I just got back from an awesome vacation in Hawaii. Before arriving, I’d made the decision to attempt the hike up Diamond Head Crater in Honolulu. I knew the paths weren’t paved, but figured with my crutches and a good pair of sneakers it’d be doable. Here’s a little context so you can better understand what hiking Diamond Head entails:
Elevation: 761 ft. Round trip up and down the crater is about 1.6 miles.
Those are just the stats. Here’s what that hike actually meant for me, someone disabled: 1.6 miles of dangerously uneven and unpaved terrain––the kind that crutches can slip on. Not only was it all uneven and cracked, there was gravel, so the ground was not firm. If the crutches started to slip, I started to slip. The crutches are extensions of my arms, so of course I’d probably fall if they moved from under me. Not only was the ground uneven, there were tons of stairs. There were railings for the stairs, but stairs nonetheless. Let me put it this way: I may’ve been able to hike up, but just by looking at the path, I knew there was no way I could bring my wheelchair. Besides the steep stairs and crappy terrain, the paths were too narrow. I knew by doing research beforehand that the trail wasn’t accessible, but I didn’t know just how much it wasn’t accessible. Not until I could actually experience it myself.
Plenty of people saw my triumphant Instagram photo at the summit, but they had no idea what it cost to make it there. Maybe another time we should talk about the tendency to share the positive “end results” on social media rather than the sometimes negative, painstakingly slow progress of what it took to achieve those results. I’m guilty of that, I’ll admit. Well, not today.
I’d heard that the hike was difficult for anyone (someone non-disabled), so imagine just for a second what it was like for me. In case you can’t for whatever reason….it was tough. Really, really tough. It didn’t so much put strain on my legs as much as it did my feet. A quarter of the way up, my feet were already throbbing and aching. A lot. Thank goodness I decided to remove the lifts that are usually underneath the lining of my sneakers before hiking. Those lifts hurt my feet and heels after a day of normal-level activity, you think I was gonna wear them hiking up Diamond Head, especially when I don’t hike often? Nope. Not only did my feet hurt like hell, but I also had substantial pain in and around my ankles. You guessed it, that pain made it hard to walk, much less walk up a freaking incline.
Eventually, I sat on one of the very few benches for respite and to drink water. I didn’t want to rest too long, fearing that my legs would get stiff. While the lookout spot had pretty sweet views, I knew it wasn’t gonna measure up to the view at the summit. My boyfriend was with me and asked if I wanted to turn back, as he watched me catch my breath.
“We’re so close,” I said. No way in hell was I gonna turn back after so long and so much effort. Told myself if I made it that far, I’d finish the damn hike.
Let’s rewind for a minute and talk more about my journey to the summit. Got a lot of encouragement from fellow hikers, including a group of people who literally applauded and others who said things like:
You got this!
Keep going!
I salute you.
Mind you, this was at the beginning. I simply said thank you, focusing most of my energy and concentration on where I was putting my feet and watching my step. The ground was so uneven that I was afraid of twisting or spraining my ankle.
Told my boyfriend I was gonna keep a tally of the amount of compliments I’d get during the hike. No, I wasn’t kidding. I counted. I got over 15 compliments from different hikers. By the 20th compliment, I was honestly getting a little annoyed. I was just trying to complete a hike on my vacation, like everyone else there. I was getting praise left and right. It was almost like they’d never seen a disabled person complete a hike before (eye roll). Lemme guess, the whole thing “was inspiring”, right? Disabled people don’t exist to inspire others, or for that matter, to make non-disabled people feel better about their own lives. Can’t we just exist for ourselves?
As I ascended, I was reminded of something my pediatric surgeon once told me that I’ve never forgotten…
You don’t have to be the hero. At the time, I was just an impressionable teenager, soon graduating high school. Definitely looked up to my surgeon and admired him. Those words had an impact on me. My surgeon was right. I didn’t have to be the hero in high school, and I don’t have to be the hero now. Despite what the cynical voice in my head was telling me, I had nothing to prove to the other hikers. I wasn’t there to prove anything to anyone. Nothing about my physical abilities or anything else. I wasn’t doing it to be someone’s daily source of inspiration and wasn’t planted there to make them feel good for praising me or encouraging me. I hiked Diamond Head for me, nobody else, and I wanted to complete the hike in peace.
Don’t get me wrong, I really struggled for some parts of it. I didn’t mind the compliments in the beginning because it was freaking difficult. The entire thing, from start to finish. Felt like I earned those early compliments in a way, because let’s face it, the hike would be easier to a certain degree for someone non-disabled. That’s just the reality. By the end I got so frustrated under the heat and exhaustion and strain that I kept snapping at my boyfriend when he was just trying to be helpful and supportive.
You’re walking too far ahead of me.
I need your hand.
I need your arm.
Why is the ground so fucking uneven?!
When we finally made it to the summit, I was so frustrated that I didn’t really enjoy the view. That’s why I was sure to take pictures, not to brag or anything, but literally so I’d remember what the view looked like in the future. I could feel that I wasn’t really taking it all in. In fact, all I could think about in those moments was how I was gonna get down.
Fortunately, the descent was much easier than the ascent. One challenge, though, was that I was so fatigued and drained that it was harder to watch my step. That’s when we encountered a nice couple also on the path.
“Do you need any help on the way down?” the kind man asked. I wanted to say yes. Would’ve hated to be an inconvenience. A burden. So at first, even though I really wanted the help, I said no. When he asked again, in a different way, my body was telling me I was just exhausted. I just wanted to get to our car in the parking lot, sit down in the air conditioning and drink more cold water. My worn out body told me to abandon my pride. Stubbornness, perhaps. So I accepted his help. With my boyfriend on one side and this kind stranger supporting me on the other, we continued our descent down the path.
That’s when we encountered another hiker. Tall, with broad shoulders and a spiky haircut. I could tell he was over enthusiastic by the Cheshire cat grin on his face. “Wow! You should be so proud for even attempting this!”
Again, I was so tired that I basically ignored the guy. My feet were aching and in a lot of pain. My ankles, too. Actually, I really wanted him to get out of my way so I could continue to the sweet relief of sitting in an air conditioned car and drinking an ice cold soda. Yes, for some reason all I wanted to drink after some water was a can of soda. Not the healthiest of choices, I know, but I was giving myself a break. Cutting myself some slack: a rarity!
“I think she went all the way up to the top.” I wanted to thank this woman, the kind man’s partner. But I was breathing too hard, my heart was racing too fast. I was too worried about falling, with both my arms around another person’s shoulders.
“Oh my God!” the Cheshire grin guy said, in that same cringeworthy, over enthusiastic way. “You know what, I’m gonna take a picture of you to send to my friends. You’re awesome!” Before I could say anything, before my fatigue would let me, the stranger snapped the photo on his phone and went along his merry way.
Ok. Let’s unpack this. If you’re thinking that it was wrong of this man, this stranger I’d never met, to take a picture of me on the hike, you’re absolutely one hundred percent correct. Not only was it wrong, I thought it was pretty gross. First of all, he took a picture of me without my permission and second of all, I was completely exhausted and in no mood to be a prop for some inspiration porn photo-op. Not to mention, he also was gonna send it to his friends?! Sir. I do not know you. I don’t know your friends. Why are you taking my picture?! No. Why was my regular hike being turned into some spectacle?
I should’ve stopped the obnoxious stranger, and I didn’t. All I could really think about, again, was that parked car with AC, and that can of soda. He snapped my photo and left. Notice how the only people to actually help me (besides my number one guy) were the kind couple, also tourists. Everyone else just paid me a compliment like it was their good deed of the day or something.
Attention, non-disabled peeps, DO NOT be like the overeager stranger with the camera. You don’t even have to pay me empty compliments. Be more like the couple who stopped to help me part of the way down. If you’re gonna help, be useful and be genuine…if any of that makes sense. I’m not saying I wasn’t appreciative of the comments. Not trying to be ungrateful or rude. I just have mixed feelings. This is ok. I don’t have to be positive all the time, every second of the day. Those closest to me can tell you…it’s not always bright positivity. Being disabled comes with its challenges.
In the end, I’m proud of myself for completing Diamond Head hike. It was probably the most physically strenuous activity I finished successfully since climbing Machu Picchu in 2003. As for that climb, let’s leave that story for another day.
The Spastic Diplege 