In Celebration of A Beautiful Soul
We thank Caroline Elizabeth and Christina Steiger for the beautiful tribute to Heather below, and the contribution of Anna Mudd who added some additional reflections from friends over this past week, as well as words that Heather wrote to family and friends in her final days. We will continue to collect memories, reflections, and photos from Heather’s loving communities, far and wide.
Heather Colman-McGill, our beloved friend, daughter, sister, advocate, activist, and a vibrant environmental scientist, has died after fighting for her life for years with very severe myalgic encephalomyelitis (ME).
Before ME, Heather led an active life as an environmental scientist, athlete, and world traveler. She had a deep love of nature and the environment, and a tremendous zest for life. Before falling ill, she took every opportunity to be outside and enjoy the natural world. She loved all life on this beautiful planet, and was a staunch advocate for the environment.
Heather first developed ME as a teenager, though like many patients, she was not diagnosed for nearly 20 years. In her case, she was infected by a tick-borne disease at 12 and mononucleosis at 18, and was exposed to toxic mold in her childhood homes and schools. She began having many symptoms of the illness, but when doctors had no answers, she simply pushed through until that was no longer possible.
Despite declining health, Heather managed to earn a BA in Biology at Bowdoin and a Masters in Environmental Management at Yale. Heather hoped for an exciting career working as an environmental science and policy expert. In her last position, she worked as a UN consultant on biodiversity loss, protected area management, and climate change. Despite her illness, she remained passionate about environmental policy. She wanted nothing more than to step back into her life and career. It was with great pain that she could not be on the front lines of the fight against climate change, and yet she still found ways of raising awareness, even as her health continued to fail.
Now, at age 38, Heather is gone.
The world of severe ME is unimaginable to most. Heather could rarely experience the outdoors on her “good days” if carried out in a wheelchair in a reclining position, as even sitting up briefly was too much for her fragile condition. Something as simple as a moment of hearing a bird sing could lift her spirits for days. As ME is “invisible”, she sometimes looked healthy, despite suffering immensely from severe exhaustion, body-wide muscle and joint pain, a stiff neck, unstable blood pressure and heart rate, muscle twitches and spasms, chronic lightheadedness, sound/vibration sensitivity, nausea, food intolerances, and extreme thirst, among other symptoms. She was often unable to speak and only had a brief period on “good” days when she had the cognitive energy to focus, which she devoted to environmental advocacy, as well as researching and planning her own path to recovery. Eventually, her condition worsened to a state where she could no longer enjoy even these tiny slivers of light that are so rare in severe ME.
Despite her suffering, Heather maintained solid hope for a full and active future and worked to spread awareness about this unimaginably debilitating, yet widely misunderstood and underfunded, neuroimmune disease.Those with severe ME are largely rejected by the medical community, leaving extremely ill patients even more vulnerable. Those who are most in need of medical care and caregiving support often do not have it.
Heather had a close-knit circle of friends and family who loved and advocated for her. This week a friend reflected, “Despite spending much of her life in isolation, she was one of the most well connected individuals I know. She advocated for herself until the very end and created a community for herself that inspired many.”
Another friend commented “Heather always reminded everyone she knew to appreciate the little simple things in life that became so precious to her. She wrote once about the magic of being outside, just in a parking lot, watching trees blow in the wind, and how she was overcome with the beauty of it after being trapped inside her body and bed an entire season. She fought every single day, beyond what most people could, for another chance to be a part of the world again in even the most simple ways. It truly makes me appreciate all the daily miracles every time I think of her.”
In some of her last messages to friends, she wrote: “Please again know how loved and cherished i have felt, how incredibly grateful for a privileged and beautiful life, full of awesome experiences I’ve had…and I hope and know you’ll continue to fight the good fights for our planet, and environment, health equality. I’ll be with you. Very proud of all of you. And of me.”
And closer to the end, “I was just picturing you all circles around me, holding hands and chanting or singing with love.” And “Love forever bonds energies forever together.” In another reflection a friend shared, “It is amazing that someone could have that much grace even in their last days, in extreme pain and in the grip of a terrible illness. I still feel part of that circle. Even though its center is no longer alive, the light is still shining on us and the gravitational force is still holding us in orbit, chanting and singing with love.” We hope that our collective love and energy can continue to bind us together, to honor Heather’s fierce spirit and continue to fight for her in the years to come.
Heather asked of us, “Please be as vocal, public, ferocious as your time permits, in sharing my story, in whatever way, writing, news, whatever if any of my contacts wish. This situation must be heard. Another story to the growing pile [of those who died because of M.E.]” Please help honor Heather’s memory by being a tireless advocate for those issues she cared deeply about, the environment and those who have severe ME and who have been rejected or forgotten by medicine. We cannot forget the ME community, and never has there been more hope on the horizon and so much opportunity to help. Heather’s tragic passing is a “call to hearts,” to help raise awareness about ME, demand more research funding, and shine a light on the plight of those who are severely impacted and made vulnerable by this disease. In the months ahead we will share ways to do this.
For more information on ME and the challenges Heather faced as a woman with diseases which are poorly understood by the medical system, some places to start include the documentary “Unrest,” Maya Dusenbery’s “Doing Harm” and Julie Rehmeyer’s “Through the Shadowlands.” Two organizations that support ME research and awareness are #MEAction and the Open Medicine Foundation, both of which Heather passionately supported. To support work to provide severe ME patients with caregiving and non-toxic housing in pristine locations which Heather so desperately needed, please consider a donation to DFEND, NFP.
In lieu of flowers, Heather asked that people donate to their favorite environmental or animal protection group. The environmental causes that Heather held dear include the Union of Concerned Scientists and the Jane Goodall Foundation.