Will Edwards’ Bogus Journey

Will Edwards. Photograph by Dan Chusid

Will, Kristen, and Oliver Edwards

A popular saying reads, “You can’t choose your family.” I’d venture that you don’t necessarily choose your friends either. I remember the first time I met Will Edwards; it was some time around 2003 in front of the old pastry counter at Twiggs Tea & Coffee. He was typically laid-back and I was typically stressed-out about something. Johnny Ciccolella was somewhere in the middle, mediating one of those highly intense pre-show crises that usually conclude to hold little real importance. I know Will’s demeanor in that moment infuriated me, while I’m sure he barely noticed my presence.

Those days were the last hurrah of the Twiggs Green Room; I ran the Wednesday night open mic, Will had his Thursday night showcases… between those, the H.A.T. Awards that Will curated, the endless summers of weekend gigs, and the hordes of songwriters who loved the Green Room’s sound and hated the pay, it was a great little scene to build friendships, partnerships, and hone the craft that binds us.

Will and I took to the road together in the autumn of 2007 and again in the spring of 2008, both jaunts taking us up the coast into the Canadian south of the Pacific Northwest performing our respective solo acts. As I’ve been known to say every now and again, you really get to know someone when you’re out for three-week stretches, clocking thousands of miles in a car… with no stereo.

Being in similar professional lines of work, Will and I bounced the odd consulting gig back and forth over the years as well as contributed a fair amount of work to this here newspaper in that time as well. When it came time for Will to grace its cover in July 2008, I was honored to do the honors and provide a written glimpse into one of the most (exasperatingly) complex and thoughtful souls I know. More recently, Will has helmed the engineer’s chair for my bands first EP and is currently reprising this role for our first full-length record, another challenging test of any relationship.

While I often view Will as filling that missing “big brother” role in my journey, this is probably incorrect and due in part to him frequently using our two-year age difference to his advantage when attempting to impart his latest wisdom. In all actuality, Will is one of my closest friends. We didn’t plan it, there was never a eureka moment of “bro-mance,” it just kind of turned out that way.

I didn’t see Will much at the beginning of this year. He’d been feeling out of sorts and our recording sessions kept getting postponed. I did my best to understand, despite feeling antsy to get back into the studio, but couldn’t help from growing a little more concerned when Troubadour publisher Liz Abbott approached me to pick-up the slack and cover for April’s Josh Damigo cover story as well as that month’s website deliverables. That just didn’t seem like something Will would drop the ball on.

I was at home cooking dinner with Jen on the evening of March 19th when Will’s wife, Kristen, called. Her usual balanced calm emanated from the handset despite the news she was bearing: she was with Will at a hospital in San Francisco where he’d just been diagnosed with a brain tumor. Luckily it appeared to be benign, but needed to be removed quickly and the operation was scheduled for the following Monday. Other members of his family were either there or en route, and she was just making a few quick calls to inform those who needed to know what was going on. We chatted for a few more minutes and having wished everyone there my very best, as well as offering any help I could, I hung-up the phone. While there are definitely worse, that was definitely up there with phone calls you would never wish for anyone to have to make or receive.

After a successful operation, Will returned to San Diego a couple of weeks later, having already begun the long road of rehabilitation that lay before him. I visited almost daily in the beginning and witnessed the minute advances that constitute the recovery process from what I can only imagine is the very most invasive of surgical procedures. Two more weeks passed before Will and I finally sat to discuss the events that led to his life-changing experience and, at these early stages, where he thinks those changes will lead him.

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In late 2010, life and work had been unusually stressful for Will Edwards. Having found temporary solace in the Christmas break he spent with his family he returned in January to more of the same and found himself getting burned out quicker than he usually would have.

Midway through the second week of February, Will experienced a severe headache that lasted for about two weeks. Not being the biggest fan of western medicine, he underwent acupuncture during that time, then chiropractic adjustment in the hope that the pain was something that could be dealt with. While these treatments worked for a short time, the over-arching experience was that he still had the original headache.

“I’ve only ever had headaches on account of stress, so I assumed that a really bad headache meant I was really stressed.” On this assumption, Will initially planned to spend some time in the more rural areas of Colorado and Wyoming to “get away.”

Will’s spent his first three days in Harbin Hot Springs, two hours north of the Bay area. His symptoms changed from a constant headache to nausea, which led him to believe that he was getting better. “I thought the nausea was simply from being in real hot springs, there’s bacteria in the water, maybe I had just caught a bug from there?”

Will’s next stop would be in Fairfax, California to visit his brother with the idea of using this progressive healing-arts community as a base for the remainder of his trip. There he received massages and energy work, which he also assumed would help his predicament because he was still very focused on his symptoms being an energetic illness, not a biological one.

A week later, Will started getting very nauseous again and the only way he could find enough comfort to sleep was by lying down on his left side. Getting in and out of bed or chair was an incredibly nauseating experience, which led him to spend most of his time standing up. When he did sit it would be for four to five hours because of the psychological preparation necessary to get back up again.

By the middle of March, Will couldn’t walk straight. He sought the help of the town’s family doctor and homeopath Dr. Michelle Perro, who diagnosed that he was dehydrated. She gave him 24 hours to hydrate himself with electrolyte replenishing drinks. Unhappy with the results she sent him to Urgent Care for a hydration IV and blood tests that all came back negative. Because these results conflicted so severely with Will’s symptoms, the doctors suggested that he submit to a CAT scan, which he would have been fine with, had he been able to afford the cost ($2,000-$4,000). He left urgent care against doctors orders and was still deeply convinced that what he was dealing with was an energetic illness.

He went back to the first doctor who was happy with his progress, despite feeling cautious that he was still displaying his original symptoms. She prescribed Bromium — one of the most powerful available homeopathic remedies for dizziness — which had no effect on Will’s symptoms. This led her to believe that the issue was neurological and her prescription of an MRI. In the same way as he had at Urgent Care, Will explained the financial issue to which she suggested he return in a few days.

Will spent those few days literally stumbling around town. Meanwhile his brother managed to organize an appointment with a very skilled and highly reputable chiropractor. A large part of this healer’s treatment is based upon her intuition, an approach that Will places a lot of faith in. Having taken an x-ray of his spine, the Chiropractor had no doubt there was a lot she could do for him chiropractically. She also had no doubt that his symptoms were not chiropractic and while she’d alleviate his suffering for a matter of hours, she also knew she wouldn’t heal him. She too recommended an MRI, at which point, Will realized he’d be foolish not to follow this advice.

Dr. Perro, with whom Will had now become a regular patient, did some research and found a nearby facility who specialized in nothing but MRIs, which were relatively inexpensive ($500-$600). With the cost being somewhat bearable, she made an appointment for him. At this point, Will was so miserable that he was “deeply hopeful” that the MRI results would find something disastrous — he ended-up getting his wish.

During the first call he received after his MRI had been interpreted, he was told that while they didn’t have conclusive information yet, the scan had not come back normal. For the next six hours Will experienced relief that he may start getting some answers. Later that night his doctor called to deliver the news that he had what looked like a tumor in the back of his brain. She advised that he see a neurologist immediately and — again of her own volition — had already found him a neurosurgeon at one of the two main hospitals in San Francisco. While Will “doesn’t know a neurosurgeon from a can of paint,” he took the recommendation and, again, found it to be a good one.

San Francisco is one of the national hubs for neurology that leads to a great number of advanced resources in that area from which to draw the best treatment. Dr. Charles Cobbs and his partner, Dr. Andrews, are at the peak of that pyramid. While safe in the knowledge he was in good hands, the other major issue Will had to contend with was his complete lack of health insurance. This was remedied to a degree by the hospital staff dedicated solely to connecting patients with social services that help ease the cost of necessary treatment; one of these services is Medical.

Thanks to Dr. Perro’s relentless endeavor to personally speak with Dr. Cobbs and explain Will’s dire predicament, he saw the neurosurgeon on March 18, amazing in itself due to his months-long waiting list of patients. After a few minor tests, he reviewed the MRI results and confirmed that Will had a mass that was very close to the cerebellum — the area of the brain that governs motor skills. Rather than letting spinal fluid drain down to the spine, this was causing a blockage and sending the fluid up around the brain, causing pressure and the resulting symptoms. The results of this would almost certainly have been brain damage, and the mass needed to be removed immediately.

Due to the severity of the situation, Dr. Cobbs elected to perform the surgery that afternoon and organized for Will to be admitted into the hospital at once. In the meantime, an even more life-threatening procedure arrived at the hospital and at 2:30pm and Dr. Cobbs visited Will to inform him that his procedure would have to be postponed until Monday. Having spent 48 uncomfortable hours being monitored from his hospital bed, Monday morning arrived and Will was terrified that Dr. Cobbs would postpone again… thankfully, everything was on schedule. His operation took place with successful results on the afternoon of Monday March 21.

Immediately after the surgery the nausea was gone and a week later Will was able to walk straight again. On week two, his appetite returned, he had more mobility and was able to travel back to San Diego. During week three, he could walk comfortably and read again (since his symptoms begun, Will’s eyes had had trouble focusing as the cerebellum governs eye coordination). By week four, when we held this interview, Will still felt “slow” but knew that his “mind was present even if my body isn’t.” He’s lost over 16 pounds, a lot of which was muscle that he’s now trying to build back.

Will undergoes physical therapy every two weeks where he receives exercises to help him retrain his brain. According to his therapists, when the brain suffers an injury of any kind (surgery falls underneath that heading) the brain goes into a mode where it starts to create neurons which, for most people, never happens unless you’re an infant. This will continue at a rapid pace for six months, leading into a cycle that will taper off over a period of about two years. This time is critical for Will to retrain his brain; if he does not do so within this time, he may never be able to do those things he must relearn again.

Another major issue Will must avoid is high blood pressure, which at these early stages following this type of surgery can cause a stroke. This means he must give up his current line of work and any other activities that cause stress. While inconvenient for short-term living, he’s excited for the opportunity to reinvent himself. Guitar and making music are still at the top of Will’s priority list, but the ways in which he makes his living and his priorities are going to change dramatically.

The next stage of treatment will be discussed after his next MRI in three to six months, a process he may have to continue at longer and longer intervals for the rest of his life. The final conclusion on the mass that caused Will’s symptoms has been labeled a “vascular malformation” three centimeters in diameter. A little more vague than the “tumor” and “cavernoma” labels that preceded it, the Doctors are keen to keep an eye on the situation.

While both state disability and MediCal are pending, Will is sure that the bill for the surgery alone is going to come under the headline of “unaffordable.” Apparently, MediCal will help cut a bill from “absolutely intolerable, devastate me financially for the rest of time” to “devastating me for a year or two.” He continued, “I don’t think it’s ‘right’ but I don’t think it’s entirely unfair. This surgeon does two to three brain surgeries a day and I can appreciate that that’s hard work. I also appreciate that I now have the opportunity to spend the rest of my life with my son, my wife, and my family; I get to go to Christmas parties, eat pancakes and waffles again… How can you put a price on that? Even if I had to pay a lot of money with MediCal, it’d still seem like a pretty good deal.”

As with Will’s MediCal application, a donation page (http://bit.ly/willedwardsmedicalfund) has been set-up to begin this fundraising effort. Any help that you can offer will be very much appreciated and humbly accepted by Will, Kristen, Oliver, and their family.