Balancing limitations and loss with new identities and aspirations

Ardra Shephard has gained a strong following for her blog, Tripping On Air, where she shares honest stories about her life with MS. Alkan Emin

Diagnosed with MS more than 30 years ago, Marie Heron says living with hope, with a dose of pragmatism, has served her well in pursuing goals. supplied

Ardra Shephard doesn’t hold much back when she posts on her blog, Tripping on Air: My trip through life with MS. She writes candidly and often comically about her good and bad “MS days,” her hopes and frustrations, and her views on societal stereotypes about people with disabilities, including multiple sclerosis.

The blog has grown in popularity since Shephard started it about four years ago. Tripping on Air has been named to “best MS blog” lists, and its Toronto-based author generated media attention earlier this year when actress Selma Blair, recently diagnosed with MS, became a follower.

Shephard has given plenty of thought to what it means to pursue goals and to follow the mantra of “live your best life” with MS. Developing a new purpose when the disease changes your life is emotionally healthy, she says, but she cautions against becoming ensnared in the idea that you can “do it all” – if you just have the right mindset.

“The message is often: think positively and don’t let MS define you,” she says, while noting that images of “young and healthy people with MS doing athletic things, smiling and happy” can sometimes lead to unrealistic expectations and a feeling of failure.

What has worked for her? Shep-hard says she works on acceptance and pursuit of goals that make sense within her limitations.

“For many people, MS makes life very difficult. But a difficult life doesn’t have to be a sad life,” she says. “We have to recognize we can’t necessarily overcome all the challenges, but we need to find workarounds and figure out how to manage them.”

Shephard was diagnosed in her early twenties; initially, her symptoms were some vision loss due to optic neuritis, as well as mobility problems. In the years since, she has dealt with the ebbs and flows of different symptoms, periods of recovery and relapses, and a gradual decline in her mobility.

“I think of MS as a series of different diseases in a way – it’s not like you get diagnosed and that’s the disease you will have for the rest of your life; it’s a constantly moving target,” says Shephard. “I think it’s unhealthy for us to deny what’s happening when we get a new symptom, a new level of disability.

“It’s important to grieve the losses when they happen, but you can’t live there.”

As is the case for many individuals with MS, Shephard couldn’t stay with her career – in her case, in finance, and later as a singer. She has developed a host of new pursuits that have included writing her blog, volunteering at an art gallery, taking courses in languages and art history, conducting for a choir and travelling with her husband.

“I was very purposeful from the beginning to find work and activities that filled me up and helped me build a new identity outside my previous work. And I considered my own wellness, through fitness, exercise and good nutrition, to be my primary job.

“Another piece of advice for anyone leaving the traditional workforce: find a purpose and put that on project status.”

Marie Heron has been charting her path through life with MS for more than three decades and has pursued several purpose-driven projects – including her podcast, Truth Be Told, which has reached more than 800 followers since she began it 18 months ago.

As podcast host, Heron interviews individuals with MS, as well as physicians and others with expertise to share. Remembering the depression and anxiety she experienced in earlier years, Heron wants to help others deal with difficult emotions and learn strategies for managing their health and life goals.

She shares Shephard’s belief that living well means being realistic and being gentle with yourself.

“Pursuing goals starts with listening to your body,” says Heron. “That takes time to learn – to know when to push through and lift that weight or walk that extra block, and when it’s time to stop and rest – and don’t beat yourself up for easing back and putting your health first.”

Heron likes to share another message that inspired her. “One neurologist talked to me about the importance of ‘pragmatic hope’ in goal setting, and that resonated for me. Be optimistic and reach higher – while knowing setbacks will occur. That’s good advice for anyone!”

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