Friday, October 7, 2016

Not Your Usual Motivational Bullshit.


Motivating someone is hard. There are too many 'thought leaders' out there telling everyone who'll listen, 'If I can do it, anyone can!'. But it doesn't work for those who've lost everything. Here's how to motivate those who REALLY need it.
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I saw some rehab specialists today. First time I had actually, which is surprising, given how many different aspects of my life have been compromised by my Graft Versus Host Disease. 

Anyway, that's how I ended up walking up and down a ward, over and over. Apparently the magical cure to my debilitating cramps is walking... 
Who knows though, it could work. Worth a shot, right? 

So there I was,, doing a 6 minute walk test, putting up a number that I'd be ashamed of 5 or 6 years ago, when a lady I kept passing kept calling out to me. I didn't understand her at first, I thought she may have been delirious or something. But on maybe the 5th lap, when I strained really hard, I finally heard what she was saying. 

"It's so unfair... I used to be able to do that."

"Awww, why are you doing this?"

"It's so unfair..."

At first, I was embarrassed. And a little mad. I'd just realised they were making me gallivant my way across these halls in front of peoplew ho can't even get out of bed, yet alone do the things we take for granted, like getting up to go to the toilet. 

My next response. Annoyance. No, closer to Indignation. How dare she say it was unfair that I was doing "well" (most of you who are well bodied and young would agree that being able to walk a grand total of 300m in 6 minutes isn't exactly a portrait of good health). What did she know about what I'd been through to do this? About how the cramps which debilitated me at night and left me screaming, just begging for it to stop??

But I held that back when I remembered where she was. Unable to walk, even get out of bed after a stroke. It was exactly where I was years ago, as I was learning to walk again after my own transplant, as I tried and tried, over and over again to regain a semblance of normality. How would I have reacted to an indignant prick who'd tell me that they'd done their time, their fair share of suffering then? Not well.

But as I thought about what I should say, striding back and forth through the ward, I also asked myself how I'd have reacted to a pompous prick proclaiming, "I've done it, so can you!"

Not well either... 

That's the thing though. "Motivational speakers", "thought leaders" and "inspiring personalities" are all the go these days. There seems to be 30 of them for every one of us. 

It's all good and well when we hear their stories. I mean, if you're normal, or if you feel good about yourself and the world, they often can lift you up. If they can do it, anyone can, right? 

But if you're not in a good place, if you're suffering something devastating like this lady is... If you're facing a chronic illness or disability; something that won't budge, no matter how much you "positively think!" about it, or if you're depressed, and miserable about yourself and the world, it literally feels like these people are saying you're just whinging, ungrateful or inferior for your suffering. That you're weak because you haven't been able to get over it, like them. 

It doesn't help. It literally makes them feel more down. It discourages them, the very opposite of what's intended, when you're not well. I know, I've been there, and I've hated hearing those things too. 

What should you say, you ask? 

Well, it depends on the person. There isn't a one-size-fits-all solution. 

But what do most need? 

Encouragement is one thing. Acknowledging that their pain is real, and important to you, is extremely important. It's vital. No matter how much your mind may say otherwise, no matter if you're a doctor, nurse, or just a friend who's watched on as someone going through much worse just grimaced and got on with it, and are now dealing with someone who thinks their world's just ended or someone who tells you they have nothing to smile about, their suffering is real and just. 

Who are you to say their pain isn't pain? 



I can honestly say that depression, and this chronic illness (not just the horrible aspects of it, like the cramps, but how it makes me feel about myself and what I can do) has been harder to face than every single battle I've had with cancer. 

At least with that, I had an end in sight. Something to work towards. 

At least in that, I had my mind on my side. 

So don't tell someone like her, or anyone else who's really down, for any reason, that they should be "grateful because some poorer soul out there is suffering more"... Again, ask yourself how that helps. You've literally given them no way to get through their pain, just told them, in this case, intentionally, to their face, that they're weak and ungrateful and don't deserve to feel the way they do. 

How then do you give someone something to get through their struggles, when those struggles seem so deep? 

Well, I think letting them know that it is gonna be hard, that it does, and will suck at times, is vital. It doesn't kid them, it doesn't give them an overly rosy perspective of the journey to come, and contrary to what you may think, when you're facing something terrifying, and are at rock bottom anyway, it prepares you. And gives you only one way to look, and think. One way to go. Up! 

After this, show them that though it is a long journey, you can make it easier. There are hundreds of little tips and tricks, things that take only minor changes to your habits, lifestyle and mindset, that'll help you get through things easier. 

Facing long rehab? Like you're just trying to get up and out of bed for the first time in hospital, or for the first time in a while when you're depressed, rehab? 
Do those exercises that seem to take everything out of you in the evenings, or mornings, when you're about to shower anyways, or do it right after food, when you're most energetic. Get the pros to help you. Get them, or get others who know (the internet and chat rooms can be a great resource to help you do this), to give you the easy ways of doing things. The rehab physicians I saw today gave me exercises to do while sitting down at a chair! Perfect for not just my cramps, but my exams coming up soon (God help me). 





Ask a friend to help you, commit to something you can't easily skate out of, and you get others on your side in this battle.  
Indeed, if you're in a position where you're trying to help someone, get them someone they can look up to! Someone who may have been through something similar to them. You may not be able to fathom what they're going through (and I believe this doesn't mean you can't help), but there will always be others who can! And they can help so much... That was certainly the case for me... When I was going into my first bone marrow transplant, I was terrified deep down, until I saw someone who'd been through it too. Just seeing them gave me a sense that this could be okay. That the pain and misery in my future did have an end point. And the chats we had throughout it, the tips and tricks and encouragement she gave me just stuck more. There are so many tools out there, set up by the government, hospitals, foundations and just the internet that connect people together. Even if you can't find the right words, right away, someone out there can! 

Feeling like it's not working? That all the work you're putting is getting you nowhere? Or that getting better is so long away? 
Give it time. But give yourself something to work towards. Look at the big picture, what this is all for, and give yourself a goal. An end point, something to keep you marching forwards in those hard times. Make it a long term goal. One that you can keep yourself accountable to by setting smaller achievements to accomplish. Write it down somewhere. Post it to Facebook, and make yourself accountable. 
Make that reason for going on an ideal; something greater than you. To care, or take away the suffering of your loved ones, to work for others, or something you believe in. And by doing this,  and you rig your mind to not just look at the big picture, but place getting there as one of your top priorities. 

But if you're feeling like giving up, then the last, best thing you can do is to let yourself be human. Believe me, you'll feel like giving up, or that it's pointless, or that you'll never get there many times on your journey. Whatever you're accomplishing is hard enough when you're normal and facing so many external hardships, yet alone when you're facing internal ones you feel like, or you physically can't control. I've done some crazy things in my time, and so many people call me an inspiration for many of them. 





But the truth is, I've given up on so many things too. I've told myself, "Why bother exercising when I'm gonna get sick and lose all I've gained anyway? When I can't even do half of what I used to," so many times now, it's not funny. And I've succumbed to those too, along the way. 

But it's when I'm pushing myself too hard that I do this. When I tell myself "Anything's possible" and set myself on something that, halfway through, feels impossible to me, I lose hope, and feel like giving up. 
Which is why acknowledging to them, or yourself, that there will be hurdles, obstacles and failures along the way; that your goal may take months, or years to accomplish is so important. 
It's why telling them, that their goal, their deepest desire may not be fulfilled isn't disheartening. Because giving a shot and trying, even if it brings only small comfort will still matter, if not to them right away, then to those they love. 
It doesn't discourage you, if done right. If these are acknowledged, but you're also given ways of getting through those hurdles, or at least, assurance that help and friendship will be there when trouble comes, it actually makes you more likely to succeed. 

And I guess that's at the heart of what I always try to say. 

Do I believe you can do anything you set your mind to? 

Well, if you're well of mind and body, and if you're afforded the opportunities you deserve (which many, including the poor, women and other marginalised populations aren't) then, barring the impossible-according-to-the-laws-of-physics, yes. 

But if you're not, it can be much, much, harder. 

You should never impose your beliefs and values onto others; especially those who may need your help. 

But that doesn't mean you can't. 

And I hope I've given you one way to try and do that. 

So what did I tell her? 

I told her that I'm sorry for her pain. That I could only begin to imagine what she was going through. That it must be horrible.

But then that I myself had been at a low point once myself. That I'd seen others who had been through what she had, and recovered. 

That I didn't know what was possible for her. That I did know there would probably be times you feel no difference, that you may go backwards at times, that you may wanna quit.  

But that there is an end goal that you can and should aspire to. That this could well be the very thing that gets here there. And that she was in the best place to get her there.  

I wish her the very best. 





















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