MPNforum Magazine

Early morning coffee. Sitting on the worn porch steps in the new sunshine, air fresh still hung with dew.

Before the day actually kicks in,  this is normally a contemplative time.  But the morning’s emails had jolted me awake.  Reports of people reaching out, terrified, newly diagnosed.  A father in despair, out of options,  contemplating suicide.  A woman fearing for the life of her daughter. Behind each voice, each email raw nerves buzz, electric with frustration,  dark with pain, and fear.

The black bamboo bordering the porch has grown overnight.   The morning dew reflects  the rising sun, lighting up small crystals, points of light among its dark branches and new-born green leaves.

Points of light illuminate our own MPN community.  Despite grim enough periods of darkness and  isolation, against a background of shadowy fears and dark premonitions, weariness, pain, itching and brain fog, we are not isolated. There are bright points of light encouraging us along the way.

Not only are our private MPN demons shared by others, there are caregivers, doctors, friends and generous souls lighting up the darkness of MPNs, offering hope and support.

Some organize events to raise money, to sign up blood donors or stem cell donors. Some buddy with other patients, others offer advice, referrals, prayers on-line.  Some bring all their energy and intelligence to care for a single person with love and compassion. Some are physicians taking on the burden of outreach and education in addition to clinical rounds and a heavy patient load and some are friends, relatives or  complete strangers coming to clinics to offer their healthy life’s blood to help us.

All points of light. Most, are unnamed but we count on them to illuminate our path,

Julie and Lori, sisters, two points of light, story in this issue.

And those points of light that fade from view as they fall to the ground remain bright in our memories, a warm beacon of hope — Hardly a day goes by that I don’t think of Harvey and Ian, Patsy, and Karl. And  so many, many others. Each of us can identify our own points of light.

We would be lost in darkness without them.