Peanut Butter and Childbirth
Posted On March 13, 2016
Yes, I know this title is odd, but I assure you that I have not lost my brain yet! I will make these two things connect with MS. This post is probably more directed towards fellow MSers and their loved ones, but like anything else, it might apply to other aspects of life as well.
Everyone knows the saying “opinions are like assholes, everybody has one”, but I hate that analogy, it’s lazy, and technically speaking, it’s inaccurate (ask anyone with a colostomy where their “asshole” is and you might get slapped).
I like to compare various opinions the same way I consider childbirth stories. Whether you’ve given birth, or were born, everyone has a unique birth story. Even adoptions have a deeply personal story about how they came into their family. Whether it’s a good or bad memory, everybody has one. So I prefer the analogy: “opinions are like childbirth stories”, to me, this statement is more relatable, thought provoking, and intense. For example, my grandma and mom both delivered their kids fairly quickly, the stories of babies almost born in cars/elevators are hilarious; however, both of my children took over 36 hours to come out (after I arrived at the hospital). Nobody can tell you what to expect based on their experience(s) because every story is unique (even with some similarities, each of my kids have different birth stories). Considering this, it’s important to understand that MS is like childbirth, every person has different symptoms, reactions, progression, treatment, and outcome. It’s not like diabetes or cancer, which have a (mostly) clear definition of what the ultimate goal is, as well as how to track and predict success/failure with each available option. This is not intended to negate such serious health issues, but to highlight the difference when you have a disease that people know very little about. For example, let’s say a close friend tells you they have diabetes; your brain takes a moment to process the information and you realize “ok, medicine and a modified diet, I can help you with this”. Same process with cancer, the wheels turn in your head and you think “ok, either surgery to cut it out, or chemo the hell out of this bitch and get rid of it, or both, either way: we can do this!”
When first hearing that a friend has MS, people think “Oh shit, what is that? Shouldn’t I know what it is? How do I ask without sounding like a jerk? Is that the thing that Jerry Lewis has telethons for?”, and so on. Then there are people who go down the “childbirth story” lane and start talking about their uncle who has MS and either 1) takes meds, feels great, and runs 20 miles a day! 2) is permanently disabled, blind, broke, and has to go through horrid treatments to even survive his miserable existence, or 3) [my personal favorite] changed his diet and is totally cured!
This is where the “Peanut Butter” analogy comes into play. Some people can eat peanut butter all day, every day (theoretically), while other people will die if the tiniest amount of peanut butter is introduced into their system. While we are happy that your uncle/cousin/friend had a positive experience with any given treatment plan, that plan may be our “peanut butter death” plan. While we are sad about your uncle/cousin/friend having a bad reaction to the same medication we are now taking, maybe it was their “peanut butter death” plan.
Now, don’t get me wrong, these people are trying to help, they want to relate to you, they want to inspire you, they want to say/do anything (literally) that will make you feel better. They are just sometimes really bad at it. What they don’t realize is that as much as they want to help you, you equally want to tell them how, but you don’t even know what will help on any given day.
So, take these offerings for what they are, kindness and consideration. They are not helpful, they are not going to make you feel better, but they do let you know that people are trying to understand what you’re going through. These people are your tribe, be honest with them, most will understand. Let them know that sometimes you will need space and other times you will need them to hang on your every word. Tell them not to assume anything, and if you’ve hurt their feelings, it is not on purpose. Even without the crap-ton of chemicals pulsing through your system, this disease impacts the CNS, you will have mood swings, you will say and do things that you don’t mean and you probably won’t want to apologize to them because it will feel like you are admitting weakness and giving in to disease progression. Not to imply that we are exempt from apologizing, it just might take us longer and it might not sound sincere; but trust me, we are beating ourselves up on the inside. Our minds are scary, dark, and jagged places and you are a soft, safe, secure place. No, it’s not fair, but this disease is not fair to anyone, whether you are a patient or part of a patient’s tribe, it will impact your daily life. Control the things you can, and let go of the ones you can’t.
STATUS UPDATE: Started new medicine(s) last week and been feeling awesome so far! I’m still cautious, but I’m extremely hopeful about the potential of this treatment plan. Insurance denied the appeal for anti-fatigue rx, so I paid the $310 out of my remaining 2015 health savings account and I could not be more thankful for deciding to enroll in that benefit 2 years ago. It should last me 2 month on this current dose, so I guess I know where my 2016 HSA budget is going! Next year I will increase my contribution for sure!
As always, thanks for reading!