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.
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,
2 thoughts on “Desperation and the Shirt, God and the Nightlight…”
Hey Michael. I wanted to tell is that you are very inspirational to all of us living with severe pain. My pain was so bad for so what years that it was as close to being in hell without actually being there at that a person could be, imo. I couldn’t sit or stand for more than that 5 minutes for sitting 10 or 15 minutes for standing because the pain was so brutal. Couldn’t were seat belt for more than 5 minutes for about 3 years. Getting out of bed for the longest time was extremely painful and exhausting. I can’t understand everything you’re going through fact I wanted to let you know you have inspired me to keep fighting. It is a real challenge. The financial aspect is overwhelming. That is why I must learn how to do glutathione IV by myself. It is $140 to get it done at the doctor if I buy it from the compounding Pharmacy it is $23- I’m sure that’s why you stick yourself! I will email you more – keep fighting, you’re a tough sob (excuse my Texan) to make it this far. I’m impressed with your fight and toughness.
Try McGuff pharmacy in San Jose, they’ve got the best prices on the glutathione and or one of the largest providers in the nation. They charge $46 for 30 milliliters at 200 milligrams per milliliter.
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Thank you John. On one hand I appreciate knowing others understand me and my fight. Or at least some of my fight. But that also means that someone else has had their life taken from them as mine has been. I have to stand because sitting (or laying down) causes a lot of pain in the places that touch the couch/chair/bed. My glutes and hips are deeply bruised and painful – my legs have had the same bruise-type markings for years now. The tightness/stiffness/cramping/ripping pain layer is all over, even my face. But my lower body is the worst by far. And that’s not even scratching the surface of my symptom list. But here’s the thing: I give this monster too much power if I allow myself to think too much about what I face. Just face it brother and fight with everything you have. It’s not a toughness as much as it is realism. Whether I’m suicidally miserable or I’ve learned to appreciate small moments and small wins – I will be in this body either way. So in that sense, I don’t see that we have any other choice but to fight back without letting this monster steal inner joy. If I didn’t have this attitude, my son would have seen a lot more truly ugly stuff. And I can’t have that.
I learned to stick myself because of cost, yes. But also because I couldn’t afford the energy expense to leave the house to go to a Dr, nor did I have my wits about me enough to relay much of my thoughts/needs. So even if I could make it that particular day, it was rather pointless to go to a Dr for me. And I had too much shame to let those around me help me – back then I wasn’t sure what was happening or what to believe so I just kept quiet and went for it. My supplier for Glutathione is Wellness Pharmacy in Alabama. I’ve tried glut from several other pharmacies. There is absolutely no comparison in potency and purity and Wellness actually holds the patent for creating 100% reduced L-glutathione. I have zero interest in this or any company – just passing along some hard-learned lessons. Source matters. A lot.
You’ll do just fine. When you start, forget what you’re actually doing. For me it helped the first few times to just picture in my head that its not veins I’m sticking but instead I pictured them as cocktail straws. Made the mental game a lot easier to disconnect and make it more abstract. You’re clearly a tough SOB too – and who doesn’t appreciate a good Texan??
Your Brother in Fight,