Bittersweet Advocacy

I’m proud to advocate on behalf of Multiple Sclerosis issues, and I aim to normalize discussing human health experiences without shame. If we live long enough, almost all of us will experience big health issues, and learning from others is a huge help for navigating them.

I’ve participated in Bike MS, Meat Fight, Walk MS, and self-help group leadership. I write openly about my MS experience, I contribute regularly to MSAA’s blog MS Conversations, and I let my community, colleagues, and legislators know that I have MS. I’m happy to answer questions and have spoken to newly diagnosed people and family members quite a few times over the years. If I’m the only person they know with MS and they would like to chat, I’m there for them. They’ll have a unique MS experience, and I want to support them in their journey. I’m eager to encourage kinship, help where I can, and remove any cloak of shame regarding health issues.

That said... sometimes I get uncomfortable. When it feels like it’s putting me in a poster child position, I get emotional. Those are the moments when I am sad that I have MS and live a life where I have to deal with it daily.

While riding the Bike MS victory lap that celebrates and honors those of us with MS, I was proud to be there supporting the cause. I’m immensely grateful I’m doing well and can participate as an example of people living well with MS. I also got very anxious before the ride. People were looking at me, and they were cheering me on. Their kindness spurred a counterintuitive response in me.

My emotions went into overdrive with a mix of opposing feelings. I held back tears as I processed my feelings and tried to understand why it felt different from other advocacy efforts.  

Sure, I felt like I was on display, which can be discomforting, but I don’t think that was it. I think it was because I recognized the magnitude of what participating means to me. I was overwhelmed, feeling simultaneous pride for participating in a cause I support greatly and sorrow for personally needing MS-focused philanthropy to give me hope.

Just reading this last sentence aloud while reviewing and editing this post makes me emotional. MS-focused philanthropy gives me hope, and I’m sad I need it.

At the event, I was glad to participate in the ride and relieved when it was over. I liked being back among everyone supporting the cause and blending into the crowd again.

Friends with MS have expressed their happiness with how well I’m doing and have told me they appreciate my advocacy efforts. One dear friend and mentor who’d lived with MS for at least 20 years longer than I had lovingly called me a poster child for MS. She saw my efforts as giving hope and representing the cause well, and I greatly appreciate that.  I know my health is due to hard work and a lot of luck, and I hope to encourage and support others in any way I can. I also aim to learn and grow from every other person with MS I encounter.

I wasn’t unnerved when she used the term "poster child," because it was a one-on-one conversation, and I felt the love and admiration she exuded as she said it. I was honored to hold her regard, given how much she had comforted and inspired me through the years.

I’ve been living with MS and advocating for MS issues since 2008, and how I participate varies. I wish I could do more, but I consistently contribute in ways that align with my interests, abilities, energy level, and time available. There are plenty of ways to advocate, and it makes me feel good to give back to a community that has helped me so much. It’s bittersweet advocacy.

Intention & Expectations

Lately, I’ve been pausing periodically throughout each day to ask myself, “How do I want to show up today?”

It only takes a moment, just enough time for a brief inhale and exhale. It allows me to shake loose whatever thoughts are running through my mind and start fresh. I like to imagine I’m shaking a marked-up Etch-A-Sketch toy to create a clean surface ready for whatever I want to draw.

It helps me put myself in a frame of mind where I can be more compassionate toward people. I always want to be nice, but sometimes I’m too busy thinking about my own problems to notice how I’m coming across to others. 

Visible and invisible disabilities, trauma, loss, grief, turmoil, and mental health issues are abundant. The majority of people have experienced traumatic events, many people are currently living with difficult life circumstances, and some are just having a bad day. Remembering this puts me in a mindset to grant more grace when someone doesn’t behave well. 

When I ask myself how I want to show up, it helps me remember that I’m not at the mercy of circumstances and other people’s moods. It reminds me that how I act will influence how people respond to me. It helps me prepare for tough interactions and stressful situations. It’s helped me to listen more attentively, be more compassionate, and respond better when I’m not consumed by my thoughts. 

When I know I’m not at my best for whatever reason, it makes a huge difference. It shifts my focus from the thoughts in my head to my behavior, and then I have the option to intentionally influence what happens next. 

In stressful times or when I feel like others aren’t considering my needs, I know I need to work harder to avoid reacting in ways I don’t like. It doesn’t mean I need to be perfect, just responsible for my behavior. 

Aiming for perfection is impossible. I know, because I tried really hard to be perfect for a long time. It was a lesson that I needed to learn to be happier.  Perfection is amorphous and relies on what other people think. Being true to myself and behaving in ways I’m proud of in most moments are possible goals. They also just so happen to be behaviors that tend to be appreciated by others. 

There have been times when I’ve half-jokingly said, “Most days I try to get along with everyone else, and today was their turn to get along with me.” It’s a way for me to grant myself grace when I wish I’d done better, and it’s an opportunity for me to do better next time.

Vision & Values

I created a vision board years ago that included images of women doing yoga poses I couldn’t do. I attended yoga classes weekly, and I loved how it combined calming breath work with some of the gymnastics, athleticism, and flexibility that my Multiple Sclerosis issues had curtailed.

I placed the collage vision board near my makeup vanity, and I didn’t put a lot of effort into tracking it. About a year later, I looked up, and I was startled to realize I could do all the poses on my vision board! Without realizing it, I slowly worked my way toward poses that seemed completely out of reach a year prior. Dancer, feathered peacock, and crane pose had become regular movements in my yoga practice without any periodic notice or celebration. With this realization, my glee absolutely overflowed.

Looking back, I think about how dreaming and acknowledging my aspirations, combined with regularly showing up to yoga class, were the key. They helped me achieve things I hadn’t been convinced I would ever do. 

While it sounds like it was simple and potentially easy, it took a lot of juggling to make sure I made it to class each week. The competing demands of adulting made it hard to do something that seemed like it only benefited my physical health and ego. It cost money that could have gone to savings or other things. There were always more demands at work and home. MS fatigue reared up often, and the desire to do nothing was enticing. It was emotionally taxing to repeatedly choose to make yoga class a priority. Work and other people were always wanting more, and my body never seemed to get enough rest. Those were the days I intentionally evolved from always putting work first to balancing it with my personal well-being. 

Since my MS diagnosis 18 years ago, I’ve become firm in my resolve to put health as a high priority. I’ve made progress, yet I still find myself having internal debates.  I’ll assume judgment from others and mentally prepare detailed justifications for putting my emotional and physical health before work, relationships, and other commitments. I know I’m replaying perspectives from my youth. I learned that work ethic was the highest goal, and sacrifice was admirable. Let me be clear, no one else is saying any of this to me. I pre-empt any questions or conversation by providing my reasoning. I’ll explain why I’m making a choice that doesn’t align with work first, family second, everything else except me third, and personal needs last. While my reasons are potentially unnecessary for the people I’m telling, it’s good for me to say them out loud. I also reason that it’s good to model healthy behaviors and encourage others who wrestle with this issue. 

Inconvenience reveals our values. I want colleagues, friends, family, and everyone to monitor their health and say no when needed. Sure, it takes surging efforts and problem-solving skills to figure out how to navigate unforeseen absences or changes in plans. Yet I always want people to be where they need to be when they need to be there.  

I think being responsible shouldn’t be defined as always sticking to a plan. It’s having backup plans, sharing knowledge, building teamwork, preparing others to be able to get by, and helping out when others need it, if plans have to change. It’s knowing when it’s time to shift plans as a group effort to accommodate the well-being of ourselves and others. Our collective health and happiness rely on each of us to incorporate and accommodate our individual needs where possible. 

Taking time to dream of what can be, in any aspect of life, is a great first step toward achieving better things. Envisioning what’s possible and living our values makes for a path worth traveling.