Sami Jankins considers how the limited conversation on men and pain only further place those facing chronic pain into the shadows.
Our society’s language with pain is a complex one. When a basketball player gets knocked to the ground and appears injured, there’s commentary from time to time of if they are just “playing it up” to get the foul call. If there are no bones sticking out, how bad can it be? I was raised in this similar manner. My dad is a sports guy and although I was legitimately terrible at every sport I played, I excelled in the arts. Most of my major injuries came from dance. I sustained a pretty bad sprain when I was seven during the dress rehearsal of a play and the directions given to me by former basketball coach dad were – ice, ibuprofen, wrap it up, and get back out there. So I did. While my dad’s advice worked for me at the time, I’ve developed painful conditions that aren’t visible with the help of an x-ray or MRI machine. Just because I look alright, doesn’t mean I am. Looks can be incredibly deceiving.
Before I started attending graduate school to write screenplays, I figured I should begin acquiring some solid knowledge-base of films I hadn’t yet seen. I went director by director and breezed through each collection of films. It was when I went through watching movies by Aronofsky where something suddenly struck me. One of his earlier films is PI, and while I won’t give away key plot points, the main character is a genius mathematician who also has unimaginable pain in his head. The pain captivated on film is so intense it creates a visceral feeling, even more-so for me because I experience headaches just like the main character.
Calling what I and many others experience a headache is an understatement. My first migraine occurred when I was in elementary school. It resulted in me passing out and being sent home for the day. Draped under blankets, I hid from the light that made my eyes throb. In high school, I had an episode that left me unable to enunciate speech or remember who the president was. I’ve learned to deal with migraines. Sometimes my medications work, sometimes they don’t. I always know an end is in sight though, and to not get too worried when my brain doesn’t fully cooperate. Most times I just hang out in a dark room and listen to Abbey Road. I’ve saved my parents a significant amount of money in electricity bills this way. The other type of headache I get is called a cluster headache.
“The Beast”, “suicide headaches”, and the “worst pain someone can experience” are other names used in reference to cluster headaches. These are words that the cluster headache community has used to describe what they go through -to put their perspective into a more commonly understood language. Think of a monster lurking within your head and you’ll never know when it will strike. Where other conditions have triggers, these are impossible to predict. Half of my face will turn bright red and puffy, my nose will stuff, and my eye will water. It will feel like every bone around my eye is being shattered. The first time I experienced this, my parents found me on the floor screaming. Although I’m affected, an interesting aspect of this condition is that it’s known to predominantly affect men.
“Brush it off” and “tough it out” – two phrases that are perpetuated within masculine culture when it comes to pain. The worst ever pain an individual can experience is often acknowledged as a woman giving birth. Where does this leave men with an excruciating painful condition with no scan that can prove it’s occurring? Cluster headaches have left people pacing, clawing at their face, and screaming. It’s a terrifying and debilitating condition. They are known to strike in the middle of the night, lasting from minutes up to three hours, and can produce pain described as 10/10. When they will strike is completely unpredictable for many. One frustrating aspect of this condition is often having to prove over and over again that something is actually wrong. Another terrible aspect is that there is no “go to” for medication. For some, oxygen works. There are written up protocols for various vitamin therapies while others try a laundry list of pills prescribed by their doctors and hope for the best. The most promising area of research relies on the study of currently illegal substances such as psilocybin and LSD, but it’s a challenge for research to press forward when the potential treatment is taboo. Some suddenly find themselves looking to their partner more for support and at times needing to be cared for, which can be a startling change in life.
When your life is affected by a chronic pain condition, such as cluster headaches, life changes profoundly. It’s important that stories be passed along to start the conversation on pain and to build empathy. Each connection to a story can change the way our culture views pain. Each story is a step in the right direction.
“Jeremy” describes himself as the typical construction guy who liked to rock climb in his free time. His friends had seen him break bones and shred flesh without even a wince. The first six months with this new affliction were spent with frequent ER visits – no one could figure out what was going wrong. Because of this, millions of dollars of medical bills were acquired and his life was altered forever. He could no longer just plan to go rock climbing. What would happen if an attack occurred during the middle of his time climbing? He made the decision to leave his job, knowing that he would be a liability with unpredictable severe attacks of pain. The conversation he hopes will change in regards to pain is the proper treatment plans for patients. Being handed a number of scripts that turn you into a still pain-ridden zombie is not a solution. Having to fight to be believed isn’t a solution. Currently, it’s challenging for cluster headache patients to get on disability because of the lack of education within the system. If the conversation opens up, it will lead to better outcomes for the cluster community.
“Jesse” went through 57 different procedures trying to get cluster headaches to end. He decided children were not in his cards because his pain was so poorly controlled. He acknowledges that the mentality of “brush it off” only works with cuts, sores, or broken bones. Being robbed in acknowledging pain, he notes has been a contributing factor for an increase towards depression for himself and many others in the community.”David’s” cluster headaches are believed to be from heavy exposure to many toxins and chemicals due to his time as a firefighter at the World Trade Center. A former Marine, he has been hospitalized 37 times in the past 10 years and right now is being considered for a neurotransmitter implant to help with the pain. He’s discussed how in being gay the topic of masculinity, and now needing to rely upon his partner of 11 years, has come up quite a bit. Before the cluster headaches, he would’ve been considered as masculine as they come by societal standards – Marine, firefighter, ice hockey, football, and rugby player. He has had to leave that all behind and find a way to to redefine his identity.
“Mark” has had a cluster headache every day for the last six years. This is referred to as “chronic cluster headache”. He also has been on a variety of medications with no effect. He spent years as a coach, while his kids were growing up and after. This is one of many things he also has had to give up. For him, family and friends have come and go – chronic pain makes people feel uncomfortable. It’s hard to see others suffer, but it also places the uncomfortable thought of “this could be me”. What made the difference for him was attending a conference in DC a few years ago where he was given the opportunity to not only meet others like him, but to advocate on his and the cluster headache community behalf. While there was nothing he could proactively do to stop his pain, he could connect with others, and push for future change. It gave him purpose.
While only a small fraction of the population will experience these types of headaches, many people will experience extreme pain. Cluster headaches can be switched out for a variety of other extreme pain conditions, and the conversation would still be the same. No one should feel weak because of this. It’s often said that pain is a warning sign that something is wrong. We need to reach a place where frank discussions on the acknowledgment of severe and chronic pain doesn’t lead to feelings of emasculation. We are not warriors if we can deal with pain better than someone. There are no awards. Pain is pain – it’s awful no matter who is experiencing it. We are warriors when we can have open discussions on how chronic pain affects our lives, and push towards better treatment and pain management options for those experiencing chronic pain conditions such as cluster headaches. Open discussions can lead to real change, and I hope that time for such frank discussions are on the near horizon.
Photo credit: crosathorian/flickr