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

          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

Cliff notes to a Life

Hello.

I am very ill and am fighting for my life. On 06 October 2008, I woke up unable to feel my legs. That was the best day I’ve had since. It went downhill. Fast.
As I write this, I am in brutal and unrelenting pain. In every single area of my body. Even my face – my eyeballs too. I have been in intense pain every single second since it began. Ranging from a 5/10 to 10/10, usually closer to the latter – every second. I am largely unable to do anything physically as I am too weak. Mentally, writing this is taking extraordinary effort (read below).

Our family’s home was lost to foreclosure. Car was repossessed. Were homeless and separated at one point. COBRA insurance expired. Cannot afford the medications I need for even minimal function, the Dr visits, the Hyperbaric Oxygen treatments I require, etc etc.

BUT… I fight. With the heart of a giant, I fought for my life. Every second of these last 1,021 days. It nearly killed me, but I refuse.  God himself will have to come get me. I will never, ever leave my Son.  Those of you who’ve known me for decades understand my conviction and understand the fury with which I’d fight for him. Aedan gives me the strength and courage I needed to save my own life, and the will to fight to get out of bed each day.

I am proud of the Man I have shown to be. And despite it all, I live a beautiful life.
________________________________________________________________________________________________________________________

I was prescribed the most prescribed Anti-Biotic, Levaquin, for a COUGH. Soon, a Nuclear Bomb went off in my body. Three days after I lost sensation in my legs, I went to the ER. Soon transferred to Rush University Medical Center for ‘elevated care’. In the Neurology wing’s ICU, I was told it was form of Peripheral Nerve Damage known as Guillian  Barre. That I would soon be paralyzed from the neck down & on life support. Days later, a new Dr. came in and discharged me saying I was having a panic attack. Really? I can hardly use my legs, numb/tingly…
I soon found myself outside the Medical System as no Dr I saw since couldn’t figure it out. 8 mos into it, I went to Mayo Clinic in Rochester. They found the Autonomic Nervous System damage right away. They all but refused to believe all the other issues I was listing were possibly happening. Even after their Psychologists examined me and told them it wasn’t in my head.
I fought, with a severely crippled mind to be heard, but was without Medical help entirely through some very scary and nearly fatal nights. But I never gave up.  It was only 6 weeks ago that the worst of it all was finally  diagnosed. This was a big deal to me to finally be able establish what had happened to me. I can now understand enough to be able to relay some of what’s happening to me.

Cliff Notes of what has happened to me:

Levaquin punctured a hole in my blood brain barrier (noted on 09 Oct 2008) and caused systemic damage. Including but not at all a complete list:
·         Brain Damage
·         Mitochondrial Damage (Toxic) – Mitochondria is  responsible for providing energy to every cell in your body. When damaged, it’s like you’re a battery that discharges too fast and/or does not charge. Your Brain has by far the largest demand on Mitochondria
·         Autonomic Nervous System damage – This is the ‘Traffic Cop’ of your body. It can manifest symptoms and/or life threatening disfunctions literally anywhere in the body.
·         Neuro-Psychological disturbances. De-Personalization and De-Realization. Substantial Cognitive issues.
·         Irregular Heartbeat, palpitations.
·         Muscle wasting (substantial)
·         Musculoskeletal damage, connective tissue damage
·         Visual Disturbances including Double and Blurry vision. Each eye blurs independent of each other and change constantly, at different rates.
·         Skin damage.
·         Circulation issues
·         Vast Neuro-Muscular issues

I have issues system wide. Including my GI, Cardiac/Circulatory, Renal, Dermatologic, Visual, Hearing, Respiratory, even Endocrine systems. All of these issues and many many more are all happening at the same time. Sadly, this is NOT as rare as we are led to believe.

I am easily confused and disoriented. I am extremely forgetful, in fact a couple days ago I lost count several times when trying to count out 4 cups of water. I am mostly unable to prepare meals for myself. I absolutely cannot multi-task at all, and can rarely complete a single task. Still to this day, the world is happening way too fast for me to process. I have difficulty thinking of what words to use and often slur my words when I do.
Although I get rare and short lived bits of strength and energy, physically I am very weak. I rarely am strong enough to leave the house with my family and have missed a great deal of Aedan’s first few years. I have watched my Son play and experience the world through pictures.  Without energy at the cellular level and the great loss of muscle, I am fragile at times. It goes far beyond tired, unlike anything any of us have experienced before.  At times I have been too weak to raise the fork to my mouth.

It was only until recently that doctors were able to conclude damage to my actual mitochondria- the parts of all cells that makes all energy for life Without them cells  die. My Mitochondrial DNA (MtDNA) is believed to have been damaged as well. MY DNA.

When the Mitochondria dysfunction becomes bad enough, besides physical weakness, one of the things that happen is my brain functions slow tremendously and I am quite often in what seems like a catatonic state. I have wanted so desperately to be able to communicate, reach out for help, talk to those who care for me. For almost 3 years. But I have been unable to even answer the phone most of the time.  Writing this has taken me many months and I intended to post something (anything) on my 1,000th  day, 3 July 2011.  I struggle for words and communication is extremely difficult for me.

This is a very condensed high level summary of events and how I am as of this writing. I have been far worse. The actual details and chain of events will leave you disgusted with the ‘Medical’ system in this country.

I have been through unfathomable torture, and to this day am severely disabled and in unrelenting, excruciating pain literally every single second.  BUT…

If I didn’t tell you, you wouldn’t know by looking at me. When I can stand, I stand tall and I stand proud. I don’t let the pain show, I don’t want Aedan to see me that way.  I have learned to handle pain, not letting it steal even one precious second I get. In the process learned true peace. I am truly grateful for every second of life I get, no matter how hard it is to use my body or mind. I soak up each moment I get with Aedan and truly live each one. I appreciate the beauty around me. The sounds of the birds, the sky. The smell of the air, the concert that the rustling leaves play when the wind blows.  Despite it all, I live a beautiful life.

Please, do not feel sorry for me. I don’t. Amazingly, I have not once felt sorry for myself. Not for a single second of the 86,400,000 seconds as of my 1000 day. I am a demonstration of what the human spirit is capable of.  My intention in writing is to finally be able to try my best  to simply communicate what has happened to me to any and all who care about me. I have fought this alone, no Doctor I could call. No ER that could help. I so badly wanted to reach out for the help I so desperately still need. I just simply could not until now.

I hope to be able to write more soon. But until then, know that I will never, ever give up.

Love and Peace to you all. Michael

reflections from the darkness


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.