And Now For Something Completely Different: We're All Okay the Way We Are
“And now for something completely different” is the intro to episodes of “Monty Python’s Flying Circus,” and the show delivered. A pastiche of conventional slapstick and private boys’ school antics, Cambridge Footlights Club wit and riffs off British music hall comedy cross-dressing bits, the tone and style were veddy British yet the content was accessible for Americans. We imitated them, sometimes unwittingly. Take The Ministry of Silly Walks. People with MS walk that way all the time. It's a small example of art imitating life; the reference is easy to find and laugh at. But there’s another reference in their comedy. It emboldens my rebellious self to shrug off the catchphrases and clichés in our social media-driven disease culture of confession and embrace other options.
I’m not putting down the existence of online disease forums. After all, I first sought one out years ago for comfort and connection before assuming a leadership role. I still find comfort in my private MS groups where I can vent or brag and get instant love. As the years have gone by, my needs have changed. Let’s say I feel more relaxed about having MS. Of course, it helps to be retired and no longer stressed by mainstream apathy and hostility. Whatever the reason, I’ve changed, and the new, often conflicting thoughts I have make me feel like I’m onto something. I’ve allowed them to stay so I can figure out what’s going on.
Some phrases we use a lot, and which hit my ears differently now
- I have MS but it doesn’t have me.
- People are so judgmental about parking lot blue spaces. Why don’t they try harder to accept and understand us?
- My doctors/family members don’t listen or understand. I feel alone.
I felt relief and gratitude when I first read these words years ago. I could directly relate to them in the most personal ways. Our number one need when we occupy the early stages of our disease journey is to feel like we belong to something bigger. We feel so alone.
There is safety in numbers.
Belonging to a multiple sclerosis support group made me feel safer. The way my parents protected me from harsh realities and wiped away my tears whenever reality breached their carefully-crafted fortress. But lately I’ve felt the stirrings of adolescence. My parents’ soundbites are wearing a bit thin. The fortress walls are suffocating me. My new, strange independent thoughts need more than the simplistic wisdom doled out to children who are too young to think critically. Somewhere between adolescence and full maturity, I realized feeling safe isn’t the same as being safe. Then when I developed multiple sclerosis, I finally understood that the very concept of safety is an illusion.
Now I’m beginning to understand another new thought:
Being given sympathy, support and understanding is not an entitlement.
It’s not even a realistic expectation. It’s a gift someone gives me. They didn’t have to, they wanted to, for whatever reason. Whether it came out clunky, insincere, or well-informed and beautifully-phrased, it’s a gift nobody owed me. In fact, here’s where re-gifting is even better. A soundbite for that is Paying It Forward. A good deed done without expecting anything in return after someone did that for you without any agenda.
More and more, I like the whole notion of having few expectations about anything anymore. That doesn’t come from bitterness or cynicism; it comes from giving people a break and recognizing that we all have an egocentric core that makes us act like we are the stars in our very own blockbuster movies. Checking that ego is the whole meaning behind an older catchphrase: I’m Okay, You’re Okay.
Let’s say I see a doctor who thinks it’s the job of a family member to comfort you and not his/hers? First I’d probably think: what an a**hole, and want to fume about it for the rest of the day. But then I’d remember an article I read on Kevin MD about how doctors all have a different take on their roles during a patient interaction, and how they each have a rationale to defend that attitude. Since I want to shake off my victim-anger and spend that energy on something else, I try to think of an appointment as a one-act play with two actors who are delivering lines from a script. If the doc goes off script, it's because he's interpreted his character's motivations in ways I didn't anticipate. It's nothing personal. And like a professional actor, I instantly adapt to his improv. I leave feeling whole, having played my role not as a broken person, but as a pro who went in prepared and came out with my self-confidence intact. If my co-star played the part of a total jerk, then my character took the high road and played it as magnanimous and accepting.
Another example I can think of is when I’ve gone on blind dates. The wounded me would dread the moment I disclose my multiple sclerosis to the man sitting across from me. I’ve blown it up in my mind so big that everything’s hanging on his reaction and the decision he will make with that information. No doubt I made it sound big in the way I presented it and probably with my body language besides. His response determines my next behavior. Rejection would set me off and I’d get angry; later on it would mushroom into feeling unworthy and unlovable. But the me that I am becoming would know that he is going down the list of pros and cons while he is listening to me, and MS is just one thing in a column of other things he is thinking about while he decides whether he wants to see me again. I also know that I have preferences and deal breakers of my own, and thus we are on equal footing and both have the right to reject the other. If he doesn’t want to see me again, I can say okay, that’s cool, and mean it.
Who do I want the other person to see when they talk to me? The wounded, vulnerable, broken me they’ve glimpsed—or the whole me that can be okay with myself in my flawed state as well as be okay with other people’s flaws? Which one would you like to spend time with?
I don’t know about you, but I like the second version of me a whole lot more. I hope I can get there someday.
Does anyone else in your family have MS?