To Walk A Mile In My Shoes

These shoes are something special, but could you walk a mile in them?

They represent all things me and what I fight for. Recently, at multiple conferences, I not only got a ton of compliments on these shoes, but also on how well I looked and was doing. While I am grateful for the compliments, what it takes to make it through the good days is an unchosen resilience so profound, it is truly survival. The steps. They are methodical, figurative, and physically punishing steps. The mental load to determine my steps of survival is a daily battle. What it takes is genuinely unimaginable. So, I have to ask, could you walk a mile in my shoes? 

To walk a mile in my shoes means…

You go to take your first step, starting your day, only the start is a long drawn-out, “can we actually make it today” start. Feelings of wonder, wondering if it’s worth it to open your eyes.

Your eyes open but you can’t move because the excruciating pain from your back down your legs feels like a truck is driving over them while a crowbar pulls your joints apart. Your hip sits partially displaced. Only medical professionals can get it back in, but the cost-benefit analysis of money + my mental health of going to an ER + being accused of looking for pain meds is not a good ROI.  Today, you pick the agonizing pain. It has won this time, but it can’t beat you. You have too much to do!

Have you opened your eyes yet?

You know you must stand and move to decrease the pain. You take your second step of the day. Crack! Pop! Your joints get in better alignment, but you feel so heavy with exhaustion. Surgery is not for months. Counting down the days.

Have we made it to the bathroom yet? 

To walk a mile in my shoes means…

Your next step will probably take 50% of your day’s energy. It’s the third step of the day, moving toward the bathroom. You try to use the shower as a tool to wake up and start the day, but the vessels in your body don’t work, so as the blood pools in your feet, unable to return to your heart and brain, your legs and hands get even heavier. Oh no, I guess it’s time to sit. Is that chest tightening, heart sinking, heavy breaking a heart attack or are you just going to faint? Either way, gravity wins. 

There you are sitting on the shower floor. You haven’t even made it 10 steps today. You feel like you accomplished anything. You blame yourself, telling yourself you are useless, lazy, a burden. You have to keep going, Still think you can do a mile?

To walk a mile in my shoes means…

Taking your next step, you head downstairs, but you twist the doorknob and SNAP. Burning, stinging, shockwaves followed by a river of wildfire shoot down your arm. Maybe your shoulder is just out of place. Arm circle…POP! The biggest sigh of relief. You did it without the hospital. Wait, what is that hard spot when you massage your shoulder back to position? Oh that is just your first rib elevated and out of place. Don’t worry, it doesn’t hurt much, as long as you don’t use your arm!

You finally make it to the kitchen,  to attempt to make a small breakfast, because fuel is necessary to combat the deep fatigue throughout your body. Ugh. So many steps. You may have lost count. Five, now? Ten? Twenty? What are you forgetting? The brain fog sets in and you know it’s something. Did you start the laundry? Did you let the dog out? Did you take your meds? All 11 of them?

Obviously you did because a fire is burning in your stomach and heart. Is it indigestion? Are you going to throw up? Is it the other end?

How far do you think we have made it now? 100 steps? Not even close…

To walk a mile in my shoes means…

With your next step of the day, you finally make it to your work, only thirty feet from your bed. How many hours did it take? The meetings, the talking, the glare, the unforgiving throbbing begins to tap the inside of your head like an annoying younger sibling poking your last button. It settles in. Tap, tap, tap. You meet through the migraine, wincing and letting the floaty bubbles pass across your gaze. Are you going to use your sick time? Do you even have any left?

You can’t take it. The sound. The light. You must call it. But you haven’t even seen the sun today. Can you make it?

To walk a mile in my shoes means…

Choosing the activities to get out of pain and function vs. choosing the activities to help pay for your medical bills and general costs of living vs. choosing the activities that make you happy. It’s rarely multiple of them.  Finding joy in even the most lovely of moments becomes a chore. Joy is a gift, one that you don’t get to have. Your body steals it from you, the joy and the happiness. The life that you used to bring into the room, you can feel it slipping away. Who are you? This can’t be it. Do you have the energy to fight? That requires more steps. More methodical steps, and you haven’t even left the house!

To walk a mile in my shoes means…

Worrying every day that it’s going to be your next medical disaster, but trying to live your life as a thriving 30-something. 

To walk a mile in my shoe means….

Advocating for yourself all the time, but never knowing if the doctors will really hear you.

To walk a mile in my shoes means…

Even with years of practice pushing through pain, making me feel like my body is no longer mine, each day feels harder to trudge through than the last. How can I expect anyone who hasn’t had to live a life of unchosen resilience, to push through these daily adversities? 

Just one day. This is my normal. I seem “well” because I work hard to ensure my steps make it look to others like I could run a marathon, even though I probably can’t even make it a mile in my own shoes! 

Mackenzie Abramson is a Rare Advocate and Rare Patient diagnosed with Ehlers-Danlos Syndrome, as well as the Senior Manager of Research Program Communications for Global Genes.