Excerpted from "With A Little Help From His Friends", Stroke Connection May/June 2003
Editor's Note: Although Mikey passed away in July 2003, shortly after we ran his story, we were so moved by the exceptional way the community came together in support of him that we wanted to continue to honor all of them by making his story available via our website.
The Mikey Dee Musician's Benefit Trust that was originally established to help defray the cost of therapists, adaptive technology and other medical supplies needed to facilitate Mikey's recovery, is still operational and the trust fund's long term goals are to provide for other musicians and artists who suffer catastrophic events and are in need of financial assistance.
After undergoing what was to be a routine angioplasty in February 2000, Michael “Mikey Dee” Linick experienced a severe brain stem stroke.
Friends, who expected to find the 37-year old regaling listeners with the gory details only a hypochondriac would love, found him hooked up to ventilators, a defibrillator, and other machines that beeped and whooshed in the hush of the room. For the first time in his life, Mikey was utterly silent. Though we didn’t know it at the time, a long journey was ahead of Mikey, all of it uphill.
In the late 1980s, after a few short stints at local colleges, Michael Linkick began to carve out a life for himself in Boston’s art and music scene. He worked at a radio station in Rhode Island, where a fellow DJ dubbed him “Mikey Dee.” The name stuck, and a true character in every sense of the word was born.
Mikey played drums in a series of rock bands, wrote for several music magazines, and hosted a local music show. He seemed to know everyone. He lived and breathed Boston’s music scene and was its very soul.
Mikey’s stroke damaged the ventral pons in his brain stem. This severe and rare kind of stroke left Mikey locked-in. He has cognitive function, but because of the damage to the brainstem, he is unable to speak or move functionally.
Following the stroke, Mikey’s friends got together to see what we could do to help. The medical costs were staggering, and though he had insurance, it was quickly depleted. His former employer, The Planetary Group, a music promotions company, set up a trust to help defray Mikey’s medical and everyday living expenses.
They also organized a massive, week-long series of benefit concerts featuring hundreds of local musicians. The series, entitled “For the Benefit of Mr. Dee,” raised more than $70,000. A second 5-night music festival in 2001 raised an additional $35,000. The fund remains an essential element of Mikey’s recovery.
The money is used to pay for personal items, a massage therapist who visits weekly, an acupuncturist, and because seeing local music was and is his greatest joy, transportation to and from the occasional concert.
To publicize Mikey’s situation, we set up a Web site for him so his friends, spread all across the country, can keep track of his progress. The site also serves as an informational resource for stroke survivors and their families, as it contains several useful links.
Mikey is estranged from his biological family, who traditionally take over following a traumatic event, so seven of us joined together to help. “Team Dee” has become a family of sorts, with all of a family’s heart (and its occasional dysfunction!). Each of us brings our own particular strengths and talents to the group.
Tina is Mikey’s guardian, looking after his interests and managing his care. Valerie works on communication and range-of-motion exercises with Mikey. Eleanor built his Web site and has studied assistive technology. Linda helps Mikey process his emotions through this experience. Joe brings movies, jokes and trivia to entertain him.
And I do a sort of combination approach, bringing a little of everything on my weekly visit. A common thread unites us: our love for Mikey, and a desire to help him live his life to the fullest.
As he began to recover, Mikey experienced many of the typical stroke after-effects: double vision and dizziness (which we remedied with an eye-patch and lots of pirate jokes), severe muscle spasms and high temperatures. Nurses got used to the constant sound of music wafting from his room, and the sight of me in the bed with him, holding down his stiffened limbs. We made commando raids on the staff ice machine to cool him down.
After a subcutaneous Baclofin pump was inserted, the spasms decreased significantly, but it was several more months before a gain in motion (a thumb wiggle or a nod) did not produce a spasm of its own. Three years later, Mikey’s spasms are under control, and his communication ability is returning.
It is simultaneously heartbreaking and encouraging to see that Mikey’s essential personality remains intact: his quirky sense of humor, interest in current events, movie trivia and music survive; but he is unable to speak, drum, or roam all over town as he used to. Given that he was a person who never stopped talking, the change is monumental.
We hired a massage therapist, who augments the range-of-motion exercises that he receives through the North Andover Skilled Care Facility where he lives. Unfortunately, we have been unable to find a speech therapist, or to get him the aggressive physical therapy that he needs to develop his progress.
Sadly, many medical professionals seem to hold little hope for significant recovery, and so don’t want to try. However, in the months after the stroke, Mikey developed the ability to move/support his head and neck, squeeze his hands, and wiggle his fingers and toes. We are concerned that without professional assistance, he may never reach his full potential.
Likewise, speech recovery has been an agonizing process. A few months after his tracheotomy tube was removed, Mikey began to be able to vocalize on command, even whispering “yes,” “no” and a few short phrases. However, bouts of pneumonia have weakened his lungs, and now, despite being able to articulate letter shapes, he is unable to get enough breath to vocalize words.
Currently, Mikey communicates through head movements and a letterboard to spell more complex thoughts. We’ve recently begun playing Trivial Pursuit, and thanks to the letterboard, Mikey continues to be a formidable opponent.
Mikey experiences the loneliness and boredom typical of patients who reside in long-term care facilities. We’ve attempted to remedy Mikey’s isolation by holding special events every few months. We started a Sunday Singalong program at his first hospital and have continued it in North Andover. Our philosophy is, “If Mikey can’t get to the music, we’ll bring the music to Mikey.”
The gatherings are lifeblood to him. His face lights up with joy at the sight of his old friends, and the music transports him to a freer time.
Five years have blunted our hopes that Mikey will make a full recovery, but we continue to hope and pray that he can gain some in terms of communication and movement. We are still on the hunt for a therapist to help him regain his speech.
We scour the Internet and read every article on advances and technology that we find. And we continue to chip away at the bonds of locked-in syndrome, always dreaming of a day when we can watch him wield a drumstick, or just hear his voice again.