It’s been over 5.5 months since I injured both my legs, and I still have over a month to go before my appointment which will take me (potentially only one step) closer towards finding out if I’ve really had Ehlers-Danlos Syndrome or not (which the more I research it, the more I’m surprised of, if nothing else, how many people have lived through surprisingly similar stuff as me) and there has honestly been a lot that I’ve learned. Some positive, some negative, but all of which can be used to either make you grow kinder or harder hearted.
- It’s Surprising What You Can be Secretly Confident/Proud Of:
I have never considered myself to have that strong of an upper body, (though a lot of people apparently thought I did since I’m short and stocky…) but I had always been proud of my leg strength. They honestly always felt like they were made of solid iron. I could leap several feet away with a flick of my ankle, I could jump off walls, my sense of balance was pretty awesome, and mixed with a quick reaction time, there wasn’t much I felt I couldn’t do with them.
Ever since the injury however, walking on them has felt like they were being supported by bones of shattered glass. They randomly start shaking and give out on me. I tip over, or roll my ankle quite often, and quite honestly, merely stomping, jumping, jogging, or bracing myself feels like a series of tiny fractures popping all the way up my leg at once.
Where once my legs were the force I could rely on, their strength now pales in comparison to my upper body strength… and I’m not gonna lie, that’s hard to take.
- You’re Gonna Still Feel Like You Should be Able to do The Things You Once Did, And Will Feel Like a Wuss for Failing:
There are so many times these days that I go to lift something that originally was barely even noticeable, only to find me having to put it down 4 steps later lest your legs collapse underneath you. And you mentally kick yourself for it.
Because you know “It’s not heavy” that “This isn’t hard.” that “If I just push myself I could do it.” But that’s your muscle memory talking… not your body.
I honestly thought that if you suddenly lost half your strength, trying to lift 25lbs would just feel like lifting 50lbs did. But that’s not the way it works. 25lbs, still feels like 25lbs, but your body will NOT carry it long before screaming at you for being an idiot trying to carry it across the yard.
- The Pain is Not the Worst Part:
People don’t like pain… I have come to discover this… I don’t like pain… this is why, when I discovered people don’t normally live in chronic pain 24/7 I felt kinda jipped/furious! But the fear of pain will always be worse than pain itself.
If you live in pain long enough, your body will start to try and mask it out. On a lower level this works fairly well… you may notice you have less headaches if you take a painkiller instead of having your body try and compensate (though you will instantly regret that decision once the painkiller wears off) but when the pain grows to certain levels, it turns into a maddening numbness.
If you have ever pulled an all-nighter, you may know what this feeling is like. It essentially feels like your brain is too big for your skull. Like the parts of your body are layered on top of you vs actually being a part of you. This mixed with the feeling like your body is honestly hollow (Like mentioned above) creates this very surreal and rather unpleasant feeling that honestly, I would rather live without.
The worst part of all though, is when your body just “Gives out.” it’s not that you’re tired. It’s not that you notice your muscles aching because you’re pumping so much stinking adrenaline… but you’ll be walking along and suddenly *BAM* it just tries to collapse under you. You try to pick yourself up again only to find it doesn’t work… it is such a helpless feeling and honestly you feel ridiculously vulnerable during it. It is hard to take.
- There Really is a Bias About Guys and Manual Labor:
This one’s gonna get me in trouble… but I’m sorry… it’s real. And it’s frustrating. The amount of times people look at you like you’re the scum of the earth because you can’t be the uber strong guy doing uber strong things is ridiculous!
Not wanting to touch on this too long because I feel the angry mob forming outside with every word I type, but all I can say is this… the same way it’s frustrating for a girl to be told they can’t do ____ physical job, it’s frustrating to be told they’d rather not hire guys for _____ mental job. I mean I have a diploma in business, am acing a BA in business, taught myself to hold a basic conversation in Japanese, am teaching myself programming, write essay length Facebook statuses on rather advanced topics that was asked to be turned into a blog (check out www.macyaks.wordpress.com for shameless plug), can write professional business letters off the top of my head, am able to manipulate large amounts of variables in my head at one time, basically think in Gant charts, am a certified Excel Specialist, and more! I have abilities! Please stop judging my worth by how many heavy boxes I can move in how short a time!
- There are Many Ways to Keep Moving:
Life changes… you find yourself struggling to do things that you couldn’t do before. You’ll find it hard to carry down your laundry, to carry in your groceries, to drive for long periods of time, walk on uneven ground… there are so many things that change so quickly… but that doesn’t mean you just roll over and die.
There are many ways to move forward. If you can’t push past something, look for a way to work around it. Put it on wheels. Go down one step at a time. Cruise Control is an amazing invention. Park benches are as well. You may have to give more thought, but you don’t have to give up!
- It is Alright to Admit It Hurts:
This is one of the hardest parts for me. It’s one I’ve struggled with for a long time. However, reading through life stories and testimonies of people suffering from EDS I’ve come to realize I’m really not alone on this.
It is alright to say you hurt…. in fact, if you don’t say you hurt, no one is going to know.
Some people will roll your eyes. Others may try to tactfully trick you into “Growing up.” but realize these people can’t live in your body. Nor can you live in theirs. We can say “I’m in pain.” but what does pain feel like? Do we all feel it the same way? Are we all used to the same level?
The concept that someone can live with a distracting level of throbbing/stabbing pain in multiple parts of their body 24/7 without having a visible injury or doctor’s note saying “Their bones are broken.” is ludicrous to some people. Their bodies have never worked that way…
But the thing is, if they just continue believing your body feels as healthy as theirs is, you’re just going to frustrate and confuse them when they wonder why you can’t keep up with the same activities they do.
Admit it’s hard for you. If they can’t accept that from you, they would’ve never accepted you in the first place.
- You Will Get MANY Mixed Reactions:
We live in a world of polarized extremes. “Invisible Disabilities” seems to be a word that drives people to their respective pitchforks and torches.
Half the people you talk to will cry out “You need to go to your government! And demand that they give you supplements! You need support workers! And medication! And we will rally with signs to protest for you! (which not gonna lie is kind of encouraging to have people fight so hard for you… even if in some cases it’s more they want to have a cause to get behind)
The other half will cry out about how “Kids these days are such wusses! You just need to get out and exercise! Get desperate! Light a fire under you backside and put your nose to the grindstone! Then things will look up! You just haven’t really tried yet!” (and admittedly there are times you want to slap these people upside the head and yell “IF EFFORT WAS THE PROBLEM THEN YOU GUYS WOULD BE FAILING MORE THAN I AM RIGHT NOW!” but honestly, they do mean well, and there are a bunch of people taking advantage of the system, but ya… tact people, tact)
The truth though is… you are what you are… they are what they are… people will either accept that or not accept that, but reality is reality…. Keep fighting to give your best, not to keep up with them, but because that’s how we grow as human beings! You are neither entitled to an easier life than most, nor condemned to a miserable one trying to keep up with others.
- Your Best is Good Enough…. (But it Will Rarely Feel Like It!):
You hear it a lot these days: “Just give your best! Don’t worry about the results! Just keep giving it your all and realize that things will always work out for someone who gives their best! Great things happen for those who give their best! You can accomplish anything if you only give your best!”
But here’s the thing… Just because you give your best… doesn’t mean you’ll hit the standard…
No matter how hard you try, a failing grade is still a failing grade
No matter how hard you try, if you go broke you go broke
No matter how hard you try, if you’re unemployed, you’re unemployed
No matter how hard you try, if you can’t afford food you starve
There is a reality that people rarely talk about… either the people who write these posts are lucky enough to never reach those points of worry, or they just try not to think about these parts. But these problems nag at you. And all the inspirational speeches in the world can’t compete with the frustrations you feel.
But here’s the thing. You’re still growing! You may not be able to deal with the threats that are stressing you out right now. But you are still growing! You’re growing wiser! You’re growing stronger! You’re growing more compassionate! Don’t underestimate what you’re earning through these times!
Our life experiences may not always be pleasant… they may be painful, and they may feel like we can’t get what we want. But if you just throw these moments away as “Wasting your life.” That is all you’ll have…. Years of your life that you’ve just thrown away, when you’ve learned so much through that time that WILL help you for years in the future! Don’t underestimate the value of what you’ve learned!
- God’s Still in Control:
You’re not here to please others. You’re not here to acquire great wealth or power. You’re not even here to survive as long as you can manage. These are not the keys to your success or failure! You are here to serve God and go where He leads. You are here to see the amazing things He can do through you.
Once again, this is a touchy subject because of the divide. Beyond the “Religion/IHATERELIGION” sides which seem to be growing more and more volatile these days, there is also, within the church the “God will give you everything/God wants you to provide for yourself.” Sides which grow further and further apart ever spurned by their fear of the other.
God will provide for you… I cannot begin to point out how many verses in the Bible point this out. Even the parable of the talents that many like to turn to as to say “LOOK! GOD WANTS US TO TAKE CHARGE AND MAKE OUR OWN WAY!” ….let me point out, that
- a) They did not “earn” money, they invested it
- b) The servant was not scolded for not earning money, he was scolded for doing nothing with his talent
- c) God was the one who gave them the talents in the first place, not them.
God will provide for us. God WANTS us to rely on Him. This is not to say, “Oh just C’est la Vie! Life will do what life will do, but God will save my butt no matter what I do!” no… the Bible is also very clear that that is ALSO not right…. But stop beating yourself up over what you will eat and where you will sleep… God literally says that He’s got that covered. (Full disclosure: I rarely sleep or eat for fear of these two so I am not condemning you as weak if you are worried about it, just reminding you of what’s promised.)
But realize as well, that God providing doesn’t mean He’ll prepare the path YOU want… in fact it usually means the reverse of that.
We like our control. Well… let’s be honest, I’ve never met a human in my life who is truly in control of their life so… we like our ILLUSION of control. Whether we’re being led by our emotions, our desires, our fears, or our idols, we like to believe we are the ones taking charge of our lives and plowing the way.
God doesn’t beat around the bush. He isn’t here to give you freedom and power to make your dreams come true. He is here to lead you down the path He has in store for you and grow closer in relationship with you in order to show you the good He can do through you as well as how much your dreams PALED in comparison to His reality!
Though the road may be scary. Though you may lose things you thought you could not do without. Realize He’s got you and He’s still looking out for you!
Don’t run off the road when things look scariest and you want to grab the wheel and run for where you think looks safest… those are the times you need to rely on Him most! Don’t make a dark situation even worse! He doesn’t just want to make you happy, He wants to make you mighty! He made you, He knows you, He loves you. TRUST!
- You Haven’t Lost Until You Give Up!
I used to say “You haven’t lost until you’re dead.” But this isn’t entirely true… There are many who did not succeed until after they died.
Don’t give up. The moment you do, it’s all over. But as long as you keep fighting, there’s still a chance you’ll succeed!
You’ve come too far to give up! We are far too limited in our perspective of the here and now to see just how the present will be used in the future… but nothing is wasted. No effort is useless. No life accomplishes nothing.
You are strong.
You are influential.
You’ve got this!
Hang in there