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Not Giving In or Giving Up

Jennifer “Lizzie” MacDonald is clear that she is not conventional when it comes to societal norms. She is not afraid to feel her feelings, including sadness, frustration, and pain. “There will always be a struggle in life,” she says. I am not going to give in or give up, but show up each morning and be authentic to myself and others”. Instead of sugar-coating a hard life, Lizzie highlights the beauty that comes from stepping out, embracing her feelings, and being honest. She can then experience the joys of the good days more vividly. She expresses herself in essays, social media, and paintings. One of Lizzie’s paintings hanging in her home says, “The fiery spirit inside will NEVER go out!” That spirit twinkles in Lizzie’s eyes.

Since her teenage years, Lizzie has lived with pain from multiple progressive rare diseases that make each day unpredictable. Taking charge of her health through diet and exercise has resulted in less pain and empowered Lizzie to do more on her own. Short hikes to access the outdoors and revisit her favourite places are now possible. “Control is overrated,” she says. “Feel your feelings; there is beauty in stopping and not ‘doing’ if that’s the day your body needs. My real goal in life [through writing and teaching yoga] is to learn to give hope without being fake.” Lizzie greets each day with honesty and hopes, by her example, she can give permission for others to do the same. One of Lizzie’s soon-to-be-published essays, “Appreciating our Differences”, ends this way: “If I look up to the sky and the trees and feel my feet on the earth, I don’t mind and know whatever that race was; I would come in dead last is a myth. I win my race Every. Single. Day.” Showing up and being real is truly all one can hope to do.

What is your definition of “defy convention”?

I have the SideStix poster hanging on my bedroom door, like a reminder! I’ve had so many of my specialists of the past couple of years say to me, “We can’t believe that you’re even alive”, so that’s defying convention! It really feels like I’m defying convention every second of my life. I have a take-charge attitude and positivity, but it’s not a toxic positivity. I’m really real about how I struggle with having multiple progressive disabilities. I’m constantly adapting. One thing, especially in American culture, is that people don’t believe in being sad. I think people think that constant happiness is equal to “life goals”. I will get sad, and I’ll cry, and I will shake my fists at the heavens! But then I rest, I rejuvenate, and then I try to figure out how to take on this new challenge. I don’t always understand the timeline, and it doesn’t mean it’s fun, but that doesn’t mean I’ve given in or given up.

A lot of people in my lifetime kept expecting me to get better. I don’t have something that they understand. I’m never going to get better, and that’s part of defying convention: leaving those people behind and finding people who understand that I might not get better, but I sure try hard.

Jennifer MacDonald

What is one of your most cherished memories?

When I got my SideStix nearly two years ago, I realized that my healthy hiking friends went really far, and my very physically disabled friends couldn’t go hiking at all. So I started to go hiking by myself, which is something I would have been too afraid of doing.

There’s a particular meadow that I used to hike to a lot when I was younger. I don’t know what it is, but there’s something about this meadow… it sounds kind of strange, but it’s the one place where I feel like I belong most in the world. There’s something about it that’s very magical, and a lot of people I’ve met hiking that meadow have the same experience.

In July 2019, I got the stamina to go to that meadow, and I kind of went off the trail and sat by a tree and just cried, because I never thought I would ever get back there again. And you know, even though there are pictures of it online, it was just the fact that I had made it that day, and I just sat there and really soaked up the experience. As far as becoming disabled, it makes me lose a lot of fears of doing things alone, because I have a different body from everyone I know. My function fluctuates daily. I may wake up and not be able to make a plan because I just might not be able to go that day. That moment of just sitting in that meadow gave me so much appreciation for not being afraid to hike alone.

Jennifer MacDonald

What is your favourite thing to do with your SideStix?

The outdoors has been so important to me throughout my life. My family was not an outdoorsy type family. When I was in college, I took a job at an adventure girl scout camp that only had electricity in the kitchen and cold running water for the staff showers. I didn’t know anything about camping or anything, but that summer I realized how important the outdoors was to me. Losing my access to the outdoors was really hard on me. The person who introduced me to SideStix had told me about her hiking adventures, and I couldn’t wait to get started! Even if I’m not going to go 20 miles in a day ever, it’s just being able to have that access. It’s really meaningful.

The company I work for is based in southern California, and our marketing director flew up to Reno to take some pictures of me doing life with my SideStix. We went to this park with a lot of hiking trails, and he told me to look up at the sky. I just broke down in tears because I realized, in that moment, how momentous it was that the outdoors were accessible to me, even if it’s not necessarily how I wish it was. I felt kind of dumb, because I had just started working for this company! But there’s this picture of me looking up at the sky, just realizing that that’s gratitude, you know? It’s not about having things, it’s about the ability to be in a place that means so much, and SideStix gave that back to me.

Tell us about a time in your life when you felt the most powerful.

A few years ago, I’d quit my job because I was having a lot of health issues. I kept falling down the stairs in my house and breaking bones, so I went and lived with my family in Texas for about a year. After a while, I knew that wasn’t going to work for me, so I needed to advocate for myself, medically. I was labelled with depression and anxiety and was taking meds, and I finally got a psychiatrist in Texas who told me I needed to go live my life and advocate for myself authentically. I really held on to that, so I got off all my psych meds, packed up my little car, and drove west. Instead of coming back to Reno, I just drove all the way to the Pacific Ocean, because I just felt like I needed to, and I just sat outside. I felt really powerful. My body gave me a break for 10 days of that drive, and I just felt really powerful. That interstate is a dangerous highway, and when I would stop for gas or water, I walked in there with my cane like I was six foot seven. When I got back, I just started advocating for myself. Someone said to me, “You don’t owe your doctor loyalty, you only owe them your co-pay”. And as I started advocating for myself medically, I started advocating for myself in my life. It was a whole string of events. There was just something about that 10-day drive all alone. I never would have done that before, and I just felt really powerful. It wasn’t my plan, but it was a really magical time.

Jennifer MacDonald

What’s the best thing you’ve learned from living with a mobility challenge?

Within the CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) community, a lot of people lament about wanting to walk again. They’ve got those metal walkers and they’re walking, but their previous level of function was a lot higher. With a lot of physical therapists, their goal is to get people walking with a walker, which is what they did for me. They call that “successful”, but I’m like, “I could hike 20 miles a day 10 years ago!” When you’re living with a disability, walking again is a great thing, but it’s not the goal. I think the greatest thing for me was learning that using mobility aids is okay, and having the proper ones is not only okay, but they’re going to make your life more fulfilling, and freeing, and joyful! The day I got to throw out my aluminum walker, I was like “Woohoo!”. Sometimes it’s hard, because disability discrimination is real. No matter how upbeat my attitude, people still look at the braces on my legs, and my wheelchair and my crutches, and I get the whole “I feel so sorry for you, your life must be horrible” thing. But the thing is, proper mobility aids are freeing. Get past that mentality of just wanting to walk again –I was in it too, because that’s what physical therapists push a lot! Proper mobility aids actually give you freedom, even if it’s a different kind of freedom.

What is your favourite thing about your SideStix?

I love that there are so many options. I’m not hiking in super deep snow all the time, so I bought the sand shoe feet and the spikes. A couple of months ago, I did a very icy hike that was up a very steep hill, maybe an 850 foot incline in one and a half miles. Coming down, it was just pure ice! If I were to do it again, I’d have these spikes to hold on, so I wouldn’t be sliding. I just like that you can change so many things about them, and they’re comfortable. They’re just comfortable. I like that I can adjust the grip, for my arthritis. I don’t get shoulder fatigue.

Another thing that’s fun is the SideStix community. I’ll post on Instagram about SideStix and other people that use SideStix around the world will comment! It’s almost like this community of people who all have different reasons for using them come together.

Jennifer MacDonald

Are there any new habits or practices that have changed your life?

I try to practice self-care every day. I’m hesitant to use the phrase“self-care”, because people think of self-care as getting a massage or a pedicure or something. To me, it’s about eating healthy, stretching, or validating myself. To me, self-care means taking charge of my health, validating myself, making sure my medical professionals are listening to me, and getting in tune with my mind, body, and spirit.

I’ve finally embraced that resting is not laziness. I know a lot of health influencers are like, “Get up every day and do your 800 hours of cardio before you get started with your work day, then come home and cook a homemade meal for your family of seven”. That’s exhausting! It’s okay to stop. My body physically made me stop, so please stop before you all end up with chronic, horrible diseases (laughs)! I see people running themselves ragged, and I want to teach everyone the beauty of stopping. That doesn’t mean you should take a vacation in the Bahamas, but just stop in your daily life.

Do you have any advice for other crutch users?

If you have the financial ability, get something that feels good to you. Use them to the best of your ability. If they don’t work for you and your everyday needs, maybe use a hybrid model of assistive devices. Use them, and use them proudly! Don’t hang your head. I’ve had people say awful things to me, but I just know that they have their opinions, and it doesn’t mean I have to embrace them. If your crutches help you get around, use them proudly, and just go for it!