Community Spotlight: Benevilla Caregivers Month article - Local wife cares for husband through illness, still finds joy in "the little things"

By Matt Marn

Susan P. has been married to her husband, Bob, for 16 years. He was already retired when they met, so when Susan went on business trips, he got to tag along. And when she also retired in 2003 and the pair moved to Arizona, that’s when the real adventures began.

“That’s when we really got to travel,” Susan said. “We went somewhere every year. We traveled to Australia, Italy… once we even took a boat from San Diego to Hawaii.

Susan said she is glad the two of them got the chance to travel, and they “got it out of our system.” Because once things began to change, she admitted it would be a lot of work, and not very relaxing to travel now.

“There were things I noticed, after a while,” Susan said. “He was a lineman for the power company, where he did electrical and woodworking jobs. Eventually he started calling his buddy over to help with things he should have been able to do.”

After that began to happen, along with an alarming was a driving incident, she knew something was changing with her husband. They began to run tests through the summer, and it took until fall to get in to see the neurologist. It was a six-month process. By the first of the year, they had the diagnosis.

“It was an early-on thing, too,” Susan said. “I got a call one day from a police woman, who said Bob had taken the dog out for a walk, like normal, but today couldn't find his way home. Someone found him and called the police for help. It’s hard to get a call from the police.”

Susan was not sure what to think, and was afraid of where this road would lead the two of them.

“My fear was that there was no hope,” Susan said. “I was afraid there was not really a lot you could do; just a long and painful process.”

Susan said the pair doesn't have a large family. While Susan’s mother has helped a lot, she is elderly and understandably can’t always be around. She said she and Bob have really used the Benevilla care systems, such as the day care programs and support groups.

“Benevilla adult day care, then the Area Agency for Aging… these helped a lot,” Susan said. “It’s a wonderful thing. You start learning about the others in your group, as well as the spouses. It’s like a whole other family. We even occasionally go out to eat, or go see a movie with some of them.”

Susan said it was very hard to go to the support group the first few times.

“You hear all these people, and you know you’re going to be in those shoes later on down the road,” she said. “It was very hard for me. Now I go more regularly, most of the time. I know most of them, you start to care about them… some are quite inspiring. They may be having a lot harder time than you.”

Susan also said Care Pro was also a great service that helped them with this journey. The program, run not by Benevilla, but through Arizona State University, is a form of training for caregivers – it helps family members know what they can expect, what to be ready for, when they care for someone with Alzheimer’s or dementia.

“Care Pro should be required for every caregiver,” Susan said. “I’m an R.N. but I still learned a lot. It is specifically for caregivers; it teaches you to appreciate the little joys, to look past the big ugly of it. When I see people come in towards the end, at the end of their rope, at their wits end, I feel they could have been helped sooner by this group… They could have had that training.”

Susan said her advice to people in the same situation would be to get help – to stay connected. In addition to looking online and in the community for resources that can help, she said most importantly, they need to find others in the community to connect with… others who have gone through the same.

“If you don’t have that connection…” she began, “Sometimes I go online and read these support blogs – but sometimes I can’t even read them… they are so sad… But the people in these support groups have that physical contact. Those people have compassion for each other. And the members of the group need to encourage each other to come back sometimes. Not every week’s session is easy, but again, it’s kind of a family. That’s how a family is.

But the most important part for Susan – what she hangs onto the tightest – is the joy she finds in the little things. And the love she has for her husband, which grows stronger every day.

“You try to realize … To not dwell on what was, but what is – as they say in the support group, ‘the new normal,’ whatever that is,” Susan said. “I still find joy in things. He’s a very sweet man. Many have fewer resources than I do. I enjoy the small things now a lot more. I could do a lot worse.”

Benevilla Press Release sent to local media:

New Jivemind Music Labs features Glendale Jazz Jam, outlets and opportunities for musicians

By Matt Marn

Also published by AZCulture.com

The organizers behind one of Glendale’s best kept secrets are ready to share.

People from all over the valley, musicians and supporters alike, gather in the performance lounge of Jivemind Music Labs to enjoy the Downtown Glendale Jazz Jam.  Performers of all ages and skill levels, from seasoned professionals to a grade-school student with a ukulele, take to the stage with their guitars, drumsticks, and voices every Thursday night to share their talents and have fun in a friendly, supportive atmosphere.

But there is more at work in this building than the Jazz Jam, and whether you are a passionate musician, or you just want to try a new hobby, Jivemind Music Labs may become your second home.


Getting the Jazz Jam started

The Downtown Glendale Jazz Jam, which meets at 7:30 every Thursday evening, got its big break when the organizer, Elizabeth Doré, was offered a booth at Glendale’s annual Jazz and Blues Festival.

“We have been after a space to perform for 2 years,” Doré said. “I was working with Glendale, and they gave Jazz in AZ a booth 3 years ago. I met Gabriel Bey, the founder of AZ Culture, and told him we were looking for a venue. When he heard about Jivemind this year, he told them about us.

As Doré met with Jeff Rose and Dustin Chaffin, the two founders of Jivemind, they got along instantly, and she liked what they were working on opening the facility. Rose and Chaffin thought Doré wanted to hold the Jazz Jam once a month, but she insisted the jam be held weekly, to “keep it fresh and popular.”

Doré said so far, the Jazz Jam is getting a great reception.

“I’ve met a lot of my goals,” she said. “The word’s getting around, and we’ve hired a lot of good musicians. But right now, we are working on the financials. I’d love to see it pay for itself, through increased support, as well as sponsorships.

“This Jazz Jam is out of pocket for me and my husband,” Doré said. “It’s a hardship, paying out of pocket, but if we can keep money coming in, that would be great.”

Doré said the Jazz Jam hires a new professional jazz band every month to facilitate the jam, and people from all over the community are welcome to play. She said the arrangement with Jivemind is great, since the Jazz Jam satisfies Jivemind’s needs through the city, and it also gives Glendale nightlife business, as well as helping Jazz in AZ recruit new members.

“It’s a good opportunity for them,” she said. “We also have music promoters that come in, and they have hired people who perform there.  What I’m trying to do is establish relationships with people who are doing these things in the community.”

Doré said it is a dream come true holding a jazz performance in downtown Glendale.

“There are millions of people on the west side, and they don’t have anywhere to go. And the new performers get to play with professionals. Everybody wins; that’s how we roll.”

Doré wants to use the Jazz Jam to share the west side’s musical talent, and hopes to become a satellite for Jazz in AZ live music.

“We now have a west side center for live music on a regular basis. With this low cost and high-quality entertainment, we strive to bring young students out to play with seasoned professionals. It is such a wonderful outlet… there are so many well-educated musicians here.”


Jivemind Music Labs: A place to call home

Jivemind Music Labs, the home of the Jazz Jam, is also starting its own rise through the valley’s music scene. On the corner of 58th Avenue and Glenn Drive in downtown Glendale, the founders describe Jivemind on their website as “a community workshop where musicians, producers and hobbyists realize their projects, practice their art, and connect with others.”

Jivemind offers rehearsal space and a growing collection of accessible instruments, recording studio space, as well as regular clinics, workshops and performances, including the Jazz Jam. With nearly a dozen varieties and levels of membership plans at Jivemind, Rose and Chaffin believe everyone interested in music should be able find a comfortable environment to enjoy and practice music, and meet others who enjoy doing the same.
“I’d like Jivemind to continue to gain momentum, said Rose. “It’s going to be the happening spot, with lots of events, lots of really awesome equipment. We’ve gotten to funnel performance opportunities to younger performers. I’d like to see musicians playing, learning and networking.”

Jivemind, now open, held an open house the weekend leading up to when Rose and Chaffin opened the doors. They got overwhelmingly positive feedback, and a news network affiliate also came by to help spread the word. They are excited about the publicity, but they remain most excited about the good it will do for music enthusiasts in the area.

“Dawell, a drummer and regular here, said it best: ‘Everyone has a voice, however developed, and everyone should have a right to develop it,’” Rose said. “And we’re trying to do that. We want to foster a culture that is growing. We’re not in it to make money; we want to help by doing what we love to do.”


Different roads to the same song

Rose said he and cofounder Chaffin arrived at the need for a place like Jivemind separately, knocking on doors, making contact with musicians and organizers in the area.

For Rose, it started when he played his drum set at home, and with the paper-thin walls of his apartment complex, that didn’t go over well.

“It was not a healthy environment to play and practice,” he said. “I got my drums out of home, and I took them to another sketchy place, and soon they were trashed. I just wanted to play my drums…”

Rose said he wanted to also go out and meet musicians, and have a good, safe place to play.

“There ought to be a place in town that can provide you with contacts, instruments, and a place to play, a central location in Phoenix that provides that,” he said.

Rose said when he asked around for who he should talk to in the area to get started in the music industry, Kimber Lanning’s name kept coming up.

“She’s a player, well-connected and approachable,” said Rose. He said Lanning put him in contact with other active members of the music community, including Nate Anderson.

Meanwhile, Chaffin grew up an hour north of Austin, Texas.

 “Any day of the week, you can just walk down the street, and see a show,” Chaffin said. “The music scene is incredible. Here, there’s less places to just drive to and see what’s happening. Plus, I’ve been writing and recording music since I was able to read at all. Anything I did in music, I was very encouraged, coming from a musical family.”

Chaffin said when he looked into the issue; he found most recording studios in the traditional sense weren’t making money. So he formulated the idea for a “lean and mean” studio. He, too, approached Kimber Lanning, who also led him to Nate Anderson.

This was when Rose and Chaffin were introduced to each other.

“Together, we came up with a holistic concept,” Chaffin said. “Venues, recording, and gear usually get expensive, and can stifle you. We provide these resources, and a great chance to meet other musicians.”

Chaffin added with a smile, Jivemind is “like a gym for musicians,” and advised enthusiasts not to buy an expensive elliptical, but to go to the gym.

“And there are people there with you, with a shared interest, a like mindset you can’t get at home,” Rose added. “However serious or recreational it is, there ought to be a place like this.”


Taking it from the top

Now that Jivemind has opened and the facility is prepared, Rose and Chaffin are astonished, seeing their dreams for what the local music scene deserves turned into a reality.

“It’s amazing, seeing this come together,” Rose said. “I don’t know about Dustin, but it’s better than I had imagined. We’re happy with where we’re at now, but we know what we have to do to keep improving. It will grow so much greater from here.”

As part of that list of ways to grow, the duo is working more heavily on spreading the word through outreach to the community.

“We have great press and a lot of marketing,” Rose said. “But selling this building and getting people on board is only possible with the finished product. We have spent months developing, finishing our product, and now we are really pushing our promotional efforts. It’s just a matter of building word of mouth.”

Rose said the pair is working now on workshops and activities based around various musicians’ topics. Many are still conceptual ideas, and would-be facilitators are still expressing ideas, or are being approached by Rose and Chaffin themselves, but Rose mentioned a possible drum lab as an example, facilitated by a teacher, where music lovers can jam, practice and socialize.



“For sure, we want to expand our membership base, and the continued growth of what we have to offer musicians, from instruments and performance space to fun, interesting programs,” Rose said. “That’s the kind of stuff we like to do.”


The Start of Something Great

Now Thursday evening’s Jazz Jam wraps up at Jivemind Music Labs, and everyone in the crowd who wanted to take the stage has gotten the chance to jam with professionals in the valley music scene. The crowd is clapping for great performances, and tapping toes and bopping heads can’t help keeping the rhythm that fills Glendale’s newest spot for live music and music lovers. And off to the side, Jivemind cofounder Jeff Rose works the sound console, and in the back of the room, Rose’s cofounder Dustin Chaffin stands with Jazz Jam organizer Elizabeth Doré, all three nodding and tapping along with the rest of the crowd.

Their smiles, however, may be just a bit larger.


Downtown Glendale Jazz Jam
Every Thursday, 7:30-10:00 pm

Jivemind Music Labs
5754 West Glenn Drive
Glendale, AZ 85301
 (408) 475-5483
http://jivemindmusic.com/
http://www.facebook.com/JivemindMusic

“Tuesday Bluesday 2.0:” The Blues can smile once more

Popular blues jam reopens at new venue as fans look forward to bright future

By Matt Marn

When the Glendale blues jam known as “Tuesday Bluesday” ended along with the closing of its home venue, Next Coffee Company, they went out on a high note, with a packed house – the largest turnout of the event’s history. It was a bittersweet night for all, as everyone gave their best performances onstage, unsure what the future would bring for both Tuesday Bluesday and for the group of regulars who support it.

But the following week, “Tuesday Bluesday 2.0” opened at Zendejas Grill, right next door to their former coffee shop. Without missing a beat, the group had found a new home.

Tuesday Bluesday organizer and band leader Tom Mein breaks out his familiar guitars, takes the stage with his usual band mates, bass guitarist Rich Alfano and drummer “Rumblin’” John Rumbaugh, and begins their set with their favorite medley. As cheers grow louder from the audience, he welcomes the crowd, “Welcome to Tuesday Bluesday 2.0!”

Mein explains to the crowd how grateful he and the band are to have Zendejas as their new venue to continue this event. He said, as he always does, how important it is to continue to support live music, particularly on the west side of the valley, where local talent can have a place to perform and grow.

After the band’s intro blues set,  Mein starts moving through the list of performers in the crowd who wanted to step onto this new stage and jam with other local performers. The night featured a variety of blues, jazz, funk and even some country, as Tuesday Bluesday is admired as featuring a variety of genres for all tastes to share and enjoy.

“One thing I have noticed in the past year, there’s been an explosion of all sorts of jam sessions around here,” said Mein later. “But we have one of the best varieties. That’s our niche; we’re the most varied jam session. I don’t want to be just a blues or a jazz jam, I like mixing it up. I hope it stays that way.”

One of the performers to take to the stage was Blair Robertson, a guitarist and longtime blues admirer.

“I thought the whole night was phenomenal,” said Robertson. “I’m amazed at the amount of talent. It’s great we found a new place, and so quickly. Tom deserves a lot of credit. When something goes really well, you’re under pressure to keep that up, and Tom’s doing a phenomenal job.”

Robertson said the only problem is Tuesday Bluesday hasn’t grown, it has exploded.

“I see that as a good thing, since it brings better and better talent,” he said. “Tom just has the problem of getting everyone that wants to play onstage.”

That difficulty of organizing and ensuring everyone makes it onstage is the greatest stress for Mein.

“It can get hectic, scheduling everyone,” Mein said. “A lot of players drive a long way, and if they don’t get to play, they leave. That’s the last thing I want.”

Mein said he is very pleased with Zendejas Grill, and is sure it is a move in the right direction.

“Next was nice, but there’s good food here, a family atmosphere, everything we could want,” he said. “Here at Zendejas there’s more space, nicer seating, and they stay open later than 9 p.m. We always got to the end of the night at Next, and had to cram everyone in. This will help getting everyone onstage.”

Robertson celebrated the new venue’s opening night by performing the favorite “Honky Tonk Woman.” He said later this was a new song for him, a song he has wanted to perform since high school.

“This kind of event inspires you to learn a new song,” he said. “The beautiful thing is, I screwed up, but when you play with so many other musicians, they can help cover you, and together, you all sound great. It encourages people to come up and try new things.”

Regular Tuesday Bluesday supporters Jim and Paula Cowley didn’t expect the amount of talent they started seeing on a regular basis when they started attending the jam, and were also impressed with the great job Mein does every week organizing the jam.


“I didn’t expect this,” said Paula Cowley. “It grew from a little Tuesday night coffee shop to something much bigger. Tom is one of the better players I’ve ever seen. I was also surprised at how friendly everyone was. They are so supportive of young people or all the first timers. It’s a great group of people that go do it.”

Cowley said she is certain the jam will only get bigger from here, and the new venue will help them grow their reputation further.

“Everyone was starting to notice the crowds we were drawing in at Next,” she said. “I think Tuesday Bluesday will keep growing.”

House bass guitarist Rich Alfano agrees this is a good move for the Tuesday Bluesday group, and everything he’s heard from regulars suggests this was surely an upgrade.

“We’ve retained our core of regular jammers, and seem to be adding new faces all the time,” Alfano said. “The best part for me is working with talented players like Tom and John every week, and being a continuing student of the art of music, the variety of material we run through… Country, jazz, blues, funk, there’s always something different being offered.”

Mein said he has a great time performing at and leading Tuesday Bluesday, and said it is the most fun gig of his busy week. He also enjoys seeing new players come up and perform along with the group.

“That’s part of the great thing,” he said. “It’s not just about playing with others; I really enjoy giving people an opportunity to play onstage, and watch them grow better and better. After all, one gig is worth ten rehearsals. Once you play onstage, that experience multiplies your growth. And everyone is welcome at Tuesday Bluesday.”

Community Spotlight: Benevilla National Caregivers Month

Written a while ago, but now posting it. The non-profit I volunteer for, Benevilla, is a support network for dementia and Alzheimer's patients, as well as their family members and caregivers. I wrote a series a few months ago for National Caregivers Month, when Benevilla featured a different family who participates in the organization's programs and services.

The articles could feature an adult taking care of a parent, a spouse acting as caregiver, or a grandparent acting as caregiver to their grandchild. This first article was quite a story. It was an honor to help this man tell it.

In appreciation of National Caregivers Month, Benevilla chose a different member of the community each week in November highlighting the enduring devotion and love of caregivers around the world. The support these caregivers show their loved ones is an example to all that with a little help, family members with various conditions can live rich, happy lives surrounded by those they love.

John S. loves his wife, Janelle, with a passion. After years together, they had been through so much, and their love just grew deeper. But after a number of life-changing tragedies, one after the other, John made the decision to stand by that love, showing just how much family really meant in his heart.

It began when Janelle began having back pain in bed while she was sleeping. It got worse for a couple of months, and when the doctor’s antibiotics didn't work, she went to the urgent care clinic for a CAT scan.

“She got the call to come back to the clinic right now… and bring your husband,” John said. “The scan had found cancerous tumors. That was quite a day.”

The next step for the couple was to work on the cancer diagnosis with the physician, to figure out what kind of cancer it was, and what their options were.

Meanwhile, Doris, Janelle’s mother, was also a large part of their lives. While Janelle was going through chemotherapy treatments, Doris fell and broke her leg. Soon she moved into an assisted living facility, where John and Janelle visited her a few times a day.

“Up to that point, Doris had been pretty independent,” John said. “But when she had her accident, not only did she break her leg, but now she had to move. Then we had to manage her old apartment, all while battling this cancer. It was pretty hectic for a while.”

John said when Doris was in the assisted living facility, they noticed everyone there wore Depends, because when someone needed help to go use the restroom, the staff didn't always respond in time.

“After that, we decided assisted living was not a great option for us,” he said. “And there wasn't really room at our place. But Janelle had the idea that we rent a place together. So we did. It was the three of us, going through that process together.”

And so the routine went, four months of chemotherapy, every third week of the month, leaving Janelle’s body to heal in between, as well as battle the nausea and side effects. At the same time, Janelle’s mother, Doris, lived with them, needing help to get around. They also had help from family, like from a daughter in Tucson.

“There was an awful period after the first of six chemo rounds,” John said. “ We were waiting to give the chemo a chance to work, and give her body a chance to recover. We had another scan, and later the doctor came back in, visibly affected by the news he had to give. He said, ‘I’m sorry, the cancer is still there, still an issue. You’re going to have to do more, and I’m not going to be able to help with that.’”

They soon turned to a lymphoma specialist at the University of Arizona in Tucson, as well as visiting a clinic in Houston. They spent four months there in an apartment with Doris.

In December 2011, Janelle passed away.

“After the funeral services, it was just Dory and I,” John said.

And as time went on, John grew more aware something was different with Doris. Later testing showed extreme challenges in executive functions in “command naming,” such as remembering the names of different items, as well as changes in her short-term memory.

Doris had developed dementia.

“She was pretty functional until then, but one day, she turned to me and said she didn't know how to turn on the cold water,” John said. “That was the real jolt.”

John called around and got help from the day program at Benevilla, which gave him more time every weekday to run errands, while making sure Doris was still cared for.

John said Doris’ dementia came with many challenges, to the point where she once grew sick, then forgot she was sick, and did not mention the problem to John. She grew worse, and soon was admitted into the Emergency Room for observation.

“If you have no short-term memory, and your pattern is changed, you don’t know the difference,” he said. “Everything is new.”

Over time, Doris’ dementia grew worse.

“She got quiet,” John said. “She didn't want to talk or read or watch TV. She just really regressed a great deal.”

Doris could no longer go to the bathroom at night, for fear of her falling. So John installed a remote doorbell in his own room, with the remote to set the doorbell off in the shirt pocket of Doris’ pajamas. After a while, this also seriously drained John’s energy and sleep.

John found her a placement in a group home, where they can help her with whatever she needs around the clock. But when a person with dementia changes homes, it can be very rough on them, he said.

“But she still knows who I am, and I still take her out every week for her hair appointment,” he said.

John said when he found Doris had dementia, and she got involved in the Benevilla day program, the pair truly found a great support with the groups.

In Doris’ case, she has progressed through the stages of dementia quickly, while for others, the process can take years.

“I found many have been caring for their spouse or loved one for years,” he said. “I couldn't help thinking, is this going to be my life? What will become of me? I was very concerned.”

But he said no matter what the question or concern a caregiver may have, Benevilla groups can help you find answers. He said they taught him about Care Pro, which provides training and discussions focused on the caregiver.

“Caregivers can suffer from major stress, shorter life expectancy, and reduced ability to care for the person you care so much about. It’s a huge demand, being a caregiver. This person you care about, it’s a 24-hour-a-day job, but they’re less and less present. If they get up at 3 a.m. and light the stove and put a pot on and go back to bed, you've got to be ready.”

John said back when Doris was not yet diagnosed, it was still obvious that something was wrong, but he still tried whatever he could to help her get better.

“But now I know, she’s not going to get better,” he said. “The hard news is, it’s a one-way street… you get worse and worse. Sometimes you take a step forward; they speak better or have better memory, but then another step back. The recovery seems to never be all the way back to where it was before.”

John said it does get frustrating, going through so much in such a short time.

“It’s just the two of us, after Janelle,” he said. “And now she’s almost not present. It’s called anticipatory grief: you know where this is going, but you have no one to talk to or vent to about what you are going through.”

But that is why John feels the support group at Benevilla is so important. A caregiver may be facing a very tough time, but the person next to you is facing huge challenges, as well, he said.

 What pushes John through these tough times? He says it’s the sense of doing the right thing.

“You don’t want to leave any unfulfilled needs,” he said. “You want to, you MUST, do the best you can for that person, leave no regrets. If you lose a parent, and there are unresolved issues, are you going to carry those around for the rest of your life? Or are you going to address them now? My wife and I had decided we were going to do all we can. That’s how we've done that. …That’s how I've done that.”

Dementia in a family member is a life-changing experience, for all involved, but John wants everyone to know that if it happens in your family, you don’t have to go through it alone.

“Connect with others who are doing this,” he said. “There are different support groups for different stages, whatever spot you’re in. That’s huge. Have a sense for what’s coming, and how to handle it. There are a handful of certain behaviors people with dementia often show… You need to know how to handle it.”

Community Spotlight: Surprise Community Garden opens with great turnout, hope for a great future

By Matt Marn

Over four years of sweat, funding, and hard work from people all across the community has finally begun to bloom for everyone to see. And what a sight it is.

Michelle Dionisio, President and CEO of Benevilla, took the stage to welcome visitors and volunteers to the grand opening of the Surprise Community Garden Friday evening, October 26.

She told the crowd the garden had been a joint project of Benevilla’s, together with the city of Surprise and Rio Salado College. The main goal, Dionisio said, would be to bring generations together, and to do good work in the community.

The Surprise Community Garden is located in the city of Surprise at Lizard Run Park, next to Benevilla’s main campus. It will serve as an important space for area residents, young students and organizations to learn about growing food in a harsh desert environment. The garden will also provide an opportunity to grow fresh produce to help battle hunger in the community.

The garden will hold 37 beds of soil. While some have yet to be built, many more are ready and available for adoption or donation. Each bed has a dedicated water line and specially blended soil. You can also lease a bed, or use a smaller vine circle to flex your green thumb.

No matter how you plan to use the Surprise Community Garden, rest assured you will meet wonderful people, have a great support system of other gardeners, and help this project bring people in the community together from all generations.

Keva Womble, the Philanthropy Project Manager of the Arizona Community Foundation, told the audience her organization was proud to be partnered with Benevilla in this “Community for All Ages” Initiative,” so together, they can help communities grow better able to address critical issues and promote well-being for every generation.

The event welcomed to the stage representatives from the city of Surprise, Rio Salado College, and other groups who worked hard to make this event and garden possible. One such woman was Cherie Czaplicki, Chair of the Surprise Community Garden, and herself a Master Gardener.

“I have to day, tonight makes my heart sing,” Czaplicki said. “I have met with these people for three years, and I’ve never seen a warmer or more knowledgeable group of folks, right here in my own community.”

She said she felt at home around Benevilla and its devoted volunteers, many of whom also worked for years on this garden.

“I love working with volunteers,” Czaplicki said. “I’ve been a Master Gardener for almost 20 years, and I’ve learned how wonderful volunteers can be in the community. It’s kind of telling when I walked into the conference room in Benevilla, and I see my mantra on their wall, the words of Margaret Mead: ‘Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.’”

Dionisio and the volunteers who worked so hard on the garden also made sure to recognize the members of the local business community that donated materials and manpower to help turn the garden from an idea to the reality the crowd came to celebrate.

“Everything – literally everything you see in this garden has been donated,” said Bill Grigg, a Community Garden volunteer. “We have a lot of volunteers – and remember, this is a community of all ages. Community means everyone. The business community also stepped up in a big way to make the garden a reality and bring it to life.”

Finally, Dionisio took a moment to recognize a special young man who also helped in getting the garden where it is now. She brought up Anthony Sarabia, an Eagle Scout who made his work in the garden his Eagle Scout project.

He built and installed the garden’s vine circles – smaller plots of land also available for lighter gardening. While he was given the designs by another volunteer, Sarabia built the vine circles himself.

“They are beautifully done, and they’ll be there for a very long time,” Dionisio said. “I will say, he’s a very talented artist, and he sold his photography work to raise the money for the materials he needed.”

After the ceremony, Richard Sarabia, Scout Leader and father of Eagle Scout Anthony, expressed how impressed he was by his son, and how much this project helped him grow as a young man.

“We got an email on a possible Eagle Scout project, and my son responded,” he said. “He raised the funds, built the vine circles, and brought in volunteers to help install them. I didn’t know how much my son would have to come out of his shell to accomplish this job. And the rest of the troop… It was a lot of hard work, it was character building.”

Scout Leader Sarabia would certainly like to stay involved with the garden, and the concept is something he really appreciates.

“I mean, there are 22 beds left to fill, and the boys have the muscle,” he said with a smile. “Moving dirt is their specialty now.”

The garden is already in good hands, with many plots already in use by skilled and devoted gardeners. Curt Wegmann was the first owner of a plot, and with over 50 years of gardening experience, his plot is already full and beautiful, drawing a crowd.

“All the work that went into this was incredible,” Wegmann said. “Two months ago, there was nothing here. Now I come out here every other day; to take care of it, water it, fertilize it… It’s not work. It’s just such a pleasure. Life is too short, enjoy it. Make the most of it.”

On the other end of the garden from the experienced gardener Curt is a troop of Girl Scouts, none of whom have ever had gardens – and who are very excited now that the plants are starting to sprout.

Lisa Miller, the leader of Girl Scout Troop 902, said the Silver Award is the highest award that can be earned by a Girl Scout Cadet.

“For the Silver Award, you need 50 hours of community service, and it has to serve a need in the community. They saw a need, and they decided to grow food in the garden to donate to a local food bank.”

Miller said the 12 girls in the troop have been working on their garden bed – and the garden itself – from the ground level.

“’The Community for All Ages’ really is for all ages,” she said. “There are all types of age ranges. They’ve had a lot of help from the people who know what they’re doing. It helps to have gardeners who know what to grow in Arizona.”

Miller’s daughter and troop member, Madison, really enjoys working on the garden with her troop.

“We go to the meetings, and get great pointers on what to do and how to grow,” Madison said. “It’s a chance for extra community service, and this troop is all about community service. I think the best part is being with fellow Girl Scouts, and knowing the vegetables will be in good hands when we donate them to the food bank.”

Dionisio was also pleased with the turnout for the grand opening.

“When you bring a community together, everyone brings their own skills and talents, and it can turn into something great,” she said.

So far, the goal of creating a community garden for all ages appears to be off to a great start. Stop by Benevilla’s main campus and see it yourself, or if you are interested in starting your own plot in the garden, or helping with the volunteer work, contact Vicki White at (623) 584-4999 or Cherie Czaplicki at (623) 910-5239.

For more information on Benevilla, visit www.benevilla.org

Valley musician overcomes trauma, uses talents to inspire others

By Matt Marn

Also posted on AZCulture.com

Bob Iriana has always been a passionate musician, from when he was seven and first picked up a saxophone to graduating from Berklee College of Music in Boston.  But today, his love for music and performing is more than a passion – music helped him survive a trauma that changed his life forever.

What’s more, he uses his talents to help others going through the same.

Music Right from the Start

Iriana said music has always been a part of his life. He said he started playing saxophone at seven, since he was lucky enough to live in a town with a decent music program. He started playing on the alto sax, but later they switched him to tenor sax.

“I was a big kid, and they thought tenor may be better for me,” he said with a smile.

As the years went on, music remained a strong passion. He has learned to play on four types of saxophone, including the alto and tenor, clarinet, flute, and various other wind instruments from cultures and regions around the world. And his love for music only continued skyward.

“I’ve always played in bands as a teenager, through my whole life,” he said. “But out of college, I got cancer, so I thought I’d better have a day career – one with health insurance – and I could play at night. I didn’t want to travel the country, I didn’t do it for the money; it’s about playing the music. That’s why I go to all these jam sessions in the area, and I can play with different people in different genres… It’s just so much fun.”

All the while, Iriana has also carried both the burden and blessing of a condition known as synesthesia. Synesthesia is defined as “a subjective sensation or image of a sense (as of color) other than the one (as of sound) being stimulated.” In Iriana’s case, when he hears sounds, he also sees colors (and vise versa), which varies in color and intensity based on the frequency of the sound.

“I’ve always had an association with sounds and colors,” he said. “It always got stronger with music.”

Iriana didn’t know anyone else that had synesthesia until I went to Berklee, where he met five.

“It’s actually more common in the musical community. It’s not the same between any two of us. For me, lower notes on the scale appear as violets and blues. Middle notes appear as yellows and greens, upper notes are orange and red. Some people I’ve met, these colors are exactly reversed. There are always variances between us.”

Iriana said the condition is difficult to explain to others, and the fact that it is an ever-changing condition doesn’t help. He also said not only does he see different colors based on the notes, but those same notes can also manifest as different colors or shades, based on the instrument.

A Life-Changing Trauma

But the music came to a sudden stop in January 2008, when Iriana suffered a severe stroke, leaving the entire left half of his body paralyzed. Over the next few years, he was forced to re-learn how to walk, talk, eat – re-learn to do everything we now take for granted. He had to start over.

“For the first year, I couldn’t play at all,” Iriana said. “I barely tried. For the first few months, I had trouble even eating, walking, and basics like that. Later, I could barely play; I couldn’t blow, couldn’t hold air in my left cheek. When I told my left side to hold a note, the wrong finger went down.”

He said once he started practicing again, he knew the basic notes, but had to re-learn the rest. He hears the sounds, but still has trouble controlling his left hand.

Even today, the stroke continues to have a strong impact on his daily life.

“A lot of what I used to do, I can’t do anymore,” Iriana said. “I battle mental fatigue… My day consists of alternating activity periods and rest periods. My brain gets tired, and then my left side is affected. The longer I stay active, I have to rest or sleep that much longer. I try and manage this, but I’ve done stupid stuff before, I have overdone it and wound up in the ER.”

Iriana said he feels like he can play at about 25 percent of what he could before.

 “The frustration you go through with a stroke… it changes a lot of things,” he said. “You have to re-learn things a new way, or just avoid some things entirely.

Iriana estimated he only gains about five minutes per year of extra energy. The first year after his stroke, he only had about 15 minutes of energy before he grew too fatigued. The year after that, his energy grew to 30 minutes, then 45 the third year. While he used to play for four, even eight straight hours, now he can only practice for around 30 minutes at a time.

“Under ideal conditions, no distractions, I can stay focused and alert for about an hour,” he said. “When I get up, I have to plan out my day. For every hour I am active during the day, I usually need about three hours of rest. I have to plan my life around this problem of mental fatigue. It can get really frustrating.”

Iriana remembered earlier in his adult life, when he was always active, he used to work 10 or 12 hours straight, then sit in with a band as they performed that night.

“Now, I have to schedule everything out. That’s the dilemma I face; I have things I’d like to do, that would make me happy, but I’m going to pay for it. As with all things in life, I have to find a balance.”

Another thing he learned from the stroke was to learn to adapt, to work with what you have. Whether it’s using the instrument a musician has instead of complaining and wishing for a better one, or his inability to go long periods of time playing without taking rest breaks, Iriana learned to make the best of what he has been given.

Iriana’s synesthesia was also affected. It disappeared for a few years after the stroke. That was when the weight of the stroke truly took its toll, and Iriana fell into depression. After a few years, the synesthesia returned, though different – not as sharp as before.

“For me, I’ve always had the advantage of the colors,” Iriana said. “I’ve lost some of that, but I’m still working on getting it back. Sometimes, re-associating music with colors is like re-learning the sax. I can get overwhelmed.”

Iriana said just taking it step by step, but never giving up, helped him recover from the stroke.

“Unfortunately, some stroke survivors just sit there and watch TV,” he said. “And they wonder why they don’t get better. They need to do something, to learn something. When they tried to get me to walk again, they told me to just put one foot in front of the other. Or when they tried to help me speak: just say one word. Then say two. Repetition was the key.”

Iriana is making progress to this day. There are things he can do this month he couldn’t do before.

“Dealing with this in the early stages after the stroke, I didn’t handle it so well,” he said. “That’s why I was also diagnosed with depression. But they taught me not to sweat the small stuff. The biggest thing that bothers me is the unreliability. I want to do something, but then I’m too worn out, and I miss a jam, or two, or all of them this week. It’s frustrating.”

Inspiring Others by Inspiring Yourself

Iriana occasionally reminds himself of other examples of similar adversity. Iriana said he admires Melody Gardot, who was hit by a car on her bicycle, and was paralyzed and suffered brain damage. Music began to play a large part in her recovery, and soon she began to learn to play guitar and write her own songs.

Today, she is a Grammy Award winner.

“She’s like an inspiration to me,” Iriana said of Gardot. “She had right side brain damage, like me, so she couldn’t move her left side. And like me, she is hypersensitive to sound, but unlike me, she is also light sensitive. She has to wear sunglasses all the time. When I have down days, I just go listen to her stuff.”

Iriana is also an example of perseverance to others in his situation. He has begun visiting clinics in his area and performing for their recovery groups, often for others who have suffered brain trauma.

“I have learned I’m good at helping people,” he said. “I also like to play for others recovering.  Again, I’d love to do more, but some places are out of safe driving range. I’ve played at a stroke recovery center or group, veterans with war injuries, or motorcycle accidents.”

He likes to do this for support groups of brain trauma patients, as he knows what they’ve been through.

“There’s always that fear if I’ll never be able to do what I used to,” Iriana said. “I know what it feels like to be really down. And, I know the secret to not feel down: just take the first step. Then the second. I know, you can’t help everyone, but I’ve met some people who hadn’t, who were afraid to take the first steps, then they started to help themselves. When I met them, some were in a wheelchair. Now, they are walking. Helping people helps me.”

Mixed Media

Another way Iriana helps others is utilizing his synesthesia to enhance the work of local artists. He has collaborated with numerous artists in the community, playing his music along with the artwork, relaying to others what sounds the pieces trigger in his mind. He has played these complimentary music scores at exhibitions and releases of the artist’s work, always with impressive feedback.

Iriana often writes the piece inspired by the art in advance, but leaves plenty of room in the beginning and end open for improvisation. Because improvisation, he said, is one of the best parts of music.

“Once improvising gets into your bloodstream, it becomes something you’ll always want to do,” he said. “Talk about addictive… It’s a form of discovery. With composing, you have the luxury of going back and making changes. But with improvisation, you don’t. If your music was good, that’s good. If not, that’s still good… you can learn from it.”

Iriana said he loves to do this type of project to help other artists he can identify with. In fact, he said he’d love to someday work on an even bigger project for an art piece. His dream would be to start with a piece of music he had written for the artwork, then take that music and create a light show in the room to help others see what he sees, to help them get that same feeling when he hears music.

“I’d love to do more, but I only have so much energy, so I have to divvy it up,” he said. “It would take some pretty advanced lighting systems triggered by different frequencies. I don’t have that experience, not to mention the mental energy that would require.”

Advice to Live and to Play By

Bob Iriana doesn’t think of himself as an inspiration; he just plays music for love of playing music.

In addition to learning to adapt to what situation you have been dealt, he also urges musicians to always push themselves to improve, to raise the bar. That’s the only way you learn, he said.

“No matter where you’re at in your development as a musician, you always have to push yourself,” Iriana said. “Never make it a competition. In fact, always play with people who are ‘better than you.’ That’s how you grow and learn. At some point, those players had someone help them the same way.”