Wednesday, November 26, 2014

Not Your Typical Travel Story

PHM 0414 BT1The Valley travel expert stays put, but takes a life-altering journey with help from a friend.

It had been 36 and a half years since he took a drink, something he was very proud of. But as he lay on a hospital bed, Ray Lamb for the first time thought about ending that streak. “That’s the day I was told by doctors it was very possible I was never going to walk again and most likely would be in a wheelchair for the rest of my life,” Ray told me.

Four hours later, he talked himself out of his depression. “I remembered the hangovers and I knew that drinking wouldn't solve my problems.”

I've known Ray for more than 10 years. He's made a lot of money, lost a lot of money, and loves to be outdoors. He's supported my charities, offered financial support to many others, and is the kind of businessman who can be a bit intimidating, aloof at times, and, if possible, likes to get his way. Whenever I asked my husband Kenn how Ray was doing, the answer was always something like “Heli-skiing in Canada,” or “Biking in Vail,” or “Making more money.” However, after June 8, 2013, the answers were different. They ranged from “Still in a coma,” to “He lifted his finger,” to “He's being transferred to Barrow Neurological Institute.”

Today, Ray spends about two days a week in therapy at a place in Downtown Phoenix called the Center for Transitional Neurorehabilitation, or CTN. I know it well. My stepson Dylan went there for a year after suffering a massive brain hemorrhage – caused by a congenital defect known as an arteriovenous malformation – in early 2012. Ray also had devastating brain trauma. At 2:54 p.m. on that day last June, Ray was biking the same 22-mile route near Vail Village that he had biked over a hundred times on vacations. He turned around to warn his riding companion about some fishermen stringing lines along the bike trail. He was looking out for someone else's safety. That's when he lost control of his bike and fell. He suffered a diffused axonal, one of the most severe traumatic brain injuries (TBI) you can get.

The circumstances that led my 16-year-old stepson and 73-year-old friend to the same rehab center weren't identical, but it felt like the same nightmare repeating itself. Dylan was playing capture the flag with friends when his injury happened. Ray was engaged in one of his favorite pastimes. Dylan was in a coma for five days. Ray was in one for almost nine. Like Dylan a year before him, Ray was struggling to breathe without a ventilator, swallow so he did not need a “peg tube,” respond to the simple command of sticking his tongue out, and sit up for two seconds without falling lifelessly back onto his bed, exhausted because it took so much energy to sit up. Our good family friend, who would frequently check in on Dylan's progress a year earlier, had to re-learn the same basic human functions. For someone who loves to travel, it was the beginning of a journey that has no tangible destination.

The Journey Begins
“Ray, I want to do my April travel piece on you to coincide with the Top Docs issue. It’s about your journey and how travel is different for you now.”

Ray didn’t love the idea of being the focal point of the story, which is funny, since he never shied from the limelight before. “Tara, there are so many patients at CTN with better stories who are more deserving,” he said.

That might be true. But I’m convinced we can all learn something from Ray. Plus, as his friend, I couldn’t be prouder of his progress.

After Ray fell, his riding companion yelled out to him to pick up his bike so they could keep going. She had no idea that by the time she approached his landing spot, he was already unresponsive and out cold. Another biker on the trail, Ryan Sullivan, stopped to help. He held Ray’s head for 45 minutes while a  call was made to 911. It was 54 minutes before an ambulance got there.

Anyone who knows something about brain injuries will tell you that time is the difference between life and death. It’s the difference between speaking or not speaking, waking up or not waking up at all. You also tend to see things in minutes and hours and days – like a prisoner counting down his sentence. Ray woke up about nine days after his accident in a Denver hospital tethered to a bed, disoriented, and in a lot of pain.

“I saw the tubes going into my body and I realized this is pretty serious,” Ray told me. It was also pretty frustrating. At one point, Ray pulled a Mike Tyson, and tried to bite the gloves that had been placed on his hands to protect them and keep him from pulling out his feeding tube. Later, when he was being transferred to a different brain facility, Ray locked his wheelchair for 1.5 hours in 97-degree weather and refused to go. He said he was done with therapies, was fine, and ready to go home. That’s a common response from brain injury survivors, who are just tired of it all. They lash out and want to be heard.

It’s a process that leaves a brain injury survivor scared, embarrassed, angry and most of all, out of control. Despite four nurses and three security guards pleading with Ray, it was a friend who succeeded in getting him into the transport vehicle that day. The friend simply wheeled Ray around the hospital grounds until the exhausting brain injury victim collapsed in his wheelchair and fell asleep – i.e. “perfect transfer mode.”

Ray admits he wasn’t a great patient. He yelled at most of the doctors and nurses, and didn't always say the nicest things to his caregivers and close friends.

That’s another thing about brain injuries: It’s important for loved ones to remember that when you’re dealing with a TBI, you can’t take things personally. My stepson told me he “hated my guts” every single day for weeks. I told him I loved him no matter what. Patients don’t understand that we’re trying to help and we don’t understand what they’re going through.

A few months after his accident, Ray was sitting in his hospital bed trying to button up his shirt, a simple act most of us do without hesitation. “You’re sitting there trying to button a button and you can’t button it. Then you have to lower yourself to ask for help, and there’s a person saying ‘Ray, you’re getting better at this,’ and you’re thinking to yourself,  ‘Are you serious? I can’t button a damn button.’”

When you’re watching someone recover from a brain injury, your instinct is to celebrate the tiniest things. It’s our nature. But Ray reminded me that the rampant positivity can feel humiliating, especially to a successful businessman who once jumped out of a helicopter to claim the first powdered run off the top of a mountain in British Columbia. Now, Ray had to learn to walk again, swallow food, button a shirt. It’s a delicate balance that was very difficult to adjust to. “I have been in business for myself since I was 26 years old,” he said. “It was very discouraging to be so dependent on other people and now take orders from them, when you’re used to giving the orders. You come to a point of acceptance that there are things you cannot do that you once did with ease. That was hard for me, since I’ve been my own boss almost my whole life.”

 On September 11, 2013 – about three months after his accident – Ray was transferred from Colorado to Barrow Neurological Institute in Phoenix, and then to the program at CTN. After almost 90 days in the hospital, Ray was able to walk slowly to a car, be driven home, and start months of outpatient therapies. I’m glad he never took that drink. The doctors who told him he probably wouldn’t walk again were wrong.

Fasten Your Ski Boots
One of the best things about CTN is that the therapists work together with everyone involved – families and patients – with one goal in mind: Help those who have suffered from brain injuries transition back into a life they’re proud of. Dr. Pamela Klonoff, the Clinical Director of the program, says the team’s job is to help patients and families find “awareness” (knowledge of post-injury strengths and weaknesses), “acceptance” (coping with deficits, also using compensations) and “realism” (finding attainable goals) to find the balance point of healthy vigilance along a spectrum of either insufficient involvement or stifling overprotectiveness. Everyone works toward the goal of a “new normal, predicated on self-efficacy, mastery, happiness, meaning, productivity, and hope for the future,” Klonoff says.

Knowing Dr. Klonoff, I smile, as she can get technical. But her approach is why my stepson is graduating high school in May, and why Ray is able to travel back to Colorado and realize one of his dreams.

One of Ray’s CTN therapists, Maura Rhodes, saw Ray’s desire to get back on skis, something Ray’s friends thought was impossible. Not only that, those friends had genuine concerns. A fall on the ski-slope for Ray now meant something very different than it did a year ago. Fall hard enough and hit his head again, Ray may never get up at all. Maura contacted an adaptive ski program in Vail and put Ray in touch with Katie Zinn, a young instructor who had spent most of her life making the impossible possible for those with limitations. Katie understood Ray’s friends’ concerns. But even more important than those fears was Katie’s belief that, “This is something that is important to Ray. It involves a risk, but so does getting up and getting out of bed. Ray wanted a sense of freedom and a sense of his life before his injury. I’ll do what I can to eliminate that risk. I can minimize it... but I can’t eliminate it.”

PHM 0414 BT4On December 23, Ray’s friend helped him fasten on his ski boots and he made his way up the bunny slope Golden Peak, chair lift 12, in Vail with Katie. He didn’t know what to expect. Could he ski at all? It didn’t help that, after getting off the lift, he turned left, then right, then fell. Ray was heartbroken. Katie was determined. “I told Ray, ‘It’s okay to get mad. Go ahead, hit your fist on the snow,’ which he did.  ‘Now, get over it. Amazing things are going to happen from this point forward.’”

Ray slowly made his way, with Katie’s help, down that green bunny slope, probably the first green he’d skied since he was a kid. His whole life had been blues and blacks. His feelings were mixed. “I was elated that I could ski at all. But I felt deflated watching these kids, who didn’t stand tall enough to reach my hip, blow past me. And the lift on the slope is set low, to accommodate a child. I kept hitting it with my boots.”

Ray has now been on a ski slope 13 times. It’s not pretty. He’s slow, always skis with assistance, but he’s skiing. Some of his friends still think he’s taking too much of a chance. He’s attempted tennis four times, even tried to ride a bike once. (He snuck that one in without any approval from his therapists. Made it 10 feet and got a nice reprimand.) But he’s not giving up. One day, he told Katie, he wants to heli-ski, with help of course. “Every time I ski with him I am amazed,” Katie told me. “Eight months ago, the guy was laying in a bed. He didn’t know what was going to happen. He couldn’t move for months. For Ray to take life and love it and try and follow his passions is huge. People like Ray are what changed my life. People like Ray inspire me.” Katie, you’re not the only one.

The Co-Pilots
The hard reality is, when someone suffers a traumatic event, they’re not the only ones who suffer. Those closest to them suffer as well. In our family, we took shifts standing by Dylan’s bedside, 24/7, through four brain surgeries, a week in a coma, and over a year of therapy.

At CTN, relatives and loved ones meet once a week to check in, get a break, and talk about the progress of their “patient.” It's a chance for them to get a little support as well. There wasn't a Thursday in 2012 that we didn't leave those meetings inspired and awestruck by the power of determination and love. And, like Ray, we have met all kinds of incredible people. Like Missy, the young girl who suffered an anoxic brain injury after being kicked accidentally by her beloved horse, only to work through years of therapy and finally have the courage to get back up and ride. Her mother was beaming when she told me Missy just graduated from a walker to a cane. Then there's Kenny, the devoted husband who was finally able to take a guys' trip after staying by his wife's side for two years following her stroke. Or Daniel, who almost lost his life in a snowboard accident. He's working again and participates in an adaptive program in Telluride.

As a family, we've been all over the world. We are blessed. Our first trip together after Dylan's injury was to Thailand for New Year 2013. I wanted to say “goodbye” to our difficult year and ring in a new one in a big place and in a big way. And even though I thought I did a great job planning a vacation for a family that now included someone who could not hike or run, I still overlooked the simplest things: Dylan navigating through a crowded temple,
Dylan trying to bathe elephants and walk across completely uneven terrain marked by even more uneven rocks. When you have someone in your life with limitations, travel changes. So does your perspective, and moments with your family become much more important than anything else.

After almost dying, Ray Lamb is a different person. “I have been close to death. I visited it and I didn't stay. You start seeing your life differently. That has changed my life. Sharing things with others, sharing meals with friends, that brings me more joy. I am grateful, but I am still not grateful enough. I hope that will change. It's a journey that never ends.”

Ray has a marathon ahead of him. He can't really feel sensation in his right leg, which challenges his balance daily. The right side of his face feels numb, “Like when you get novocaine at the dentist, but the novocaine never wears off.” He can't drive. He can't run. He fatigues easily. But he's alive. And he's not giving up.

By the way, the man who cradled Ray in his arms for almost an hour the day of his accident, Ryan Sullivan, met the “awake” Ray for the first time over the holidays. Ray invited him to dinner. Ray found out Ryan kept Ray's bike the whole time and returned it to him that night. Ryan found out Ray has a killer sense of humor, and that his new friend was about to take his first ski lesson since his injury. I'm not sure if he knows that Ray has set his sights on peaks much higher now, and I don't just mean the snow-covered ones.

Watch Tara's Reel Travels Thursday mornings on CBS 5 KPHO or visit taraontv.com.

 

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Tara and her family in Thailand, 2013; Tara's husband Kenn Francis with Dylan in ICU

Living Life & Traveling Out
Arizona Disabled Sports: Executive Director Lane Gram helps make the impossible possible for anyone with physical disabilities. From recreational weekly and bi-weekly programs that offer everything from kayaking to bowling;  to programs for those who want to "up it a notch" and even compete in a sport they didn't think they could play again.  Highlights: their "to be reckoned with" wheelchair basketball team. For children and adults with physical disabilities. (480) 835-6273 arizonadisabledsports.com

Brain Injury Alliance of Arizona: Executive Director Kim Halloran helps provide a one-stop shop for children, adults and families affected by concussions, brain tumors, strokes, aneurysms and traumatic brain injuries. For 30 years, the BIAAZ has been helping thousands of families, guiding them through their journey. They can connect patients to an adaptive program, even if it's not in Arizona. Highlight: Kamp Kan-Do, a four-day retreat where survivors can continue building living skills and just have fun! (602) 508-8024 biaaz.org  

Barrow Connection:  Jo Crawford runs a great program that bridges the gap between a hospital stay and the community. "We used to hand out a big resource guide, but found out patients wouldn't use it. Now we give them mentors, 'connectors,' who help them start living life and doing things they like to do." Highlights: "Day on the Lake"/"Drive to Excel" program at Bondurant School of High Performance Driving. For anyone with a physical/neurological disability. (602) 406-6280 thebarrow.org/connection  

SpoFit: The Virginia G. Piper Sports and Fitness Center for Persons with Disabilities (SpoFit) is an amazing 45,000-square-foot, $13 million dollar facility in Phoenix. SpoFit offers adaptive sports, recreation, aquatic and fitness programs for people with disabilities and family members. Highlight: Recently awarded the bronze medal through the Paralympic Sports Club Excellence program. (602) 386-4566 spofit.org

 

Adaptive programs: Great destinations to try what you love
Ray's adaptive ski Program: If you love Vail, this is the program for you! vail.com (look for “adaptive lessons” )
Colorado: Several ski programs and other overall adaptive activities can be found in our border state. If you want to hang with the likes of Tom Cruise and Oprah, maybe Telluride is more your style (tellurideadaptivesports.org). Or give Adaptive Adventures (adaptiveadventures.org) a call for kayaking, hiking, you name it.
Hawaii: There are many adaptive surf programs on the islands that make the ocean accessible to everyone. Honolulu hosts a great one. accesssurf.org
Maine: maineadaptive.org offers year-round recreational programs for people with physical disabilities. They've been around for decades!
California: sharedadventures.org and others exist throughout California. Any local resource can help connect you.