One in four adults in the U.S. are living with a disability, but you wouldn't know it given the lack of representation in media, Hollywood, and the workforce. We're shedding light on the real stories — not the caricatures — of this dynamic and vibrant community of individuals. Read more stories from our Voices of Disability series.
Today: A woman with an undiagnosed disability, which has impacted her nerves and walking ability. She wants to feel peaceful, happy, and strong — both physically and mentally. She spends time outdoors as often as possible. She says she experiences the greatest insights when she spends time observing nature.
Occupation: Etsy Shop Owner and Dog Walker
Salary: Varies, about $15,000
5:30 a.m. — The alarm goes off. Even though it’s too early, I let the buzzing wake me up. My boyfriend and I planned a rock climbing trip, and want to get an early jump on the day to beat the heat. Although we both are highly motivated by the prospect of sunrise outdoor activities, we move quite slowly getting out the door. Luckily, I had the foresight to make us grab-n-go breakfast tacos and iced coffee in a one liter Cotopaxi bottle (which was free from an event) last night. We’ve found we feel better and perform better athletically when we eat a healthy breakfast. That’s why I packed eggs and bacon wrapped in corn tortillas. To make the meal, I use eggs ($1.89), tortillas ($1.29), bacon ($2.99), Cholula hot sauce ($2.74), coffee ($9.99), and heavy whipping cream ($2.99).
7 a.m. — We hike to our climbing spot. I have some severe back pain on the drive to the crag. I hike to the wall we’ll climb with my forearm crutches. I can tell my body definitely isn’t feeling tip-top this morning. I decide to tough it out.
11 a.m. — Not every day you decide to tough out chronic pain is a good one. Every athlete has an off-day, and today was one of mine. One of the hardest things for me in my wellness journey has always been recognizing when I need to just turn away from something. I hate giving up on my goals, whether it’s a hike or climb. I feel like a failure when I don’t fully finish. But using my best judgment, I know it’s not a good idea for me to try this more difficult climb at my skill level. As hard as I try to push past all my mental and physical challenges today, it isn’t working. Reluctantly, I ask my boyfriend to lower me to the ground, and we pack up our gear. My boyfriend says he is proud of what I accomplished. I don’t understand. I didn’t finish my climb. However, he knows how hard it is for me to acknowledge my limitations, and he’s proud of me for climbing smart and playing it safe. Acknowledging my vulnerability is a strength, he says.
Daily Total: $21.89
7 a.m. — Although I often reach for my phone as soon as I wake up to check messages, update social, or go over my to-do list, I refrain this morning. At least once a week, I try to allow myself a morning to lie still and enjoy being lazy. It’s even better for me mentally if the morning I allow myself to be lazy isn’t planned. I’m not a very spontaneous person, but I’ve tried to get better at it. It feels good to listen to my body, read the moment, and do something that wasn’t officially scheduled.
11 a.m. — My boyfriend and I go to the gym. I have a VASA Fitness membership, for which I pay $10.59 per month. To be honest, I don’t get much satisfaction out of gym workouts. I’ve always preferred getting my activity in outside. However, I’ve realized recently that I need to up my training game for the sake of my athletic pursuits.
11 a.m. — I cycle through several upper body exercises, targeting the muscles that will assist me in rock climbing. Then comes the dreaded leg workout. My undiagnosed condition that has affected my mobility has caused me a lot of nerve issues. While I’m grateful I can still use my crutches for short distances, I rely on my wheelchair to get most things done. I have better function in certain leg muscles than others, and my boyfriend has been working with me on isolating and strengthening those muscles to give me better ability and endurance when I climb. It’s difficult to stick with it when you can’t see visible progress day to day, but I tell myself that it will pay off in time.
7 p.m. — I make dinner at home. To be budget-smart, I pick up some steak on final sale ($4.40), two green peppers ($1.58 each), and some sour cream ($2.29) at the store. At home we already have an onion, corn tortillas, and homemade taco seasoning. I throw together some simple (and tasty!) fajitas. It always makes me feel good when my loved ones enjoy the things I make.
Daily Total: $18.86
1 p.m. — I run some errands. After I stop at the post office to mail a completed order from my Etsy store, I head to the grocery store. I top up on a few items I’ll need for the next few days, and spend about $19.72.
The process of budgeting groceries and executing the plan of that budget is satisfying, but the shopping can be challenging for me. I had an eating disorder for several years and the grocery store can provoke anxiety. However, when I get home, and prep food, it helps keep things in perspective.
5:30 p.m. — I’m winding down for the night, and decide to take out my forearm trainer ($7.95). It’s a round, rubber, donut-shaped device made by Black Diamond. I didn’t climb today so this will be great for some targeted exercises. The device has helped me increase my grip and finger strength for climbing, which is important because one of the things my disability caused was diminished hand function. I go through several reps while enjoying The Office on Netflix (subscription $8.99 per month).
Daily Total: $16.94
6:30 a.m. — It’s another early morning of rock climbing. Yesterday, my boyfriend scouted a zone with a crack he thought I would enjoy scaling. Upon attempting it, I find it’s still outside of my skill set. I feel discouraged and frustrated. I want to figure it out and not give up, but I just don’t have the experience yet.
I move to another part of the crag and attempt something a little simpler. I lead climb this route and finally feel some success. It is such an incredible feeling. I love having him join me at the top of the climb. It feels like a very special closeness with him. I feel pride in myself, and in him for all the work we’ve put in to get to this moment together.
Daily Total: $0
5:45 a.m. — I’m meeting my boyfriend’s family in the mountains for a two-day camping trip. We wake up early so we can go climbing at a new area on the way. I’m eager to get out the door, and my patience is wearing thin. I know I need to continuously work harder to be more flexible and spontaneous in life, but this morning I’m not finding that balance. My boyfriend does something very rare for us these days: He pays for breakfast at Burger King. Potatoes are one of my comfort foods, and he knows it. The crispy brown bites, combined with an iced coffee, bring my spirits up before rock-climbing.
8 p.m. — We’ve been at the campsite on the mountain for about four hours now. We decide to start a campfire as the temperatures begin to drop. Everything about a campfire is soothing to my soul: The challenge getting it started, the smell of the smoke, the crackling sound, the warmth when there’s a chill in the air. I get lost staring into the flame, watching it like it’s a living thing. I feel at peace.
Daily Total: $0
7:30 a.m. — I love waking up in a tent. I always feel so lazy, though, because it’s so cozy. I don’t want to get up. Once I finally get my day started, I visit with my boyfriend’s family while waiting on our eggs and bacon to cook up. I attempt to make some coffee over the morning campfire coals and fail miserably. I decide to just make a small pot with the Jetboil coffee press ($11.26) because I’m getting desperate. The day doesn’t start for me until I have a cup of coffee. It’s not about the caffeine as much as the ritual. It’s comforting.
1 p.m. — On our way to Bryce Canyon National Park for our family activity, I get some really terrible news about my home business. I want to immediately leave the trip and go deal with the issue. My boyfriend tries to help me realize that I can’t change anything today. We came all this way to spend time with his family, but now I feel like I can’t be present. We drive into the park. I have an America the Beautiful Access Pass for the National Parks. It’s a free lifetime pass for citizens with a permanent disability that allows me to get our entire carpool vehicle in for no charge (saving us $35). Most of the family decides to go on a short hike that would be tricky for me, particularly in the midday heat. My boyfriend and I decide to hang out in the shade and enjoy the scenic overlooks.
6:30 p.m. — My boyfriend’s stepbrother expressed interest in rock climbing, so we take a detour to a nearby zone with some good established routes. The road to get there is very rough. It causes me a lot of pain because we’re bouncing up and down. It’s worth it when we get there, though. There’s a challenging yet fun scramble to get to the wall. I am able to help my boyfriend’s stepbrother and instruct him a little. It’s always fun to share a passion you have with others and watch them enjoy it too.
Daily Total: $11.26
7:30 a.m. — Lazily, we pack up our camping gear. The rest of the family is camping another night, but we have to get back to work. We have a relaxing morning with a successful pot of percolator coffee (it’s sooo satisfying!) and a delicious egg scramble, then head home.
2 p.m. — I’ve been out of reliable cell range for two days, so when I get home, I talk on the phone with a friend who I haven’t spoken with for a while. I confide in him about the bad news I received on Thursday. He has no solutions, but does offer comfort. I feel a bit better. I’m motivated by his words, and take some small forward steps to make sure the news I received doesn’t have a long-lasting impact. I tend to withdraw from people when things get hard. I’m glad I have stubborn friends who know to keep bugging me when they don’t hear from me for a while. There really is nothing like a strong community of family and friends when you’re having a hard time.
Daily Total: $0
Weekly Total: $68.95
Reflection: The best part of my week was climbing on Wednesday morning. Wellness is important to me, but overall I try to stay away from a specific "routine." My disability can cause my life to vary and change, and I have to be in tune with my body to know when I need to rest and when I can push. I used to be afraid to do anything for fear of pain or making things worse. But, eventually, I got sick of missing out. I just expect now that everything will cause me pain, even doing nothing. So, I’d much rather do something fun or interesting with my time.
Without a diagnosis I’ve learned to pay close attention to my body. How it reacts to activity, temperature, certain movements, and even tightness of clothes in certain spots. My mobility and pain levels are variable day to day. Without warning, I could have a major flare up during rock climbing. Sometimes I can adapt and deal with it, but sometimes I have to stop and have someone lower me to the ground. Managing my disability for me is simply listening to and responding to my body in the moment.
I choose to focus on how to manage my disability, rather than on why it’s happening. Eventually, the doctors might have answers for me, but for years, the stress of tests and appointments showing no results negatively impacted my health. I was getting no management from my medical team because they didn’t have a diagnosis. I felt alone. That’s why I had to take matters into my own hands if I wanted to have any quality of life in my twenties. I didn’t want to miss out waiting for answers that may never come, or may not come for years.
Edited by Kelly Dawson, a disability advocate who was born with cerebral palsy and has a master's degree in media communications.
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