by my face that tingles, by my lips that hurt. Well, my lips don’t hurt that bad, I just feel my lips. And so then I lose my place. Everything becomes very frustrating. I absolutely don’t quit because of frustration. You know, I’m able to handle frustration, but it’s there.  Frustration – it’s not that it never exists.  Unless we can get to a place that that happens, I would love that. But, I think its your ability to quench that fire as fast as possible – and that I’ve… I don’t think I will ever ‘Master’ something, but, I do think I’ve done an amazing job.

Wow… my limbs are so heavy. You know, and I, this is normal. I uh, I just live with this. This is better than it’s been. Far better.  Thankfully I’ve remembered the Amino Acids and the ProDHA about 6-8 weeks ago. Since then things have been better, still doesn’t amount effectively too much. But.. but you’re grateful for your small wins. Effectively it’s a small win but to me, it’s an order of magnitude of functionality in the sense that I’ve been able to… able to talk to my son more coherently when he wants to ask Daddy a question. Or be able to respond in a way that isn’t confusing … or scary to a child. Um, we’ve had to tell him that I have a ‘loading’ screen. You know, like a ‘Now Loading…’ screen like you see on a video game or a computer or something. And when I pause, it’s because I’m trying to process what he’s asking. Because I have a very hard time switching, uh, from… uh, transitioning from thought to thought or from streams of thought to streams of thought, um, that I don’t try to control. Meaning if someone asks me a question, that’s a change that I didn’t make. And that becomes a problem for me to overcome. So when my Son asks me a question, a lot of times I have to pause – well more than a lot of times, almost always. Except the last… there’s been twice I think, that stand out to me as being very well recently. I’m very grateful for that.

Uh, we’ve had to tell him certain things now more so he doesn’t get hurt emotionally somehow by him trying to read Daddy’s reaction. Because my reactions aren’t’ always consistent. Because I’m in a very dynamic situation with my physical body and my mental abilities and state. And so I can’t always respond as playful, or as quickly, or as… um… I might not be able to look as happy consistently – although still happy- he can tell the difference. He’s a very intuitive little man. Little boy. Um…

I have to take a break.

Recorded scrap of paper – 25 October 2013

25 October 2013 – 8:05PM

I’m standing here in the Garage like I always try to do – well not always but often. Very very often try to do. I’m standing because I try to stand as much as I can. That’s my ‘Defiance’. And uh, I’m doing what I frequently do and that’s either replaying conversations in my head when I was desperately trying to ask for help  from somebody – unsuccessfully – and uh, as Nikki pointed out today… uh, I didn’t realize. I’m having a hard time figuring out my mental, uh, situation as well. Nikki pointed out that when I lead the conversation, I have a much better time. Which is why people often, understandably, misread my abilities. When they lead the conversation, like happened last night, I get so… I get very lost and it’s like – like when I was a kid. In the Indiana Sand Dunes, running down the hill. There’d come a point where such a steep Dune and such a steep hill – at least to a kid – uh, you’re running with giant leaps and steps just trying not to fall, tumbling down end over end. And that’s precisely what that point of ‘Terminal Velocity’ – that you reach – is precisely what happens in my head when I start to get lost. And that’s how my head feels. I’m just rushing to keep up.

But I’ve practiced keeping a straight face because Doctors would otherwise, completely dismiss – even quicker anyway – dismiss what I’m desperately trying to tell them unsuccessfully. Explain through the mental problems that I have… besides it [my list of symptoms] just being a giant scope in the first place to figure out on your own. And uh, I’m not depressed about the situation that I’m in. I’m just at the point where I’m waking up mentally enough to see the reality of where I am. And I realize I’m just not getting the help I need. Simply not getting the help I need in any way, shape or form. Well, that’s not entirely true. I’m just not getting the basic help I need. And I’m fighting so hard, in every conceivable way that I’m now coming to the realization that maybe no one will ever understand how hard I fight every day. And how hard I fight through a mental fog, too. Keeping a good attitude and trying hard to make sense of my thoughts, on giant white boards behind me here in the garage, that I had to fight through a mental fog to ask a friend to help me with. Then fight through a mental fog to try and describe what I was to say and do. Everything I’ve done is a huge, HUGE effort on my part and uh…

I’m going to take a break.