The hardships in my life have been of my doing. I didn’t know how to deal with hurt so I hurt myself. I didn’t know how to cope with the most basic of emotions so I lashed out in anger. I confused common decency with intimacy. I shunned love for sexual gratification. And then, much later, I confused organization and time management with being a capable adult.
The internet has led me to every answer I ever needed, whether that was in the form of advice, information or counsel. The internet brought me my spouse, my ten closest friends, my last three jobs, my last three apartments, the plane ticket that brought me to BC, the minivan that brought me back to Ontario, the last three times I laughed out loud, and my plans for this weekend.
Having accomplished little in my 44 years, I don‘t understand why I‘m shocked and appalled that I have not met some aspirational standard I set out for myself. Lots of adults in positions of authority have been telling me that since my vision returned I should probably lower my expectations even further if I want to stay sane with MS.
When it comes to mindfulness, instead of trying to be like water, or clear my mind of bullshit, or imagining myself dying of oxygen deprivation and hypothermia on the highest mountain in the world, I try not to be mean to other people. Even in my private thoughts about them. Even in ideas I would never voice. I either try not to think of them at all or I try to think kind thoughts about them and identify with their struggles or lament their upbringing. This keeps me from demonizing them, for better or for worst.
If I don’t know how to do something, I Google it. Ninety-nine percent of all the answers I could need are there. One hundred percent of the bullshit I will never need and should never heed will also be there, so critical having critical thinking skills and a well-honed sense of skepticism is a must. Follow the money, follow the self-interest, follow the motivation. It’s not a “nation-wide pandemic” if it rarely occurs outside of a single municipality in British Columbia. It might be racist if you’ll lend aid to a predominantly white, middle-class town in a man-made disaster, but not to an isolated First Nations reserve that hasn’t had potable drinking water in 20 years in a man-made disaster.
Food does not have a morality. You are not being “bad” if you eat a brownie. You are not virtuous if you eat a kale salad. You are not a moral person by being vegan, you are not a deviant if you eat a side of bacon every morning. Food is food. Some food has better nutrients than others. Some food has caloric levels more suited toward your nutritional needs. Fat is not the enemy. It will not kill you to eat some steamed vegetables on a daily basis. Natural doesn’t mean healthy because arsenic and anthrax are both naturally occurring substances and pharmaceutical insulin and naloxone aren’t.
I don’t believe that everything happens for a reason. I believe that there is no divine plan, no great cosmic joke and that the universe is “chaotic neutral” at best. I don’t believe that diseases have anything personal against the people whose bodies they invade. I don’t believe that obtaining health care is “waging war”. Diseases, like the weather, are not capable of feelings. They aren’t sentient and they have no awareness of themselves or of the person they inhabit.
That’s why I get so angry when I hear the words “Lost his battle with cancer” or “She’s not going to let lupus win”. That makes it seem like it’s a moral or physical failure to die of something that exists exclusively to continue with its own action. It’s not trying to kill you, it’s trying to do the thing it’s supposed to do. There are some interventions available to slow down or cure these things but it’s no real surprise when it doesn‘t stop.
“Look on the bright side, it’s not cancer/some other disease with a high mortality rate. You should feel lucky you’re not terminal.”– Person with an opinion about a stranger’s life
Yes, I am super-duper grateful to not be dying even though I absolutely do not want to live with MS. (I remain unconvinced that what I am doing now with MS is even close to living, but that’s a story for another time.) I had depression, and I had suicidal ideations and having a difficult time coping with anything and a stranger wanted me to be thankful that I wasn’t dying of a terminal illness.
These people weren’t worth the assault charges. I was too tired to fight with them. So I just smiled and said “I guess you’re right,” and then found a way to get the hell out of there as fast as possible. Because there was always a sub-group of the Brightsiders who knows they have a cure/read a thing about a thing/had a cousin’s friend’s neighbour’s aunt who “cured” her MS with this thing.
My personal favourite: High doses of anti-oxidants to boost their immune system.
Newsflash: MS and every other auto-immune disorder ARE a boosted immune system. These diseases are what happens when your immune system is “boosted” all to hell. How in Chalupa’s name is “boosting” a rogue immune system a good idea? It’s not. But anti-oxidants don’t actually boost your immune system, so go ahead, drink all the açaí berry juice you want.
The only (long-term useful) advice I remember getting,
“Never go to bed with your makeup on.”– My mum
This is good advice. Your makeup doesn’t get on the bedding. It’s better for your skin and your eyes. Sleeping with mascara on can lead to weak lashes that thin and fall out. The waxes in many lipsticks and lip balms can cause blackheads around your mouth, which is gross. Sleeping with a full face of concealer, contour and foundation liquids and powders can dry your skin out. And that will make you look older than you are.
I’m not the vainest-of-the-vain but I stopped going outside at 18 years-old so I wouldn’t look a day older than my actual age. I quit smoking in 2007 in part because I noticed an unsightly “pull” line forming on my top lip. Never mind that smoking is terrible for your health, it also does terrible things to your skin. Using a makeup wipe before you fall into bed will help your skin.
“What other people think about you is none of your business. If you can‘t trust them, move on.”– 12-step program sponsor I once knew
When engaging in some “negative self-talk,” my first therapist encouraged me to ask myself, “Would I think that about my best friend?”, “Would I say that shit to my most beloved?”, or “Would I treat my spouse like this?” as a way of countering the way I viewed myself.
Putting my two best friends’ or my husband’s name to these questions has helped to end the pre-suicidal spirals I can find myself in on a day-to-day basis. Having chronic, unending, unwavering depression, on a scale of dove grey to pitch black mood, being able to grab the lifeline of “you wouldn’t say this to your kindred” has saved my life more than a dozen times in the past year. It’s difficult to remember that I don’t usually count myself among my most beloved.
When the noise in my head gets so loud I can’t think or function, Chris Evans, the actor who plays Captain America in the Marvel Cinematic Universe, advised to stop and say “Shhhh, just… shhhh” to quiet the brain noise that isn’t helping. I’ve taken that to heart.
Here’s the video clip I watched:
My brain makes all of the most useless noise. Sometimes I say, out loud and with feeling,
And (in yet another MCU reference) when my head gets loud and my cognitive skills are boggled and the MS Brain Fog takes over, I will say in various tones, inflections and stresses,
“I am Groot.”Groot
It’s a more verbose way of telling myself and my brain to shut the fuck up.
Pieces of advice I didn’t learn the truth about until it was way, way too late.
1. Remember that people are fallible.
This is the joy and shame of being human. Everyone has the potential to fail and be failed by other human beings. Some transgressions are forgivable and others aren’t. We get to decide on a case-by-case basis who gets a pass and who can get to steppin’. It’s impossible to apply a blanket policy to all people, all the time.
Except if they’re Nazis. Nothing good ever came from telling Nazis anything about them was understandable or forgivable.
2. Humans are really invested in the status quo.
The amount of power and privilege and comfort one has in the status quo is directly proportional to how hard they will fight to defend it. If someone is defending the indefensible, look to see what they would lose if the system fell.
You’ll find that it’s not necessarily that they aren’t for others having a good life (thought sometime it is, Nazis), they just want to make sure that others getting what they need doesn’t inconvenience or discomfort them in any way at all. Which is still really shitty, but the way many people operate? It isn’t right, and it’s inexcusable.
3. Psychiatrists know that there is no pill for most problems.
The first time I met with a psychiatrist, I told him everything that was wrong. He ended the appointment with one sentence,
“I can’t help you.”
He wrote me a prescription for a common SSRI and said,
“There is no pill to cure most of what’s wrong with anyone. Try this prescription for the depression, have your family doctor monitor it, and find yourself some counseling.”
Turns out, you can’t successfully medicate (legal-drugs or otherwise) yourself out of a shitty existence except if you die. I know this for real. I promise it’s true.
4. “Make sure your partner is your best friend.”– Someone with no friends outside their partner
I have a best friend. I have a spouse to whom I’ve been married to for 13 years. He is not my best friend, but I do like him as a friend. Best friends are best friends. Life partners are life partners. There are a set of issues that I take to my best friend that I couldn’t and/or shouldn’t bring to my partner.
There are life realities that I can’t or won’t bring to my best friend. My best friend and my spouse are two different people who serve two different purposes in my world. One of the best lessons I’ve learned in this life is that I can’t be all things to all people, ESPECIALLY those I am in close interpersonal relationships with.
I am one big pit of extroverted neediness. I can’t pin all that need on one person. That’s too much for one human to have to deal with. So I pick my people carefully and do what I need to do to tend to my relationships to keep them healthy and balanced.
5. “Just be yourself.”– Person who has never dated on the internet
I’m ah… an acquired taste. I can’t be myself around people I don’t know because my humour is black, dirty and full of sarcasm and pop culture references. This does not play well with larger audiences. If I don’t know you or I’m trying to get you to give me a job, I treat you like you’re my grandmother. I won’t swear. I won’t regale you with stories of where I’ve been and I won’t kiss and tell. I will have no more than two drinks in an appropriate social setting with you. I will under no circumstances “just be myself” around you until I know you better.
That’s not to say that I lie about or hide who I am until I’m “in”. It’s not like I’m a Nazi-loving misogynist trying to get in good with the boss so I can fuck shit up. I’m generally a good person who has dealt with life’s traumas in the healthiest and funniest way she can. And that way isn’t for everyone.
When I was diagnosed with MS, I was immediately offered one hundred different kinds of advice. I should immediately go on a low-fat diet. I should immediately have my fillings removed, except I’ve never had a cavity in my life. I should immediately get an enema, find a chelation clinic, undergo bee sting therapy, meditate with crystals, find Jesus, prepare to get divorced, and/or start putting together my permanent disability application.
In response to the public declaration of my diagnosis, I was given all of this advice. Strangers offered most of this advice, but people I knew were also unhelpful. People I knew offered up platitudes like “But you look so good!” I believe that platitudes are a form of unsolicited advice, offered when a person is confronted with someone else’s feelings, They are unprepared to deal with that person’s feelings but they feel like they should say something that sounds vaguely positive and hopeful. Because positive thinking fixes things, right?
Here’s my unsolicited judgmental advice on what to say when you’re confronted with someone else’s feelings. What you want to say is something helpful and positive. What you should say is NOTHING. If you must, acknowledge that you’ve heard the feeling. Ask if you can help in a very specific way – like offering a ride to an appointment, or coming over on Thursday night with some Thai food and the Absolutely Fabulous box set. But don’t fucking bright-side someone who’s angry about the prospects of a shitty life by offering a yoga retreat and strict vegan diet as a possible solution.
Unsolicited advice is always offered as a form of judgment.