The ‘H’ word
In case you somehow missed me blasting it all over social media: this very blog won the WEGO Health award for best blog! How freaking cool is that?! I’ve gotta say, writing every week has been personally therapeutic. Connecting with families through the blog has given me purpose and educating others about the special needs and epilepsy life has driven me. But then to be honored for it all provides me with a perfectly timed motivational boost. So, thank you all for reading this blog and sharing it with your communities. You never start something for the awards but they sure make you feel good. As does the all expense paid trip to a health conference… which, Miguel, has coincidentally developed an interest in attending upon learning it was taking place in Vegas.
Overall, it was a pretty great week for the Cervantes family: Jackson got his first hit in kid-pitch baseball, Miguel performed his 1,000th show as Hamilton, and Adelaide was able to decrease the volume of her regular oxygen support. We celebrated each achievement in true Cervantes style, (read with cake and/or tequila), but we’re always brought back to reality because, no matter the occasion, chronic illnesses is a bugger and a persistent one at that.
Several weeks ago, after Adelaide had endured six seizures over a two hour period I tweeted that “I REALLY REALLY REALLY hate epilepsy and seizures. That’s all”. I received a response back from one epilepsy warrior mama that she was so happy that we could say this now after she had been told multiple times that she shouldn’t. It struck me as so odd because OF COURSE I hate epilepsy. Who doesn’t? Seizures have stolen my daughters smile, impacted her ability to breathe on her own and interact with our family. Then, further down in my twitter mentions I saw that someone had, in fact, replied saying that we shouldn’t hate the seizures but use them to motivate ourselves to find a solution. While I understood this sentiment my initial thought was, “please take notes as I multitask like a mother”.
The idea that we cannot hate the conditions that are impacting our lives and the lives of loved ones is ludicrous. Be it epilepsy, mast cell activation, lupus, Crohn’s, whatever! THEY ALL SUCK! Can you still live a meaningful life with a chronic illness? Absolutely. I would even argue that the people we’ve met, the lives we’ve impacted, and the money we’ve raised for research has led to a more fulfilling life than I ever could have imagined. That does not negate the fact that I would give up every ounce of this newfound purpose if I could be guaranteed that my daughter would never have another seizure, attack or episode.
Hating chronic illness and fighting so that we have better treatments and cures are not mutually exclusive. Once I get over the debilitating anxiety I experience after my daughter has an incredibly rough day or night, the fire burning inside me to do something about it is stronger than ever. Denying myself those feelings does not help anyone. Of course I’m not living in a state of rage all day every day, but allowing myself a moment to scream into a pillow… or into the twitter void is a necessary release.
After a particularly hard few months of frequent hospitalizations, Jackson, then six years old, proclaimed that we had “the worst family” because of his sister’s epilepsy. I explained to him that he had every right to be angry and sad and frustrated. You know what? I was too! But, it was not our family’s fault and it wasn’t his sister’s fault.
“You shouldn’t hate our family, buddy. However, you can hate epilepsy.”
By validating his feelings and then channeling them he became empowered. Instead of feeling isolated by his sister’s condition he could unite with us and others in the hatred of a common enemy.
Sometimes we just need a place to direct our negative emotions and I would much rather have them directed at the condition then damaging personal relationships. Which, I came to realize, was the root concern for one anti-hater. In diving deeper into their thought process, it became clear that this person was worried that the hate for the condition would transfer to the person affected. This, I think, is a complication of chronic illness: society seems to have no issue saying we hate cancer without fear of it being misconstrued as hating people with cancer. This is likely because we have a basic understanding of what cancer does and it’s severity. But it can be difficult to understand less common illnesses that have few treatments and often invisible symptoms. Negative emotions could be directed at the person who had to cancel plans, yet again, due to some mysterious health attack. While, I can wrap my brain around this argument it isn’t enough for me. If we communicate together how much these chronic illnesses suck then we can lead by example in directing our frustrations toward the illness and not the ill. Or as the kids say, hate the game not the player. Then, in the process, we are raising awareness through the passion of our language. Anger managed + awareness raised = win-win
Look, Chronic illnesses are hard and unfair - understatements of the year, I know. Pretending otherwise does not align with my over-bearing sense of urgency to do something about them. So, please, let us hate them: vocally, verbally, in print and online. Do not mistake my emotion for an incapacity to be proactive. I can still love life and celebrate each and every one of our inchstones all while simultaneously hating Adelaide’s chronic conditions. Martin Luther King Jr once said, “By its very nature, hate destroys and tears down; by its very nature, love creates and builds up” Well here’s hoping that my hate for epilepsy and mast cell activation utterly destroys them and my love for those affected gives them the strength and support to celebrate their next victory. I’ll bring the cake.