The vastness of the teams of medical professionals with whom we have (at least) annual contact to manage multiple sclerosis (MS) is staggering. There are general practitioners and neurologists, as well as a slew of nurses from doctors’ and specialists’ surgeries to infusion nurses, MS-specific nurses, nurse practitioners, and beyond.
As for technical medical staff, there are the seen and the unseen. From blood tests and MRI scans to physiotherapy, occupational therapy, and getting braces fitted … for each person we work with directly, there may be three or four with whom we do not. The same is true for pharmacy staff.
And then there is our support network of family, friends, professional assistance, and patient advocacy organizations to consider. For each of us trying our best to live well with MS, there are scores of people upon whom we rely to help us do what we can while we can as well as we can for as long as we can.
But at the end of the day, when we really think about it, we’re in this boat alone.
Like a Solo Sailor, We’re Supported but Alone
A local man left our little port town last week to head out on the Golden Globe Race. Heralded as a race of “23 sailors, 30,000 miles, nonstop, alone, with no outside assistance,” this is not the type of around-the-world race we might be familiar with in modern times.
These sailors will have to use only technology that was available to Sir Robin (William Robert Patrick) Knox-Johnston on his voyage to be the first person to solo circumnavigate the globe nonstop, in 1968–69 (other than hull design, which is allowed to be updated to 1989 safety specifications).
It was this local sailor's departure to spend approximately 250 days alone at sea with only occasional radio contact with family (when conditions allow) that made me think of our personal voyages with MS.
Like the sailors who will step into their boats alone on September 4, we too set sail on a solo voyage on the day we were diagnosed with MS.
We Plot Our Course, We Measure Our Progress
Don’t get me wrong. The long list of those who support us with which I began this piece are of great importance to our journey. They give us as much support and offer us as many resources as is possible or practicable to keep us safe, happy, and well. But, as any solo sailor knows, “they ain’t in the boat” with us.
Be it forecasting our own weather, plotting our course with intuition, or gauging our progress using the stars and instinct, it is up to us to use the skills and knowledge gained over a lifetime before MS and since to get us through the heavy seas and becalming stills that will fill our days ahead.
We will acknowledge the medicos, friends, and family willing us on from beyond our personal horizons and thank them for it. But we are alone in our boat.
That boat, of course, we must maintain and repair during our voyage. We get only one vessel with which to sail our course. If we do not treat it well, the next storm may do more damage than if we had kept it in good order.
The Journey Is the Goal, Not the Winning
I suppose the most important thing I learned from our local skipper, Pat Lawless, is what he does with the weeks and months alone at sea. “It gives you time to think about what’s important,” he says.
Modern solo sailing technology can get a person around the world in under 80 days. The sailors headed out next month don’t put winning at all costs on the list of why they are doing this race. It’s about the adventure, the challenge of living alone, within the space of a 32-foot boat, and getting through anything and everything that the environment can throw at them.
I have forgone the idea of “winning” when it comes to what many in the non-MS world would consider important in life. My idea of success is more akin to the journey these brave men and one woman are about to endeavor.
Just like them, I intend to make it to the end in one piece, to live my voyage truly and fully, and to make use of this time to better myself, so that at the end of each day, I can say that I am a fuller person for whatever it is that has happened to me.
Wishing you and your family the best of health.