“Our battered suitcases were piled on the sidewalk again; we had longer ways to go. But no matter, the road is life.”
-Jack Kerouac
For people with disabilities climbing Machu Picchu is no longer mach-u ado about nothing. Sorry. Jason, my husband, has always been into puns and after years of eye-rolling, mixed with hidden guilty pleasure for dad jokes, I started joining rounds of pun-offs with Jason.
Puns. Eh, they were good enough for Shakespeare, they’re good enough for me.
I’m flying to Peru or maybe by now we’ve already arrived. I’m writing some of this before I leave and some on the plane.
We are visiting Peru specifically to see Machu Picchu, one of the seven wonders of the world. I really don’t do bucket lists but if I had one this would be on it. I have an idea of things I want to do and mostly do it when the opportunity presents itself.
Last year I found out Machu Picchu is finally wheelchair accessible. The opportunity opened a couple months ago, so we took it. We cashed in our flight miles for Peru tickets and here we are. Climbing Machu is something I’ve always wanted to do since I first heard about it at 17.
It’s been an inaccessible dream for years. In high school I knew I wanted to backpack the world as soon as I broke free from strict house rules that kept me within a 15 mile radius. I knew this for certain. But then the cruel joke came as soon as I graduated high school, my body was out of control and a mystery to be solved, requiring all my energy and time.
For years I’ve had informal discussions with some of my Bike for Kam friends who offered to carry me up Machu Picchu but when it became accessible I decided now is the time go.
With my body progressing more and more every day, and now living under daily chronic symptoms due to a second possible disease, I felt the urgency.
I guess I always do.
It’s been a year of big milestones. I turned 40 and we cashed in flight miles so I could visit Frida’s house in Mexico City, another thing I’ve always wanted to do. This year was also 20 years of living with GNE myopathy, my debilitating muscle condition, and in a few weeks Jason and I will be celebrating our 10 year anniversary.
Machu will be our 10 year mountain.
It’s been a year of great reflection and even grief — more than usual.
I’m getting older and every year time seems to scuttle past me at a feverish pace. Perhaps time feels faster because my body moves quicker towards death than most.
But I received an early anniversary gift, the gift of health. Sorta.
I didn’t want to jinx it but the last 3 weeks, besides a gnarly flu, I’ve been feeling decent. Many of my chronic symptoms have been on break and all I’m dealing with now is my muscle disease. I still feel like utter shit but compared to where I was (bed-ridden), I have nothing but gratitude.
If I do have an autoimmune disease (still on diagnosis search) most autoimmune patients experience highs and lows in their disease journey known as “flare ups”. I experience this.
I’m still dealing with a horrible stomach, not sleeping and chronic itching but the head-to-toe body pain and debilitating fatigue has been on break. I still have pain and a lot of fatigue from my muscle condition. Someone who is losing muscle will naturally start experiencing residual physical effects like localized pain and a lot of fatigue. This is really difficult, too but I’d rather deal with one disease than two.
My flight to Peru is 13 hours and I’m actually terrified. Add on travel time to and from airport and waiting 5 hours to get into our hotel room (we were early) and that’s 24 hours. My last international flight was in 2012 to Australia and that was difficult back then. So this trip will be a gauge of where I’m at and how much time I have left to travel.
In April we visited Mexico City and the five hour flight was grueling. It took me a month to recover from Mexico City. But I’m strong. I can push myself against no sleep, fatigue, pain, jet lag and this wretched body. Being resilient has gotten me this far but even resilience has a shelf life.
When we travel it’s normally on a budget which means we can’t do nonstop flights. This only exasperates travel but I do it because I have to.
If you’ve been following me you know traveling and experiencing life and different perspectives than mine is very important to me — way more than things. I’ve never been into things and live rather conservatively when it comes to “stuff”. We are savers and try to live a financially responsible life, avoiding debt like the plague. I’m also a notorious deal searcher and do everything I can to save, plan and budget our money.
I haven’t bought new clothes in over a year. I own 4 pair of shoes, all of them I’ve had for over seven years. I loathe shopping. Seriously. Loathe it. The only time I really splurge on myself is getting my hair bleached twice a year because I don’t trust Jason and I with bleach. Haha. But to save money we dye my hair ourselves every 3-4 weeks. It’s actually easy and I’ll share my trade secrets in another post. People are always asking.
For years Jason and I haven’t exchanged gifts on Christmas, birthdays, valentines or anniversaries because I tell him not to waste money on “stuff” as I would much rather save those pennies for a trip.
I wouldn’t say I’m cheap, especially if it’s for someone else but I often count myself last in the equation and can be quite cheap with myself. But these savings tips and racking up flight miles is how we financially survive traveling. We even only take one suitcase on every travel to avoid paying for two bags. Both Jason and I are very light packers. I usually pack a couple pay of sweats pants, couple shirts and couple dresses and toiletries. And that’s about it.
I’m currently looking for travel grants and sponsorships because I’m aware that I only have a couple or so years left to travel, so I’m doing what I can and doing all the traveling I can now. No doubt I’ll push myself until I can’t any longer but I feel the soft whispers of time breathing down my neck.
We save for the uncertain future but the caveat is my body is dying so with all the responsible and logical ways of living, there is also a spontaneous urge to live because I will never be as physically strong as I am today. Tomorrow, months, a year from now I will have degraded physically.
For most people traveling isn’t work but little fuss is needed compared to what a disabled person goes through.
I don’t want this post to ramble on too long so I’ll save my harrowing flying tales for another time. But in short it’s mostly a dreadful experience and some hiccup with an airlines or something always occurs.
Airlines and the general public do not understand what people with disabilities have to go through just to fly. Disabled people have no rights when it comes to flying and you’re mostly treated like you’re a second class citizen just because you need extra help. Airline staff are almost always untrained which means the experience is always sloppy, painful and even dangerous. The spaces on planes are horribly tight and cramped, making transferring almost impossible and painful. And I’m small. I can’t imagine people who are bigger than I and what it’s like for them.
Bathrooms? Forget about it. I have to hold it or become a story of the cabin. I’ve tried once going to the bathroom on an international flight in 2012 and they basically wrapped a curtain around me and the vestibule area right before the bathroom and I had to take my pants off there and, I don’t remember, but somehow we squeezed in their pantry sized water closet of a bathroom. I’m not even up for trying it now. I don’t want Jason to have to deal with that so holding it is easier. I’m so much weaker so not even sure how we’d stuff my jelly body inside their bathrooms but it sucks. There is no consideration for people with disabilities.
The stories I have are unreal and I could go on for days about the ignorance and lack of understanding of what accessibility means. As of late, due to the progression, I seem to swear I’m never going to travel again post travel. It’s too hard. I’m tired. I’m in pain. But I don’t seem to give up so easily and sign myself up again.
Time is my greatest motivation.
Sitting is usually painful no matter if I’m in a wheelchair, laying down or on a plane. I’m never comfortable. This is probably too much information but I’ve lost butt muscles which means when I sit my cheeks spread out so I’m actually sitting on my tailbone most of the time and it can be excruciating.
When I travel my body doesn’t even sense time change. I mean, I get jet lag but with all my other issues jet lag is the least of all my traumas.
But I’m grabbing onto life even when it seems life has forgotten me.
I’m sure there are many people who think I’m crazy and feel I should live a very careful, docile life one hundred percent of my days. But they aren’t me and I’m not them. They are not experiencing the gravity of my life and how it feels.
If I am to be completely disabled then I want to live my life in the moments when I’m physically at my best.
I’ve never been interested in living a long life. I mean it’s great if I do but If I had to choose between a long boring life and a shorter inspired life, I’d choose the latter.
I’m not living for 60, 70 or 80 years old, I’m living for today. I’m living for the next 2, 5, 10 years and focusing on doing everything I can today. I have the rest of my life to not be able to do things.
I don’t think it’s any secret what is going on. I’m desperately seeking freedom. At times there is a desperation to my decisions, a controlled desperation, but nonetheless some form of it is usually sounding off an alarm inside me.
I think we think we have time. But time is abstract, it moves different for all of us in our perception and longevity. I’m not dying but sometimes it feels like it and not in a sad way, but more like a reminder that I have some more living to do until it’s all taken away.
It is important for me to keep challenging myself so I stay in the game. To have things to look forward to. To live out the parts of who I really am at the core, parts that get repressed because of my health.
I’ve lived with this disease for half my life. There are so many things it has taken from me. So many decisions and dreams taken from me without my consent or choosing so I live my life when I can.
If I didn’t challenge myself I’m not sure I could’ve survived. I probably would’ve given up by now. I need to experience. I’ve never been the type to lay on the couch and fill my days with TV. I’m not into a style of living where every day is a routine and the same, and if that was my complete life I imagine I would fall into a deep, dark depression. I’ve been at the bottom of the barrel with grief and depression before and all I can say is if I don’t actively work to keep myself engaged, the darkness that awaits is a dangerous one. I’ve seen it.
My greatest mobility lives in my mind and in my passions and I count on this to carry me through the years…and Machu Picchu.
My art gallery
Follow my wheelchair travels, art and mini-memoirs at Instagram.com/kamredlawsk and Facebook.
P.S. I’ve been up for over 30 hours so forgive me if there are many errors in this post. I’m going to sleep. Goodnight, world 💤