… he just kept singing…

          It’s been about a year since we left Chicago, and despite the enormous hurdles of finding and trusting health care in a different location, we accomplished quite a bit. We finally proved his mitchondrial DNA damage. He is taking his L-glutathione IVs fairly regularly. We constantly work on his nutrition. We live a beautiful life despite the medical baggage. In the morning, we wake up to hot air balloons rising outside our window and Michael gets to be there as Aedan goes off to preschool for the first time.
         Last night, though, shook me out of any piece of mind I thought we built for ourselves.
         It started like any other night. Aedan’s bedtime meant that he, Dada, and I go to his room and lie with him for a while (read him a book, cuddle, sing him a song). He loves it when Michael sings to him. Lately, his favorite song is a sweet ballad by Pearl Jam titled “Just Breathe”

Yes I understand that every life must end, aw huh,..
As we sit alone, I know someday we must go, aw huh,..
I’m a lucky man to count on both hands
The ones I love,..

Some folks just have one,
Others they got none, aw huh,..
Stay with me,..
Let’s just breathe



As Aedan drifted off to sleep Michael finished with the words,

Nothing you would take,..
everything you gave.
Hold you till I die,..
Meet you on the other side

These last words will forever haunt us now, for little did I know, but halfway through that song Michael started having intense pain in his left arm followed by a clenching pain in his chest. Last night, while singing his little boy to bed, Michael started having a heart attack.

But this is the thing about Michael- he is so determined to live through those few sweet moments of life that he gets, he just kept singing. He sang to that last line- until he knew his son was sound asleep- before he crawled out of his bed and stumbled down the hallway.

When I found him, his heart rate was elevated to the point of an Olympic sprinter yet he said he was freezing. He put on two sweatshirts and quickly took aspirin. The thing that really got me scared though, was that HE suggested that I might have to call for an ambulance. For a person with normal medical needs this would be a no-brainer. But that’s where it got complicated. 

I remember a time when going to an emergency room was like date night. We would go to the best hospitals in Chicago, and yet, it always seemed like Michael knew more about the medicine of his own body than the attending physicians. The waxing and waning nature of mitochondrial damage would completely confuse doctors who needed concrete results. The fact that Michael, having dealt with this for so long, could actually talk and understand doctors using technical terms tested their own knowledge and conceit. There were many instances when he even had to explain that his medicine, L-glutathione, was a tripeptide, a chain of amino acids, and not some crazy drug with adverse side effects. Because of being failed so many times, we learned how to survive a hospital visit and not to just go and trust you will be seen and helped.

This was why we didn’t rush to call an ambulance right away.

We started weighing options instead. How could Michael explain what was happening with his heart along with the rest of his 3 yrs of rare medical conditions to a completely new doctor? Can we trust that someone good will be working Saturday night on Labor Day weekend? How can we be sure nothing that they do for his heart attack won’t aggravate his other symptoms? Soon the super intense pains started to go down- thank God for aspirin- leaving Michael with a different and scary, yet manageable, new sensation.

Lucky for him, this event stabilized enough to get him through the night. I would wake up just make sure he was still breathing. The next morning he checked himself into the ER where they ran blood labs and confirmed what he knew all along.

It is frightening to think you are on an uphill climb and then suddenly get hit with something so fatal that even if you do recover from the event you will still be set back years of struggle. 

It is a wake up call for us to stay diligent about every life choice Michael has to make now.

It is a testament to what makes up a man who despite mind-altering pain, will choose instead to lay there with his son and just keep singing until he knows his son is peacefully asleep. 

Recorded scrap of paper – Friday 2 September 2011.


I’m on autopilot of sorts and  uh, I guess you could say, you know, with the detachment from the reality around me in the sense that everything’s like a movie or something. And while I can now control my limbs and talk and function, to varying degrees, all of which is minimal at best, but nonetheless very degrees of completely nonfunctional, nonspeaking, nonmoving, to looking good on the outside for a few minutes at a time. But being on autopilot, by that I mean, I do a lot of things that I don’t know how I do them. For example – well because my vision is so undoubtedly and obviously uh, proven, uh, but my vision is so poor at times. And I am trying to concentrate as best I can on how I do things and why maybe. At least try my best to make a mental note and pray that I’ll somehow remember it – by some minor miracle.  But at any rate, um, so I’m starting to notice things and so I think its real helpful to record into this recorder.

But I think I may have figured out a way to start to summarize some of it and it began with me being on Auto-Pilot, in the mental sense. I also have severe cognitive difficulties which I believe is a separate issue. Because I’m confused, my thoughts are scattered, wholly disorganized, completely random and rare. Although, with Glutathione daily and also with Adderall for some energy and a little bit more focus, um,  I’m able to start to articulate some of this a little bit better as that streak of glutathione successfully, which is and has been really difficult to achieve… but if I can continue a string of Glutathione back to back everyday, and Adderall, um, a little more movement is possible and so is a little more thought.  Even with the Glutathione alone, if I remember right, I might have made note that it seems that as time goes on that I start to think a little bit better at some point. Although I think it plateaued, but um…

I think I can finally start to summarize my days, uh, somewhat, and it’s that my function just in general, overall – visual, audio, mental, of course physical moving it’s kept to a very very bare minimum and I save my movement for stuff that’s important. Like going and uh, maybe tickling the boy a little bit or cuddling on him or something. For the most part that’s all I’m capable of doing generally. I’ve never been able to play with his T-Ball set – none of that kind of stuff. But its kept to a minimum.  And so in the morning I’ll go and sit on the couch in the Garage, because it’s reasonably warm out, sometimes very warm out. And I just rest. I just simply exist. Although I’m always in a very peaceful state whenever I become very detached or very spacey or when my body starts shutting down. I’m always in a very peaceful state, I’m happy and I’m grateful for everything I have. I know that this sucks, but I feel as though I’ve learned to deal with all of it very well and search for the beauty of life – which I think I’ve done as best I can. I’m in a peaceful state, but I just simply exist. I’ll stare at the trees for an hour or two or three, or however many. Or I’ll stare at the sky. I try to move a little bit, and even if that’s pacing, or standing up looking like I’m doing something… um, but really just resting my eyes and my brain as well.

If my body is capable of doing anything, at all, I try to push it to its absolute maximum. Whatever that might be. However little, or however much. I push my body to the maximum, but I try my best to rest my eyes a bit and my mind – I found that when my body is able to do something for 5, or 10 minutes and I was sitting on a nice stool with the car in the garage, just working on cleaning some spots on the body or something very minimal. Only for a couple minutes, and then I would have to sit somewhere else. Or do something different, or even just stop entirely and stay sitting wherever I was. Just kind of space out and rest myself. That’s a good day. A very good day.

 On the not so good days, I stay on that couch and I don’t move. Or I move very very little. And a lot of times I’ll keep the garage door closed if I’m doing that because I get kind of self conscious, you know. It kinda looks weird you know. Here’s a guy that looks reasonably normal on the outside just sitting there. That’s kind of weird, so… But even on the bad days, so long as I haven’t been without Glutathione for too long, even though I can’t move or its very hard for me to move very much or sustained or whatnot. If I… It seems that I’m saving my energy, whatever I might have and it’s usually not very much, for the last half hour or 45 minutes of the day before Aedan goes to bed at about 6 o’clock. It’s like clockwork with the kid. So it’s perfect because I hit the wall at about that time, at the latest. But that last half hour, 45 mins… man, I just swing for the fences. Anything I can do, short of blacking out – you know because I’ve kinda learned to walk that line very delicately …  I just go for it. And I love life. In those moments. I just kind of exist all day peacefully just saving up for those moments. But anyway…

Maybe every 45 minutes or an hour, maybe a little more so sometimes I suppose, I will go inside from the garage from just sitting on the couch or slowly and gently pacing back and forth – I mean very slowly, or anything. Then I’ll go inside and maybe give the boy a kiss on his head or something. Or I’ll sit with him for a couple minutes, or as long as I possibly can stand to. Because the pain becomes very intense when I stop. Oddly. So when I can move it helps some of the pain, sometimes. And it’s only certain types of pain it helps. Doesn’t help all of the different types because there are multiple types at once. But after a couple minutes with Aedan or however long I can sit – and again, a lot of times its very difficult for me to sit still. In the garage I have the freedom to move and not look normal about it. Just sporadically get up off the couch and walk to the table which is 2 ft away in the garage. Or anything. I can move very haphazardly and randomly which helps sometimes. But then of course it zaps whatever physical energy I had. But sometimes it helps keep some of the pains from getting too bad – some of them. But anyway, my eyes get real tired. My brain gets real tired when thinking. And again, it seems like that’s a completely separate issue. The cognitive problems  vs how disassociated I feel with the world, disconnected. I don’t remember anything about myself in a lot of ways, I don’t recognize myself as me… it’s really difficult to explain. I can’t, I haven’t watched movies in years. Since I got sick. It’s just something my brain can’t do. If I can watch anything at all it’s things like American Restoration or something. It’s a half hour show where I can just space out, there’s no real storyline that I have to pay attention to like anything else. It’s just watching pretty images of some guy restoring a random 1920’s firehouse or something weird. Or American Pickers for the same reason. But generally my eyes just blur out and I’m completely spaced just staring at the TV. Every once in a while checking in when something either catches my interest and I seem to wake up just a tad, or if I’m not capable of even that some days or at some points, then I just kind of blur out and stare at things. And try my best not to look weird when doing it. And uh, it’s kind of hard. Kind of hard to describe is what I meant.

It’s hard to fight through a lot of this because it seems that if I can scream loud enough at the movie screen, or somehow get this Auto Pilot to do something, like try to feed myself – and it’s rare that I’ll remember or realize I’m hungry. I lose track of time. When I’m in that blanked out state, which is more often than not, then the concept of organizing some kind of food setup for myself, finding the food, what do we have, what ingredients can I find… or, you know, the normal stuff. Open the fridge, what do we have… visually I’m almost immediately overwhelmed with the fridge, and I get – I don’t know if confused is the right word but, um, all of this again with a completely neutral reaction. I’m not having any emotional reaction. I’m not freaking out, I’m not happy or sad. I’m just at absolute peace somehow. But things just overwhelm my mind in the sense that it can’t seem to process it. Again, like looking at the fridge, it just confuses my brain somehow. But if I can get through that, which is difficult, and trying to fight through that sometimes it causes a physical pain in my head – in my brain – it’s amazingly difficult to describe. It’s almost tough for me to believe, but it’s true. I even noted that a long time ago.

But then, I don’t have the energy to do any of it at some point. The physical energy – my body starts just shutting down. All of the sudden it’s like a weak battery in a flashlight. You know, when you first turn it on you might get a little something out of it for a couple of seconds. And it seems reasonably bright. Nowhere near full power, but the bulb is bright enough. And then all of the sudden, once it starts to dim just a little, all of the sudden at some point it just starts going down down down down bang. Like it just starts to slide down a little, getting dimmer and dimmer, then it hits this slope and bang. Gone. The light bulb goes out.

That’s kind of what it’s like in my body. As if I can get a short burst of energy or something, like turning that flashlight on after you let it sit a while. The bulb lights up, and then I might try to do something. Like get off the couch in the garage and try to do something that would be productive, or that might entertain my mind. Like making a little jump for Aedan for his Monster trucks out of wood or something. I have varying degrees of small amounts of energy. And if I can get up and do something – so for example even going to the kitchen to try and find something to eat, uh, do everything I can, fight as hard as I can to feed myself. Then I get confused about it. And again, that’s IF I can remember, IF I can get close enough to reality and/or scream loud enough at that movie screen for that character to do something, then my mind is actually confused by the process. And if I can somehow get through THAT, I end up with very little, if any, physical energy to actually do it. And so I just bloop –  that’s it. I mean again, I don’t freak out about it. I’m in a perfectly peaceful state. I mean, it is what it is. Freaking out is a luxury I don’t fucking have. So I don’t. I mean, what’s the point? It’s not going to change anything, I’m gonna be like this. And freaking out is going to rob Aedan of a Father he can look back on with any goodness. You know, and it’s going to take away a lot of his world too, just by the negativity. NO. You know, it is what it is.

I’m not even that connected to reality in real-time when those things are happening to say what I just said, or to think it. It’s just the way it is. I’m perfectly cool about it. I don’t even process it, it’s just like POOF – a fuse gets blown and I’m just totally spaced out. And that’s it. Then it’s just like I’m some Zombie robot or something. I really can’t do much about it, so I just go back to wherever I was sitting. Or just go sit on the couch in the living room if it’s later at night and Nikki’s working. And I’ll just sit. Because that’s all I can really do for the most part. And I just, you know, exist. Happily and peacefully, but I exist.

I kind of went off course, but I’m just trying to let it all out as best I can. So I kind of lost my original point, but hopefully I’ll get something useful out of this later.