Once again, it’s been an age since I’ve written. I’ve had so much to say, yet no energy to say it. Words are just floating around, clogging up my emotional airways and if I don’t spill out, I will suffocate.
I watched “Spiderman, No Way Home” last night. If you are a follower, you are very aware that I have a deep attachment to Spiderman and all things Peter Parker. It all started with the Tobey Maguire installments and a child-sized stuffed toy I’ve had since I was seventeen.
I found myself becoming very emotional during the film, the same as my fellow movie-goers (funny enough, during a serious scene that had us all pulled in, a man exclaimed, “I’m not crying,” which helped us all breathe a sigh of relief during such a dip in the emotional rollercoaster). However, I was profoundly moved in another aspect, unlike the others in the room.
As Peter Parker faced many demons, literal and figurative — his body battered, his suit torn — his aunt May offered some prudent advice. It came right after he felt like he had sacrificed more than he could possibly bare losing and that the fight he was facing didn’t feel worth the loss. He was trying to help others that had nothing to do with his own journey and could easily be out of his hair with the snap of a finger (so to speak).
“With great power, there must always come great responsibility.” Sound familiar?
What proceeded her quote was devastating and heartbreaking (I won’t spoil), but it leaves you feeling an intense grief for Spiderman. He keeps trying so hard to fix things, fix situations that are caused due to their proximity to his life, and he melts into a thousand pieces.
For some reason, I felt right there with him.
I am close to 7 years Topical Steroid Withdrawal. I have been an advocate for 95% of it. I’ve made a countless number of videos, written numerous blogs, and have a documentary that I created on my own while I was still in the first years of TSW. “No good deed goes unpunished” sometimes rings true in this community as much as it does with Spiderman’s kind heart and will to do what is right, not what is easy. But not even Spiderman can hold it all together after awhile.
I found myself this past year having a hard time holding it together.
I had two life changing hip surgeries in March, which catapulted my body back into a TSW state. Imagine TSW while being in a wheelchair and unable to do much, at all, for yourself. A raging fungal infection ensued. Then, after months of wondering if the screws in my hip were an issue (my leg wasn’t progressing well), we found out that I am irritated by nickel. In October, I had a third surgery to get the screws taken out. After two weeks, my leg felt so much better and my skin seemed to get better as well. I was so grateful and felt like I was perhaps on the right track. Mind you, I have been working with a registered nutritionist, too, which has been a pretty penny plus challenges. I had been in this cave of darkness, alone, ostracized from what I knew as life, and when my screws came out, I felt this sense of hope as my symptoms died down.
But then, as swiftly as my hope came, it left.
My skin soured and went back downhill. This tightness built in my chest and as my eyes swelled with redness and skin on my face and neck began to crack and flake, that ball in my throat opened like a broken dam. Crying has been second nature. Everything in my life keeps reminding me of what I don’t have. I’ve been an advocate, shedding blood, sweat, and tears for this condition and yet I never seem to get better. Healing toys with my spirit. The limbo of it all. A constant building of a life that never gets lived.
Watching Spiderman on that screen was like watching myself. Just rage, rage, rage barreling out from all his pent up grief.
Thankfully, someone just as brave and as kind as Spiderman, stopped him from making a horrible decision. He urged Peter, with just a look, to stop and think about what he was doing.
Funny enough, a few hours before seeing the film, I received an email. It was from my Paypal stating I had received a donation to me Preventable account. I rarely get donations for my documentary (it is free on Youtube, but if any soul wishes to donate towards my efforts in creating the documentary, my PayPal is displayed in the comments section), but this man’s contribution come right on time. I teared up in my car. I’ve been bleeding out money this year from all my medical needs. I wrote him a thank you, to which he responded with even more kindness.
“Community doesn’t happen by itself, it happens because of people like you, take photos, make videos, write words, put yourself out there. Even if you do it just to process. The stories you tell form part of the community’s survival guide. Your reach is global. I hope you look back over messages you’ve received over time and feel good about it.“
I needed that reminder.
I have been adrift, drowning in my own journey, feeling as if all I’ve been doing amounts to sod all, and this man swooped in like a hero, saving me.
Spiderman’s story is nowhere near over at the end of the movie. It is just beginning some could argue. I’m right there with you, Spiderman.
As Dr. Strange says, “Just Scooby-Doo this shit.” For real, ya’ll.