As we all have guessed, Michael doesn’t get out much. Yet, it is really starting to amaze me how, when he does go out, he starts talking to random strangers about what has happened to him and they either know someone or are directly affected by this same family of drugs. For those of you reading this who know Michael personally, you know that with his charisma- something which I have always been a bit jealous of- he instantly disarms, relates to, and then becomes insta-friends with complete strangers. Lately, his world revolves around his condition. This only makes him a laser pointed at a target. And now, when he talks, he finds that people being hurt by this drug are coming out of the woodwork.

Most recently, Michael- who is in Florida for an office visit with one of the best neurologists in the country, Dr. David Perlmutter- started talking to a couple a few rooms away from where he was staying in his hotel. As they started to learn more, there was an eerie acknowledging of all the medical details. Usually terms like neuropathy have to be defined. The couple, though, recognized many of Michael’s symptoms, because the young lady had been experiencing a lot of the same ones for 5 years. Though not nearly as severe, she experienced autonomic nervous system damage, fatigue, cognitive issues, and neuropathic pain. When Michael asked, “Did you take an antibiotic before this started happening?”, she was surprised, for they had not pieced together that the Cipro she had taken to treat her bronchitis was what caused her 5 yrs of adverse reactions. This couple was from Indiana. They met in Florida. Michael then gave them as many websites as he could to educate them for their new battle, which now has a face. I do not believe this meeting was a coincidence.

This next story I found quite moving when I first heard it and am only now ready to share it.

Michael’s father, who does online gaming told Michael’s story to a man he plays with over the computer. This man happened to live in Louisiana. Well, remember in April 2010, a little disaster known as the Deepwater Horizon oil spill happened in the Gulf of Mexico. This man was one of many fishermen who helped “clean up” those waters. Many of them reported respiratory distress due to the toxic fumes coming from the waters they were working long hours in. When this man heard Michael’s story, something struck a chord in him. He, as well as a large group of other fishermen, were prsecribed fluoroquinolones and steroids to treat their “respiratory distress”. He mentioned to Michael’s father how since then he has not felt quite the same- extremely tired, like his brain can’t work right…Here comes the moving part…This fisherman along with others who were given the same “treatment” stormed the doctor’s office and demanded they be put on something different because of what they knew this drug did to Michael. Can you imagine- you are a fisherman whose home waters have been destroyed because of big oil company negligence. You are forced to pick up this job cleaning the waters because it’s not like you can fish now. And then you are given this toxic drug that has the potential to ruin your life. What a way to kick a man when he’s down. In most sports that is considered illegal.

There have been many other people since then that have recognized parts of Michael’s story as something happening to a loved one. Whenever Michael shares what happened to him- which is with anyone he meets- there is a connection. The landscaping man’s son, the cable guy’s uncle- anyone! 

When I hear him speak to people, what I see is someone who is finally becoming ready to share his story with the World in the hopes to save lives and affect change. And I think to myself, The drug companies don’t know who they messed with. Because even being in the condition that he is in everyday, when a fire is lit under this man’s a** he is powerful beyond measure.

Before this happened, I wouldn’t say I was very progressive or liberal about my political and social opinions. In fact, I’d call myself blissfully naive. I didn’t know the influence of pharmaceutical companies. I trusted anything a doctor told me. I believed in a system that I now see does not look after me.

“…at my worst when I was stuck in that chair. I couldn’t move. I couldn’t talk. I could barely keep my head up and all I would do was stare at the patterns in the carpet just to make sure I was still in there and alert. I remembered where each stain was. I was scared to sleep. I was afraid I wouldn’t wake up if I did….”

As Michael talks about that period of months that happened less than a year after his first symptoms of poisoning began, you can hear him well up with tears. Remembering the period of months that he could barely walk- when even standing in one place was unreliable, and at the worst, when even talking seemed to take too much from his body- is an unbearable road to go down.

In those days, the quiet room at the back of our house was his prison. He isolated himself to protect his family from his constant suffering. He refused to fill the house with that kind of energy, and mustered up the biggest smile he could anytime we went back there to visit him. It sounds completely crazy. Why would a person who needed constant care be adament about being left alone for hours at a time? To live hearing distant voices laughing and playing and yet being so far removed and unable to participate in your own life….Is that a life? It was a prison. Truly his body was his prison and the quiet room contained it.

Michael had to relearn how to walk. He does so now, but under extreme concentration and only for short distances. Indeed, some of his physical abilities came back. He’s not using a wheelchair anymore and can stand erect without it appearing awkward.



   But his mental impairment is very present. Many times thoughout the day Michael must escape to a quiet area of the house because his brain has had too much. Even trying to field the many questions that a curious 4yr old shoots at him can be too overwhelming. Sometimes he goes out to the garage. Where we live now, he has a nicer den area on the other side of the house where he can lie down. Anywhere we go, he has to have this escape route so he can quiet his mind down again and rest. Unfortunately, this quiet room is not impenatrable to our son. When he wants to find daddy he knows exactly where to look. But usually, the quiet room is his sanctuary.

On a much deeper level though, his “quiet room” can be anywhere. Michael stands outside the garage a lot, taking in the sunshine, listening to the birds, staring at the mountains. He becomes so in tune with his environment that he can tell which trees the wind is blowing through by the difference in sound. Listening to him talk is like listening to someone who has practiced meditation all their life. Even more profound, Michael deals with his pain by “becoming friends” with it. Sometimes, lying silently he becomes very aware of where pain lives and moves throughout his body. He can pinpoint one specific type and track it, and breathe through it, and live in it. Not many people I know can say that when they feel pain, they want to get to know it. Masking pain or removing it is more the norm. It amazes me how, through this illness, Michael has found this place within himself that is peaceful, and silent, and strong. To be able to access that quiet room within, is the greatest and healthiest gift he has found for himself. 

          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.”                   

                                                      

          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

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.