In March of 2012 my husband, Bob, had a squamous cell cancerous growth removed from his neck just below his ear. It was a big, aggressive tumor. Though we know that millions of people are living with cancer, it was new to us. We were scared, and the fact that we are not young added to our fears.

After several weeks of recovery, Bob began a 30-day, five-days-a-week course of radiation. (No chemo!)We listened intently when the medical team told us what to expect. As an advocate and caregiver, I wrote everything down in my notebook, as I’d been advised to do.

We were told that the radiation would burn a large portion of the skin on the right side of Bob’s face and neck, it would become raw and some areas would bleed. Sores would probably appear in Bob’s mouth, which would become parched, increasing the possibility of dental problems.  Since his taste buds would be destroyed, most foods would taste like mush with a metallic chaser, taking away any appetite, resulting in a significant weight loss. We were told that Bob would experience fatigue like nothing he’d ever known, and that all of these symptoms would get worse before they got better. It could take weeks and perhaps months after the last radiation treatment before Bob would begin to feel better.

But these words had no meaning because we had no frame of reference for any of this.

A few weeks into the radiation treatments, the predicted symptoms began to appear and zapped Bob’s energy and his spirit. I tried to remain optimistic and struggled to make meals he might like. However, with only one salivary gland—the other had been removed during the surgery—Bob said that everything tasted like dirty socks. He just stopped eating. I finally gave up nagging about the need  for nutrition to keep his strength up and acknowledged that applesauce, oatmeal, soft boiled eggs, ginger ale without the fizz and seltzer water without bubbles would constitute a meal.

The emotional and physical fatigue set in about midway through his treatments. Part of it was due to the fact that every day we had to drive an hour from our home to the Oncology Center, spend 45 minutes getting zapped, meet with the doctors or nurses, and make the hour drive back. As the weeks wore on and the effects of the radiation accumulated, Bob became increasingly tired and uncomfortable, would fall asleep in the car and take a nap as soon as we got home. Some naps lasted two or more hours.

We looked forward to the last day of radiation, expecting to feel almost giddy; no more driving, no more radiation. On that day we thanked everyone and got in our car. All Bob wanted to do was get home and get to bed.

After the first week without the daily routine of going for treatment and seeing medical professionals, it dawned on me that we were on our own.  I became hyper vigilant.  Several times a day I asked Bob if he was feeling okay, checked his skin, applied the prescribed creams, reminded (nagged) him to drink water and eat something–anything, and made sure there was a blanket near his napping chair.

The radiation treatments had stopped, but the accumulated affects were still ravaging his body.  Bob seemed to get sicker and he was losing a lot of weight, just as the doctors had said.

We retreated inside our home and inside ourselves; we kept our families and a few friends up to date, otherwise we kept to ourselves. I worried and fretted and did little else. I went out for a few groceries a couple of times a week and, twice a day walked our dog, Parker, who continues to keep a vigil next to  Bob. Otherwise I stayed home.

During April and May we lived in a kind of gray haze, not knowing when, or if, we’d ever see some improvement in Bob’s condition. These were the days and nights when we each worried silently that all of this might be for naught.

By the middle of June, Bob began to look better, his skin was healing and he was sleeping less.  We went to a concert; it was the first time we’d been out since early March. Bob started to expand his menu to include sauteed eggplant, some fish and a few soups.  Just recently, Bob discovered that cold shrimp with mango chutney tastes pretty good.

Then late one morning Bob announced that he was going to Home Depot to get some parts to fix an air conditioner. What a surprise, I thought, but decided not to make a big deal out of his plans. About an hour laterhe returned with his repair supplies, the mail, and something very special for me– a lobster roll.  He knew I was missing them, but was willing to wait until we could enjoy lobster rolls together.  It was a beautiful way for Bob to tell me how much he cares and that he knows that this is a difficult time for me too.

Then he expressed some  real optimism when he said:  “I haven’t turned the corner yet, but I can see it.”

We’d been so much in our own personal darkness that we hadn’t noticed that the bulbs in two of the ceiling lights that hang over our kitchen island had gone out. One night after supper that consisted of a small serving of Chinese (carryout) shrimp and snow peas, Bob suggested that we might be able to see better if we replaced the bulbs.

He got out the step ladder and a package of new bulbs from our laundry room and set it on the island. Bob turned off the circuit. I climbed up three steps and unscrewed the old bulb, gave it  to Bob.  He set it on the island, opened the package, took out the new bulb and set it next to the old one. Bob got me a cloth so that I could wipe the dust from the fixture. When I finished, I gave him the cloth and asked for the new bulb. He handed me a bulb, I screwed it in. Bob turned on the circuit.

Nothing. The bulb was dark; probably a bad bulb, we thought.

Or, is it possible we got the bulbs mixed up?

Bob handed me the other bulb, I screwed it in. When he turned the circuit on the bulb lit up.

I giggled, Bob grinned, we laughed at our silliness and tossed the bad bulb in the trash.

He helped me down the ladder, we moved it so that I could replace the other bulb. It worked as soon as Bob turned on the circuit.
Our kitchen was flooded in light and so were we.

We continued to chuckle as I got down off the ladder, then we started to  laugh so hard we couldn’t stop. It felt great to laugh at something, even if it was ourselves.

Maybe, just maybe, we’re starting to see our way out of this darkness.

My husband had just been discharged from the hospital and I was terrified.

I would be responsible for helping him recover from surgery that had removed an orange-sized malignant tumor from the area around his ear and neck. The 24/7 envelope of comfort and medical care we’d received in the hospital was no longer. We were on our own. I was the care giver, the one who’d better know what needed to be done and what problems to watch for. As we started down the highway to our home, two hours away from this hospital, I looked at Bob. One side of his face was covered in a large bandage, he was leaning toward me on the other side of his face. He was partially asleep, woozy from pain medications. For several weeks preceding the operation we’d met with surgeons, oncologists, dentists, read everything we could find on squamous cell carcinoma. We talked honestly to each other about cancer, laughed and cried together. We’d done all of our homework. Well, almost all of it.

I’d forgotten to prepare for the moment when we’d drive away from the hospital, letting the life-line slip away. The fact that there are fine doctors and a good hospital in our town didn’t diminish my anxiety. I had to be responsible, but felt vulnerable. The muscles in my lower leg twitched, my eyes darted back and forth between watching the traffic and looking at Bob. Is he breathing okay? What if I hit a pothole and his head bounces against the window on the side where the bandages are? I know he trusts me to drive safely, but I had to be super vigilant. We made it home safely and familiar surroundings eased my concerns.

For the next few days Bob rested and took his meds. I hovered, nervously trying to anticipate his needs. There must be something I should be doing. Without taking away his pride and dignity, I kept track of the details, the schedule of meds and followup appointments. I watched him closely for signs of problems, though I wasn’t sure what I was looking for. Bob slept in his recliner so he could keep his head elevated. A soft pillow protected the bandaged area. We’d found the right foods that were easy for him to chew.  He was getting better, but still hadn’t been allowed to shower or wash his hair. I knew it was driving him crazy. So I asked Bob if he wanted a shampoo. (This is a man who goes to a barber, not a salon.) To my surprise he said yes. Then I worried about getting water on the bandages or that the surgical site might open and start bleeding.

Bob sat on a tall stool in our kitchen, his back against the sink, with a towel draped around him and another towel over the bandages. I filled a small tub with warm water, soaked a wash cloth with the water, brought it to his head and gently wet his hair. I put a few drops of shampoo in my hand and spread it on his hair. My fingers massaged Bob’s scalp, the back of his neck, taking care to avoid the area around his right ear.  He smiled and relaxed and laughed, finding himself in this situation. I rinsed and applied more shampoo, which wasn’t necessary, but it gave me the chance to do more massaging. It was for my benefit this time. I worked up a good lather. The touching and massaging brought us close and our laughter helped reduce my worries. It was good to discover that there was actually something  I could do that would make Bob feel much better.

This shampoo turned out to be good medicine for both of us.

Camden Hills Realty   “the place just right.”
‘Tis the gift to be simple, ‘tis the gift to be free,’ tis the gift to come down where we ought to be; And when we find ourselves in the place just right, ‘twill be in the valley of love and delight.”
from the Shaker hymn, Simple Gifts, by Elder Joseph Bracket,1848

It started like this…
One summer, my husband, Bob, and I packed our car and departed Columbia, Maryland for Maine to continue our search for a summer home. We’d already explored the Eastern Shore of Maryland and Cape Cod, but found them either too hot or too crowded. We also visited the Adirondacks. Beautiful, but too remote for us. We’d even spent a few days in Portsmouth, NH but we couldn’t see ourselves living there. Maine was next on our list.
We crossed the border into Maine and spotted a large billboard—Maine, the Way Life Should Be. A rather bold claim…it would take us a few years to figure it out, but we did with the help of our soon-to-be new friends.
Bob and I drove through Camden, a town we’d seen on an earlier trip, and remembered its beauty and bustle. We found accommodations north of town where we were welcomed by then innkeepers, John and Linda Burgess.
We told them we were researching areas where we might buy a vacation home. John suggested we drive to Camden Hills State Park and the summit of Mt. Battie. It’s the best view on the coast and puts the whole coastal area into perspective. The Burgesses are personable, hospitable, funny and, as it turned out, John is a Realtor.
We wandered around Rockport and Camden—
a picture postcard come alive. Churches, parks, shopping, restaurants, sparkling harbor, mountains, lakes, ponds, people strolling about and pet friendly. We had our pre-dawn coffee on a bench in front of the library facing Camden Harbor. Loons, sea birds and the low drone of lobster boats leaving the harbor were the only sounds.
The next summer when we returned to Maine, we stopped to see the Burgesses at Camden Hills Realty and rented one of their cottage/vacation homes. It was cozy, well appointed, convenient, perfect.
Maine was now becoming a part of our lives.
We found ourselves looking at property. John and Linda helped us through the process by asking questions, most of which we couldn’t answer at that point. Our homework that winter back in Maryland was to determine if we were really serious, and, if we were, what kind of property we wanted.
By summer, we were more than eager to return to Maine. We were certain about our desire to relocate and live here year-round!
We also had our criteria: to be able to walk to town, be near the ocean, close to mountains, lakes and ponds. A neighborhood with people of all ages and backgrounds. And it had to be a smaller home since we were downsizing. John managed the pace of looking at listings and insisted we take time to play tourist. We rode the ferry to Islesboro, visited Owls Head Light, Marshall Point Light, Tenants Harbor, Thomaston and Rockland.
In the evenings we retreated to our Camden Hills cottage with wood-burning fireplace and all the comforts of home. Over dinner with John and Linda we shared our concerns about leaving family and everything familiar. They listened as the friends they had become. Asked questions but did not offer opinions. They were patient and respectful. Everyone wanted the decision to be the right one.
The next summer we looked at many homes but none fit. John suggested that we consider a few more properties in Camden. He gave us a number of listings and sent us on our own to browse. Little did we know John had one home he thought was special.
We turned off a paved road on to a long gravel driveway lined with trees and drove up to a little one-level house in a clearing. Beautiful! The midday sun flooded the front garden. Pines and hardwoods graced the edge of the property. We walked around to the back. Small yard. Simple gardens. A back deck. We had to peer in the windows because we couldn’t get in without our Realtor. The next day John made an appointment for us to see the home. It fit our needs perfectly!
The Maryland house sold quickly. Our offer on the Maine house was accepted. We packed our car… no maps. We knew exactly where we were headed.
We arrived in Maine and once again stayed in our Camden Hills cottage. The closing on our new home was scheduled for morning. Our
new life had begun!
Six years later…we now call Maine “home.”
There’s no doubt we made the right decision to relocate to Maine and settle in Camden. We’ve never looked back because we found “the place just right.”
John and Linda are masters at matching people to homes and lifestyles. Experience has taught them that “Maine—The Way Life Should Be” means different things to different people, and we all have to figure it out for ourselves.
- by Cathy Lickteig Makofski

For more information about Vacation Homes and Real Estate in Midcoast Maine, contact John and Linda Burgess at Camden Hills
Realty at 207-338-0009, or go to our website at www.camdenhillsrealty.com.
Better yet, come visit us at 1315 Atlantic
Highway, Northport.
One of the Camden Hills Realty vacation rental homes.

As part of the research for my book, Trying to Live a Normal Life–The Biography of a Parkinson’s Disease Support Group, I spent the last six years  with 35 men and women– those with Parkinson’s and their caregivers.  I’ve been at almost every monthly support group meeting,  informal gatherings, and interviewed many of the members. They’ve come to trust me and have permitted me to write about their lives and their determination to lead as normal a life as possible regardless of the fact the Parkinson’s is stealing their independence. I set out to write this book to understand how they do it and what role their support group plays in helping them live with purpose and joy.

The short answer is that it’s all about mutual trust. (The long answer will be in the book.) Trust that people who participate in this group can talk about anything and others will understand; trust that no one will judge; trust that there’s always someone to listen even if there are no answers.

I completed the manuscript a few weeks ago.

At almost the same time, my husband and I learned that he has a malignant tumor  in his neck which will be removed soon. We’ve been blessed with good health for years and years. Now we’ve joined the millions of others who live with cancer or other chronic diseases–like Parkinson’s.

Since our Parkinson’s friends learned of Bob’s cancer, they’ve gathered around us emotionally and physically with attention, love, support and encouragement.  Because they know how to listen, my husband and I have become more comfortable talking about fears and what ifs. Our  Parkinson’s friends know how to take life as it comes and still laugh and remain fully engaged each day.  We have much to learn from them.

The last thing I expected when I met this group for the first time in 2006 is that these incredible, resilient men and women would one day become our very own support group.

Sometimes in life we find ourselves exactly where we need to be.

It’s Parkinson’s disease, says your doctor. You choke on disbelief and fear. You’re 50, maybe 65. There are no blood tests, no tissue samples to verify this news. Diagnosis is based on similar symptoms in hundreds of thousands of cases.

At home, you sit down at your computer and type P-A-R-K-I-N, then stop. You feel cold, hot, shaky. You decide not read about this progressive neurological disease that produces tremors, falls, stiff limbs and steals mobility and independence. Months, maybe a few years pass. You’ve been keeping your doctor’s appointments, done a little research. Still, you’re irritable, depressed, no longer able to hide some of your symptoms. The isolation you feel is like a silent scream. It’s time to do something. Maybe a support group would help.

With 60,000 new cases of Parkinson’s diagnosed every year, this scene is played out time and time again. Today it is easy to find good information and caring people to help you mange the initial shock as well as the disease. It hasn’t always been this way.

In the mid- 1990’s, a couple from Rockport, Maine, were overwhelmed by their diagnosis and distressed that they couldn’t find help in their area. They had no choice but to start their own support group because no one was going to do it for them.

It all started with some chairs.

Jim Brown is a furniture designer and the owner of Windsor Chairmakers in Lincolnville, Maine. Ten minutes before 5 on a Saturday afternoon in 1995, a prospective customer from Atlanta, Georgia walked in. Nance was a pediatric critical care nurse who had driven up from a meeting in Boston. She wanted to buy some heirloom custom chairs. Jim, who cocks his head to one side while looking directly at you, was on his way out of the shop to make a delivery.

It was instant mutual attraction.

Within six months Nance had retired from nursing and moved to Maine to help Jim manage the business. They bought a home in Rockport and were married in the fall of 1996, the same year Jim was diagnosed.

“Parkinson’s was with us when we married. I never once considered it a reason not to get married,” said Nance.

For the next few years, Jim and Nance, who were both 52 at the time, tried, without much success, to find information that would explain what they might expect as they tried to manage their day-to-day medical, physical and emotional symptoms. When Nance was caring for desperately sick children, she had often suggested that parents consider a support group so they wouldn’t feel alone and frightened. Now she and Jim needed support.

“There were no resources, not even a support group in this community to help people like us,” said Nance.

Eventually they started their own, one that would include caregivers. Jim was the facilitator for those with Parkinson’s and Nance for the caregivers. News of the group’s existence spread; people called day and night, terrified of their diagnosis and desperate for information.

The Browns and others struggling with Parkinson’s took turns organizing meetings for almost a year. They met in various locations in the Camden area, and with an ever-increasing number of attendees. When it became clear that they needed a permanent meeting space, Jim contacted Suzanne Miller, health services coordinator at the Quarry Hill Retirement Community.

“Jim was very convincing, and he was right,” said Suzanne.

The group’s request for space for a monthly meeting fit perfectly into Quarry Hill’s mission to serve its residents and the broader community. Most of the members of the support group come from Mid-coast Maine communities. Suzanne also offered to help with administrative needs and to become one of its facilitators.

“Our group owes our very existence to Suzanne, who understood our needs from the moment Jim first met her. She continues to nurture our efforts to help each person,” said Nance.

Two other couples, Robin and Gordie Guist and Don and Ann Cole became very active in the group. The fact that Jim, Don and Gordie developed Parkinson’s in their late 40’s—called early onset—explains why these three couples had the energy and the motivation to help launch this group. They expect to be living with Parkinson’s for a long time and wanted their group to sustain them during their entire life. Whether people are diagnosed early or in their 60’s, Parkinson’s may be part of their lives for 10, 20 or 30 years. People want a support group that will meet their needs as they age and as their symptoms progress.

The first meeting was in September 2004.

In the beginning, the meetings and discussions focused on helping each other reduce the fear and panic brought on by their diagnosis. Some found it very difficult to accept that they had Parkinson’s and some spouses worried that they wouldn’t be able to handle the caregiving that would likely be required as the disease progressed.

“It took some time for the group dynamic to emerge and for the participants to develop enough self confidence and trust to open up,” said Suzanne. “As soon as people realized they weren’t alone in dealing with Parkinson’s they began to feel better and more in control.”

Now, most of those who have been in the group since the beginning are more confident of their ability to handle the uncertainties of their disease as it progresses.

From time to time during the early years of this group’s existence, the members would step back and ask themselves: “What do we want from our support group?” Their answers would become the group’s mission: To be a sanctuary of support and a source of information for those with Parkinson’s, their families, friends and caregivers.

Today their meetings are all about building personal resilience.

The group meets at noon on the first Tuesday of every month in the Media Room at the Anderson Inn at Quarry Hill for about two hours. Long enough to be substantive but not so long that people lose interest, or that their medications wear off. Their meeting room, with its comfortable, padded chairs, carpet and soft lights, encourages conversation and relaxation. It’s also set up for audio visual presentations. Some people bring lunch, coffee, water and desserts are provided. Meetings are informal, there are no officers.

“We are all equal in our desire to find ways to live with Parkinson’s” said Gordie. Guest speakers, discussions and support sessions are the tools they use to become more resilient — better able to bounce back from the setbacks and adversity likely to come their way over the long haul.

The first half of each meeting includes a speaker on a subject related to Parkinson’s, followed by a question and answer period. Members of the group offer suggestions for topics and speakers and Suzanne extends the invitation and handles the administrative duties. Experts have talked about Parkinson’s medications, nutrition, depression, and voice and speech issues that are common with this disease.

Other speakers have suggested that art, poetry and spirituality might be helpful in easing the burden of Parkinson’s. There have been demonstrations of yoga, dance, Tai Chi and other exercises that can help increase the flexibility that Parkinson’s takes away. Programs and activities like these help reduce stress, boost the immune system, and contribute to a sense of peace and wellbeing.

The second part of each meeting is dedicated to separate and concurrent support sessions, one for those with Parkinson’s and one for caregivers. This is the time for sharing experiences, learning from and helping each other. People listen with a knowing ear when someone vents or describes emotional pain, or thinks out loud giving voice to whatever is on his or her mind.

“These are safe places where we can talk with those in our similar situation,” said Don Cole. Another said, “It’s where we can express how we feel — frightened, sad, angry, uncertain — and know that others will understand.”

“Support sessions are vital to building individual and family resilience,” said David Rintell, Ed.D, psychologist at Brigham and Women’s Hospital and Massachusetts General Hospital, in a recent email. Rintell was the keynote speaker at the Maine Parkinson’s Society meeting in 2009.

“Resilience was once considered something we were born with, but research has shown that it is learned and developed through practice. Managing difficulties successfully provides the emotional confidence to withstand future setbacks,” said Rintell.

The facilitator guides the support session with a delicate touch.

Sometimes those with Parkinson’s, most of whom are men in the group and the general population, need a little encouragement.

“It’s not always easy for men to open up,” said Carol Witham, a facilitator and a certified advanced health and fitness specialist. “Sometimes there are periods of silence between comments because it takes time to process information and to formulate a response. For some, it’s difficult to shift quickly from one topic to another.”

During this time folks talk about their difficulties walking, swallowing, and speaking due to the loss of voice muscles. One person talked about his feelings of inadequacy when he had to relinquish the management of the family’s finances. Depression is a frequent topic—it affects more than 30% of those with Parkinson’s. Gordie went into a deep depression right after his diagnosis and resisted help for months.

When one man said he felt awful asking for so much help— to get out of bed, dress, cut up his food—everyone nodded in agreement. One man shared his pain giving up driving, others talk about sleeping issues. They exchange information about their successes and failures with various medications.

Sometimes someone offers an idea or suggestion, but mostly people listen because they all know that verbalizing a fear or concern is the first step in managing it.

Caregivers usually want to talk about the person they care for.

Suzanne, their facilitator, starts this support session by asking the caregivers, most of whom are women, “How are YOU doing?” But everyone automatically talks about problems their spouse is having. Suzanne lets this go on for a few minutes then reminds the caregivers that this time is for them. Then people begin to open up and talk about their loneliness, stress, the 24/7 demands of being the one responsible for someone with Parkinson’s.

Nance said, “These meetings allow me to release some steam. If something’s a big problem for me, it is usually something we’re all dealing with.”

They share their worries that their spouses might fall, forget to take their medications, and the depression. They share tips for organizing the piles of information related to medications, doses and side effects Caregivers urge each other to become advocates for their spouses, attend doctors’ appointments, ask questions and keep notes. They exchange recipes for foods that are easy to prepare and to eat because there’s always the fear of choking.

“There’s no relief when you’re the caregiver,” said Robin. “When Gordie’s medications kick in, he gets a break and he seems almost normal. There is no break for me,” she said without self -pity or resentment.

The facilitator reminds caregivers to acknowledge their own needs — a haircut, a trip to the library, a massage — and urges everyone to get someone to help so that they can get out for a few hours. Without a break, their reservoir of patience and love will run dry, leading to depression.

Caregivers are honored in a special way

Those with Parkinson’s are painfully aware of the strain it puts on the people who care for them. So every year the February meeting is a celebration, a Valentine’s Day tribute to caregivers. This event was Gordie’s idea and he loves being master of ceremonies. As he makes his way to the front of the room you notice that his trim body appears a bit stiff, his walk is uneven, his left arm shakes. Gordie isn’t thinking about Parkinson’s; he’s eager to speak.

“It’s difficult enough to live with Parkinson’s when you’re the one with the disease,” said Gordie. “ Our spouses, children and friends—those who make sure we take our meds, get exercise, prepare meals, help us in and out of bed, and worry about our well-being—carry a heavy burden, too. Thank you caregivers, this day is for you.”

Each caregiver is presented with a long-stemmed red rose and escorted to another room where Zen music, the relaxing scent of lavender and therapists wait to give neck, back and foot massages. Despite being consumed with their Parkinson’s, these folks haven’t forgotten their caregivers.

Hope thrives in this community.

Everything this group does—the speakers, discussions, exercise classes, dance, yoga, the art, poetry, the celebrations and the support sessions—is designed to help people become stronger, more resourceful and better able to withstand the vicissitudes of living with Parkinson’s.

It is on this foundation that resilience can take hold and grow. The moment when resilience emerges as hope is a little like the moment of sunrise; you don’t know exactly when it happens, but slowly you realize it’s a new day.

The men and women in this support group are a testament to the fact that the best antidote to Parkinson’s is peer support. They are a curious blend of ages — 45 to 80 —and backgrounds, people who under different circumstances might never have known each other. Though they are burdened with symptoms, they are not defined by them. It doesn’t matter that some can’t stand up straight, stand still, or speak loudly. Some can’t smile because their facial muscles are locked, but they share their warmth though their eyes and they know how to laugh.

At one meeting, Jim Brown explained his tardiness.

“The police called to tell me that my heifers were walking along Route 1 near my shop in Lincolnville, and I had to get them out of the road.” Jim, who is very slender and whose Parkinson’s forces him to list to one side when he walks, explained how he did it. “I put a rope on each heifer, put one on each side of me, and walked them home. I also scolded them for busting out of their pen again and for being such bad girls.”

I asked Jim if anyone stopped to help him. “Would you?” he asked. “They weigh 1500 pound each.”

Now they reach out to others.

The Quarry Hill Support group, which started as a gathering of people who were trying to find ways to manage their fears and uncertainties, now has an ongoing commitment to helping others. They’ve created their own newsletter, developed a mobile lending library of information and established the annual Camden, Maine, Parkinson’s Resource and Information Forum held in April, National Parkinson’s Awareness Month. It’s an afternoon event for those in the community who are newly diagnosed and others who want to know more about the disease and local services. Speakers usually include a neurologist, the facilitators and some of the members of the support group.

Others are getting involved on a national level. Gordie is one of 100 people — and the only one in Maine — who has been designated an Advocate for Parkinson’s Research by the Parkinson’s Disease Foundation’s Clinical Research Learning Institute. His role is to help find volunteers to participate in studies being conducted by all researchers and all drug manufacturers who are trying to find better treatments for Parkinson’s.

Because of the richness of the monthly programs, membership has grown steadily. Today as many as 30-45 people attend each meeting, with new people joining every few months. Some are understandably hesitant. Not everyone is comfortable being part of a support group, especially those who diagnosis is recent, who may have only a few visible symptoms, or who are struggling with denial.

“It’s extremely difficult for some to sit in a group with others whose symptoms are more advanced and to think that you might look or act like they do in 10 or fifteen years,” said Suzanne.

When new people — those with Parkinson’s or caregivers — come to a meeting they’re welcomed and introduced, only if they wish to be.

“We’ve been there,” said Jim Brown. “We give each person as much space as they need. We want them to feel comfortable, we answer the questions we’re asked, and we don’t push anything.”

Until there’s a cure, this group will continue to be a touchstone.

Those with Parkinson’s and their caregivers come to each meeting with a few seeds of hope for making their lives a little easier. These seeds are planted and nourished by sharing experiences and learning new ways to cope. At the end of each meeting, people leave feeling better and more hopeful. Hope gives everyone the feeling they have some control over their lives, and makes them more resilient. Hope is what everyone takes home, and hope is what draws them back together month after month.

“We are individuals who share a common bond,” said one member.

“We share everything without fear of being judged. Over the years we’ve seen people get though the rough times that Parkinson’s throws at us. We’ve seen a change in people’s attitudes from fighting the disease to accepting it and getting on with life,” said another.

“When you go to the doctor you don’t get cookies and desserts,” said Gordie. “When you come to our meeting you are treated to desserts and cared for by friends. These are the most generous people I’ve ever met.”

Today there are approximately 15 communities of hope in Maine where those newly diagnosed and/ or ready for a group will find a support network of caring and resourceful people and a wide variety of activities that can make it much easier to live with Parkinson’s. For information about support groups in your area, call Lillian Sienna at 207-781-1735 or 866-609-5183 or check the American Parkinson’s Disease Association Information and Referral Center website: www.mainehealth.org/parkinsonsmaine.

ABOUT PARKINSON’S DISEASE

Parkinson’s is the result of the loss of nerve cells in the substantia nigra of the brain, the area that produces dopamine. Dopamine transmits messages from nerve to nerve to coordinate the body’s movements. Without enough dopamine, the cells fire randomly, usually producing tremors, uncontrollable shaking, sluggish movements and rigid muscles. These symptoms may make it appear that the person may be mentally challenged or impaired by drugs. When the facial muscles are affected it’s difficult to smile, laugh, wink or cry. The face may appear expressionless, like a mask. Family and friends must learn to “read” the eyes to discern emotions and feelings.

There’s no known cause in most cases, but in some it is genetic

Every case is different. Some people have a variety of symptoms, others only a few. Several different kinds of medications are available, but one that works for one person might be useless for another. And many produce intolerable side effects. The disease progresses rapidly for some and not for others. But it always progresses. There’s no such thing as a remission. Parkinson’s can, over time, affect a person’s ability to move, speak, swallow, breathe deeply, smell, and can cause depression. People don’t die of Parkinson’s but they can die from complications, such as pneumonia, that can develop due to reduced ability to swallow. Healthcare professionals and those with the disease agree that peer support can be an effective, ongoing antidote to this grimness.  End

By CATHY LICKTEIG For The Tribune BismarckTribune.com | Posted: Sunday, April 17, 2011

Some people see normalcy, the routine everyday way of life, in a negative hue. For better or worse, the workaday life is portrayed as boring. Not so for 53-year-old Bismarcker Tim Lickteig, who will run in today’s Boston Marathon.

After undergoing two agonizing treatment regimens to overcome hepatitis C, Tim was happy to return to the routine early last year.

“It’s remarkable how quickly I began to feel better once I was able to stop filling my body with the (treatment) toxins,” Tim said.

Tim returned to the gym to build his stamina. As he got stronger, he increased his work load at Eide Ford. Within a couple of months his energy and mental acuity were back.

Tim and his wife, Marcy, put their lives back together, too. Last spring they took a leisurely trip through the Black Hills to Spearfish, S.D. They traveled to Phoenix, Ariz., to visit their son Andy, then 20, who was a student at the Motorcycle Mechanics Institute.

Tim and Marcy also soaked up the Arizona sun and played golf. It had been more than two years since Tim had picked up a club. He felt great.

After returning home, Tim continued his conditioning and training. He’d set a mind-boggling goal: to run the 2010 Bismarck Marathon in September, just seven months after his final injections of powerful medications.

Tim was at the gym at 5 a.m. stretching and doing strength training, he ran outside in good weather and put miles on the treadmill when he had to be inside.

Despite this demanding, 90 minute daily training regimen, Tim couldn’t always block out the nagging fear that maybe the hepatitis C would come back like it did the first time.

He worried that his ruined health and shattered emotions would avail nothing. He feared the pain and expense his family had experienced would be for naught. Would his name be added to the long list of people waiting for a new liver? Would he even live that long? Tim and Marcy turned to others facing similar trials for help.

“The support group was a lifeline,” Tim said. “Marcy and I learned about coping and patience and building resilience. We left each monthly meeting with a little more confidence that we could handle this.”

On August 20, 2010 – six months to the day after his final injection – Tim got the news. Blood tests indicated that there were no signs of the hepatitis C virus. None.

Tim was jubilant, relieved that this horrible treatment, which twice came close to destroying his life, had saved it.

“I was overcome with gratitude and relief,” he said.

Tim didn’t celebrate for long. Free of that burden, Tim redoubled his preparation for the Bismarck Marathon, which loomed just a month away.

The night before the race it snowed. At race time on Sept. 18, the temperature was a chilly 35 degrees.

The start was brutal for Tim, but as the temperatures improved, so his performance. A little over five hours later, completely drained and nursing a muscle spasm in his thigh, Tim finished.

“It took a few minutes to realize that I’d made it all the way to the end. It was the same feeling I had when I was skydiving – floating in an out-of-body experience,” Tim recalled.

A few months after the Bismarck Marathon, there was more to celebrate. Tim’s long-held dream of running the Boston Marathon came true. He was selected to run at Boston as a member of the American Liver Foundation’s Run for Research Team.

Tim will be one of 200 ALF runners from across the United States at the starting line for the 115th Boston Marathon. All 200 have stared down hepatitis and other diseases of the liver. Their goal is to call attention to the work of the Liver Foundation and to raise funds for research.

Upon learning of his invitation to Boston, Tim quickly got to work. He met with a trainer who helped him map out a six-month plan to prepare for the 26.2-mile race.

“I want to do well, try to finish in four hours. I don’t want to let down my family, friends and the Liver Foundation,” Tim said.

Yet, in the midst of the celebrations and excitement, Tim was still not sure of his recovery.

Back in February of 2010, when Dr. Kent Martin reported that there were no more hepatitis C cells, he told Tim to return in a year for another blood test.

“If there are no cells, then we can be all but certain that you beat this disease,” Martin said.

Two months ago the results came back from two independent laboratories: No trace of the hepatitis C cells.

“There’s a 99 percent chance that this disease will not return,” Martin said. “Even though Tim’s liver is permanently damaged from the hepatitis, it won’t get any worse. And he will be able to live a full life, and run more marathons.”

When Tim steps across the starting line in the Boston Marathon today, he will have already won. The finish line will be the beginning of Tim’s new life.

Editor’s note: Tim Lickteig of Bismarck will be among those at the starting line for today’s Boston Marathon. Cathy Lickteig, who offers an inside view of Tim’s agonizing fight against hepatitis C, is his older sister. She resides in Camden, Maine and plans to meet meet her brother at the finish line today. This story concludes a three-part series.

By CATHY LICKTEIG For The Tribune Bismarck Tribune  Saturday, April 16,2011

Tim Lickteig leaped into 20009 determined to not merely exist, but to live his life with gusto.

The Bismarck man’s exhilaration had nothing to do with a New Year’s resolution. He had just completed an arduous 48-week treatment plan to overcome hepatitis C.

At 51 he saw life in a new light. Tim joined a gym and began working with a personal trainer, determined to restore a semblance of physical well-being.

It took a few weeks for his appetite to come back. Patiently he rebuilt the strength that had been lacking for a year.

At first he was exhausted, but slowly found that he could spend more time on the treadmill, the elliptical machine and lifting weights.

Three months into his exercise program, the endorphins, those happy hormones that Tim remembered from running marathons in the 1990s, returned, making him almost giddy.

He talked with his trainer about the possibility of running the 2009 Bismarck Marathon in the fall. The trainer said she’d help him prepare for it, but first he had to be cleared by his doctor.

Tim went to see Dr. Kent Martin, who had guided him through his ordeal with hepatitis C. More blood work was ordered. A few days later, Tim was called to the doctor’s office for some grim news.

The hepatitis C was back, the viral load was as high as it was midway through the previous year’s treatment. This reversal had occurred in just four months.

Martin told Tim that he had two choices, both undesirable. He could do nothing and let the hepatitis destroy his liver to the point that he would need a transplant. However, there aren’t enough livers for all the people who require them, and sometimes transplants don’t work.

Martin presented another course of action – a

second 48-week course of treatment, so debilitating that it’s rarely prescribed. It consists of daily, not weekly, injections of Infergen, a synthetic version of interferon that is many times stronger. Neupogen and ribavirin would again be used.

Infergen, an experimental drug at that time, has since been approved by the Food and Drug Administration.

“Tim’s case was extremely serious and I knew we had to be very aggressive in treating it,” Martin recalled.

“It will be very hard on Tim physically and emotionally, and on your family,” the doctor cautioned Tim and his wife, Marcy.

Marcy and the couple’s sons, Ben and Andy, wanted Tim to have every chance for a long and healthy life. They encouraged him to take the second year of treatment.

“Even though the doctor said there was only a 20 to 30 percent chance that this would work, I was not willing to give up. Our life together was worth fighting for,” Marcy said.

Tim found the idea of a return to treatment daunting. “That’s easy for all of you to say,” he said. “You don’t have to stick needles full of killer chemicals in your body every single day that make you sicker than you can possibly imagine.”

Tim’s voice was heavy with sadness as we discussed the possibility of his return to the torturous treatment regimen and its impact on his family.

I told Tim I’d be on the other end of the phone any time, day or night. I hoped that by providing an opportunity for him to vent, we’d be helping Marcy. Maybe she and Tim could have time together when they didn’t have to talk about Tim’s illness.

Their relationship is a true love story. Marcy’s patience, courage and optimism set the tone. We followed her lead.

“The boys and I were scared about what a second year of these awful drugs would do to Tim and whether they would kill the hepatitis C cells once and for all,” Marcy said. “But if we didn’t have faith in a good outcome, then how could we expect Tim to?”

Tim wanted his life back for himself and his family. He knew that Martin was right. This would be his only chance, so he agreed to 48 weeks of daily injections.

The second round of treatment began in February of 2009.

There were no good days, only bad days; the constant nausea, muscle aches, infections and depression were even more crushing than before.

At the end of the first six weeks, blood was drawn to see if any hepatitis C cells were still alive. If any living virus cells remained, treatment would be stopped because it wasn’t working. Nothing more could be done. Tim would have to live with a failing liver and hope for a transplant.

The tests showed his viral load was zero – no hepatitis C cells. That was the good news. The bad news: Tim would have to endure 42 more weeks of treatment to make sure the cells were permanently killed.

It was back to being sick every day. Soon it became too much for Tim to work a regular schedule. He’d been able to keep up with his job as the sales manager at Eide Ford in Bismarck during the first round of treatment.

This time, Tim was too sick most days to handle the physical demands of walking around a huge car lot. He also found it difficult to remain mentally alert. He said he knew it was hard for his fellow workers to be around him as his condition deteriorated.

“These drugs wreak havoc on your mind,” Tim said. “I lost the ability to think clearly. I was constantly fighting depression and often thought about quitting and just giving up.”

But Tim knew he couldn’t do that. In the spring of 2009, just before he graduated from college, Ben was accepted into the Marine Corps officer candidate school and went to boot camp in Quantico, Via.

Tim and Marcy were determined to be there in August when Ben graduated, even though they knew it would be extremely difficult for Tim to travel from Bismarck to Quantico.

Tim was adamant: “There’s no way I’m going to miss this.”

He didn’t.

Through the rest of the summer, fall and winter of 2009, Tim continued injecting himself daily with doses of Infergen, Neupogen and ribavirin. When his stomach and legs became too sore and red, Marcy would have to give Tim his injections in his arm and buttocks.

Tim said he became so weak he could barely lift himself off the couch.

Tim felt sick all the time, couldn’t sleep and knew his spirits were flagging.

“I don’t know if I can do this any longer,” he said.

The 48 weeks of torture ended on February 19, 2010, but he had to wait six months to hear if his second treatment ordeal had been successful.

Once again, Tim went to work, rebuilding his body and his life.

Editor’s note: Tim Lickteig of Bismarck will be among those at the starting line for this year’s Boston Marathon. Cathy Lickteig, who offers an inside view of Tim’s agonizing fight against hepatitis C, is his older sister. She resides in Camden, Maine. This story is the second in a three-part series.

By CATHY LICKTEIG For The Tribune Bismarck Tribune  Friday, April 15, 2011 8:08 pm

When Tim Lickteig steps over the starting line at the Boston Marathon on Monday he will have won an inexorable, two-year race to reclaim his life.

Three years ago, Tim, then 50, learned he had

hepatitis C.

The diagnosis was a shock and an embarrassment. Tim believed that he’d already atoned for his intravenous drug use. In 1980, Tim spent three months in an inpatient drug treatment program and six months in an outpatient group, both in North Dakota. His first job was at a treatment center in Iowa helping others begin their recoveries.

After also working in Indiana and Minnesota, Tim moved to Bismarck in 1990. He was joined by his wife, Marcy, and their young sons, Ben and Andy.

Tim and Marcy put family life ahead of everything. The boys thrived in the Bismarck schools, both competing on swim teams. In addition, both boys achieved black belts in taekwondo.

Marcy began what would become a 20-year career at Basin Electric Power Cooperative. Tim started working for automobile dealerships in Bismarck. He and Marcy rode their motorcycles, played golf and took ski trips with their sons. Tim worked hard, laughed often and was kind to everyone. He often brought to his family’s dinner table acquaintances who were putting their lives back together.

Unfortunately, Tim’s commitment to his recovery and healthy living couldn’t stop the hepatitis C virus from destroying his liver. The disease produces no symptoms. So by the time heart issues, fever, fatigue and muscle pain sent Tim to his doctor, he’d already developed stage 3 liver disease, 28 years after making his break from drug use.

If that wasn’t enough, Tim had to find a way to tell his sons that the consequences of his behavior many years earlier had caught up with him.

The demons had gotten a foothold and would have to be exorcised again – this time with powerful drugs that, ironically, he would have to inject into his body.

“I was 18, and a senior in high school,” said Andy, who has his father’s grin, red hair and green eyes. “My folks told me the hepatitis C was serious and that we didn’t know how it would turn out. It wasn’t easy to hear that.”

Ben bears a striking resemblance to his mother with his broad smile, brown hair and hazel eyes. “I was 21 and away at college,” he said. “In some ways getting the news over the phone softened the impact, but I wished I could have hugged my dad and mom when they told me.”

Both those who have endured it and the medical professionals who prescribe it describe the treatment for hepatitis C as hellacious.

Tim’s protocol included weekly injections of interferon, a potent chemotherapy; twice-daily doses of ribavirin, an anti-viral drug; and daily injections of Neupogen to help the bone marrow produce white cells to fight infections. The side effects of these drugs -nausea, severe weight loss, skin lesions, fatigue and intermittent depression – would wreak havoc with every part of his body and his life.

“The treatment is so awful that only the most motivated of patients can handle the 48-week course,” said Kent Martin, Tim’s doctor.

Martin is an internal medicine and infectious disease specialist at Medcenter One.

Even though I’m twelve years older, Tim and I are very close. We come from a family of five children. As the oldest and the only daughter, I was pressed into duty caring for my younger brothers, in Albert Lea, Minn. That was especially true with Tim who, as a baby, was small and thin.

As we grew into adults, we spoke on the phone on weekends.

The calls between Tim’s home in Bismarck and mine in Camden, Maine increased in frequency during the spring of 2008. By that time he was about 12 weeks into his 48-week course of treatment. Tim’s voice was strained as he swallowed the tears he was holding inside. He described the horrible side effects – the sores on his legs, the nausea, hair loss, fatigue, depression and weight loss – from the medications.

Tim wondered if it was worth it.

“How can something that makes me so horribly sick make me well?” he asked. “What if the treatment doesn’t work? It doesn’t always.”

There were no answers. Family and friends just listened and worried.

Marcy had to sit by and watch the attack on her husband’s mind and body.

“I tried to be positive when Tim was around. I did my worrying in private; Tim felt guilty enough,” Marcy recalled. “One night Andy noticed that I’d been crying. He gave me a huge hug and said ‘Dad’s going to be fine.’ This moment gave me renewed strength to keep going.”

During the next few months Tim’s immune system became so ravaged from the drugs that an ordinary cold became a life-threatening bronchitis. The lesions on his legs were almost impossible to control. He needed extra doses of Neupogen to fight infections. He was dangerously underweight for the amount of interferon and ribavirin he needed to fight the hepatitis. People bribed, nagged and cajoled him to eat, but nothing smelled good, nothing tasted good.

If only he could keep his spirits up.

In May, 2008, I flew to Bismarck to attend the high school graduation of Tim’s younger son, Andy. Until then, Tim had said no each time I asked if I could visit.

“I can’t stand the thought of you seeing me like this,” he’d say.

Tim and Marcy met me when my plane arrived. It was a good thing that Marcy was there because I almost didn’t recognize Tim. He couldn’t stand up straight, he was thin and pale. A familiar eye brow curl was there, but it wasn’t dancing.

Later, when everyone else had gone to bed, I asked Tim if one of my jelly omelets – one of the few foods he’d liked as a baby – might help. He shook his head. “Couldn’t keep it down,” he replied.

Months later, Tim told me that the only family photo taken that year was with Andy at graduation.

As that summer ebbed into fall, Tim began to feel “less horrible,” as he put it.

Blood tests taken every month during the previous 44 weeks had shown a progressive and substantial drop in the viral load – the number of hepatitis C cells.

Though they never allowed themselves to get too optimistic, Tim, his family and his doctor felt pretty good about the way things were going.

His doctor needed no persuading when Tim told him he wanted to go sky diving to celebrate the fact that the treatment was almost complete. Martin signed the medical release and told Tim that he deserved to have a great time.

On a crisp September day in 2008, when the sky over the North Dakota prairie was endlessly blue, Tim, Marcy, Ben and Andy had gathered at the Fargo airport. They were there to celebrate Andy’s graduation and Tim’s improving health.

Professional jumpers instructed them in the use of the equipment and safety procedures. Each member of the family prepared to jump.

Tim was the first to go. He and his professional jump partner boarded a small single-engine airplane. When it reached about 13,500 feet, Tim and his partner attached their harnesses together, moved toward the open door and leapt out of the plane. Later that evening Tim described his experience.

“You lie flat out and just fly. You don’t even have to breathe. There’s no noise when you’re free falling at 120 miles per hour. I felt like I was floating not falling,” he said. “It was like drifting on a bed of air. After several minutes of flying, my tandem partner told me to pull the cord to open the parachute. We glided softly to the ground and landed standing up. It was an out-of-body experience and I didn’t even think about hepatitis.”

Propelled by his soaring spirits, the last four months of Tim’s treatment passed quickly and with a diminishing level of nausea and fatigue. At the end of the 48th week, January 2009, blood tests indicated that the count of hepatitis C cells was down to zero.

Everyone was ecstatic. Martin told him they would wait six months before doing any more testing. Tim set out to reclaim his life.

Editor’s note: Tim Lickteig of Bismarck will be among those at the starting line for this year’s Boston Marathon. Cathy Lickteig, who offers an inside view of Tim’s agonizing fight against hepatitis C, is his older sister. She resides in Camden, Maine. Today’s story begins a three-part series.

MODERN LOVE COLUMN THE NEW YORK TIMES
His Art Is His Joy. It Just Didn’t Fit My Plan.

By CATHY LICKTEIG MAKOFSKI

The parking lot at my son’s graduation is a sea of motorcycles: black, yellow, loud, smoke-belching, flame-adorned, sparkling with chrome so bright you have to look away. Far from the dappled shade of any Ivy League campus, this blazing blacktop belongs to the Motorcycle Mechanics Institute in Phoenix, Ariz., a sprawling complex of freshly whitewashed, warehouse-size buildings with red and blue accent lines. Inside are classrooms, labs and mock dealers shops for the students who, like my son, Alex, study to become certified in the assembly and repair of motorcycles.

My husband steers our rented Nissan through the lot, searching for an empty spot among the motorcycles. Hiding behind my sunglasses, I look around at the other parents and friends in their halter tops and jeans, scarf shirts, sleeveless T-shirts and turquoise bracelets. And tattoos, of course, lots of them: roses, serpents, spiders, geometric patterns and sunbursts, explosions of red, blue and green.

We, on the other hand, are just in from Maryland, and I’m wearing a linen pantsuit and white shirt, my husband sports his standard short-sleeve button-down with pressed khakis, and my daughter has on a J. Crew polo shirt and hip-hugger pants. With our sickly winter-white skin, we look as if we’ve just been released from an extended hospital stay. We have no tattoos, not even a cute little ankle flower.

Today is ostensibly a celebration, but I’ve been churning with that familiar stew of hope, love, embarrassment and worry that has generally ruled my relationship with my son for most of his 27 years. Just two months ago, when I thought that with this impending graduation he had finally outgrown his penchant for derailing my dreams for his life, it happened again. The news came in a phone call: “Mom, guess what? I’m going to become a tattoo artist.”

I sat down, stunned. “But what about all your motorcycle training?” I said. “The months of hard work, the classes, the chance for a well-paying job. You’re throwing all that away?”

“I’ve decided that tattooing will be my full-time job,” he said happily. “And my band. Music and art, those are the things I love. Working on bikes, well, that’s what I’ll do when I need to make extra money.”

DISAPPOINTMENT clogged my throat. How could he change his mind again? And then I turned the disappointment inward. Stupid me; I’d actually allowed myself to get excited about this, his motorcycle certification. Granted, a motorcycle mechanic son may not sound like nirvana to some parents. But in our case, I felt it was Alex’s best chance for a “career” and to become self-supporting.

Alex has spent most of his life poking, pushing and prying open commonly accepted norms of behavior in hopes of finding a place for himself. Ever since he was old enough to race his tricycle down the sidewalk with such abandon that neighbors grabbed their children out of his way, Alex has been living life on his own terms. And I, as the single mother I was for much of his childhood, have often been pushed to my limit trying to raise him and, with what energy was left, his younger sister, while working full-time as a public relations executive to support us.

In middle school, Alex clashed with teachers about his black and red hair, flying shirttails and intermittent attendance. He was bright and wild with energy for anything but the classroom. He taught himself to play guitar, bass, saxophone and drums, created noisy basement bands and wrote volumes of music and lyrics. When he wasn’t making music he was drawing – birds, fish, flowers – with fine detail.

At first his art appeared on paper and canvases. Then he branched out to brick walls and bridges, where he and his friends would leave their spray-painted tags for me and others to see as we drove around our staid Maryland suburb. I’d cringe with shame and fear every time Alex pointed out one of his designs, a flourish of paint with a crest, some stars or an asterisk. Alex’s tags were rarely the same, reflecting what he had to say at the time. To me his marks were graffiti, a crime, and I worried he would be arrested.

Still, I hung his drawings in a gallery of my own – my office – and dreamed of the day he would be able to channel his intellect and creativity positively, to become the kind of artist whose canvases would hang in real galleries.

Instead, he started making a canvas of himself. At 17, Alex had the word “unity” tattooed on his upper arm. He never asked my permission, and when I saw it, I told him it made him look like a punk. He told me the tattoo reflected his stand on “race, equality and acceptance”- a touching sentiment, perhaps, but despite his call for acceptance, it was a little hard for me to accept.

Of course, that was only the beginning. Soon he dropped out of high school and moved to the West Coast to live with friends and then to Arizona, where he became addicted to heroin. This was a terrible time. My devilish, spirited son – the same boy who once explained to his kindergarten teacher he couldn’t draw melted snowmen because they didn’t leave a mark – was now lost on the streets of a city 3,000 miles away, sticking needles in his arm, probably sleeping in cardboard boxes. If I saw him on the street, would I even recognize him?

All along I’d been determined to stay connected to Alex by not issuing threats or ultimatums. Despite my open-door approach, there were times when I didn’t hear from him for weeks. But I had faith that he’d find his way out. He acknowledged that drugs were eating him alive and told me he was ready to enter an addiction treatment facility, where he went into recovery. He has remained clean for seven years.

MEANWHILE, Alex’s collection of tattoos spread from his upper arms to his neck, lower arms and back. Given his love for them, I shouldn’t have been surprised that he would want to become a tattoo artist.

Trying to convince me that his plan was legitimate, Alex pleaded with me via e-mail: “The best tattoo artist in Arizona has taken me on as an apprentice!” he wrote. “He says that I have the drawing talent to be great.”

I wanted to ask him to face reality for once, to be able to tell him something, anything that might change his mind. But I kept that clenched inside and instead wrote, “Alex, please help me to understand what it is about tattoo art that you find so appealing.”

“Oh, Mom,” he replied, “your questions make me so happy! Tattoos are unique pieces of art. I love the imagery, the unique and personal way of identifying myself, my beliefs and my values. I love the Native American spirit designs and the Japanese or Chinese characters, the roses, swallows, daggers, flames, names and memorials.”

“Don’t you worry about hepatitis?” I typed.

“I make sure my tattoo artist wears gloves and uses new needles and that the shop is bleach-smelling clean.”

“Do you really think you can earn enough as a tattoo artist to support yourself?”

“Mom, I think I can make it all work!”

I tried to imagine what it was like for the family of Arnold Schoenberg to appreciate his atonal music, which, to many at the time, sounded like air horns and geese honking and drove some hearers to riot. And who in Jackson Pollock’s family could have foreseen that when he dripped his paints across a canvas on the floor he would become a famous abstract expressionist?

The families and guests of the Motorcycle Mechanics Institute graduates enter the air-conditioned auditorium and look for seats. The students are 18 to about 65, know exactly where they want to sit and don’t hesitate to push the neatly arranged chairs out of the way to get there.

Alex, with his dyed black hair, bright blue eyes and Arizona-bronzed skin, sits with us, although he’s up and down every few moments high-fiving fellow students.

I look at Alex. His laughter is easy; his arms and legs, covered with tattoos, move with abandon. He hugs his friends freely. My son – this young man I love so much but who has caused himself and his family such heartbreak over the past 20 years – is absolutely filled with joy.

“Welcome to M.M.I.’s spring graduation,” the school official says. “We are here to honor those who have completed all of our courses and those who have completed the special certification programs for specific motorcycle manufacturers.”

“Graduates,” he continues. “First I would like you to thank the friends and family members who have made it possible for you to be here today.”

Alex and I hug, and I feel the tears pour out. Then he hugs his sister and shakes his stepdad’s hand.

And before long his moment has arrived: Alex is called to the front and the classes he took, his perfect attendance and outstanding grades are noted. As his fellow students whistle and whoop, Alex looks embarrassed but only for a moment. Then he takes his diploma, holds it high over his head and shouts, “Yay, I made it!”

Of course, in the nearly two years since that joyous occasion, Alex hasn’t used his hard-won certification to work as a motorcycle mechanic for a single day. Not even once.

But he was right; he had made it. Not in the way I might have dreamed about. Not as the new Jackson Pollock. But at 28, he is happy and self-supporting, living the life of his dreams. And he sacrifices everything to pursue his art, which you can see on traveling exhibition throughout the Southwest on the backs, legs, arms and chests of his many appreciative canvases.

Cathy Lickteig Makofski is a writer living in Camden, Me.

By Cathy Lickteig Makofski Special to the Washington Post
Thursday, December 23, 2004.

The Rev. Richard Tillman stands back, respecting your space, arms close to his body, his head tilted slightly downward. His brown eyes look up, as if he were peering over spectacles. The eyes make the first connection. Smiling broadly, he steps closer and grips your hand. A kind of current seems to pass.

“He’s our heart and soul; everyone feels his love,” said Earl Arminger, 62, who’s been a parishioner at St. John the Evangelist Roman Catholic Church for more than 28 years. “He’s the reason our parish is as rich and diverse as it is.

Since 1977, Tillman has been pastor of the church, whose parishioners meet at the Wilde Lake and Oakland Mills interfaith centers. He arrived when the word “inclusive” had come to define life in the planned community of Columbia, then only 10 years old. The Catholic Church, guided by the Second Vatican Council, also was broadening its world view, opening itself to ecumenical relationships within the church and with other denominations. There couldn’t have been a more exciting time for a 37-year-old priest who was becoming the fourth pastor of St John’s.

“What appealed to me was that it was so uncharted, there were no precedents, and I would be involved in community bridge-building,” said Tillman, now 65.

His parishioners didn’t have a church; they met at the interfaith centers in Wilde Lake and Oakland Mills, in space they shared with Protestant and Jewish groups.

Jim Rouse, the founder of Columbia, believed that locating such centers in Columbia’s villages would promote an understanding and respect for different faiths and help attract new religious communities that couldn’t or didn’t want to buy land and build a church in the new town.

“[My wife and I] like the feeling of acceptance in this parish,” said Al Bahr, 59, who said he converted to Catholicism after a serious illness.

Tillman found the dialogue with the other clergy and parishioners stimulating. “Our discussions took me back to the fundamentals of my faith and allowed me to learn about the important beliefs of other faiths,” he said.

Today there are interfaith centers operating not only in Wilde Lake and Oakland Mills but also Long Reach and Owen Brown. Others are being built at River Hill and King’s Contrivance. The congregations have found ways not only to share space but programs as well, without feeling as if they have given up any of their own faith.

Many credit Tillman for much of that success. “Through his extraordinary gifts of intellect and personality, Father Tillman was able to find common ground among the faiths of Columbia,” said Mary Posek, a parishioner at St. John’s until she and her family moved to South Carolina in 2002.

At the same time, she said, he helped “bridge the liberal ideals of the parish with the conservative tenets of the Catholic Church in a way that seemed transparent to all of us.”

A Respect for Differences

Tillman’s ability to appreciate different religious beliefs began at home. He was born in 1939 in Towson, Md., the oldest of five sons of a Catholic mother and a Unitarian father.

“Our parents were devoted to their children, and their religious differences were a creative rather than a destructive part of our family life, ” he said.

He attended parochial schools until high school, when he transferred to Towson High. He liked math and science and first thought he might like to become a surgeon. “That’s when I started praying and reflecting on my future and thought about the parish priests I had known growing up and the important role they played in our lives.”

The night before he entered St. Mary’s Seminary in Baltimore in 1959, his father asked: “Son, do you really want to do this?”

Before Tillman completed his training at the seminary, his father, who had become ill, decided to convert to Catholicism.

The morning of his ordination in 1965, Tillman followed the tradition of every other seminarian and sought the blessings of the priests who had guided him through his six years in the seminary. “Above all, be a good priest,” Jack Canfield, professor of dogmatic theology at St. Mary’s, told him.

His first assignment was a parish in Linthicum Heights outside of Baltimore. In 1968, he went to St. Mary Star of the Sea in South Baltimore, and in 1972 to Holy Cross and our Lady of Good Council, neighboring parishes in Baltimore’s Federal Hill community. During that time, Tillman’s pastoral duties expanded into the community. He worked closely with other clergy, community organizations and small businesses.

“I think my work with the disparate, but not disharmonious, groups prepared me for the work in Columbia,” said Tillman, who describes himself as an introvert in a job that demands an extrovert. “Most introverts learn by thinking and then talking, and extroverts learn by talking. I’ve had to become an extrovert with an introvert’s style.”

The Rev. R. Whitfield “Whitty” Bass is pastor of the United Methodist Presbyterian Church, which like St. John’s has been an anchor of the Wilde Lake Interfaith Center since the beginning. “What I have found with Dick is a bright, humble man committed to doing everything he can to bring people together,” said Bass, who has been an interfaith minister for more than 35 years.

Their parishes are involved in many projects including the Appalachian Service Project, the bi-monthly Hospitality Center and Palm Sunday and Thanksgiving services.

Since Tillman became pastor of St John’s, the number of families in his parish has grown from 1,800 to more than 3,000 families. He supervises two priests, two deacons, administrators and secretaries who are responsible for music, education and social events. He says at least a half-dozen Masses every week, performs baptisms and marriages, meets with parishioners and visits the sick. In addition, he has served as the ecumenical officer for the Archdiocese of Baltimore for more than 25 years.

“His style has brought many Catholics back to the church, attracted more young people to the parish and welcomed a large and growing Spanish community, and he has also reached out to the Christian communities,” said George Martin, president of the Columbia Cooperative Ministry.

Taking Time to Reflect

As he approached 65, an age when priests often leave the daily responsibilities of managing a parish, Tillman wondered if it was time to step aside. “I did not want to be seen as a hanger-on,” he said. Then in September of 2003, he unexpectedly underwent quintuple bypass surgery. His recovery proved to be more than just a better diet and more exercise. “I found I had renewed vigor for our parish and community and decided to remain as pastor of St. John’s a while longer,” he said.

Before Mass on a typical Sunday, Tillman pulls himself away from greeting parishioners, slips into the quiet vestibule where he puts on his vestments and reflects on the day’s Gospel and his homily. He reads widely — the theology of the scriptures, history, popular literature and current events — and tries to blend the realities of life and Catholic teachings into his message.

“There’s a thin line between entertainment and theology, and my hope is that I deliver something that people will get,” he said.

When he’s ready, Tillman bows his head, puts his hands together, holds them chest high and walks into the center of the contemporary open room at Wilde Lake Interfaith Center that is St. John’s “church.” A small band of young musicians plays a modern hymn and the congregation sings. A simple gold cross sits on the altar table in the center of the room. Tillman turns and faces the congregation in the pews. When the music stops, he pauses a few minutes, opens his arms and raises them above his shoulders before speaking in a deep and powerful voice.

Being a good priest, he said later, requires “reflection, compassion, dedication and confidence that good works do make a difference.”

“And,” he said, “there’s more. All of us in the clergy work from the same material, and we can’t take credit for what happens when we bring a spiritual focus to someone’s life.”