Adjust your sails!

When the winds of change shift, adjust your sails!

Six years ago I was diagnosed with MS - I was at the height of my career, working 100 hours a week as an internet executive. I was living large.   Although, in retrospect, there were signals that indicated I might have MS – I thought it was fatigue from work, falls from clumsiness, etc.  It was a routine eye-exam that set off a sequence of diagnostic tests - CAT scans, MRIs, EVP, etc.   Within a month I was diagnosed with probable Multiple Sclerosis and with a rare cancer – Multiple Myeloma.

The symptoms progressed quickly and within a year I was classified as having Primary Progressive MS.

I went from walking, to a cane, to needing a wheelchair outside the house, in 2 years. It has been a MAJOR life change. Quickly, I learned I could no longer work full-time.   I am now on Social Security Disability. But as someone who has worked hard all my life, as a teacher, political staffer, and news editor I have kept my mind occupied with volunteer work.  Currently, I am a child protection advocate for an internet website.

Within my home, I can still get around with a cane or with “wall-walking”.   When I want to venture out I find freedom through a scooter or my power chair.  I don’t look at these aids as a hassle – rather – they are signs of my independence!  They allow me to continue to explore my city – Seattle – to travel, to visit museums, aquariums, theaters, and all that life has to offer.  I continue to travel around the country.  It requires planning – but is quite doable. 

My passion for photography is my creative outlet – and having MS and cancer gives me a sense of gratitude of the beauty that surrounds me.  When I feel low – as we all do at times – I find solace behind the camera.

Yet, the thing in life I most love is sailing. My favorite book is "First you have to row a little boat" by Richard Bode. The quote, “When the winds of change shift, adjust your sails” is from that book. It has many lessons for life, not the least of which is to enjoy the journey - give in to where life leads.   So often we all “fight” the wind – struggling to be what we once were.  I have learned to go with the wind.  I believe that God expects me to make the most out of what life has brought my way.

So, I have adjusted my sails; I am living my life as fully as is possible, tweaking things as I go along.

For many years, I crewed on a magnificent sailboat out of Cape Cod.  As my disability increased, I was no longer able to hoist the sails, but that didn’t prevent me from doing what I love most in this world.

These past few summers I have once again been able to be at the helm of the 78 foot Schooner Liberte. My friend, its Captain, Chris Tietje, had rigged a way for me to sit while at the helm, although I am able to stand for a bit.  It is exhilarating to be in command - to work WITH the wind, the tide and current - with destinations in mind, yet willing to change course if need be.   We have so little control over MS – and in the end – over so many things in life.  Yet we are able to control our direction, our focus and our perspective.

None of us know how MS will affect our future.  It is often this unpredictable nature that is the hardest to contend with.   I realize that the time may come when I will have to content myself to be a passenger onboard – but just to feel the wind in my hair and sun on my face is more than enough for me!  To continue to do that which I love is life-affirming.

It is more than a "positive" attitude - it is a conscious embrace of life. When my body fails me, I will find a way to sail on! To do otherwise would deny who I am.