Gratitude and the Human Component

Several people have asked that I re-post this here for all to see. The world needs to be filled with more moments of humanity like this, just two humans coming together as strangers to live a moment of hope. 

I love you all.

Facebook 30 May 2014

Gratitude and the Human component:

Yesterday afternoon, an I lived an important moment. Since the time I spent bedridden, I had dreamt of the moment when I would be able to reach out to someone like me, one on one, and give them the gift of words, strength and gentle direction that I myself so desperately needed early on. I dreamt that one day, Id make a difference and touch someones life.

Yesterday, a very brave soul came to see me. She was scared and confused, just like I once was. She bravely sat with me while I gave myself an IV and we also went over my extensive supplement routine. She asked a lot of direct, quality questions and thankfully I was able to field those and provide direct answers.

She arrived a stranger at a strangers house. We spent a couple of hours together and she left as a friend. And although I can’t speak to how I’ve helped her, I can say a dream that I’ve held onto so dearly for many years finally came to be. I am grateful for the opportunity to share knowledge, some very hard lessons I’ve learned and some wisdom that I have most certainly earned.

This is the first of what I hope will be many opportunities to connect with another Human Being on a deeply truthful, meaningful and fundamental level. We came together yesterday and were able to just be Human. And I cannot be more thankful for the courage she showed and for her level-headed approach to hearing a complete stranger lay out some hard earned wisdom and technical knowledge.

I am weak and mentally exhausted. But I spent my energy wisely yesterday and it was absolutely worth it to me to feel like I’ve made a difference. And Id like to thank Lori​ for her courage, gentle demeanor despite substantial hardship, and for giving me an opportunity to make some of the suffering worthwhile.

I’m not wording this as well as I would like, and I’m not sure I have a clear point today. I’m really worn and slow today. I just wanted to share this moment in hopes you can take something away from this.

No matter how little you have, or how weak you are, never ever discount your ability to touch someones life. What if this world were filled with moments like we shared yesterday?

Discuss.

Michael Kaferly IV one on one

Live long enough to testify before the FDA to ensure that NO ONE ELSE will end up like me for a cough ever again… Check

Michael Kaferly in front of the FDA

Michael Kaferly set to testify at the FDA HQ in Silver Spring MD on November 5, 2015 – preparing to unleash 2,585 days and nights of torture.

On November 5, 2015 the FDA’s Antimicrobial Drugs Advisory Committee (formerly known as the Anti-Infective Drugs Advisory Committee) and Drug Safety and Risk Management Advisory Committee held a special hearing on the safety of Fluoroquinolones, especially when used as a first line of defense. This hearing lasted all day and included a team of Dr’s, Scientists and Execs from Bayer, J&J and Pfizer who were on hand to give hours of testimony that their drugs are safe.

The intent of the committee was to revisit the issue to determine if the benefits really do outweigh the risks when prescribing for sinus issues, bronchitis, UTI’s, colds/sniffles/coughs.

I heard about this hearing about 3 weeks in advance, giving me time to rest and save energy to attempt to make the trek to the FDA HQ in Silver Spring MD. I should have been having surgery to amputate at least one toe from the damage Levaquin has caused. A few days before I was set to leave I cancelled on going to the FDA. My baseline was far too low and getting lower, I was weak and getting weaker. My foot was in so much pain, as was the rest of my body. On top of my condition, logistically I didn’t think we could do it. The world still happens too fast and while my intellect is in tact, my mind gets slower as my energy drains. Michael Kaferly just before FDA testimony There would be no way I could do this without significant, constant help. I needed a seeing eye human to help care for me and keep me safe and it started to look like there was no way for me to be safe, no way for me to be able to stop the world once I “hit the wall”. But this was far too important to miss, no matter the cost. My mother accompanied me and pushed the wheelchair, made sure I ate, made sure I knew where I was supposed to be and what was happening.

I was already becoming weak from the trek to the FDA and beginning to have tremors, my energy was draining so fast – and I’m sure the stress of knowing the people who did this to me were in that room had a huge impact. Stress and anger immediately make my symptoms worse in a way that I would only describe as a violent reaction in my body. I tried to keep myself as calm and grounded as I could, but there’s no doubt that had a huge effect. This is a known issue for severe mitochondrial patients as the body uses so much energy when in a stressful state, and for those like me it is more energy than we have available and an “energy crisis” is triggered.

Between the help from my mother and the help of all of my fellow warriors, I was able to make the trek.

My testimony was a compilation of many “scraps of paper” and recordings. It was an enormous struggle to get words out and arrange them so they made sense. But that day, the universe guided me and allowed them to flow. The complete transcript is found below.

Full Transcript:

Good afternoon. My name is Michael Christian Kaferly. I have no affiliation.

In Sept 2008 I was prescribed Levaquin to clear a chest cold before a minor surgery. There was no testing done to determine if I had a bacterial issue. It was given to me JUST IN CASE. Soon a nuclear bomb detonated inside my body. I quickly went from an intelligent and healthy man who worked out almost daily to being bedridden, unable to understand the world around me and in horrific pain not of this earth. For much of the first 18 months my entire body would become too weak and too heavy to move – not even to use the washroom. At its worst I was so weak I could not hold my head up, chew food or even produce a voice to tell my little boy I loved him.

Our search for help took us coast to coast. Among my list of diagnosis are Autonomic Neuropathy and mitochondrial damage. Testing shows my body has suppressed cell replication, which is the explicit mechanism of action of the drugs that we’re here to discuss today. My full list of diagnosis and symptoms spans across multiple systems and is far too long to list here.

I have fought this monster for 2,585 tortuous days and nights, but I am hardly improved. While I have good and bad days, I am never well and I rarely leave the house. I am like a defective battery that discharges far too quickly and doesn’t recharge correctly. I have a minimal and unpredictable energy supply to fuel my muscles, systems and organs. That means as I tire, my entire body gets progressively weaker and heavier. My vision worsens and I can become confused, frail and weak many symptoms become unimaginably severe including layers of unspeakable pain. Even though I’ve rested for weeks to be here today, this trip is dangerous for me and I will suffer devestating consequences for the energy spent.

Abandoned by the very medical system that did this to me, I have been forced to give myself over 475 IV’s to help manage some of the horrific symptoms Levaquin has caused.

I made videos of my IV process to help other victims – one of which has over 15,000 views. There are many more like me.

Modern medicine offers no cure for my mitochondrial disorder that began as a result of taking Levaquin. It is imperative to manage symptoms to prevent this disorder from progressing, but the only known therapies are not covered by insurance. I can no longer afford the extensive supplementation and IV’s that helped me to fight back. I have been forced to go without and my condition has deteriorated significantly as a result. Until a few weeks ago my family was homeless again. When I get home to my little boy, I face immediate amputation from the damage Levaquin has caused.

In 2008 there was no warning about Autonomic Neuropathy or mitochondrial damage. Just tendon issues. If the FDA protected me and allowed me to make an INFORMED decision, I absolutely would have chosen to keep the cough. The salesmen are here today to tell you their drugs are safe, but you already know this class of drugs CAN cause mitochondrial damage, I came all this way to look each one of you straight in the eyes and tell you that in fact, it DOES.

My little boy was 15 months old when my life was hijacked. Now 8, he has never gotten to know his father as a healthy man. He has been forced to see things no child should ever witness. My life and his childhood have been stolen in the pursuit of profit. I am here today for the hundreds of thousands like me, labeled as crazy who still don’t know what is happening to them. I am here for my son and for his entire generation, to implore the FDA to rethink how these powerful biological weapons that we call “cures” are labeled and monitored. Levaquin has unquestionably cut my life short by decades. There is no sane measure that makes this level of metabolic damage an “acceptable risk” except to those whose sole directive is to sell more pills.

Media outlets were on hand to cover this historic event. Just before I was set to testify, I met with a wonderful reporter named Jacqueline who aired this in Charlotte NC and another version on 10 more stations in 9 states. Below are two of the many stories, there were far too many for me to keep track of.  I will try to add the rest and update the media section as energy allows.

Michael Kaferly testifies before the FDA

Michael Kaferly Testimony_FDA_Media_Coverage 4

I began to hit the wall hard after my testimony and many of my symptoms were becoming violently worse. Luckily my seeing eye human noticed – as I would have been unable to articulate my immediate need – and wheeled me out of the room immediately following my testimony. I desperately wanted to stay to support my fellow warriors, but I had no choice but to eliminate all energy expenditures in attempt to stop the progression of symptoms/issues.

No matter the physical cost, it was clearly worth it.

After a full day of testimony by the Pharmaceutical industry,  the results were a landslide victory for all of humanity. The FDA voted unanimously, deciding that in fact the benefits do not outweigh the risks.

FDA Voting Results
I couldn’t be there for the end, my body forced me to leave immediately after I spoke. The FDA panel read their justification for their votes, below are just a few quotes from the FDA panels. Including the need to officially acknowledge “Fluoroquinolone Associated Disability” as a diagnosis to cover the constellation of strange symptoms that millions suffer.

“Education is important for the physicians”
“Uncertainty about the safety”
“Does not provide sufficient guidance for practitioners”
“Business as usual is not acceptable”
“Misuse has to be addressed immediately”
” FQAD-legitimate warning for this”
“Relying on the labeling alone is too passive”
“We have to act now”
“Need to extend who is at risk”
“Remarkable testimony today”
No first line of defense use
“Black box should be expanded-highlighted-raise alarm”
“Serious safety concerns-a flawed tool-need red flags-BIG red flags”
“The black box does not look serious to me.”
“Thank you to the Press and patients”
“Learned a lot today”

Again, the intent of the committee was to revisit the issue to determine if the benefits really do outweigh the risks when prescribing for sinus issues, bronchitis, UTI’s, colds/sniffles/coughs. They answered NO unanimously. To me, this means that I have lived long enough to fulfill a mission that I’ve had ever since these drugs caused me to be bedridden and unable to communicate. NO ONE will ever be poisoned by these drugs the way I was – for a cough. These drugs will no longer be allowed to be the first line of defense for minor issues. Which was far and away the bulk of the prescriptions . The drug companies lost hundreds of billions of dollars on Thursday, and I am proud to announce to my son and the world that we did it buddy. We did it.

WSJ Friday Nov 6 2015

Wall St. Journal headline, Friday Nov 5th 2015

I returned home safely, but I am in rough shape. This trip took far more from my body than I had available. I am far weaker than I was before I left,  layers of pain are exponentially worse and my baseline is far lower. The infection has spread further, but so far it doesn’t look like it’s gone past my toe – so I got that going for me. But the pain in my foot is so much worse as well, on top of all of the other symptom and pain increases across my body and across systems. I don’t know if I will ever recover to my previous baseline, or if so how long that might take. But this was a victory for every man, woman and child. I haven’t yet had the opportunity to process all thats happened, I’ve been slow the last few days. Right now I am still overwhelmed with gratitude that I was able to use my words for those 3 minutes. I couldn’t make that same speech today, nor on most days. But when it counted, I had words. And nothing can ever take this moment away from me or my son…

Thank you to all of my fellow warriors who testified and for all those who made this moment possible for me, and for all of the innocent and unaware who just dodged a bullet because of our sacrifices. Make no mistake, my hand has already been dealt. I have no dog in this fight; Johnson and Johnson decided my fate for me on Oct 6 2008. Nothing good can come of this for me personally, in fact, nothing but suffering will come for me after this. But I can look my little boy in the eyes and say that day buddy, we made a difference. And I taught my son that sometimes, you just have to take a stand for what’s right – no matter the consequence.

I love you all.

Your Brother in Fight,

/M

Note:

In order to comment on a post, please click the post title. There you will find the comments area for each post.

“Lessons from Dad”, by Aedan: A book of what my son has learned through my journey.

Lessons from Dad – Cover

– A new series for those who feel how I feel –

We live in an unusually happy home. I don’t talk about this much, and I certainly don’t show it much either. I can’t hide my difficulties of course, but I see no point in continually complaining or pointing it out either. I’ve learned to live through shame, pain, fear and even terror with a genuine smile. I’ve learned to truly be grateful for each moment I am given on this ball of gasses and rock we call Earth. Our son isn’t exposed to the sadness or heaviness that one might expect to find given my/our situation. We live (almost) as if this doesn’t exist, we don’t give it the power. We don’t make an issue out of what’s happened to me, it just is – and we let it be. We live without drama and instead live with love and genuine joy as best we can. That’s what makes this even more special to me. I am not sad around him. He made this book not to cheer daddy up but instead out of pure love and joy. He worked hard on it too.

Lately I’ve been having a much harder time coping. Perhaps due in part to my reading years’ worth of my “scraps of paper” that I’ve written tortured and fragmented thoughts on. It’s not an easy thing to face, especially given that after 6 years the fight has only got harder. And lately I’ve been a bit sad when I’ve allowed myself to think of all the moments I’ve missed with my son. I started to feel as if I have lost my fight and that I have failed him. Sometimes I fear I don’t have much to give. I don’t let myself stay in that state long – nothing good can come of spending energy that way. But this is normal I imagine, and I suppose many of you may feel this from time to time. For those parents out there that feel how I feel at times, I start this series for you…

I’ve come to realize I still have so much shame over the things I cannot do. Especially over the mental challenges I now have, that makes me feel defective (if I let it). This is part of the everyday “fight” I speak of. And as a father, I want to give my son so much more. Any father out there can feel my pain here, right?

But I also realize that any energy I spend on emotions that do not serve me is wasted energy. And I literally cannot afford to waste energy. Not only that, but I cannot let my son see Daddy that way. It will teach him the wrong things. I’ve learned to pull myself out of negative states reasonably quickly, you must do the same. I am not here to tell you this doesn’t happen to me, or that somehow I’m super-strong. I’m human too you know. But I fight, and so must you.

I’ve told some of you before that your children will learn from your journey through osmosis. What you show them counts, more than we know. But words are one thing… When Aedan gave me this book I was overwhelmed and I couldn’t help but cry.

This is a book of what my son has learned by watching how his Daddy fights with his head up. Yes, there’s a lot of things I cannot do – even mentally. Yes, he sees me struggle with simple tasks and he sees me fall down a lot, and that really wears on me.

But this book proves the impact of seeing me get back up. Every time, every day.

Pg 1 and 2

I have thought about this post for a few days, and writing this has taken almost 3 hours. My brain can’t organize thoughts well, and trying to write (or speak) what I want to say is very similar to those lyrics or song title that are on the tip of your tongue driving you mad. It’s frustrating and getting through the electrical mist seems impossible to me most times. But take it from Page 1 of the book…

NEVER GIVE UP.

I’m here to share with you whatever I can in hopes you can take something away from my journey. My brain is slowing and I’m getting more confused, if I don’t post this now I might never. I pray I make sense.

Your Brother in Fight,

/M

Moments missed, moments taken back:

Last night I missed another moment of my boys life. His school had its fall ‘Lantern walk’ where they gather at dusk to sing songs, tell stories and take a symbolic walk with their lanterns. I missed the walk the last two years also, it’s just something I cannot do. If I did, I would likely be weaker for months causing me to be unable to interact with my boy. I can’t let him see me that way. That’s just how it goes. Aedan is very understanding and sweet about it, but I couldn’t help but feel sad and defeated. I am tired of missing life, especially his life. I cannot possibly overstate the heartbreak of having to tell him Daddy can’t go. Again. Last night I was human and let it get to me a little too much.

You see, I have watched my son experience much of his life through pictures. Due to the deficit in cellular energy, I get weak fast and generally cannot leave the house. If I pass my invisible and unpredictable energy threshold (hit the wall), it starts a global cascading effect throughout my muscles and energy-dependent organs; brain, eyes, heart too. I must avoid that state at all costs as it can quickly become an emergency for me. I can’t stand being the reason we’d have to leave immediately once this happens. I recover very slowly and most often I don’t recover at all, my baseline is often permanently lowered.

It’s like Chinese finger-cuffs. The harder I fight, the harder the fight becomes. But that’s just my nature I guess, I fight hard. I have knowingly hurt myself a lot over the years just to steal back a few precious moments, or to show my son I am strong. Of those that know me, I’m sure few are surprised.

I absolutely do not like to talk about this part of my fight, but I’m trying to illustrate a point.

This morning was like most others, I couldn’t sleep through the pain. Aedan crawled into bed with us, but I got up as I didn’t want to keep them awake from the movements of my body that I can’t control. That alone is something that fills me with shame if I let it, but I’ve learned to cope with that over the years. Sort of.

Aedan got up at about 5:30am, just before dawn here in Colorado. I had a shitty night, yes indeed. But I did what you must do. Paint over the ugliness on the canvas with a good memory, a lasting memory you wish to keep instead.

This morning, I watched the sunrise with my boy. We sat there in amazement as the sun painted the world with beautiful purples, then reds, then orange and yellow hues… The world just glowed, the mountains especially beautiful this sunrise. We went to different areas of the house to get different views, excited over the beauty that the gift of this morning gave us. This is the type of morning that brings an overwhelming amount of gratitude and thanks. As if the sun painted the world just for us to see and share together, my son and I. And instead of remembering the pain from last night, I will remember his sweet voice as he told me of all the beauty he saw this morning. Look at the clouds! The foothills! The mountain tops Daddy! Wow…

Many of you have had your lives stolen from you too. And I deliver this divine reminder to you that the world is filled with moments for you to steal back. For those of you who still have your health, I ask you:

When was the last time you enjoyed a sunrise? Or put aside the distractions of your temporary reality to sit with your children and just be – just soaking in the world around you and the otherwise fleeting moments that we all take for granted??

I gotta go, my favorite time of the day is coming. Aedan is about to “Daddy-clamp” me so we can go together to get him dressed. It’s my job to put on one sock while he puts on the other. Perhaps some tickles too.

There had literally been over a thousand nights during the first few years that I certain I wouldn’t live to see tomorrow, but the sun will rise for you every morning y’all.

All you have to do in return is choose your focus wisely and look up. It’s waiting for you.

I love you all.

Your Brother in Fight,
/M

Conversations with My Son: Hobson’s Choice and the Mirror

I am here to here to teach you everything I know before my time on this Earth is to expire. I am to share my knowledge, my wisdom and of course, all of my love. There are so many times that I find you are a mirror, my son. As children, I suppose that’s really what we are most often. Mirroring that which we witness, that which we’re taught, a mirror of what we experience through our parent(s).

Today, you woke up especially early and you found me in the study, struggling to read and write. You found your way to my lap and sat patiently while I tried to complete my thought in writing. As I realized this may have been somewhat boring for you, I offered to put in a movie for you to watch. To my surprise, you gently refused. You turned into my chest and cuddled instead, telling me “you are my favorite movie Dad”. I do my best to hide it, but you noticed I was slower this morning. You also apparently noticed that I kept struggling to beat it this morning.
You interrupted me…

“Dad? Remember when you were in that chair and you couldn’t play with me?”

At first that made me sad on the inside. Naturally. But you continued…

“I could have chosen to be really sad, but instead I’m just grateful to have a father. No matter how sick you are Daddy, many kids don’t have fathers. I am grateful that I have a father like you” and you buried your head into my chest again.

You almost saw me cry today.

Noticing that my face was very close to the screen you asked me why I was trying so hard since my tasks were clearly difficult and almost frustrating to me.

“You need to be nicer to your eyes Dad” you said.

I kept typing; you cuddled further into my chest.

I must do this I said, I can’t let it win. If I did not try so hard, I would never get better. Being sad, or succumbing to my reality of the moment will serve no good purpose and will only feed the ugly. And that will only make the feelings inside worse, you cannot listen to the ugly. You must instead listen to that inner voice that tells you to get up – the one that tells you to fight. Choosing to recognize the good, through all of the evil will carry you far. If I don’t make the choice to fight when things may seem impossible, or if I choose to spend my energy on feelings that do not serve me, I have already lost.

Here comes the mirror: You reminded me of a conversation we had when you were in first grade. Perhaps even Kindergarten.

“It’s Hobson’s Choice Dad”

You caught me by surprise. Sometimes I can’t be sure how much you really absorb. Noticing the look on my face, you continued…

It’s a choice that isn’t really a choice at all

I love you Aedan. More than my simple words can ever possibly express. Today I am again making a choice to live with pride and strength. And I am choosing not to let this beat me today, and I am doing it with gratitude and a smile. I fail to see that there exists another option. Which makes it Hobson’s Choice – or a choice that really isn’t a choice at all as there is no other option. You either live – with purpose and gratitude for what you DO have and live well – or you don’t. You are wise beyond your years my son, and I’m proud to be your father and your guide through this world. Every second of every day.

You are my life, my soul, my son.


HobsonHobson was an interesting fellow. I ask you, what is your choice going to be? Today I challenge you to realize that no matter what you *think* your struggles are at this moment, know that it’s likely that in 5 years you will hardly remember what bothers you today.

Sound off – what is your choice going to be?? I want you to live with purpose today. No matter what your perceived struggles are, know that in time they will fade. But what shall forever remain is how you carried yourself through your struggles. And how many times you got back up

I hope there’s something in here for those who need hope and those who need to be pointed in the direction of light.

Your Brother in Fight,
/M

Conversations with My Son: Death, Dying and the Dream We Call Life

You always ask the best questions while we lay in bed on Boys night. We lay there together in the dark talking about life and all things that come with it. Last night, you asked me a question so deep it gave me pause. You asked:

“Dad? What if when we die, we find out that our life here on Earth was just a dream, and when we die, we’re really just waking up?”

You waited patiently for me to answer you. I took a moment, then I responded:

“I hope you’re right. I believe our goal here on this Earth is to gather all of the wisdom, perspective, empathy, compassion and love that we can. Share what we learn and be kind. When we ‘wake up’, we are to bring with us all the experiences and knowledge for use once we’re fully awake.”

“For what Dad’ you asked.

“I don’t know, I’m still dreaming” I said.

“Dad?” You interrupted… “When will we die? Do we get to pick our favorite age and just be that age forever?”

“You make me smile Mijo. I wish that were true” I said. “But the truth is you never know. You may live to be 100. But we never know when we’re going to die. That’s why its so important to make sure you live your life in a way that you’ll be proud to look back on once you’ve been awakened.”

I asked you if you knew how much Daddy loves you…

Being my son, you saw that as an absolutely ridiculous question. You laughed and said

“No Dad, I have no idea”…

I understood that was a silly question.

“Well,” I said, “you don’t control when you leave this Earth. BUT, you completely control how you live while you’re alive and dreaming. For me, I always want to be sure that while I’m here, you know how much I love you, how proud I am of you and I want you to know every day that you bring me joy beyond words. I could choose to live my days screaming, crying and being miserable. But if I were to ‘wake up’ (die) tomorrow, I would wish I did better. Loved more and shared more of my life with you – and I would wish I spent more time sharing in your life too. We don’t need to waste our time here on anything that we don’t want to bring with us when our time comes.”

I continued…

“Maybe that’s why God doesn’t allow us to choose when we go. Its up to us to gather all the meaningful joy and wisdom this life has to offer. Just as important is how much knowledge, wisdom and love that we leave behind. Not just for the ones we love, but for our fellow ‘dreamers’ too. That is our homework.”

You rolled over for some cuddles and just before you fell asleep on me, you said

“I love you Dada, you get 8 points for that.”  (See the “Shame and the Make Sense Game“)

You are wise beyond your years. Carry that responsibility proudly my son…


 

These are our actual conversations, as they happen. He asks me to define the words he doesn’t yet know, and he truly listens. Its clear that he processes it all and thinks deeply. We have great discussions, especially right before he falls asleep. I write these for him, I write a lot for him just in case I “wake up”.

But also for me. It helps remind me of moments in life not filled with so much ugliness. We all should spend more energy on the things that matter, there’s not many things in this life that truly do matter.

Perhaps there’s something here for us all.

I love you all.

Don’t blink – you don’t want to “wake up” only to find you could have done a better job while you were alive.

Your Brother in Fight,

/M