Our beloved friend and brother Hal Walker has inspired so many people with his music and his generous heart. He built the vibrant music program at the Unitarian Universalist Church in Kent, Ohio. He’s brought music to thousands of children through his school programs. He’s delighted millions online with world instruments like the khaen and banakula.
Few of these people knew that Hal has been living with a chronic illness since 1992, when he experienced the sudden onset of ME/CFS. The long name is myalgic encephalomyelitis/chronic fatigue syndrome. As Hal puts it, ME/CFS is a poorly named, poorly researched, barely diagnosable, largely invisible, and debilitating illness.
Through most of those 30 years, Hal’s symptoms were manageable. He coped with chronic pain. He found ways to work around the severe weakness and other symptoms that followed school appearances, his church work, and performances. Recently, he focused on creating short Tiktok and Instagram videos and limiting his live performances.
As Hal often noted, ruefully, he looked healthy in public—if you saw him light up a room with his music, you might never know Hal was sick. But the day after a performance, and most Mondays after a busy day at church, Hal would be virtually bedridden.
In the second half of 2021, things became much worse. Hal had always known that people with severe cases of ME/CFS can become unable to stand unassisted, to get restful sleep, or even to eat solid food. Many lose their ability to work, or to live independently.
It’s been heart-breaking for his family and friends to see that happen to Hal this year. He has experienced severely intensified symptoms that have made him housebound, mostly bedridden and unable to care for himself. Like many ME/CFS sufferers, he rarely gets any restful sleep. He can’t earn a living and he can’t play music for more than a few minutes.
All Hal wants to do, most hours of the day and night, is to work on music, to delight in it, to learn it, to practice it, perform it, teach it, share it, entertain with it, inspire with it. He has often expressed joy and gratitude that he could earn a living through music. His whole house is devoted to it. One room has nothing but a baby grand piano. The back porch is stacked with boxes of harmonicas and of banakulas for school children. The home office that adjoins his bedroom is crowded with mics, keyboards, and editing equipment.
And so this is a particularly devastating loss for him.
Hal is not alone. The hashtag for ME/CFS is #millionsmissing. These are the people whose active lives were cut off at the knees by this brutally disabling disease. Closer to home, Hal has received the loving support of his partner, his family, friends and church community.
However, the emotional and physical support is no longer enough. Hal has always been frugal, but his savings are dwindling and he currently has no reliable source of income. In addition to the necessities of life—heating oil, groceries, and so on—Hal is facing new expenses, including a 24-hour home health aide and treatment for symptoms of his illness, including severe tinnitus— a loud ringing in his ears that often prevents him from resting or even thinking clearly. We’re hoping to raise enough money to provide Hal with at least a year of financial stability, along with the home-healthcare and medical treatments he needs. Meanwhile, Hal will be able to apply for disability benefits and perhaps to recover enough to begin earning some money again. Many people with ME/CFS recover at least some of their strength.
Please help. Any donation can remove a measure of stress from Hal’s shoulders and bring him a step closer to security during what we all hope and pray is the worst, most devastating period in his illness.
You know that Hal is a musician. He is also a bright light—a lanky, 6-ft.-2-inch, 55-year-old with a huge smile who used to love riding his scooter around Kent and tending his garden. He is a dad, a brother, a life partner, a friend, a generous soul who has quietly provided emotional and practical support to so many others over the years. He’s an inspiration. And now, he’s someone in need of all of our help.