Living Well with MS – Poetry and MS with Nurse Educator Josie Crawley | S7E21

Release Date: October 8, 2025
Host: Geoff Allix
Guest: Josie Crawley – Nurse educator, poet, person living with MS
Podcast: Living Well with Multiple Sclerosis (Overcoming MS)

Episode Overview

In this episode, Geoff Allix speaks with Josie Crawley, an associate professor in nursing and published poet from Dunedin, New Zealand, about her experience with multiple sclerosis (MS) and the role of creativity—especially poetry—in navigating and making sense of life with MS. Josie shares personal stories, reads several of her poems on diagnosis, living with MS, and the complex dance of disclosure and resilience. The discussion weaves together practical strategies for well-being, the challenges of aging and working with MS, lifestyle adjustments, and the healing and expressive importance of poetry.

Key Discussion Points and Insights

Introductions: Josie's MS and Creative Journey

• Josie’s Background ([01:23]):
  • Registered nurse, associate professor, counsellor, published poet
  • Diagnosed with relapsing-remitting MS 23 years ago, in her late 30s
  • Family: two grown sons, supportive husband, large extended family
  • Poetry predates both her nursing and her MS:

    "I was a poet for a lot longer than I’ve had MS. I started when I was about 9… They amused my little sister a lot." (Josie, [02:21])

Poetry as an Outlet: Expressing and Processing MS

• The Poem "A New Lens" ([02:55]):

  • Written for the MS Society of New Zealand for World MS Day, about the protracted and uncertain diagnostic process
  • Captures the sensory, existential, and family impacts
  • Memorable excerpt:

    "...the diagnosis took months, years before it stuck – a new lens through which the world looked more challenged, more managed, less spontaneous, more dependent. The future now a gift rather than an expectation." (Josie, reading poem [05:00])

• Why Poetry? ([06:42]):

  • Helps health professionals and patients process trauma, avoid rumination
  • Provides a safe space for "hard to handle" feelings
  • Plays with language and metaphor to gain control and make meaning

  • "Poetry lets you capture... something that is hard to deal with and helps you really focus on that thought and pull the emotions in... sometimes it lets you then let it go." (Josie, [07:09])

• "Abuse by Metaphor" ([07:45]):

  • Poem critiquing how metaphors like “the hug” misrepresent the pain of MS symptoms

  "Some saddest poet penned a heartwarming phrase for MS terror where breath is stolen, wrapped in ribs, sculptured in unyielding steel..." (Josie, [08:08])

Adapting Home and Work Life

• Strategies and Support ([09:09]):

  • Leveraging nursing knowledge for self-care and adaptation

  • Flexibility: part-time schedule, ergonomic adjustments, breaks, working from home

  • Family routines to support both mobility and togetherness, e.g. walking 15 minutes to work with her husband

  • Role of yoga and headstands for energy, and “joy of missing out” on exhausting activities

  • "One of the symptoms... is like electric shocks in my hands. I found that wearing very, very fine leather gloves can really help with that." ([10:22])

  • On balance:

    "Family first. For me it’s family first... Wednesday is off. Wednesday’s beach day and I go to the beach with my husband." ([13:09])

• On Guilt and Parenting

  "I felt quite worried and guilty that I passed on those genes to them... but actually children with a parent with a disability tend to show really increased empathy." ([12:52])

• Poem for Her Husband: "You and I"

  >"The quiet bond of a shared glance / Complicit smile... Arms wide to let our children fly. I reach you, hold you, tuck me in, touch your side. You and I." ([15:34])
  

Discovering and Following Overcoming MS

• Personal Research ([16:03]):
  • Diagnosed after a year of uncertain symptoms
  • Avoided unhealthy coping and researched lifestyle changes
  • Found OMS (Overcoming MS), influenced by “Taking Control of MS”
  • Adjusted family eating, increased health-conscious habits

    "It seemed to me that being able to take control over some of my personal behaviors... I could be as healthy as possible while living with MS." ([17:12])

Aging and MS

• Navigating Aging ([18:46]):
  • The challenge of distinguishing symptoms of aging from MS
  • Importance of the OMS pillars for organ health, mental function

    "I don't feel old inside, just some of my functions have been letting me down a little bit... The Overcoming MS pillars put people in the very best starting place for things like avoiding dementia." ([19:10] and [20:54])

Swimming and Exercise as Meditation

• Swimming Practice ([21:37]):

  • Swims three times a week, a kilometer each time
  • Describes sensory joys and mindful noticing

    "When you jump into the water, it’s like jumping into a cool sleeve of champagne bubbles... and you can feel that delicious cool sink in about 1cm all over." ([22:22])

• Poems on Swimming ([23:18]):

  • "Confluence": being at one with water, light, and land

  "...Timeless trinity: water, sunlight, land. Reflect, refract me... A poem of movement, harmonious joy at one in this place lit above, below." ([24:20])

  • "Wednesdays": the struggle of disability within exercise

  "Laps three and four, I contrive with constant denial, struggle, panic..." ([24:54])

Walking: Challenge and Joy

• Walking in Dunedin ([25:28]):
  • The beauty and frustration of movement with mobility challenges
  • Describes adapting each step, learning from physiotherapists, and the importance of assistance

    "To walk independently... I generally need light. If I walk in the dark, my knees really ache. I do avoid uneven ground at night." ([26:35])

  • Family support:

    "...my sons... help me down, they'll go in front of me and I'll use their shoulders like a stabilizing walking pole as soon as it gets steep or downhill." ([27:23])

Balancing Family, Career, and Self-Care

• Finding Balance ([28:16]):
  • Early years of parenting and MS: "any sense of balance was impossible"
  • Now carves out time for reading, yoga, swims, and private rituals like saying her mihi each morning

    "Working three days a week, yoga at work, Wednesday beach day with my husband... little routines that help you find balance." ([29:19])

  • Supportive husband helps her prioritize rest, reminds her not to overwork

Medication: Experience and Philosophy

• History of Medications ([31:32]):
  • Initially ineligible for treatments in NZ
  • Used methylprednisolone and later Copaxone; experienced ocular side effects and eventually switched treatments
  • Poem: "Well, Unwell" - about relapse

    "Familiarity assured its pace, tracing where it had been before, claiming limb after limb, stealing words from my mouth..." ([33:28])

  • Currently receiving Siponimod infusions, feels healthier

    "Nowadays, I'm on Cypri infusions every six weeks and I feel like me." ([34:45])

Disclosure and Privacy at Work

• Gradual Openness ([35:10]):
  • Initially told only colleagues, not students
  • Over time, shared in more detail, especially via poetry
  • Poem: "Diagnosed an Islander" ([36:16]) explores isolation, difference, and adaptation:

    "…no blueprint for tomorrow out there. For those not marooned on islands, the world speedily spins fragile plans with gossamer threads..."

  • Now intentionally models advocacy and resilience to students, planning scholarly work incorporating poetry and lived experience

Notable Quotes & Memorable Moments

• "[Poetry] lets you capture... something that is hard to deal with and then you can play with it until it feels like it's really caught what it is that you're feeling... sometimes it actually lets you then let it go." (Josie, [07:09])
• "Flexibility, celebrate the positive, choose where to put your energy, family first... Use your support around you." (Josie, [13:15])
• "Wednesday’s off. Wednesday’s beach day and I go to the beach with my husband." (Josie, [13:09])
• "The diagnosis took months, years before it stuck – a new lens through which the world looked more challenged, more managed..." (Josie, reading poem, [05:00])
• "Now I look forward to relaxing in that Lazy Boy for two hours and having my headphones on." (Josie, describing medication infusions, [34:48])
• "I'm really quite happy now for my students to know that I do [have MS]. I think I can have a role to help them and support them and to show that it's not the end of life if you are diagnosed with something – it’s an adjustment, a different way of doing things." (Josie, [38:20])

Key Timestamps

• 01:23 - Josie introduces herself and her dual identity as poet/nurse/MS advocate
• 02:22 - Josie reflects on poetry's place in her life and career
• 02:55-05:55 - Reads "A New Lens" poem about diagnosis
• 06:42 - Explains why poetry and narrative are therapeutic for MS
• 07:45 - Reads "Abuse by Metaphor"
• 09:09-15:34 - Describes family/work adaptations and reads poem for her husband
• 16:03 - Discusses discovery of Overcoming MS program
• 18:46-21:14 - Talks about aging with MS
• 21:37-25:12 - On swimming as meditation and poetic practice; reads "Confluence" and "Wednesdays"
• 25:28-28:07 - On the challenges and joys of walking with MS
• 28:16-31:16 - Discusses balancing family, work, and personal well-being
• 31:32-34:55 - Outlines experience with medications and reads "Well, Unwell"
• 35:10-38:36 - Privacy, disclosure, and role modeling with students; reads "Diagnosed an Islander"

Resources & Further Reading

• Poems by Josie Crawley are noted for their honesty and are available via PDF in the show notes.
• Listeners are encouraged to visit overcomingms.org/podcast for additional information and episode resources.

This episode eloquently illustrates the power of narrative and community in living well with MS, providing listeners with both practical strategies and a celebration of creativity and resilience amidst adversity.