Desperation and the Shirt, God and the Nightlight…

 

I made this nightlight for my son 2 years ago or so. It was intensely difficult and took me a very long time – a project that would only have taken an hour or two in my old life. But I did it.

Aedan turns this on at night when he is scared, he says it let’s him know Daddy is with him. And with it he feels safe.

I literally don’t have much energy to spare, physically or mentally. This fight against MetLife has really taken a toll and worn me down. No matter how hard I fight, without my disability payments I simply cannot survive this much longer. I think that realization really rocked me. I don’t allow myself to get or feel defeated this completely. In 6 years, this is the second time I had been that state. The first was a year ago – but for the same reasons. I’m simply not getting the help I need. I haven’t cried, not over the bad moments anyway. Nor have I allowed myself to get knocked down so bad that it breaks me or my will. That would only serve to cause a cascading effect.

But there are some things that are legitimately far out of my control. And being unable to afford medical attention, my treatment(s), medical supplies, utilities, food… it’s been almost 3 years now since my benefits have been paid to us.

I had a conversation with God. He reminded me that I wasn’t wearing my shirt. He told me to put it back on.

But that just made me feel worse at first. I didn’t need more fight, I have more than enough fight in me to share. That’s not the issue. I’m in an unfair fight and am powerless against this portion of my nightmare.

I’m not scared anymore – I’ve stared death in the face many times. And each time I gave it the finger – and got back up. But I guess I needed to feel safe.

I have alone time now, so I went into Aedans room and crawled into his bed. I turned the lights out and turned on this nightlight that I made for him. Usually when I see it on the wall, I feel strong. It reminds me of when I made it, what I was fighting against to get my hands/eyes/brain to work and reminds me I did it. Despite the struggles. Even if it did take me a week to do an hour or so of work, I was so proud that I did it.

Today, I sat in dark solitude. I turned this light on and I allowed myself to feel a little vulnerable for a moment, in terms of the fight I’ve been in for 6 years. And then it came.

I found myself sniffing his ‘blankie’ and staring at this light. The love and protective energy I built into this light rained down over me. And I felt what I imagine he does when looking at it. And it changed me.

I found myself standing tall, just like I did when I built this light. I found my ability to at least FEEL strong. And this light reminded me that I MUST survive this.

He doesn’t need a nightlight reminding him of his father. He needs me to be his father, and I can never give up.

So far I am still losing my battle. I am becoming weaker and weaker – my best days fewer and farther between and each best day is never as good as the last. My high water mark keeps getting lower and lower and my body continues to erode.

But…

I’m alive. And as long as I’m alive, I can tell my family I love them. An ability I had not always had – there was a time I was too weak to even speak. I can smell his head now, I can hear his sweet voice say ‘I love you Dada’. I can see his eyes and feel his hands while he studies my face as we lay in bed at night. His hands reading my face like braille.

I don’t have much, but I still can have these moments. And as a dear friend just pointed out, he needs me. Even if I am wasting away.

This light has magic powers – it replaces hopelessness with hope. Defeat with strength. Fear with love. Its rays shine strength and will forever continue to remind me of who I am.

He feels safe during his nightmares because Daddy is always there, even if only through a light. So by the same measure, I too am made stronger by the man who made this light.

I love you all, and thank you for standing by me while I take a knee here.

I won’t let my Son down. I just need a miracle.

Your Brother in Fight,

Michael

Conversations with My Son: Love…

“Dada?”
“Yes?”

“If we didn’t have Love in this World, would it (the world) still exist?”

“Wow, good question Buddy…”

Aedan saw a picture of he and I that I posted on FB to help drive home a point to a dear friend in desperate need. What an amazing and eerily timely question.

“C’mere Boy. Let me share something with you that might answer your question…”

He sat on the “best seat in the house” – my lap for those who don’t know. I took a moment and I answered:

“Love is the “Why” of life. Love is something so amazing that I don’t know that it could ever be truly explained. It gives you the power you do things that you’re sure you cannot, and Love is what picks you up when you have fallen and cannot stand on your own.”

“What does the picture say dada?”

My Why

“It says ‘He who has a WHY to live can bear almost any HOW 

“What does that mean Dada?”

“You know about that ‘stupid pill’ and how Daddy gets weak right? You’ve asked how I can get through the sadness because of all I cannot do. You’ve asked how come I don’t cry and you’ve asked how I have so much hope…”

I continued:

“What this means Mijo, is that no matter how hard, painful or even impossible some things in your life may seem – that’s the ‘how‘ part – If you have a ‘why‘, and my love for you is my ‘why‘, then I don’t care what each day brings for me to fight. I have you, and the power of my love for you is soooo much greater than even the ugliest of Evil forces.”

He took a second to pause and reflect. He said:

“I love you Dada… you get 6 points for that”

6 Points?!? I’ve never got more than 2 points for anything I’ve tried to explain, he must hav really gotten the message. (See “Shame and the Make Sense game” )

“So what your saying Dad is that so long as you have love in your heart, you can do anything?”

“Precisely” I said. “So to answer your question, no. The world as we know it could not exist without Love. Love for your family, fellow man, love for the critters, leaves, the sky and Sun…”

I finished by saying

“Remember this forever, never let the ugly thoughts, your pain or your fear cause you to lose the tight grip you keep on the love you still have. Then you too can bear any ‘how‘ “

Once you lose that grip, it’s all over. There exists nothing.

I don’t think this made sense. I am wiped, shaky and weak right now. I don’t understand the world at the moment, but I do understand the moment I’ve just shared and I hope you can too.

I love you all, I must rest.

Your Brother in Fight,
/M

Perception: A Tale of an Ordinary Man in a Funny Red Cape…

I have been having a very hard time physically and with my mental abilities. Not to mention that we’re destitute now. And at times it wears on me so much that I can’t see the light anymore. But its times like this where choices, yours and mine, come to shape how the story ends. I hope this reaches those who feel as if the end has come, and I want you to know that only YOU can control what happens from here.

My story is not going to end yet. And to that, I leave you with this…

/M

Facebook: 04 September 2014 2:35pm

Perception: A Tale of an Ordinary Man in a Funny Red Cape…

This morning was another one of those mornings where I woke up and the first feeling (other than intense pain) I had was one of hopelessness. It isn’t often that I feel that way anymore, but it does happen. And I get the impression that there are some who think that I never have these feelings.

I do. We all do. But its more about what you do with and about it, than it is whether or not you still have a human reaction.

I’m just a father who refuses to give up and/or die in front of his son, that’s all.

Aedan loves taking my shirt to bed with him after I’ve properly ‘recharged’ it by wearing it all day. This morning was rough, really rough.  But instead of letting that darkness take over, I picked myself up and put on this shirt.

You see, this shirt has powers. My Boy cuddles on it at night and looks forward to me giving it back to him at night. When I get it back in the morning, after HE recharges it for me, it serves as a reminder of sorts. It reminds me that he is counting on me, reminds me how I’m needed in this world. And I refuse to fail him. It makes me feel 10ft tall and bullet-proof, and sometimes I wonder if I really CAN fly. At my weakest, I still feel strong.

I haven’t done my Saline drip in a while. I only have a few supplies left and I’ve been stretching what I have available so my supply lasts longer. When I feel weak, I don’t feel like doing this. Especially not an NSS Drip (Saline) as is far more involved than just my Glutathione IV push, and many days I just don’t feel I have it in me to do it anymore. As if the fight has been beaten out of me after 6 years.

But this morning I put this shirt on, and I forget how I actually feel – I am filled with purpose, strength and fight once again.

I’ve been weak, my hands shake and I don’t see very well at the moment. But I couldn’t just lay down and give up for the day. I’m wearing this shirt after all, and I can’t charge this shirt with weakness now can I?

You can see I CHOSE. Its always a choice, and instead of surrendering to the darkness today, I chose to fight. Even when I’m nearly certain I have none left. Today is an example, not an exception.

I don’t know that I have a clear point at the moment, perhaps other than just to be open with y’all and let you know Im human too. I can lend you all the fight in the world, but I think also being open and honest about the fact that I too struggle is equally as important.

Healthy or not, we all face times where you’re not sure you can fight anymore. And I just want you to know that’s not only normal, but you should expect it.

Times like this I remind myself I have to EARN the right to be Aedans’ Hero. He’ll look up to me no matter what, but I believe I should first earn it. Every day.

It doesn’t matter what your ‘struggle’ is. Maybe you’ve suffered from a severe reaction to FQ’s like I have. Or perhaps you struggle is to simply look at yourself in the mirror and see yourself in a positive way. Whatever it is, know that you can overcome – but you must first make a concious choice, find something – anything – that makes you at least FEEL strong… and do it.

You can see what choice I made today. I ask you, whats your choice going to be? Let’s build momentum… most times you’ll find that’s all you need.

I hope my senseless rambling here at the very least gives you something to think about.

My drip is almost done, I did 750ml of NSS, albeit expired, but it should still be okay. Drip rate of approx 120dpm. In a few mins I will be giving myself a Glutathione IV, 6000IU. Deep IM B12 shot to follow.

Walk beside me my friends. I have nothing that’s not also inside every one of us. At best, I’m just an ordinary man in a funny red cape. This gift is in us all.

Until next time…

Your Brother in Fight –

/M

Dad vs. Chapter Three

Never give up, never surrender. No matter how defeated you might feel, know that there are so many moments like this where you will find strength. But only if you learn to look for the small wins… Even the smallest of wins add up over time to create momentum. And my friends, momentum is all you need… I love you all. – Michael

Facebook – 06 June 2014, 8:36am

Dad – vs. – Chapter Three

I spent the first few years hiding from my family. I was filled with so much shame about what was happeining, and shamed over all the things I couldn’t do. I didn’t want them to see me as weak, and in the early years I didn’t want Aedans last memory of me to be as a severely crippled and weak Man. I still fight it, as my ego wants to show my Son that I’m Superman, capable of anything and I would have wanted him to see me as big and strong. Always. Perhaps some of you can relate.

Through this journey, I’ve been forced to learn far more humility than I imagined, and I’ve learned that I have to be honest with my Son now instead of hiding it. Or at least more open than Id like.

If you read my last post, I spoke of my inability to read chapter books like Mama does. But Aedan knows that trying something you can’t do almost always makes you better. During that last conversation I told him we’re going to read a chapter book. We might not get through much, but we’re going to do it.

He, being my Son, turned it into a game. Like the TV show ‘Man vs Food’.

He brought the book Mama was reading, she left off at Chapter Three.

As I started to read, he noticed I was struggling and moving the book (my eyes change focus continualy) to see. He asked what happenswith my eyes, so I told him. They hurt from strain to see the small letters, the double-vision becomes very noticable when focusin on smaller things and my eyes get tired, so soon the page looks like nothing but a black blob. He said ‘It’s okay Dad, we don’t have to read this, let’s go back to ‘Hop on Pop…’ he’s so sweet.

No I said. We may have to keep taking breaks, but we’re going to read until I can’t read a single word. And we did. During our frequent breaks (every half page or so) he’d chant ‘Dad vs Chapter Three! Go Dad!’

It took about an hour, we got through about 8 pages. We checked and turns out Chapter Three has 12 more pages! *%#&!

He thought it should be time to quit. But nope, we were having a good time. And I wasn’t done yet. Another 20 mins and we finished another page and a half. But we went well past the point where I or he thought we’d get.

My old ego didn’t like failing in front of my Son. But the new and real me? I loved every second. I learned that my Son sees me struggle, sure. But he also sees that I never ever quit. He is so supportive and we are learning together to make a great team. And he’s the best cheering section a father could ever ask for.

Chapter Three won this round, but I’ll be back!! Grrr…

I don’t have access to my Blog still, so I’m posting this here. I know it’s long. But I also know that I would have needed to read this when I was at my worst.

Aedan taught me a valuable lesson that I want to share.

He doesn’t care if Daddy can’t do some things, or can’t read him the books he loves. He just wants his Daddy, in whatever shape I’m in. And he’s proud to be my cheering section.

Your children love you. Sick or not. Please, take this to heart and work on losing the shame. It is a dark Evil that will eat you alive. Take my word for it.

Thank you for reading, and go out and do something today that you’re sure you cannot. I began Chapter Three convinced I could get through it. And next time I fail to finish, I will also have been convinced I could. Just live my friends…

I am the luckiest man in the world. No matter what my physical state would suggest.

Conversations with My Son: Fairness, Truth, Strength and an Absolutely Unbreakable Belief in Yourself…

Yesterday was a brutal day. But the love and support I’ve received had both shocked and humbled me. It worked, and I have overcome so far. I love you all, and with you I share these moments.

At bedtime, my son likes to lay with Daddy and just talk. He told me about a part of his day that really hurt his feelings.

At lunch, he spilled his yogurt on his shorts and had to change them. The ‘Lunch Teacher’ scolded and told him he did it on purpose. He was so upset because he didn’t, it was an accident. But she refused to believe him. My Son is forged of the highest grade of character, and is so true in his heart that this really crushed him.

I looked him in the eyes and said:

“I don’t care what she said, look at me”… “would you ever lie to Daddy?”

“Never Dad”

“Was it an accident?” I asked…

“It was Dad”.

I crouched down to his level, looked into his eyes and said…

“I believe you.”

His crying stopped. Then our real talk began.

I told him of a story when I was in 1st Grade.

“I got in big trouble because someone wrote on my desk in green marker. Even though I didn’t even have markers at all and couldn’t have done it, they didn’t believe me. No matter what I said. I know how that feels buddy, and I’m sorry you had to feel that. But it’s just part of what’s made me the Man I am today, and it made me grow stronger.”

“How’d THAT make you stronger Dad?”

“Well Mijo, as you grow through life, you’ll find that sometimes the world just isn’t fair. No matter how true your heart is, no matter how honest or even how right you may be, there are times where it just won’t be fair.”

“Yea, the lunch teacher sure wasn’t too fair Dad”

“Yep. But here’s the thing Mijo. You had a choice. You could either just walk away crying and feel defeated, or you can hold your ground. State your truth,believe in youself and never waiver in that belief. Stand up for yourself, even if no one believes you. You made the right choice.”

There will be times in your life where that’s all you have it seems. That inner voice that tells you that you’re okay. An inner calm that is yours because you believe in yourself in a such a way that it cannot be broken. By anyone. Ever. Even if you find yourself standing alone, you always stand. Your most important belief is your belief in yourself. No matter what. Live true and hold that inner voice close.

I didn’t realize how much Aedan knows or has seen. He said

“like that stupid pill Dad”… “you believed in yourself and never gave up, and look what you can do now”

Took me by surprise it did. I didn’t see the parallel myself, he’s a very old soul.

“Exactly” I said.

If I’d have said another word, I’d have started cryin like a little girl with a skinned knee.

I guess what I’m trying to say is this:

No matter what you’re facing, believe. If you’re reading this and you too are finding yourself fighting against the grain, know that there are others who understand. But you cannot allow your inner voice to be drowned.

I was trying to teach my Son a very important lesson. But in true Aedan fashion, he turned it around and accidentally reminded me of the same lesson. I gather that its true; your Children record everything you say or do. They’re always learning from you, so make good and damn sure you teach them well.

To those of you reading who feel so alone, feel that no matter how hard you fight – no one believes you – I leave you this:

Tune into that inner voice like a radio station. Turn up the volume, play it loud. It may take what seems like an eternity. But that inner voice that tells you you’re okay, that tells you this IS happening no matter what the Dr’s or ‘system’ tries to tell you… that voice may be all you have. For many years. But know that you WILL prevail.

But only if you believe.

I don’t think this makes a lot of sense. Its really a mash-up of several thoughts at once.

But I believe, I always have. And I never gave up. They kicked me out of ICU and told me – in front of my family – that I was crazy. This wasn’t happening. For years I heard that.

Ask me when you’re older my Son. I have a story to tell you.

I hope you can take something away from this.

I love you all. Thank you for reading.

Your Brother in Fight,

Michael

It’s not the size of the dog in the fight…

I feel like I’ve been locked in a mental prison for so many years. When I have words, I’ve enjoyed posting my thoughts. Usually its filled with things I’ve thought about deep inside for years now. And usually I’m talking to myself. Reminding myself of what I went thru and/or the strength its taken. It makes me feel good inside to put out words that make sense, but also it serves as a reminder when I feel I’m ready to give up. I re-read my words and it forces me to find the strength to make it on more day. It is my hope that posts like this reach your inner fight too.

Facebook Post – 12 August 2014

Its not the size of the dog in the fight…

I am quickly approaching my 6th year anniversary of being poisoned and metabolically destroyed. Lately, I have been on a another downward cycle, my body has clearly suffered a heavy toll thru this fight. When I hit the wall and lower my baseline, each time it takes me longer and longer to get back to where I was before hit he wall. Usually I don’t mae it back to that baseline and from that point forward, the degredation is (so far) permanent.

Daily:

While my baseline can vary from day to day, or even throughout the day. But generally my mind is slow to process, the world is still too fast. I get lost quickly in a 2-way conversation and still cannot reliably care for my own needs. My vision is doubled and blurry on GOOD days, most days my eyes just hurt. There is a disconnect between what my eyes see and what my brain processes. Its fairly disorienting. Feels similar to closing your eyes and moving around, and/or closing your eyes and talking. But with images. Very strange feeling to describe.

My body is in tremendous pain, multiple types.  I can only describe the pain(s) as being in layers. Each layer distinctly different, covering my entire body in indescribable pain including all joints, all tissue, even my face and eyes hurt. My entire body fatigues quickly – nothing like being ‘tired’. My body becomes very heavy and many of my supporting muscle groups are weak, shaky and some simply fail. Once that happens and I hit the wall, I need the world to stop completely. I become unable to communicate what’s happening or communicate my needs effectively. I barely make it thru an uneventful day most of the time.

BUT I HAVE MADE IT THRU 2,120 DAYS SO FAR. It’s like Groundhog day in reverse, everyday somehow harder than the last. But I got up and I have faced it head-on, everyday.

I wake up to this reality everyday. Then, I must also fight to get medical help – which has been almost non-existant, fight to handle whatever business the world forces me to deal with. Fight to find money for Medical care, treatments, co-pays, supplements, organic foods, electricity, water, phone, etc. I am at a substantial mental disadvantage but I still try. Every day.

My babbling until this point hardly describes what I go thru everyday and the logistical roadblocks caused by my condition. But I’m trying to share what I can to make a point here.

I know many of you feel as if you can’t go on even one more day. But I also know I’m among the hardest hit by these drugs. And if I can make it thru each day, you can too.

Don’t get me wrong, it isn’t easy. And there have been many days where I would want to just give up. But I can’t. As it turns out, that isn’t my style. And it dosnt have to be yours either.

Early on I would think about the many times I thought I couldn’t possibly live until morning. Many times I thought for certain I had come to the end of my life. But, clearly the end hasn’t yet come. And the more I thought about the times I’ve lived thru impossible odds, the more I realized ‘this too shall pass’. This morning felt impossible to me, but I knew the antidote… I thought of some of the times where I was convinced my time had come – convinced I couldn’t take another step. But yet, time and time again, I found the fight. Realizing my strength helps me get through times I deem ‘impossible’.

I now know there is no such thing. I know that the only thing that will cause me to fail is… wait for it…

ME.

I realize this is long and I’m not able to make this neat, tidy and sensible. But it is my hope that through my experiences you will find hope and that you will find the light. It breaks my heart to get so many messages filled with despair and fear. I promise I am always here for you, but really. If I can make it, you can and you will.

Are you going to live or die today??

EVERY MORNING I make a choice. Every morning, I choose to live. I expect you to do the same. Know that when it gets hard, I am here. But it is YOU that first must decide.

It isn’t the size of the dog in the fight…

Its the size of the FIGHT IN THE DOG.

Decide. Right now, decide to fight.

Your Brother in fight,

Michael

Shame and my Truth

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.