Throughout this entire 8 years (and counting) medical ordeal there has been pointless suffering and there has been constructive suffering. The random excruciating and unpredictable pain spikes would fall under the pointless category. The only lessons they taught me is to go to the damn hospital if you're having a breakdown purely from agonizing pain. To do otherwise is needlessly prolonging the pointless. Such experiences scar you forever. It makes everything worse, amplifying the feelings of "why me" and pushing you to get bitter towards the universe that lets these bad things happen to you. Then there's the constant dreading of the next inevitable pain spike. What if the pain spikes one day but decides not to go back down? When you go above 9/10 on the pain scale it takes mental strength to acknowledge there are literal unbearable levels of pain out there. It's not a very worthwhile lesson to learn.
On the other end of the spectrum are bad experiences that serve some kind of purpose, intentionally or unintentionally. Take my accidental cannabis oil overdose for example; I can guarantee something like that will never happen again. One must never allow uncertainty when it comes to taking your medications. That doesn't just apply for something like measuring how much oil to take. Whenever you start a new medication you should be your own best advocate. Look up the medication to recognize the signs of side effects and drug interactions. My self-research is how I discovered I was experiencing the life threatening interaction of serotonin syndrome. Not once, but twice. I've prevented many more such incidents by looking up potential drug interactions myself. Failing to do so is especially problematic if you happen to have copious amounts of doctors like me. They are not always in communication to coordinate their actions and so are often unaware of what other treatments are being offered simultaneously. "Too many cooks in the kitchen," as they say.
Perhaps the most important thing to take from this story is that honesty truly is the best policy. Before my diagnosis when we were running in circles from doctor to doctor like headless chickens I was often simply not believed whether because I was accused of being mistaken in my feelings or even outright lying. For this whole staying alive thing to work out I absolutely must be believed. This is a big part of why I simply don't lie (unless as part of something like a surprise party for example.) If people recognize I am doing my best to cope at all times they won't demand more than I can give; the past has demonstrated where the alternative can lead. The only time I can remember lying about anything related to my health was when I was in the psych ward and was asked if I was still suicidal. I said no because if lying was what it took to get out of that hellhole and then finally succeed in ending my life then I was willing to do it.
Another lesson I've learned is to reign in impulsiveness. I am no longer suicidal but I am not 100% confident that it will stay that way forever. What if my worst fear comes true? A pain spike that starts and never stops. My second last resort is now seeking amputation. If my pain truly is caused by micro-tears in my joint cells then cutting my legs off might end the pain. All the way back in 2010 three years before my diagnosis I remember having a conversation with my cousin where I mentioned I'd rather be in a wheelchair without the pain than walking with the pain. He didn't think it a fair thing to say at the time because it was only me who truly understood the extent of the pain I was in. It's also impulsive for someone with my relatively fragile body to undertake reckless actions just to feel a bit more normal again. Going all out for that mattress game at camp was idiotic and completely not worth collapsing and feeling like my heart was going to burst. The cliche lesson is to listen to your body, the risk vs reward is not worth it.
This memoir is over yet my story continues, hopefully for many more years. I started writing this as a blog in 2011 for a few close friends and family so they could understand why I'm missing class or family gatherings. Now there are 54 people in the Facebook group and the blogging website has thousands of views. I hope this passes on the lessons I have learned so that whoever decides to read this doesn't have to learn them the hard way like I did. For the fellow chronically ill out there, I hope this helps you recognize that there's always hope. When it comes to those who are unhealthy the future is friendly. Scientists are actively working on cures even for conditions like EDS. Medications are improving every year and I heard a pill as strong as codeine but without the side effects is currently showing promise. The new EDS clinic will begin playing a vital role in future research. The lesson there is to always look for opportunities big or small to improve your lot in life as well as those suffering alongside you. My mother becoming a Member of Provincial Parliament and reading our EDS statement is a perfect example. Who knows, maybe in another 8 years I'll publish another one of these. After all, the learning of lessons never ends.
