This post is reprinted from the November 2022 newsletter of the Confraternity of Pilgrims to Rome, found here: https://pilgrimstorome.org.uk/newsletters/
I stood up at dinner to raise a toast and immediately knew there was a problem. I couldn’t form the words easily, and I stumbled and slurred as I tried to get the words out. When I sat down I was embarrassed and disappointed, and worried.
As I look back over the last couple of years before my diagnosis with a hopefully mild form of Motor Neurone Disease (MND) it strikes me how much of my involvement with the disease relates to my time on the Camino de Santiago and the Via Francigena, both projects of mine in my work as author of pilgrimage walking guides.
A beloved pilgrim friend had invited us to a banquet in Santiago de Compostela on St James Day 2021, and Theresa and I were in town for the festival and delighted to attend. After my problematic toast Theresa and I went to our room and began to strategize how we would deal with the worsening speech problem in the long term, and in the short term what to do about a live online interview scheduled for that same afternoon. We stopped at a cafe for a late afternoon espresso in hopes it would negate the effects of the wine I’d had at lunch – we already knew then that my speech deteriorated for up to 48 hours if I had anything to drink. I survived the interview with only minor speech problems, and by the next morning we determined together it was time to seek medical help.
After returning to the Via Francigena to walk from Calais to Lausanne I began working with my primary care physicians and neurologists in both Italy (where I live) and the US (where I’m from) to get to the root of my speech problem, which I’d first reported to my doctor about a milder version of in 2018. I underwent blood tests, physical examinations, an MRI of my brain, and nerve tests, all looking to see what was causing my symptoms. Motor Neurone Disease is diagnosed by ruling everything out, and by March my American doctor began labeling it Bulbar Onset Primary Lateral Sclerosis, a rare and mild version of MND that sometimes deteriorates to Amyotrophic Lateral Sclerosis (ALS), but often allows a normal life expectancy but with severely reduced mobility.
Even a few months later it feels like this diagnosis is not happening to me, but to someone else. I’m working to integrate my self-care into my pilgrimage walking/biking passion. The words of my Italian medico basso (primary care doctor) ring in my ears – ‘non allenarti troppo.’ ‘Don’t exercise too hard.’
For fourteen years, long distance pilgrim walking has been an obsession. When I walk I feel free, I’m in nature and feel real and whole, and I’m meeting like-minded people from around the world. Without fail, pilgrim walking puts me into a great spiritual space. However, as I look back over my 14,000-odd km past pilgrimage portfolio, I recognize that the long days of all-weather outdoor walking and cycling were sometimes tough on my body. Didn’t have enough water? Soldier on, walking thirsty. Didn’t have enough food? Tighten the belt. Didn’t get enough sleep? You’ll get it tonight instead. Have a steep hill ahead? Don’t complain. It’s good for your cardio.
On my first camino I lost 7kg in weight, and a similar figure is typical for me anytime I take my sofa-loving metabolism out for a weeks-long stroll. I’m coming to realize now that quick weight loss is a sign of deprivation, not health, and I need to put myself into a lifestyle in which my daily diet and exercise fit more smoothly with the pilgrim routine of long days of walking.
The lesson was brought home to me on a walk from Lucca to Siena earlier this year. Hot weather, long days, and inadequate attention to nutrition and hydration led to a first for me – heat exhaustion. I could hear it every night in my MND-affected speech when the slurring got extreme over dinner with my pilgrim friends. But this time, after 3 days of hot weather walking, my body told me to stop and let it catch up. With two days’ rest I was able to get back on the trail, but this time with a greater sense of appreciation for self-care as part of my routine.
Self-care while walking means always attending to nutrition and hydration, never pushing beyond my physical limits to make a distance goal, and truly listening to what my body is telling me. I long ago conquered blisters, but there’s a deeper physical obstacle that looms ahead whenever I allow myself to blindly charge toward my objective while forcing my body to endure. If there’s any gift of MND, it’s that I can’t hide my exhaustion when it comes. It announces itself in slurred speech. My mouth tells me when I’m at my limit, when I’m out of balance with the ingredients my body needs to maintain a healthy equilibrium.
Next month I leave for a group walk from Florence to Assisi and Rome and I know that now, more than ever before, I need to listen to my body. Take my time. Drink water. Eat well. Don’t be afraid to take a rest or to send my bag ahead. Be grateful for every day on the trail, because I won’t be able to walk forever, and every new day spent on a pilgrim journey is a blessing.
Amen amen and amen! Let’s enjoy the ride and care for the ‘donkey’. As the inimitable Zorba said ‘if it falls down we fall down’ … or words to that effect!
So sorry to hear about the set back. I hope you find cure and comfort soon. You will be in my prayers.
Thank you for your thoughtful, inspiring message. Keeping things in balance is hard but important work.
I wish you strength and courage with this diagnosis. I was misdiagnosed with ALS in 1999 and, while I was extremely lucky to have proved otherwise four very long months later, I will never forget that fear.
I pray for a cure, or at the very least—a way to arrest its progression. The ALS Association/MND is in my will and I will continue to work towards funding that cure. I hope it happens soon for you!
Wishing you all the best, Sandy. Mary and Lynn.
Thank you Sandy.
Are you planing on doing any guided tours in 2023 ? If so would you have room for my wife and myself?
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Indeed I am and I do. If you go to http://www.pilgrimpaths.com you can find the tours. Pricing will be added soon. We’d love to have you join us!
Thank You Sandy.
My wife and I would be interested in doing the Florence to Assisi walk
OK, excellent, Joe. We will include you in our publicity mailings and hope to welcome you aboard!
Sandy, I’m sorry to hear your diagnosis – and heartened by your wise response to listen to your body. You’ll be in my prayers. BTW, we met years ago in Seattle at Taproot Theatre where I was the producing artistic director. My 2018 camino was instrumental in my process of choosing when to retire (i.e. recently!). I hope to do my second camino in the near future.
Sandy, I’m sorry to hear about your health challenge but “listening to your body” is a skill that the Camino taught us well. I hope you and your docs navigate the coming process well. You’ll be in my prayers. (BTW, we met several years ago at Taproot Theatre Company (Seattle) where I was the producing artistic director. My 2018 trek on the Camino Frances was instrumental in my wife’s and my planning to retire.)