It seems as if mainstream society has trouble understanding how wheelchair users could possibly live contented lives, let alone happy ones. But is it so surprising? After all, those of us who have lived a long time with our disabilities have been finding ways to adapt and prosper for years. Perhaps there’s a more important question: What specific factors in our lives are most likely to lead to happiness? To get some answers, I talked to four people, all wheelchair users, who represent a wide range of experience. Then I added in my own story.
Randy Alexander: Discovering the Tractor Dream
Tractors aren’t usually associated with fun, but they do have toy-like qualities, and they prepare the soil for growing much of what drives our lives: food, fiber, dreams.
Randy Alexander, 46, never considered farming until it just magically happened. “I’m a city boy, grew up in Phoenix, loved crowds and nightlife,” he says. Then in 1992 he had the distinction of being shot while stealing Bush/Quayle election signs from someone’s lawn. Sounds like a legendary story told by a gaggle of drunken liberals around a campfire, but it’s true.
As a C6 quad he got involved with ADAPT, wound up in Memphis and became active in the Memphis CIL. “As I became more involved in advocacy and community organizing, I also examined myself, my place, my thoughts, life, community,” he says.
So how does that lead to farming?
“Through that work and learning, the issues of food, food security and modern industrial farming kept coming up in different ways. Farming is one way to work toward a more local, more equitable, more nutritious way of feeding people. Plus, I just flat love being outdoors and hard work.”
Now for the simplified version: He also met and fell in love with a dynamic, good-looking young woman from Maine who had interned on an organic farm and moved to Memphis and become involved in community gardening. Josephine, 33 — Jo from this point forward — mentioned to him that she wanted to raise chickens but didn’t have the space. Alexander offered his back yard, tore apart a used wooden ramp and set about transforming it into a chicken coop.
Fast forward: One day Jo, gathering eggs, discovered a shiny new engagement ring in a hen’s nest. Another legendary story, also true.
“It kind of evolved organically,” says Jo, who talks in puns naturally. “We started thinking, now that we have two incomes, let’s look at homes, then — why not farms! I doubted I could do it by myself, but when I pitched the idea to Randy, he got excited and that gave me confidence. We can do it together. We can share that dream.”
They cruised properties for months, then came upon Tubby Creek Farm in Ashland, Miss. “We pulled up here, and there was nothing,” says Alexander. “She took off, and when she came back, I could tell from the look on her face that this was it. The front third was old pastures and some fencing. We saw where we could put a mobile home, there was a place for a greenhouse, pastures, nice nearly level soil. And it was beautiful. Trees in the background, cedars all around. Really picturesque.”
The dream was becoming real before their eyes. And there is nothing more real, more solid, than dirt. “There is something natural about getting your hands dirty,” says Farmer Randy. “It’s creative, protective, taking care of little plants and animals, meeting all these people who become members of our CSA. And it’s all about enjoyment. It’s really quite a beautiful thing.” Patrons who join a CSA, or community sponsored agriculture, pay a yearly fee for a share of whatever the farm harvests each month.
Now that the Alexanders have transplanted themselves to the farm, how does all that work affect their relationship?
“Jo and I enjoy working together, we are around each other all day every day,” says Alexander. “We deliver produce boxes to two different drop-off locations, one at the University of Memphis and one at a farmers market. So far just a few people come here.”
Not counting Jo’s organic internship, neither one has prior experience with farming. “My grandparents and aunts and uncles were farmers,” says Alexander. “But until we got into community gardening, there was nothing. We got into it and took over our neighbors’ yard. When I saw I could do more than I thought with gardening, it opened up the idea of farming for me. It was the transitional experience I needed.”
They have an antique tractor fitted with hand controls, a 1949 Farmall Cub that pulls a 4-foot disc. A new larger tractor, an XR 4150 made by LS, has 50 horsepower, will have hand controls by the time you read this. It will pull a 6-foot disc, has a bucket, bush hog, box blade, and a bed shaper on the way. They will be able to plant more ground, get more efficient, boost production. They grow cover crops and disc them in, improving the soil and banking nutrients for future crops — the heart of organic farming.
What is most important to their happiness?
Randy: “Relationships. Money, not so much, as long as I can pay my bills. I’ve been a lot poorer than I am now, and I was happy then. I’ve always been someone who is content with circumstances, living on SSI, lived in a really rough neighborhood. Money is not an issue. We are pretty damn happy.”
Jo: “We appreciate the simple pleasures. Nothing better than eating food we grow ourselves and enjoying the outdoors. Those are the ways we are rich.”
What attracted them to each other?
Randy: “Besides her being really attractive, she is really a hard working smart woman, conscious of community and culture, very self aware.”
Jo: “It was one of those mysteries of the heart. I was just instantly attracted to him. He’s assertive, principled, knows what he stands for, has strong convictions but is still very gentle. He’s good at letting other people take the lead and helping others be leaders while he’s kind of quiet in the background. And he’s compassionate.”
No wonder they are happy. They are embarking on a dream they both share, they love what they are doing, and they love each other.
Young Woman in Transition
You have seen her before. On the cover of this magazine, dressed in sleek black, her blonde hair thrown back beneath the retro klieg lights, posing in her TiLite as a 1950s glamour queen. Actress Teal Sherer, 35, a L2 para, has performed with Kenneth Branagh and Dustin Hoffman, has written and produced an acclaimed play and won awards for her Web series, My Gimpy Life. But her quest for success is not without frustration, if not rejection. Such is the life of any aspiring actor whose talent often goes unrecognized or misunderstood by agents, producers or casting directors who focus on wheels and spokes rather than the gifted artist who uses them.
In February 2013 Sherer moved from Southern California to Franklin, Tenn., a suburb of Nashville. It helped her see her life in a new light. “I was basing all my happiness on the entertainment industry — what roles I was getting or not getting. I love acting, but I kind of lost track of why I loved it so much, got stuck in thinking about the negatives, not getting a part, what did I not do or do wrong.” Self-doubt and second thinking is a byproduct of Hollywood, but Sherer casts no blame. “Los Angeles is definitely a high pressure place, but it’s not the city’s fault. It was my relationship with acting that got out of balance.”
So she and her husband, Ali Alsaleh, who were married in 2010, moved less than 200 miles from where Sherer had grown up (near Knoxville). “We wanted to move but be in a city that also felt like a small town. We had talked about having children, a good place to raise a kid, the cost of living. We looked at some homes for sale in LA and it was depressing seeing how much everything costs.” Franklin was not far from Sherer’s family, but later that year her mother suddenly died from an unexpected sepsis infection following rotator cuff surgery.
It was a shocking, sad and weird turn of events, but looking back, Sherer is grateful for one thing: “I’m so thankful we were here, instead of LA. My sister and I are now so close. Mom died in November. We had just wrapped filming the second season episodes of My Gimpy Life the first part of October. From there I went to Atlanta to dance for Full Radius Dance as a guest artist, and that’s when she got sick.”
Six months later came another life-changing event. “I got pregnant, and it was crazy going through all that without Mom. She was nervous about me getting pregnant because my body had been through so much. The accident happened in 1995, and my Harrington rods were taken out two years later because they were hurting me,” says Sherer. Then living in LA in 2007 her back kept popping, so she drove herself to emergency. Her spinal fusion had come unfused. “It took three surgeries to repair that, my bones were brittle. I had a lot of bleeding in one surgery and almost bled to death, and I also had augmentation surgery on my bladder. Mom was always there with me, so going through pregnancy without her was hard.”
But worth it. “River, my son, is my world right now, and of course, Ali. We meet with friends and cook dinner, drink wine. Franklin has a great historic area, it’s a small, family town, a lot of activities going on, and there is wonderful music, being just south of Nashville,” says Sherer.
So different from her LA life. “It was go go go, I felt guilty just relaxing. It was always what project is next, what networking do I need to be doing, always hustling. Now it’s nice just not having an agenda, having friends. Now I’m in Mommy mode.”
Alsaleh is in IT at Corizon Health Care, which manages health care in prisons and jails. “He is very supportive of me,” says Sherer, “very much a handy man. He built a changing table for River and me, built a desk, bed frames, a table for the back patio. He’s a jack of all trades. I needed help editing some videos and he even helped me with that. He is really good with teaching himself. And he’s great for helping with adaptive modifications. He ripped out stuff under the sink so I could roll under, built cabinets that can be pulled out.”
She’s immersed in Mommyhood. “River is the most important thing in my life. I will be very particular about what I spend my time on now. Whatever I get involved in will have to fit into my life with River and Ali.” Her priorities have changed.
“A part of me misses being in LA in the acting world,” she says, “but then I love my life right now and being a mother. I’m still acting, have an agent, did a one-day shoot for a Starz show — Survivor’s Remorse — went to Atlanta when River was just 9 weeks old.” LeBron James is the producer of the sitcom. It was a small role, just a day of work, but good for her, she says, because it brought her into Atlanta, paid for her travel, put her up in a hotel. “It was the first television part I booked, ever. It was cool, considering I’m now living in Nashville after living in LA for eight years.”
Sherer says she needs to find the balance of being a mom and continuing with acting. But she knows her baby and her family come first. “Now I’m finding happiness in being a wife and a friend and a mom,” she says. It’s about relationships.
“It’s odd that society does not acknowledge and celebrate caregivers,” says Sherer. “That is what I am doing now. Being a mom is the most important job there is. You are raising a child, building a foundation. It is a privilege.”
Leaving the Nightmare Behind
Never mind how Jen Goodwin, 32, became a C5-6 incomplete quad seven years ago. As with many of us, it was frightening and traumatic, but to her credit, she immediately focused on healing. Four days following emergency surgery she was in Baptist Rehab Institute in Little Rock, Ark. Then came a five-week gap before she continued rehabbing at Atlanta’s Shepherd Center. During that off-time, she returned home to chaos and complications.
“I moved back to live with my parents,” says Goodwin. “I had just bought a new home but couldn’t use it. Ramps didn’t work with my power chair, the bathroom was inaccessible, and once I got dumped out of a Hoyer lift. Luckily I landed in bed. Also, the guy who broke my neck lived across the street.”
She wasted no time qualifying for Shepherd’s rigorous, activity-based Beyond Therapy program, which she attended for an entire year. “I got stronger, learned cooking, bathing, all things in a home setting,” she says. “I was so focused on therapy that I treated it as my job. … e-stim for hands and arms, Lokomat, crawling, e-stim with walkers. I got to the point where I could walk up and back on a basketball court, but it took one hour. I would work out until I passed out.”
When Goodwin came home from Shepherd, she knew that if more than a year’s worth of all-out therapy couldn’t get her walking in a practical way, it wasn’t going to happen. Change focus: “It released me mentally. I had been totally determined and committed, but walking was never functional, so I had to move on. I was now ready to learn to live in the chair.”
Her parents had an extra garage, so together they designed and built Goodwin’s accessible home by adding on to the garage. “We did tons of research,” she says. She bought a Honda Element and adapted it. It took about a year to get comfortable in her new home with her new life, living alone with no attendant. Her parents were always there for her when needed, “but it was hard doing everything on my own. It would take three hours just getting ready in the morning.”
Once settled, Goodwin set her sights on becoming a lawyer, tested high and landed a scholarship. “I decided that lawyers and preachers and salesmen were all pretty much the same, selling something, so since I had been in pharmaceutical sales and loved it, I decided to be a lawyer. There was an attorney in town I wanted to beat,” she says. It’s clear she thrives on challenges and competition. And her long term disability insurance from her pharmaceuticals job has helped greatly. “It’s probably more than what most make coming out of college.”
Goodwin naturally gives off vibes of happiness and credits her Christian faith and the joy that comes from it. “My church family has been hugely supportive every step of the way,” she says. But as happy as she was with her plan to go into law, another plan seemed more urgent. “I always wanted to be a mom, it was always a priority — I was going to have my four babies and become a doctor. My mom’s an OB nurse, I would hear tons of baby stories, and at 32, I was getting nervous about time running out.”
Everything fell into place. Her longtime gynecologist supported her desire to have a baby and care for it on her own. “I had planned to adopt, but I was ineligible for adopting from China,” she says. Instead she purchased sperm from an anonymous donor through the Fairfax Cryogenics Bank in Virginia and got pregnant on her second try. “Everything went perfect. No autonomic dysreflexia. Somehow, the way circumstances worked out, they put me back with Dr. Pinter, my longtime friend and OB gyn,” she says. In her second year of law school — June of this year — she brought Beckham Goodwin into her world six weeks early. After a week in neonatal ICU, Beckham came home and has been healthy and happy from the start. Her plans are to return to law school in January 2016.
As a new mom, you would expect her to be cooped up inside her house, but that is not her style. “We go out a lot,” she says. “My parents are next door and they help more now than even before. I have tons of family and friends’ support. Several friends have newborns, so I plan lunch out at least two days a week. Beck and I go out, driving, just the two of us, in my Honda Element.”
What is most important to her happiness? Without hesitation, she says, “Family and friends’ support. And meeting other people with SCI along the way was helpful.” She ponders briefly. “Also, an inner drive — knowing that things are still possible.”
The Most Important Things
If I have learned anything over the past 70 years, 50 of them as a wheelchair user, it is that what brings happiness changes with the seasons of your life.
At first, as a young man, it was all about the chase — the emotional rollercoaster of pursuing and being pursued by girls. That was the name of the game, and happiness rose and fell daily with the tide. Later, still young but nearing middle age, the lure of good times won me over. Smiling faces, thumping music, food and drink, drugs — if something felt good, it was instant proof that you were happy, at least until you woke up the next morning.
At some point I began to feel the need to leave a mark, to know that my life counted for something. Working and succeeding, doing something worthwhile was the path to happiness and fulfillment. Funny, how I look back now and think that all of it, no matter how memorable and valuable it may have been, is fading fast.
Change rules our lives, and time pushes us onward on our journey. What is really important? What is lasting? What do we leave behind?
For me the answer is right before my eyes. Those who are closest to me: Family and friends. People. Relationships. Memories. Love. Now I know, as time becomes more precious with each passing day, what really makes me happy.
My wife, Sam, and I met in 1973. From the beginning we loved taking drives together. Driving and talking is so liberating. We shared our life stories driving from Southern California to Oregon and sleeping in the back of her van for two weeks, waking in the woods, swimming in lakes, watching sunsets. And we still do it. We search for country roads that we have never driven before. Around each corner is a sight worth remembering, a beautiful mountain, a majestic tree, an animal in the wild.
When our daughter Lindsey came into our lives, we gained a willing passenger. One day, driving to the coast on a weekend, I suddenly slammed on the brakes, screeched to a halt at the side of the highway and screamed, “Fox!” I backed up quickly along the highway shoulder as Sam and Lindsey searched for what I had seen. I stopped, and we all stared in disbelief at a wooden fox stuck in the ground with a stake — a farmer’s wily version of a scarecrow.
Lindsey grew up too fast but always remembered my faux fox sighting. She never lets me forget it. Now when we go on drives, her children, Cooper, 6, and Peighton, almost 3, are often with us. On Sundays we drive to a promontory that overlooks Portland and drink our lattes and eat scones and doughnuts. We point out the landmarks. On clear days we can see Mount St. Helens. And we tell stories.
“See that mountain with the flat top?” I say. “It used to be a perfect mountain with a pointy snowcapped peak. Then one day, Sunday, May 18, 1980, kabloowie! It blew its top off and smoke and ash boiled straight up 80,000 feet into the sky. Grandma and I saw it erupting. We drove to the top of Mount Scott and had a good view of it. You could feel the earth rumbling.”
“My life would be complete,” says Cooper the child-man, spouting one of his best-known Cooperisms, “if only someone would explain to me how lava gets into the bottom of a mountain and changes it into a volcano.”
Little Peighton does not talk much yet, but he loves to push me as fast as his little legs will churn, racing over the hardwood floors of our 1912 farmhouse, laughing and screaming with delight. I have to carefully guide the wheels with my handrims, or he will ram me straight into a wall and fall on the floor, laughing hysterically.
Cooper has discovered that he likes spiders. On our organic farm, we teach the boys that insects are a valued part of nature. Each one has a purpose, so if we see them in the house, we rescue them and take them outside to their natural habitat. Everything but flies and mosquitos, which we kill. And black widows, which I’ve never seen in Northwest Oregon. Cooper and I rescue bees, frogs and salamanders from the pool. We know which creatures are good and bad for the farm. Most are good.
Peighton is still learning. The other day, sitting at the breakfast table, Lindsey said he watched a sugar ant crawl across the table top, then picked it up on the tip of his finger and ate it. “Yum,” he said. That was the full extent of his breakfast conversation.
Sometimes we all go to Clackamette Park on Sundays, including Tom, Lindsey’s husband. The park is the confluence between the Clackamas and Willamette Rivers. We live in a land of rivers. A dozen bridges span the Willamette, connecting East Portland to West Portland. At the park Cooper and Peighton throw rocks into the river, we feed pigeons, ducks and geese, and sometimes go on walks. Cooper collects rocks and sticks and dumps them in my lap and litters my van with them. Sometimes we throw bread crumbs on the hood of the van and on the roof while we sit in the car and watch the pigeons go crazy in a feeding frenzy, beating out a staccato rhythm on the rooftop.
On Thanksgiving and Christmas we have friends over, three or four families usually, and I smoke a turkey or a ham outside on the deck that overlooks the creek area. The boys run around in the yard or play in the sand pile while the adults talk inside, where it’s warm. We usually have a wood fire burning. I open a few bottles of wine and we sit down together to eat. I always say a prayer when we sit down to eat together, no matter how few, no matter how many, no matter what day.
Every day is a blessing, an opportunity to express gratefulness, to cherish the gift of life — and happiness.
The Importance of Community
Alice Wong, 41, activist extraordinaire, is a dynamic, caring person with a passion for educating and informing those in power and advocating for the disability community. Born with spinal muscular atrophy, she grew up in Indianapolis, Ind. An interest in disability studies opened the door to her becoming part of the larger movement, and she felt drawn to Berkeley, Calif., and the Bay Area, where it all began. But she was also intimidated by the prospect of moving to a new place and connecting to new services.
“One of my professors gave me the phone number of Paul Longmore, the disability historian who taught at San Francisco State University,” says Wong. She knew he used personal assistance services like she did. “I called him completely out of the blue and told him about myself. He said, ‘Of course you can make it here — you must come to the Bay Area!’ At that time I didn’t know anyone like Paul and am so thankful for his encouragement. It was the one extra push that helped me make my decision and what would ultimately be one of the best decisions of my life.”
Her move was “a deliberate attempt on my part to find community.” She took up graduate studies at the University of California, San Francisco, and for the past 15 years she has been a constant source of information, direction and encouragement for those in our community, especially those whose need for in-home services is so critical. She uses every imaginable communication platform. “The Internet has changed my life profoundly, and also others with disabilities. Together online we can do a lot of amazing things,” she says. “It is different now, what it means to be an activist. It’s not just about chaining yourself to something on a march.”
The real power, she says, lies in information. “Sharing information is a radical act. There are so many avenues to express who we are. It’s all about choices, traditional or new, social media. These choices are more accessible, and the more the better.”
One of the newest choices allowed her to chat with President Obama via a telepresence robot in July. At the time she was serving on the National Council of Disability. The meeting made national newscasts and gave the nation a glimpse of some of what technology makes possible. It also gave Wong’s friends an opportunity to jokingly hang a new moniker on her: Robot Overlord.
What makes her happy is unique to her experience and her disability. “First is stability and security,” she says. “When you need assistance every day just to get out of bed, you must have a safety net. Programs like Medicaid and California’s In Home Support Services are always at risk for budget cuts. Sometimes you really feel a sense of tenuousness. Stuff can happen anytime, and it depends on where you are.”
Wong lives with her parents, who also are her caregivers, along with others. She uses a bi-pap breathing apparatus most of the time. “I can go without it for several hours if needed — when I’m eating or in meetings — but I use it during the day more often now because it saves a lot of energy and makes me feel more comfortable.”
As busy as she is (her résumé is a testimony to both her sheer energy and her effectiveness), she finds time to enjoy life and cultivate happiness. “I love going to my neighborhood cafes, to Golden Gate Park and the Embarcadero for walks. Other things that make me happy are watching cat videos, staying up late at night, live tweeting my favorite television shows like The Walking Dead or Game of Thrones, and having a hot cup of coffee with a doughnut, a cookie or a slice of pie.”
She also gets a lot of satisfaction in advocating for everyone as a community. “It’s not just about me. Privilege plays a role here. I now have an education, a job, a position. I know that this is not the case for others like myself. I appreciate what I have and it motivates me to try to help others.”