AbilityMaine: Maine People

Determined to Face Adversity Together

By
Susan & Bliss

It was a great surprise to meet Susan at the Ability Maine gathering held in Freeport, Maine this past summer. I had exchanged many e-mails with her and knew some of the details of her struggles in living with multiple disabilities. Yet, I had no idea she would actually be attending the event that day, although I had invited her. To compound the surprise factor, she was introduced to me by her partner, Bliss, whom I had met several times in the 1990's in a support network, but hadn't seen her for some time. The serendipity of the moment was quite special. At the end of the meeting, they both agreed to follow-up on helping Ability Maine and contributing to the disability community in Maine. Well, here they are, and I'm happy that they have come forward to do an article. They have an incredible story that depicts the uncertainty of fate, the power of sharing, the importance of HOPE, and above all else.......LOVE! -Russell Anderson

I had many viral illnesses as a child. Many went untreated. In 1994 I was certain that I had a brain tumor or some other drastic medical condition. I got into my car and got lost. I was unable to find my way home. I was also constantly thirsty and had horrible insomnia, body pain and migraines. I asked my doctor (of 17 years) to do extensive medical testing to find out what was wrong. My levels of EBV (Epstein Barr Virus) and other viruses showed possibilities of Chronic Fatigue Syndrome. I then saw an Infectious Disease Physician who confirmed the diagnosis of Chronic Fatigue Syndrome. My first reaction was denial. After that, I was forced to make job changes as my cognitive problems became worse.

I had been an Executive Secretary/Office Manager for 20 years. In 1994 my cognitive problems worsened so drastically that I was unable to perform secretarial duties. I then was a Home Health Aide, and finally a Direct Care Staff in a Group Home for adults with disabilities. I have "biological" family - totally non-supportive. I had my own home in Utah, but no other important ties there. My "friends" had mostly deserted me when I was still sick 6 years later after my diagnosis. I was not diagnosed with Fibromyalgia until 1998; although I had all the symptoms of Fibromyalgia all along. I now have CFIDS/FM/MPS (Chronic Fatigue and Immune Dysfunction Syndrome, Fibromyalgia, and Myofascial Pain Syndrome) and many other associated problems.

I haven't worked since June of 2000 and am now totally disabled. My goals in Utah were to remain employed as long as I could and perhaps get some level of better health. The most challenging and difficult aspects of my illnesses are that they are not visible. "My Illnesses are invisible, I am not."

Bliss: From an early age I was plagued with chronic pain and viral illnesses. It seems as though the downward spiral began when I was hit and run over while crossing the street. The year was 1985 and I was in college, not many cares in the world except grades and homework. Little did I know that this event would begin a life of severe chronic pain and a long list of diagnoses that even I can't always keep straight.

After about 19 months and hundreds of hours of physical therapy I was able to continue my life, if not my college career.

After a period of years working as a Residential Supervisor and Day Program Case Manager for adults with mental retardation/mental illnesses, life as I knew it once again began to unravel. I was assaulted by a client, herniating a disc in my back. After subsequent episodes such as this, I knew I had to leave this line of work. I spent the next year living in Florida buying and selling antiques. It was one of the best years in my life until, towards the end of the year, I herniated another 2 discs. The pain was so extreme I was bedridden for weeks. The health care in Florida is not what I was used to in Maine; shall we say it was less than adequate.

I flew home with much difficulty, though in a wheelchair. I consulted an Orthopedic Doctor near my home in Rockland and was given some of the most devastating news of my life. I needed at least 5 major surgeries to replace both hips and both knees as well as a back surgery. Since that time I have had 9 surgeries.

Life now has handed me another cross to bear. On top of Advanced Osteoarthritis, Advanced Degenerative Disc Disease, Peripheral Neuropathy, Stickler's Syndrome (Connective Tissue Disorder) and severe chronic pain. I now have a rare type of cataract (Posterior Subcapsular Cataract) that has left me with drastically reduced vision and soon will leave me totally blind. Despite these terrible turns of events I have kept a sense of purpose and remind myself each day that I was put on this earth to help others and I strive to do so at every opportunity.

In May of 2002, I graduated with a BS degree in Mental Health and Human Services. It has, for some time, been my intention to go on to graduate school for a Master's Degree in Counseling. Given the current vision diagnosis, I may need to postpone graduate study while I adapt to being blind.

Susan: On January 25, 2001 we met each other on an Internet chat site. We are still astounded that although 2,500 miles apart, we met. I remember it was cold in my house and I had already put on my pajamas and gone to bed to get warm. Something prompted me to get up and be on the computer. We were both in a chat site that neither one of us frequented. On both parts, it appeared as though no one else was in the chat room. A split second too early or too late and we would never have met each other. After that chance meeting, we logged more than 800 hours of conversation, on the telephone and over the Internet. We exchanged many letters also.

After knowing Bliss for six months, it was clear that we were beginning to bond. After Bliss graduated from college, she traveled to Utah. We both feel very strongly that we had divine intervention in getting us together. Bliss had a round trip airline ticket. She was scheduled to return to Maine in four months. I put my house up for sale and it sold while Bliss was still in Utah. We were able to arrange to have all of my household goods shipped by a moving company. My car was shipped via another moving service. We both flew to Maine on the day that Bliss was originally scheduled to return. We purchased a home only 2 miles away from Bliss's mum, moved in and began to think about what we would be doing in the future.

We had a yard sale last summer. There was a lot of dust around, etc. During the yard sale Bliss's eyes were foggy and blurry. This continued after the yard sale. Bliss called the Eye Doctor. During her visit to the Eye Doctor, he told her that she had a Posterior Subcapsular Cataract in both eyes and that it was a fast advancing cataract that would eventually cause total blindness in both eyes. We got a second opinion from another Eye Doctor who further told us her optic nerve was badly damaged. As of December 5, 2002 Bliss can only barely see movement out of her left eye. The vision in her right eye continues to deteriorate more every day.

Despite many disabilities, we have a renewed sense of empowerment having braved the daunting adventure of a 10 day trip to Palm Springs and Disneyland in California. We were able to go on this vacation after making all of our own arrangements, and we really enjoyed it! We will remember happy memories of Disneyland and our friend Mike forever!!!

We are now adjusting to yet another new life. It is a daily struggle, and the challenges are many.

Susan: "I am going to assist in starting a local Lupus/Fibromyalgia Support Group."

Bliss: "I expect to continue graduate studies as soon as I have made an adequate adaptation to being blind."

Despite many obstacles, our relationship has remained strong and loving. It is nearly impossible to imagine our lives without each other. We have overcome many obstacles together and we will continue to do so. We are still very much in love. That carries us through the bad times and the good times!!!

It was Monday June 22, 1970, five days after I had graduated from a small high school in Pitman, New Jersey. I was working as a carpenters helper at a boys camp in Etna, Maine called Camp Katahdin. My grandfather had founded the camp in the thirties to bring boys from the Philadelphia area to Maine for an eight week summer camp experience. Most of the boys came from Friends Central School but other boys were recruited from surrounding schools. Friends Central was a Quaker school. I had come to Camp Katahdin every summer since my birth year, 1952.

The camp was called Katahdin because the major summer activity for boys attending was to climb Mt. Katahdin.

Monday morning we started work. Before the day was over my life had changed forever.The project that particular day was to build a petition in the farmhouse on the main road. My task that day was to cut spacer two-by-fours to wedge in the petition and give it some stability. I was working out side the building and had finished cutting about ten spacers. I picked up the load and walked into the house, the carpenter was on a ladder toeing a nail into a top stud. Just as I entered the room where the petition was being constructed, I heard a ping. I looked up. Something struck my eye. I blinked. An eight penny nail fell to the floor. My eye watered. A sharp pain darted from my eye to the back of my head. I squinted my eye shut. I sat down and waited a few minutes. Then I tried repeatedly to open that eye but couldn't. A co-worker rushed me to a local family doctor in Newport.

The waiting room was like someones living room. It seemed like hours before I finally was called in. I sat in the doctors chair. The smell of rubbing alcohol filled the air. My hand held a white gauze over my right eye. A sharp penetrating pain shot from my eye to the back of my head. The old Maine doctor approched.

The doctor removed the gauze from my eye and used his thumb and forefinger to pry my eyelids so he could get a better look. The light from his penlight burst through my eye with a kalidescope of bright color. "What happened Steve?" he inquired, as he looked intently into my right eye.

"I was working in the farmhouse at camp. We were building a partition in the bathroom to make extra space for a closet. The carpenter was nailing a stud into the top plate. He had to toe it in because of the angle. I was carrying in a load of wall spacers. My hands were full. Just as I entered the room he hit the nail. I heard a ping. It wasn't a square hit. I looked up. The nail struck my eye. I blinked. The nail fell to the floor. The pain started then and has gotten worse since."

"No a friend brought me, Dad is still at Camp" He looked into my eye again. "You need to see an eye Specialist immediately." The physician briefly left the room and returned with a nurse.

He went quickly to his desk. He pulled a small book from the right hand drawer. His eyes darted from the book to me and back to the book.

"Hello Margaret this is Dr. Burke, is Dr. Osler in?" He listened. His expression showed exterme annoyance. "Yes it is an emergency", he scorned.

My mind went crazy. Emergency? What had happened to my eye. Things had gotten into my eye before. A little water usually flushed the spec and everything was allright. Fear overwhelmed me for a momment, I was stunned I refocused on the what the doctor was doing.

The doctor got off the phone. "Steve, you need to go directly to Bangor from here. I will call your Father. Dr. Osler's office is off State Street a block or two from the hospital, he is expecting you."

Emergency surgery was performed and the lense was removed. Luckily the nail did not pierce my retina. I was left with limited light vision and no focus, which is kind of like looking through four sheets of wax paper, essentially blind in my right eye. I stayed in the hospital for about three weeks and then was released home for the summer.

The fall of 1970 I enrolled in a local community college, Gloucester County College and went out for soccer, but was unable to play. I would get tremendous migraine headaches every time I ran full speed or my head was jolted. This was one of my first major dissappointments because I was jock in high school and relatively successful, although now looking back I could have been much better. With out sports I drifted from an academic purpose to a feel good purpose. College study time was in competition with other more ic pleasures such as drinking beer, listening to The Beatles, and trying to impress young beautiful college women, among other things. The only course I passed that first semester was Psychology 101. I remember a paper I wrote on autonomic function. That spark of knowledge led me to the interest I now have in quantum healing and rehabilitation. I left school after one semester and headed for Boston with failure number one under my belt. That winter, the winter of 71 was my winter of discontent. I lived in a hippie Commune in Cambridge sold Boston Phoenix Newspapers on a street corner, ate a lot bagels and wondered about the future. By spring I was ready to get a real job so I moved home to Maine. I worked as a junkyard auto disassembler at Rolnick's in Brewer Maine for the summer and was fired. The owner told me I was too smart to do hard labor and that I should go back to school. I wasn't ready for college, so I signed up to go to cooking school through CETA. The school was in Lewiston Maine. I lived at the Auburn YMCA, a real palace. While learning culinary arts, I started volunteering as a crisis counselor at a crisis and rescue center called Rap Place.

Rap Place was accross the street from the park and next to the police station. Recreational substance abuse was at an all time high. Some veterans were returning from Vietnam addicted to all kind of substances, and others with Post traumatic stress disorder, although I don't believe it had been labled that yet. Street people were strung out on anything they could get their hands on. Street people were different in the early seventies. They were homeless because they wanted to be, runnaways, both teenagers and young adults. Running from strict parents, pregnant wives and other situation beyond their coping skills. This was my first line training as a rehabilitation counselor. We maintained a 24 hour hot line. People would call in saying they had just eaten a bottle of blue pills or taken 10 hits of something else. Our job was to stablize the individual emotionally on the phone long enough to find out what they had taken and to get an ambulance to the site quickly. We saved many lives back then. However, not all were grateful of our efforts. We once had a visit from a returning Vietnam Vet who came in wielding a 38 revolver. He wanted to shoot all of us. He said we were all communists because we didn't go into the service. Luckily one of our staff members was a vet who was able to convince him we were all ok. That experience shook me. I decided to take a leave of absence.

I had saved some money so I went Europe to find myself. I lost my homemade leather satchel with my passport and all my American Express travelers' checks two days after I arrived in Amsterdam. Two weeks later, after hanging around the American Embassy for hours every day, my passport and checks were returned to an Amsterdam police department. They had been found by some honest European. I was able to continue my trip. On to France, Germany, Italy and finally Spain, where I stayed throughout the Fall of 1971 and winter of 1972. Knowing some Spanish, I was able to get a job as a short order cook. I spent Christmas in the Canary Islands. They fill shoes left on the door step with candy and St. Nick rode a camel.

I returned to the states and continued working at the rescue center as a crisis intervention counselor but was tired of that kind of work. I was writing poetry and had kept a journal of my travels while in Europe the first time. I met a woman who told me she owned a villa in Spain. She said I could use it to write my great American novel. So I returned to Europe. What a mistake! There was no villa. She had lied to me. I had a difficult time with that situation. I couldn't believe I was so naive. Boy was I gullible. I began to question God and many other things. Why me? I never hurt anyone. My anxiety level rose to a point to where I needed to come home immediately. But I was broke. I met some people who let me stay with them while I figured out what I was going to do. I finally had to get the money for a return ticket from my Dad, who couldn't afford it because he was a public school teacher. This added to my anxiety. When I arrived in this country I was exhausted, stressed out and in need of some serious rehabilitation.

I spent Christmas with my family and recuperated enough to enroll in College for a second try. I didn't even complete the semester. I couldn't stay focused. I had some residual anxiety leftover from my European trip. I did have one great experience during this period. I learned to use meditation as a calming focusing exercise. . This was the beginning of my personal rehabilitation and recovery.

Over the next 18 months I worked as a short order cook and assistant manager. I was a good cook but I d the hours. I finally decided to see a Vocational Rehabilitation Counselor. I went through a series of assessment, physical and mental restoration and was funded for one year of college. I was to complete the rest of school on my own. I entered the University of Maine at Augusta in September 1974.

I met Allison that fall at UMA about two months after she had been in a severe automobile crash. She wore a scarf covering where they had shaved her head to do exploratory surgery. She walked with a cane and her pain medication gave her speech patterns a slight slur. I admired Allison then more than anyone I had ever met. This traumatic event had nearly killed her but she was able go on. She is the strongest person I have ever known. Over the years I have watched her heal to a point today where she works out every day and looks great. I tease her sometimes saying she was my first rehabilitation client even before I knew Rehab would be my life work. She has been my rock, my inspiration, and most of all my best friend. We were married in Augusta 1975. I also had an inspritational experience in September of that same year. I was meditating and decided to pray that Jesus would enter my life. Even though I had thought I was a Christian long before this, raised a Presbyterian, I was awstruck at the experience. I believe the Holy Spirit touched my soul and I never have never been the same. I developed a relationship with God through that experience that has been nurtured by the Maronite Church where Allison and I had been married. I also developed an interest in an Eastern Christian based monastic practice and called centering (Contemplative Prayer) and faith. An interesting explanation of this centering or contemplative faith can be found in an article written by Thomas Keating modifying the 12 step process to a transformational experience.

I have a great deal of respect for other cultures, religions and faiths and do not profess that all people should be Maronites or Christian for that matter. But it works for me.I have found a great sense of peace through this faith and I do believe that all people should seek their creative source and find peace in that center. Once found each person should be true to self and be careful not to judge other peoples beliefs or lack of belief. Faith is always personal and should stay that way. Most people I know honor my privacy about this and I appreciate that.

I then decided I wanted to become a rehabilitation counselor. I began to focus my reading on rehabilitation related material. I graduated in 1980 from the University of Maine at Farmington with a B.A. in Rehabilitation Psychology. Since then I have worked as a therapeutic recreation Director, an Employment and Training Specialist, a Vocational Evaluator and started my private practice working with other injured workers in January of 1985. October of 1987 I prepared and sat for the most miserable test of my life, the grueling CRC exam. I passed after having to appeal my application process three times. I founded a rehabilitation consulting company in 1985 which I closed in 1998. I have returned to public sector rehabilitation as a vocational rehabilitation counselor with the Maine Department of Labor, Bureau of Rehabilitation Services. Recently, I have decided I would like a leadership role in the field of rehabilitation. I have enrolled in the Masters of Public Administration at Orono and will complete my studies in the Fall of 2004. I hope then to work with government resources to meet the needs of individuals with disabilities in employment and community based living.

I have had a great deal of help along the way and am extremely grateful for every bit of it. I have had a few unpleasant experiences related to the private Rehab business, but I am told that business is business. I went to Thomas College for a few years in the late 80's to further my understanding of business administration. I learned alot. But, I also learned that private business was not going to be my life's work. I think that is when a second life transtion began. I decided I wanted to learn more about public service. I had run for City Counselor in 1987 but lost. I ran again in 1993. I was elected to the Waterville City Council. I learned alot about our form of government. I began to think about public Service in a rehabilitation context. This was where I felt best. The fall of 2002 I was accepted into the Masters of Public Administation program at the University of Maine at Orono. I hope to combine my personal experience and professional training in rehabilitation with Public Administration and Policy Studies.

Finally, I really love the rehabilitation profession and feel challenged everyday to do a better job and empower as many individuals as I am able to get on with their lives. I sometimes feel like that rabbit on the battery commercial: He keeps on going and going and going.

I now see the emotional pain and turmoil as a blessing. It created a challenge and sensitivity in my soul that inspired my life and work. Only the inspiration did not occur immediately. It took a significant amount of self searching and struggle before I began to see that anything positive could come from such a traumatic occurrence. When I changed my attitude I was able to grow from the many painful, unique, and some extraordinary experiences.

I now favor two basic rehabilitation philosophies, psychosocial rehabilitation and constructive living. Psychosocial rehabilitation is a hybred ecletic blend of various therapuetic s. Constructive living was brought to this country by David Reynolds. I have learned I can't control my feelings or anyone else's. I can only choose my behavior. I hope over the next few years to gain a better understanding of public policy around disability issues and to really contribute to society

Today, I am extremely excited about the potential for our profession. I am honored to be Certified Rehabilitation Counselor. I believe our profession can and will play a key roll in the success and transformation of American society from a reactive/compulsive co-dependent consciousness to a proactive interdependent integrity based mindset. The ADA was an initiative that leveled the field in 1991. There is still alot of work. I believe that rehabilitation professional can be a significant facilitator of this societal transformation. Patricia Deegan, William Anthony, John Lui, Tony Cohelo and others are the current leaders. The global family is at our finger tips. I leave you with an anonymous poem I have saved for years. I believe it reflects a helpful mindset of many progressive clergy, social workers, psychologists, doctors, healers, rehabilitation counselors, business leaders and community minded thinkers:

We are the people makers,

We smile, they come alive,

We frown they hide their faces.

We hurl belief at them,

They come forth from the dungeons

and succeed.

I have been contemplating a book based on this story but wonder if it would be an interesting read. I welcome your stories as well. Do you think this is worth a book? would you read such a book? Send me an email with your thoughts and your stories. scrate@adelphia.net

"Feed My Sheep"

"Feed my sheep." The voice spoke to Karen in a direct and compelling manner. She was used to paying attention to voices. She had heard her first voice at the age of seventeen. That voice had commanded her to cover her body with lighter fluid and put a match to it. The scars that cover her body from the incident are minor compared to the scars she carries inside.

Karen Evans has been labeled with schizophrenia, though doesn't agree with the use of labeling. While she believes that some of her mental health issues may be inherited, she has no doubt that her environment is equally responsible. By the time she graduated from high school, she had attended 27 different schools. Her father was in the army, and often gone for long periods of time. Her mother, sick with depression over a younger child she had felt forced to put up for adoption, could no longer care for Karen or her twin sister. There was never any bonding, and often, there was desertion and abandonment. Karen spent her youth shuffling between relatives' homes, foster homes and orphanages. The abuse, physical, sexual and mental, that each new placement brought, never ended. In her late teens, when the voices began, she was placed in a number of state mental institutions.

"The horrors that then accompanied placement in state mental institutions were real. Patients were beaten, molested, and never told what had happened to the people who often just 'disappeared' over night. I was terrified of these places, and took to escaping whenever I had a chance."

Karen's last escape was from the Maine Insane Hospital (today's AMHI). She took the only job she thought she could do without getting caught, and entered the world's oldest profession. Falling in love with one of her customers led to a marriage with a man who constantly beat her. Fortunately, her love for her three children fathered by this man kept her from killing herself. One day, she simply packed them up, and deposited her family on a bench in Lincoln Park, not far from City Hall, hoping someone would heed her cries for help.

This final act of depression became the catalyst for change. First, the women's crisis center that took her in offered her a position helping other women in situations like hers. There, she was encouraged to go back to school and obtain a degree. A chance encounter with a local church led to a growing connection with a spiritual side of herself that had never been nurtured. For the first time, Karen began to hear voices that were not destructive in nature.

When the voices kept saying, "Feed my sheep" would give her no rest, Karen opened the Wayside Evening Soup Kitchen in Portland. Serving the city's homeless and poor put Karen in touch with other unmet needs of these forgotten citizens. In 1987, she established "Tent City" in front of City Hall, and camped out for three weeks with other homeless people. As a result, officials finally realized the need to establish a shelter system in Portland.

Today, Karen is considered one of the most respected advocates for the needs of those with mental health issues and the poor in our state. She continues to receive services and support for her own illness, and has gone from being a client to a Peer Specialist for Catholic Charities Maine Support & Recovery Services. Her work involves speaking in the community, developing services, and working with mental health clients to fully integrate them into the community. She sits on the Quality Improvement Council of AMHI, a place she had escaped from years before. Most recently, she has become involved with the Maine Cemetery Project, a way to honor the lives of those who died and were buried nameless at Maine's mental institution.

"I am passionate about issues I have experienced - abuse, poverty, hunger, mental illness, and homelessness. I know that if I work for change, others won't have to live the life I did. Most importantly, I know the power of forgiveness. By forgiving, I have been able to become my brother's keeper."

For many years, Leroy was a welder who worked in a snowplow factory. Then came the day, when all of a sudden, everything in his daily routine seemed to be overwhelming�depression set in. Leroy approached the Maine Department of Vocational Rehabilitation (VR), in 1992, and sought help on finding a new direction in his life. VR and others worked with him to stabilize the depression. VR also assisted in creating a plan that would help Leroy become a lobster fisherman with a small boat of his own, along with a small grant to buy an outboard motor for the boat. But just as the business was starting to materialize, his eyesight began to fail; he occasionally saw blurry images and knew something was wrong.

An appointment with a local optometrist was made to find out what was happening. The doctor, who basically fits people with eyeglasses, told him he had a condition called Angioid Streaks, and that he should see an opthalmologist, immediately. The opthalmologist stated that the problem was attributed to something altogether different than Angioid Streaks and not serious. So, Leroy just went about his daily routine for several months, until he started see black holes in his vision.

Leroy was notably very concerned. Having been diagnosed by the local opthalmologist, who did nothing to address the symptoms, he decided to go to the Veteran�s Administration hospital in Togus, Maine, where he was subsequently diagnosed with Angioid Streaks. Within a year, it was decided that laser surgery was the only option that would stop the progression of hemorrhaging, which was causing degeneration and more sight loss. But, the trade-off was that he became legally blind as a result of the operation; only able to see shadows, and only with powerful magnifying accessories.

As we talk Leroy is quick to point out an interesting observation: Had the first diagnosis, by Leroy�s local opthamologist been correct, perhaps the immediate intervention of laser surgery would have allowed less vision loss than 20/200. He said it�s too late to seek legal recourse, now.

A new way of life was in the making. By 1995, Leroy was enrolled in a 3-month training program at Eastern Medical Center in West Haven, Connecticut, a facility that taught him new skills in mobility, Braille, and so on. He worked closely with a counselor from the Maine Division of the Blind and Visually Impaired (now called The Iris Network). VR was also there to help him become employed. What did Leroy want to do for work? He wanted to go lobstering in his boat. Sound impossible for someone who has 1/10 of the vision capability as a "normal" person? Not at all.

For the next 3 years, Leroy went lobstering in his small outboard boat. His son would go with him and steer the boat and run the machinery. Leroy would "bait" the bait-bags that enticed the lobsters to crawl into the lobster "pots." He would handle the rope and help with chores that he could perform. In the winter he would work on lobster gear, building traps and painting buoys. A trap would take 16 hours to build; a sighted person could build one in an hour.

I�m offered a cup of coffee. Leroy maneuvers smoothly over to the counter and then to the microwave. He points out to me that he can tell how hot the coffee is by using his finger, but because he has company, he will use a device that he inserts into the cup, which will beep if the temperature is just right.

At this point in the interview, it�s obvious that the attitude and integrity which this man possesses is beyond comprehension for me; he shows no anger or frustration with the events that have transpired in the past few years since his diagnosis. I tell him his strength is commendable. He quickly points out that, "it belongs to the Lord; he�s the one that�s helped me, along with many other people. I�m here to show other�s that Life goes on; you can still do things."

There appears to be a warm and tight support system in Leroy�s family, as I talk with his wife, Pam. They don�t brag about it�it�s obvious. Support must be a big "piece of the puzzle," I would estimate.

In 1998, Leroy�s son was unable to continue with his father�s lobstering business. Leroy didn�t have anyone else he wanted to work with him. Now the time came to make more changes�back to VR for talks on devising a plan of action.

VR was approached with Leroy�s idea to start a woodworking business. Of course, The Iris Network is participating in this new effort, as well. The plan is approved; a small grant to help purchase some of the material and equipment was provided. By the end of 1998, Leroy has a small 12�x16� building, equipped with tools and machinery, in his front yard.

When I entered his shop, he hands me a business card that reads: "Hands On Wood," the name of his business. I get the grand tour of his one-room shop. I quickly notice how bright the lighting is to my eyes, the fluorescent lighting and the white floor and walls made everything stand out vividly. Leroy needs to have special lighting to see the shadows, which in turn, will enable him to do his woodworking; the white gives contrast to enable him to distinguish shadows.

His techniques to measure and cut the cedar wood are ingenious. He gives me a sample of how jigs and "click" measures work. Yet he doesn�t tell me too many trade secrets.

He started up a saw. I cringed as the machine spun thousands of revolutions per minute. He peered through a magnifier lens mounted inches from the saw�this was how he worked�in a very structured environment, with a great deal of concentration and caution. I guess I was underestimating his own capacity to do his work�he showed me differently, real soon, that he is quite skilled at the tasks.

Leroy has a great capacity to memorize the location of tools and how many steps to this and to that location in the shop; he has a method that is meticulous and in rhythm. And his products have to be at a high standard for him to sell them to people. He explains, as he rubs his hand and fingers over a rough spot in the buoy, " I can�t let this one go out of the shop until I�m sure that it feels just right, then I know the customer will be happy."

The products he manufactures are Maine cedar lobster buoy birdhouses and bird feeders, lobster buoys, and a lobster buoy with a flush, round brass thermometer. He also has these products in kit form, so one can paint them the color of their liking. The birdhouses have a special "spindle release" clean-out feature. These products come in various colors and sizes; some have decals of birds or lighthouses on them, and are very impressive to look at. Prices range from $20-$30; shipping is extra, at about $6 for each buoy.

Marketing is not Leroy�s forte, but he does "plug" away at it; "buoys get shipped all around the place," he says. During the month of August, Leroy attends the annual Maine Lobster Festival in Rockland, Maine. This has been helpful for him to promote his buoys and gain customers. The festival organizers told him that his display of buoys is the most colorful and well-thought-out exhibit in the exhibition tent. Leroy says this with pride.

His small business is typical: feast or famine, up and down. Yet, the momentum is in place for him; he is satisfied and content in his work. He labors hard building up stock for the summer, and then tries to keep pace with the summer demand. On a good day he can produce 3 buoys.

Speaking of rich: A man approached him one day and said that he had a market, overseas, for Leroy�s products, and that Leroy could make lots of money. Leroy let the man take two of his "top-end" products, to gather sales leads�that was the last time the clever individual was ever seen. He said he has learned his lesson.

In his spare time, Leroy plays the guitar; he�s done that sine he was 12 years old. He gets together with his friends on a Saturday night to do some "jammin'." Country music is his favorite. Leroy is quite fond of dancing out in public with his wife, too.

And when he�s not working in the shop, he does house chores, like washing dishes and the floors. He says, " I get fired from the job by the wife, if I make too many mistakes, now and then." He says he mows the lawn, too: "It use to take me an hour and 15 minutes to mow this big lawn; now it takes 5 hours, and I pull the lawn mower behind me to be safe." "I can�t stand to be doing nothing all day," he states with passion.

In closing my interview with Leroy, I ask him if he ever has experienced discrimination. He told about the time that he went to cast his vote at the town hall. A man around 60 years of age asked Leroy if he needed help with his ballot. The tone of the man�s voice, and his cruel laugh, was pure ridicule�nothing less, Leroy reveals. Leroy was outraged and hurt. "Ignorant," he said; "some people are ignorant."

Another issue that comes up is prejudice: He says, "some people worry about why I should have the can work and still receive Social Security Disability benefits." Why is that, I ask. He told me, "there are people in the world who think you should only get help from the government if you are totally blind."

MEET STEVE HOAD

Hello my name is Joanne Kelsey and I live in Winslow,Maine. I am mentally disabled.

Yes, I have a severe mental disability. My disability is invisible to people and sometimes not recognized as a disability. With this disability it is hard sometimes for me to be around people, so I isolate myself. Mental disabilities as well as physical disabilities can be very debilitating.

As with people with physical disabilities, I have had to have help from case workers and nurses. I have been in and out of the hospital, of which I don't enjoy. Right now I am on medications to keep my disability stable. I have not been in the hospital for quite some time and for that I am very happy with myself, it's like I have achieved my goal of staying out of the hospital as much as I can.

There were times that I said to myself there is nothing wrong with me because I am not physically handicapped, but I am handicapped. I would like to encourage myself and others with this disability to take your meds and go to your doctor and stay with your case worker, to keep yourself steady.

By Russell Anderson
With A Little Help From Some Friends

Stephen Michaud is a strong 16-year old man who lives just a few miles inland from the rocky coast of Maine, in the small town of Warren. At six feet in height, and weighing a couple hundred pounds, it's understandable why he has always assured his mother that he would be a professional football player someday. Stephen began to work on that goal early on, playing Little League and Babe Ruth baseball, Pee Wee and junior high school football, and more recently, wrestling at the high school level.

On December 19, 2001, during a home wrestling match at Medomak Valley High School in Waldoboro, Maine, Stephen received a life-altering injury. While placing a "bear hug-hold" on his opponent, they both went down; Stephen taking the combined weight and force on his head; the fifth vertebrae in his neck breaking. Yet at that moment, Stephen knew only that he had suffered an injury to his neck. Stephen alerted his opponent that he had been hurt and neither one of them should move. For about 15 minutes, they both assumed their mutual position on the mat, making every effort to prevent further injury from any movement of their bodies. When the paramedics arrived, the two wrestlers were told that they had made exactly the right choice by not moving; if they had, Stephen's injury may have been made worse.

The ambulance took Stephen to Penobscot Bay Medical Center in Rockport, Maine, where doctors evaluated why Stephen couldn't move his hands, arms and legs. Within minutes, a helicopter arrived to airlift the young man to Eastern Maine Medical Center in Bangor, ME. Due to swelling around the injured neck and bruised spinal cord, it was critical that he have highly trained specialists treat his broken neck and stabilize the swelling as quickly as possible, in an effort to prepare for surgery -- hopefully preventing total paralysis from the neck down. Even though the swelling in his neck was still excessive, surgery was performed, taking a piece of bone from Stephen's hip and placing it in his neck, allowing his body to fuse the broken vertebrae. A protective titanium plate was attached to his spine with five screws holding it securely, permanently. After surgery, the doctor informed Stephen's mother that he would be totally paralyzed from the accident.

The next few days were filled with many emotions as the entire family began visiting, hesitantly adjusting to Stephen's condition while he remained in the intensive care unit. His mother would feed him; she turned pages in a book while he read; and work at other small steps that were the beginning of a new journey. There were down times of hopelessness, but eventually, hope took over where anger, guilt and fear once lived.

Within three weeks, signs began to show his nervous system might regain its function. One day Stephen realized could move his arms. A new plan was made to begin physical therapy two times a day. A small victory!

All of a sudden, a setback occurred: blood clots formed in his body. Two weeks were lost before any more therapy sessions could be done.

The nurses, therapists and doctors were dedicated to Stephen's recovery; new and creative techniques were used to help him do his physical therapy. But, the pain he had to endure, just to begin the effort, was saddening to watch.

Stephen had determination on his side, and it paid off after two and a half months; he would gain partial use of his right arm and hand; some in his left shoulder and arm. His balance was difficult to maintain in the wheelchair; his back muscles weren't functioning below his shoulders, leaving him to fall if not secured while sitting. Yet, it was time for Stephen to go home and adjust to a new routine knowing that the prognosis for regaining his motor skills was said to be a 50-50 chance.

Stephen and his pal, "Scooby."

Unfortunately, the school where the accident happened does not carry insurance coverage for sporting events. This created an instant financial crisis for the family from day one. None-the-less, hospital social workers had promptly assisted the family in locating medical resources and planning for Stephen's rehabilitation needs.

Family and neighbors recognized the tremendous needs of this young man from the very beginning: Suppers were held; donations were given; and a handful of other benefit events occurred through the direction of Stephen's aunt. The financial help received was a generous gesture to Stephen and his family, who are without the financial means and resources to pay for the expense of this crisis situation. The many trips to Bangor, the stays at the hospital with Stephen, the care at home for other family members; not to mention the ongoing, massive debt caused by the accident; these were all an enormous, monumental expense.

A pen is used to type on the keyboard.

The first public program to take effect was Medicaid, covering most of the hospital bills and a custom-made wheelchair. Somewhere in the process there was a bill for a $6,000.00 helicopter airlift, and a many more uncovered expenses. After three months, the challenge of locating public programs that would address the many needs of Stephen's rehabilitation still appeared to be a maze of doors to go through. There hadn't been any one central contact, or agency, to provide guidance and direction to issues such as the unforeseen special transportation need, and accessible housing modifications. A learn-as-you-go scenario�

How would the family transport Stephen to Bangor for therapy and evaluations? How could accessibility barriers be removed from their 15-year old mobile home?

Recently, the local community transportation provider indicated that it did not have the capacity to transport Stephen to Bangor, ME for therapy. After some research, it was revealed that there were, in fact, lift-vans in the fleet. Service was provided, but only as a result of a call to Maine's legal service provider for low-income people, Pine Tree Legal Assistance. Additionally, according to an accessibility inspector, their older mobile home could not be modified satisfactorily due to the poor condition of the floors, etc.

There are ways to get around issues�. Thanks to the combined efforts of the local community there were enough funds raised to place a down-payment on a new handicap accessible mobile home; the balance due being financed by the family.

Finding a van that was affordable was another issue. Alpha One, a Maine organization assisting people living with disabilities, was a possible source of funding and did have, in their possession, a $17,000.00 modified lift-van for sale. It was soon discovered that there are no programs that allow low-income families, facing a crisis, a grant to buy a van. An Adaptive Equipment Loan program though Alpha One would enable financing; however, with the added expense of a monthly mortgage payment for the new double-wide mobile home, the family resources to pay for such a vehicle were inadequate. A solution to this challenge was an $1,800.00, older, used van, purchased with the remainder of the proceeds of community fundraising. The problem of how to get Stephen into the van was easily solved buy placing a set of low-cost automotive ramps on the edge of the van.

Stephen and "some" friends.

Stephen uses a cuff to hold eating utensils and to hold a pen to depress his computer keyboard keys. Watching him type is humbling, as he types faster than the author of this article does! His balanced is maintained in the wheelchair by throwing his left arm over the handgrip in back of him. Then the computer "locks up"! No frustration shown, Stephen displays patience and shuts the finicky computer off and starts all over again.

His gentle and courageous style is noted as he explains how upbeat he is about working hard to regain the use of his body. He is proud to demonstrate that advances are being achieved, as he wiggles the toes of one foot, just a little.

This young man has many friends who come to visit him. His coach visits him often, and he gets out to events at the high school where he is recognized publicly with great applause. And there are a couple of other pals he loves, his dogs, Scotty and Bubo.

Stephen's sister is a friend who is always ready to help and keep him in his place. The maternal grandparent's are strong, loving supporters of their grandson; and always ready to help. Unfortunately, the grandfather has very recently had open-heart surgery performed. But he's there, if needed.

The family's new routine is becoming more familiar. Most often, there is not much idle time around the home. There are the daily tasks of scheduling, planning, educating, being educated, giving medications, traveling to appointments, networking with different public agencies and health care providers, and much more.

Ironically, Stephen's mother has a physical disability herself; however, she does her remarkable best in her new, expanded role as a caregiver and mother. She is determined to do the best she can to help her son complete high school and then move on to pursue additional education afterwards, as one would expect to be done for any typical young person.

Asking Stephen's mother about the challenges facing her, she reveals that the vast expense being incurred by Medicaid and other public service providers is something that has aided the family tremendously. Yet, she humbly admits that she could never pay back what has been afforded them. Inquiring about which step of the process of this unfortunate turn in life may have been made easier, she states that she would like to see a public program, whereby the costs of the mobile home and a newer, more reliable, accessible van could have been combined into a mortgage loan, perhaps as an emergency disability loan of sorts. She has no problem paying over time; it's the interest fees associated with having two separate monthly loan payments, that makes financing impossible for low-income families. But those challenges are all secondary to Stephen's rehabilitation. No matter how bumpy, or long, the road ahead may be.

AbilityMaine: Maine People

MEET GARY AUBE

Determined to Face Adversity Together

By
Susan & Bliss

"Feed My Sheep"

MEET STEVE HOAD

Joanne Kelsey

Wrestling For Resources

PAUL WILLEY

Virtually, We Are All Equal

AbilityMaine: Maine People

MEET GARY AUBE

Determined to Face Adversity Together

By Susan & Bliss

"Feed My Sheep"

MEET STEVE HOAD

Joanne Kelsey

Wrestling For Resources

PAUL WILLEY

Virtually, We Are All Equal

By
Susan & Bliss