This picture hits me hard. I think of myself as Superman – I feel 10ft tall and bullet-proof when I walk upright now, or when I do my own IVs… or when I read a few pages of a book to my Son. Seeing myself like this hurts. Its hard to look at this and feel strong. I have been filled with so much shame as a Man over what’s happened.

In May, I was in Washington DC to speak about what happened to me. There was about 50 of us. When I or any of the others showed this picture to the Senators, the reaction was something I didn’t expect. They saw what this drug has done to my body and they were heavily affected by this picture. I guess I either haven’t yet faced it, or perhaps its just that I’ve spent so many years noe convincing myself I’m unbreakable. While that’s served m ell, I also need to face the truth. MY truth.

I am sharing this here for several reasons. None the least of which is that I must stand in my truth. Levaquin has nearly destroyed me and unless I/we have the courage to share our stories, this will never stop.

If you’re reading this, chances are you have been poisoned by these drugs too. This is almost 6 years after my poisoning began. I have fought so hard and lived through unphathomable torture and it shows.

It is my hope that you see this and instead of sad you get inspired. This does NOT have to be a death sentence, and together we’ll get through this.

I have much more to share. I still don’t have internet access so some of the videos and writings will have to wait. But until then I can and will be sharing quite a bit. Check back soon.

Also, I have offered this picture up to the floxies on facebook to use and I extend the same offer to you. Its been used to get Dr’s to take us seriously and from what I’ve heard, its been very useful for others in getting Dr’s attention. If you feel showing this at your next appointment will help get attention, you too are welcome to use it. Leave it as is with my name on it is all I ask.

Fight on my friends.

I haven’t had internet access since January so I’ve been posting to my Facebook account instead. I’m going to try a different posting method, let’s see if this works.

Posted to my Facebook account 23 May 2014…

Lessons for my Son:

Lately, he’s been asking me a lot of questions about my body and mind, and about what’s happened to me. Amazingly, he seems more interested in how it makes me feel inside. This morning is one of those mornings.

We talk about my eyes and brain, for instance. He knows Daddy can’t read chapter books like he and Mama can. He has noticed that I can only read short books, and books with few words and big letters. He notices how Daddy gets weak or sometimes can’t do what I was able to do the day before or even hours before. He asks if I get frustrated, he’s asked if it makes me sad that I can’t do a lot of the things I used to or do the things I want to, when I want.

I want to be open and honest with my Son. I think that’s one of the most important things I can do as a Man – he will know the real me. Not give him an unrealistic image of what a Man is and therefore not have unrealistic expectations of himself. If I have a hard time, I let him know. But I also show him what it is like to never ever give up, and to try my hardest. Every time, every day. Most important I want to show him how to hold his head high through it all.

But… I then explain how hard I try and even though yes, I do get sad sometimes for things I can no longer do, I cannot let that bother me. When those thoughts come, I must let them go just as quickly.

“Why Dad?”

“Because Mijo, if I spent my energy on emotions that do not serve me, I will have already failed.”

I remind him of the earlier days when I couldn’t walk or move. Days when I couldn’t pick him up or even tickle him. And as for reading, I remind him that there was a time a few short years ago when I could only read him books meant for infants.

“Point is Mijo, I’ve come a long way. And sure, its frustrating to Daddy when I have to stop reading the book before we finish. Wouldn’t you feel sad I you couldn’t read your little boy a book?”

“Yea dad, that’d make me feel sad for sure.”

“But Mijo, what if instead you think of how far you’ve come? Things you could do now that you couldn’t before?”

“Id feel good Dad.”

“Exactly. And unless I continue to try to do things that I cannot do, or try things that are ‘too hard’, Id never get better. Always buddy, always try. Even if you’re sure you can’t. Try, but start with the belief that you can. That is where most fail. Whether you think you can, or think you cannot: You’re always right.”

This is the conversation we had in bed this morning.

My little boy broke his collarbone on Monday. Watching him go through this has been painful as a Father, but heartwarming beyond measure as a Human Being. I see him try to do things he’s sure he cannot. Like removing clothes to go to the bathroom himsef now, or drawing with one hand, or getting on/off the couch. He’s finding ways to work with what he has, and he’s not sad about his pain and inabilities. Instead, my Son is proud of himself each time he ‘makes it work’.

I DID IT DAD!!!

The lack of tears is not what makes you strong my son. It is your heart, your inner fight. And you make me proud to be your Father. I love you Mijo.

Hopefully there’s something in here for you grown-ups…

This morning, I woke at about 4:30am and the pain made it so I couldn’t stay in bed, much less sleep. This is typical and is on top of all the other difficulties.I cope well, but it gets old sometimes and there are times when it takes every ‘trick’ know to get myself into a better state. This was one of those mornings.

I was able to get myself to accept the day ahead and my eyes began to focus a bit – which usually takes an hour or so after I wake up. Rock on I thought.

But then something happened, I found myself in a situation that I didn’t understand. Which can happen easily, no matter how easy an issue or situation might be. It is a requirement that my world be slow, predictable, straight forward and simple. I tried so hard to understand and know what to say or do, but I just couldn’t follow what was happening. I used too much energy.

My available (cellular) energy is always low, but un-predictable from day to day. And its quite finite. Once I use what I was given that day, that’s it. It quickly becomes a physical and mental nightmare beyond words. So today I exhausted my available energy and I hit the wall. Hard. And as the day goes on, this will only get worse.

And it was barely 7am.

Today is one of the (thankfully) rare days where I couldn’t immediately squash my frustration over my situation. I live a life that could easily be overwhelmingly frustrating if I let it. I learned to deal with it very well, but its not a perfect science just yet.

I tried every ‘trick’ I know to help change my state. I tried the cologone trick – now I smell like I should be rocking a Mullett. I tried sitting in my quiet place, listening to calming music, etc. I even took an Epsom Salt bath with some essential oils. Didn’t help, I just couldn’t shake it off.

I say all this to add context to todays message. I don’t like to bitch, but I have to get some of this out so y’all understand a little.

My last line of defense isn’t so much a ‘trick’. But it works every time.

Some days just suck and are going to suck. Lets face it. But I feel its up to me to decde just how much I will let the aforementioned ‘suckage’ take away from my life. Today is one of those days where I just have to hang on tight to what and who I love and just know this too shall pass. Just hang on and know that while I won’t feel much different physically and my mental/visual abilities won’t improve too much in the near term, I will feel better inside. Maybe not now, or in an hour even. But I will. And sometimes, that is all you have to hang onto.

I refuse to let it ruin whatever is left of my day. I decided that I don’t give a rats ass how bad it is today, because I must live above it. If I am to live, I will not let this monster take anything more. Its taken my body, my eyes, my mind… it has made me miss out on so much of my life – and my Son’s life.

Over these last 5.5 years, I have learned to just let go. Grab onto your life with both hands and no matter how much you think it sucks, live it. Live it and refuse to let whatever troubles you steal any of your quality of life. It doesn’t have to, it only steals what we make available.

This all made more sense in my head and I’m not warpping this up well. So I hope you can find the value in this.

Let go and live for today. This too shall pass.

With love for you all.

Michael

Someone just reminded me of this post and I thought I should share it here. At year 6, I still struggle. But I fight back, hard. It is my hope that you can take something away from this and find your own ‘fight’. After all, we’ll never get these moments back. So get up and make the best of it. My life has been hijacked, make no mistake. But, its up to you to decide just how much of your life can be stolen… Today, try to find a piece of your life to take back. Even if its small moments like these, which is often all I have. But I’m grateful none-the-less.

Much love for you all…

Facebook: 10 June 2014 – 8:05am

Shame and the ‘Make Sense!’ game:

I’ve spoke on how I hid from my family. I tried my hardest to look as normal as I could, I tried my hardest to hide as much if the intense pain as I could. I tried hard not to fail in front of my Son and tried every day to keep the darkness of what’s happened from overshadowing my family’s life. Usually that meant hiding so I could take it all on myself. Nearly every system in my body has issues, my body wasn’t the only thing affected. I had far more shame over my mental challenges than any other symptom/issue.

Perceptually, the world happens too fast. I cannot process things/people/voices/conversations like I once did. Although now I’m learning to work round it better and have certainly experienced at least some recovery on this as well. I wasn’t able to think/post like this a year ago, although real-time conversations are still very challenging for me.

Often my Son would ask me questions. Simple questions like any other kid would. I was entirey unable to respond in a timely manner (if at all) and I have a very hard time getting my brain to think of the things I want it to, when I want it to – and certainly can’t always switch towhat someone else wants me to think about.

I can usually picture in my head what I want to say, but I can’t describe or say it. It has been a source of incredible frustration and I hope to describe my mental challenges in better detail later. I have experienced some improvements lately, but it can be very disheartening for me to say the least.

Recently I have been forced to be more open with my Son. I kept this from him entirely until very recently. But he needs to understand somewhat so he never thinks its him or his fault if I get frustrated with my brain. He knows I can’t always say/think what I want or do simple tasks at times. So we came up with a game.

Introducing… the ‘Make Sense Game’!!

This morning is a great example.

Usually asking me a question (doesn’t matter what or how simple), esp if its not something I’m already thinking about, causes my brain to enter into that electrical mist that’s unpleasant (to say the least) and it becomes incredibly frustrating. But my Son is so sweet and gentle, he patiently waits as I try my damndest to get thru the electrical storm to answer him. Usually, my answers don’t make sense to anyone, let alone a child.

This morning he asked what dryer lint is. I picture it in my head and also have a pseudo-picture of what my answer is. This morning I was able to respond in a way that actually made sense and I got a point! I’m at 1 now…

We started this game a few weeks ago and as frustrating as it is to talk sometimes, I think it helps. I still don’t like failing in front of my Son, and I suspect I never will. But I am so thankful to have a Son who is so gentle and understanding. We don’t play this game to make light or make fun of me or my inabilities in any way. Instead its a light hearted bit of fun that actually encourages me to try harder every day, and makes me feel less ‘defective’ and thereby a tinge less shameful about my brain too I suppose.

Last week was a better week, one day my high score was 10.5 – there was a time where I made only some sense so I got a half point. But I find now that I’m distracted by my desire to get a ‘point’ and to try and beat 10.5

I am somewhat less frustrated by the electrical storms and I try without fear of failing or shame. Or at least not as much. I just want to beat my high score of 10.5

I know that some of you reading were hit by this drug class too and likely can identify with the cognitive issues caused by this poison. Please, lose the shame. I’m still working on it myself, every day. I have the hardest time accepting the mental challenges I now have. It makes me feel defective and useless as a Man. But I’m working on it, and every day I try to do something that makes me feel strong.

I know this might only make sense to me (and I don’t earn a point for that). But I hope that by being more open, honest and transparent in my struggles and fears I can inspire thought and change in you as well.

Your Brother in Fight,

Michael