I recently came across a piece of work that spoke about war heroes. Many were men who had been held captive and tortured for long periods of time.
One such man was high-ranking naval officer, Jeremiah Denton. His plane went down over northern Vietnam, forcing himself to eject before it crashed. He and his co-pilot were captured and brought to Hanoi as prisoners of war.
As a prisoner, you are under the control of your captor, the Vietnamese sharing little kindness to their new guests. However, the Americans did not learn of the torment being inflicted on them until Denton was forced to do a filmed propaganda ad for the Vietnamese government.
While feigning that the lights were bothering his eyes, he blinked the word “t-o-r-t-u-r-e” in morse code. It was intelligence the US needed. They were not aware that Denton and his men were being beaten, starved, and left in long stints of solitary confinement.
It took seven years and seven months for them to extract Denton from Vietnam. Seven years and seven months of extreme pain and torment before coming home.
I sit and think about my own seven years and seven months of being in the Topical Steroid Withdrawal community. It’s actually seven years and 11 months now. And though we are not prisoners of war fighting for our countries, we are prisoners of a war, fighting to be heard.
We ooze, and itch, and burn, and can’t sleep, can’t interact with the world some days. We deal with PTSD. We lose people we love, things we love. But there is one element of torture that no one ever talks about.
You have no idea when the torture is going to end. Denton had no idea when, or if, he would be saved. And we in the TSW community have no idea when we will make it out onto the other side.
You see, it’s easier to survive when we are given the ability to compartmentalize pain. Long drives can be split up by bathroom breaks. Lengthy student recitals are intersected with intermissions. Marathons have checkpoints to showcase just how much skin is left in the game. There are programs and timelines for these types of events.
With chronic pain, there is no road map. No stop watch. No destination. It’s just pure journey where one foot must continue in front of the other.
Because of this, we can get lost. We lose ourselves, our minds, our fundamental sense of purpose in this ever moving world. It’s as if we are frozen in time, but time still goes on without us.
That is why it’s so important to raise awareness about this condition. Navigating eczema is battle enough, but being held hostage in confusion and loss within the realm of TSW is a whole other land of torture.
It is why I use my voice and backtrack my steps to meet my eczema family where they are at in their journeys. Prevention is key in all of this. There is no need for more guests within our camp. We hope to shut down these prisons, to burn these cell walls to the ground.
So, as we continue to place one foot in front of the other with no guarantee of rescue, it is within that formidable will that we hope extraction is just that one step further.