Out of the darkness comes light…

Site moved to www.ThenCameMichael.com 

It’s said that before you die, your life flashes before you.  For most of those first 500+ nights, I didn't think I would live until morning.  Worse still, my mind was so heavily affected that I couldn’t articulate what was happening to me very well. I hardly understood it myself. And I was all alone…

All day and all night, I was stuck in a chair in a back room of the house. Unable to move, so many intense pains and sensations starting… all of them so far beyond anything I’ve ever felt. Once the heart issues started to become more intense (roughly May/June 09), when I would try to speak, almost immediately my heart had a very intense sharp and burning/clenching pain. That pain would increase in intensity as I continue to speak and subsides rather quickly when I stop speaking. Around the time of these videos, I lost my ability to speak entirely for nearly a month and had to type to communicate to Nikki. Shortly after that, my hands became too numb and I couldn't control my fingers enough to type. I became locked in, unable to communicate in any way.

This still happens, although now it only happens when my baseline is low enough – which is frequent now, but not an everyday occurrence as it was. The heart pains I described in the video are the same that caused my heart issues in Sept - I leak Troponin when this happens which marks the death of heart tissue and beginnings of congestive heart failure.  The Mitochondrial damage explains this...
I am still very weak and have gotten significantly weaker in the last 12 mos.

 My mind was not right, I had an extremely difficult time thinking my way out of it. My mind was then (and still is) very slow, I was so confused. So detached. I would liken it to being in an awake coma of sorts. I knew what was going on around me, but the world was/is happening way too fast for me to process.

I still have all of the same issues. Thanks to the Glutathione IV's the intensity has gone down somewhat. Now I can walk very short distances around the house and most of the time I can walk upright now until I hit the wall. Which doesn’t make too much effective difference in functional ability as compared to “normal” and my improvements are completely dependant on the Glutathione. But it’s enough of an improvement to make me grateful.

Since this began, I have been struggling to be able to write about it. I get very confused. I am having a very difficult time summarizing this in a way that I feel makes sense and accurately explains what it’s like to be in this body.

I want so much to be able to give those like me a place where they can read the experiences of someone going through the same thing. I cannot imagine what it would have done for me early on to be able to find that there were others like me. I just sat there and let this thing impose it's will on me. 15+ long months where I was mostly bedridden/stuck in a chair. No way to get help as I saw it. I know there's more out there like me... just sitting there. Taking it, trying hard to fight alone because they're confused too.

Recently I began looking through my old logs and through all the scraps of paper I’ve written my scattered/random thoughts on. In the process I came across a bunch of videos that I didn’t recall making. I want to share them with you now with the hope that if you’ve been devastated by Levaquin as I have, that you’ll find solace and know you’re not alone. And most importantly, know you're NOT crazy and that no matter what the Doctors initially tell you, this IS happening and you WILL find help.

These videos were taken during a time where I was experiencing what I now call "hitting the wall". Once my body becomes exhausted enough as a whole, this is what happens to me still - although to a slightly lesser extent.  Some days are better than others.

There is much context I feel I have to add to describing what I was going through at the time so that what you’re about to see makes sense. But I’ve decided to just try to write whatever comes out.

Hopefully soon I will find it easier to describe in greater detail, but I think these videos speak for themselves. Because I was having a difficult time speaking clearly, I have also provided a transcript for each video.  But don't just read. Watch. Turn the sound up, it’s hard to understand me…

Video transcript:  6 August, 2009 – 9:10 PM

I really hope you can hear this, my voice is mostly gone. Like Laryngitis – but I’m not sick with Laryngitis. Something’s pushing in my throat. The more I talk now, the more my heart really strains and hurts.  And I’m trying to record this now because the last hour or so, I think, I very rapidly became like this. Everything is real heavy in ways I’ve never felt before. Every bit of my body – everything – instead of just like arms and legs or whatever. It’s hard to move and…(unintelligible) – It’s almost as if my body is covered in lead, all – all of it. Like a suit.  My face is heavy, my skin is heavy. I’m very slow. Like moving through molasses kind of slow. And up until a little while ago, I wasn’t able to move myself at all… too heavy. Arms too heavy, my body too heavy.  What little I could move made my heart hurt so bad. Which is kinda how it’s been…

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Video transcript: 6 August, 2009 - 9:20 PM

(unintelligible) …

Even my Brain is slow.

… My chest hurts so bad.  Right here. Right here is where it really hurts. And my breathing is very shallow. You can see I can move my arms a little bit. But they end up flopping around like they do when they’re asleep.

The pain just got very sharp. Right here…

I should have made a lot more of these videos. There’s a lot of times like this. Mostly since the 23^rd of June at Northwestern.  It’s been almost always like this. But I did have a brief period of improvement  from that, a few weeks ago. This is different. As it always is. It’s always worse somehow.

My actual eyeballs feel heavy. And I want to move my arms and body… I can move a little bit, but…

I don’t understand this. As you can see, I’m pretty calm about it. This is about as hyper as I get.  It’s all – clearly this is happening.

You just get kinda numb, you know? You don’t dwell on it, you just go with it. So I’m coping with it, not causing it. That just might be the hardest part of this whole thing. Doctors being lazy or arrogant.  Just throwing everything you tell them is wrong into the big abyss of “Neuropathy” – so they can go onto their next patient and not be challenged. They don’t like to be challenged.

Not that I ever really call the Dr much. I did for the heart thing, and the upper airway obstruction that I didn’t just develop.  It just took me almost 8 weeks to get a Dr to believe and listen for themselves.

I’ll make another one…(video)

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I still have a long way to go. I require a lot of care and have a Nurse that comes 3 times per week to help me.  But if you take the time to enjoy what you DO have, you will find a way to live through it all. In my case, my Son has been my reason. Looking at these videos is hard for me, I can't believe I lived through it (so far). There is strength in momentum. Get some. One giant lesson I've learned through this is that it's exponentially more important to feel strong than it is to be strong. It is up to you to find your strength in the love around you. Hold on with both hands and never let go.

Love and peace to you all,
Michael

... he just kept singing...

Site moved to www.ThenCameMichael.com          

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. 

the strength of a father in a time of crisis- by Nicole

       Site moved to www.ThenCameMichael.com 


 When I first became pregnant with our son, I'm pretty sure Michael blew a head gasket. Not for reasons like, he didn't feel stable enough or that he didn't think that I was the one with whom he'd love to have a family. But because of deep-rooted emotions, he was certain that he simply did not know how to be a good father. And yet, he refused to fail his son. I remember him going out of his way to keep me comfortable and at the same time being completely awkward when it came to Aedan. Every time his little baby cried in his arms or preferred me over him, I saw a look that I had never seen before in Michael. For a man that always succeeded, this devastated him and brought back all the painful memories that shook him to the core. In a very humbling way, I saw his weakness, open wounds, and fear.

          Sixteen months into his son's life- just as Aedan began really walking and interacting- Michael was given his first dose of Levaquin coupled with a steroid pack. A routine sleep apnea surgery followed soon after and then the prescription for Avelox. October 6, 2008 is the day none of us will forget. On that day, he started feeling numbness and tingling in his legs. For a new father who was finally feeling more at ease, this ripped the ground right out from underneath him.

          Still, I have never seen a man so determined to raise his son with such joy, peace and safety. Aedan never came with us to the emergency rooms. He didn't see the tears or feel the full impact of the stress. In those darkest moments when all Michael could do was sit in an armchair barely able to speak or move his arms, Michael went so far as to "hide out" in the back room because he was so adamant about not having Aedan see his daddy like that. 

          It was like a scene out of the movie "Life Is Beautiful". Out of all the darkness that was around us, we surrounded that boy with a stable, loving, and playful house. Now 4yrs old, Aedan remembers the wheelchair. We would give him rides around the house on daddy's lap. He knows about medicines and how daddy needs to rest sometimes. More importantly, he knows daddy has the best tickles, always knows the coolest music, and is brave and strong.

  
Michael always says he is giving his son front row seats to watch a good man live his life.

When it comes to being a father, I am proud to know that Aedan learns about bravery and strength and perseverance from this man who transcends suffering to live for something that pain cannot touch or take away- the loving eyes of his son

reflections from the darkness

Site moved to www.ThenCameMichael.com 

I am not Michael. I am not strong enough to be Michael. However, growing up in a family of 5 kids you learn to be loud...and observant. So I will be his voice when he is too weak to speak...or write. They say when you have found your soulmate you are of one mind. So I will let him talk through me. 

My name is Nicole Frantilla. I have been with Michael for over 10 years. We have a beautiful 4yr old son and a 65lb yellow Labrador lap dog.

And Michael... Michael suffers almost every adverse reaction from Levaquin and Avelox (toxic antibiotics given to him for a cough) listed on the black box warning. This has been going on for almost 3 years now. As far as we know, there is no recovery.

But Michael... Michael proves everyday how much suffering a body can take and yet his spirit makes him an unstoppable force of nature.

He is my inspiration and the reason why on the 1000th day from the start of this poisoning we promised each other to reach out to others and tell our story. After years of doctors, emergency rooms, pills, and cross-country trips we are able to speak out of hindsight about a story of courage, hypocrisy, tenacity, and pain.

This is a story I hope our son reads when he is older and is finally able to understand why daddy couldn't play or be with him all those times. But that when he did, it lifted his soul so much he fought even harder and loved even deeper.