Who Inspires Us

The goal of the Living Well With A Disability program is to open up opportunities; educate individuals of possibilities; and encourage both the youth and the mature, to know they too can rock climb, write a book, or do anything they put their mind to. We would like to share with you some of the stories that we've come across; the people that have made a difference in our lives, and continue to uplift others.

I Am a Surviver

I was diagnosed with MS in 1999. I could not believe it! I had no prior symptoms and to hear that you have MS was devastating. My sister was diagnosed a year prior and her symptoms got worse within months. I was at work and I started having numbness in my legs and starting getting dizzy. I went to the emergency room and they thought that I was having a stroke. They asked about my family history and I explained to them that my sister was diagnoised with MS. They gave me an MRI and some other test and the test revealed MS. It's funny here my sister was having severe symptoms and she was the one encouraging me to go on and told me I will survive. I am a surviver. About six months after I was diagnosed with MS, my son who was six at the time was diagnosed with Juvenile Arthritis. Once again no prior symptoms. Healthy and running a few days before and then pain and in a wheel chair for the next three years. Oh no this is not happening! Through prayer my son who is now fifteen and 5'11 is very healthy and does not need a wheel chair. Through physical therapy and prayer I now go to the gym at least three times a week. I am doing okay. I still have numbness and weakness on my right side and I listen to my body when it tells me I need to rest. My sister uses a cane now and is doing well also. I thank God everyday for my health and strength and also for being a survivor.

Gloria Jackson, Dauphin County, age 45

I Won’t Quit

I was in the Army and broke my legs and hands. Now, I use leg braces and a back brace when I try to walk. When I am not in my braces, I am confined to a wheel chair. I have so much pain in my legs and back with my hands I cry when I have my bad days. Well, I won’t give up and I won’t quit. As long as my family stand behind me and support me and keep me going.

Mark Ruby, age 44

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What Baby Steps Can Do

I was given a priceless gift 2 1/2 years ago when this out-of-work school teacher went looking for an adult literacy student. I was connected to a young woman (23) with cerebral palsy. At our first several meetings, Carrie had no idea what genre interested her; she had no confidence in her ability; and, no idea what she wanted to read about. During her first 'baby steps' attempts, she would struggle through maybe two or three paragraphs in an hour! After this went on for about two months, I suggested a visit to the library so that Carrie could find a book that she found personally interesting. Well, as of today, Carrie has read the complete ANNE OF GREEN GABLES series, the Laura Engalls Wilder series, has now started the new TWILIGHT series and she reads four or five pages in an hour! She started her own 'book club' at the group home where she lives and encourages her disabled friends to read! So, I went looking to help someone, and SURPRISE! I found this beautiful little package of inspiration!

Bev Slade, age 57, St. Louis

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Setting a New Goal and Accomplishing It

In September 2006, Lamont Warren's life changed. One minute he was playing pick up football with his friends, and the next, he was on his way to the hospital to learn he suffered from a spinal cord injury, causing the loss of mobility from his neck down. The doctors told Lamont he may not walk again.

Lamont listened to the doctors, but he was determined to prove them wrong. Those words weren't going to make him give up; instead, he decided he would fight through it to walk again. "It was another goal for me to accomplish," said Lamont. He wasn't sure who to turn to, but he didn't get depressed; instead, he took action.

It was in the hospital when Lamont first became familiar with The Center for Independent Living of Central PA (CILCP) and its services. United Cerebral Palsy (UCP) provided Lamont with a list of different agencies available to provide assistance and resources, and CILCP was one of them. Lamont contacted CILCP, and a CILCP specialist visited him in the hospital to educate him of the organization, its services and how Lamont could be a part of the organization.

Following the meeting at the hospital, Lamont began rehabilitation at Hershey Medical Center and started receiving attendant care services from CILCP. CILCP's attendant care services, now known as the personal assistance services, enable people with disabilities to remain in their home and receive assistance with performing daily living activities and participating in the community. The consumer/employee program provides Lamont with assistance around the house, getting his prescriptions filled, and other daily activities.

CILCP's community integration specialist, Jesse Swoyer also met with Lamont to learn more about his interests and goals. One of Lamont's goals was to become active again in the gym, but it was challenging due to the lack of accessibility with equipment in gyms. No sooner did Lamont express his hopes, and Jesse introduced him to the Living Well With A Disability Fitness Center. Lamont immediately became excited and wanted to be a consumer of the Fitness Center.

Today, Lamont, age 21, is actively working out in the Living Well With A Disability Fitness Center with Jesse, who's certified to instruct and train. Because of Lamont's devotion to the rehabilitation program and working out at the Fitness Center, he regained mobility, and continues to build his strength and balance. "I had to train my brain to move my body again. It was hard, but I kept pushing."

He visits the Fitness Center two times a week in addition to his rehabilitation program at Hershey Medical Center. Each visit he continues to grow stronger and reach his goal to walk again.

"When I got hurt, I looked at it as having another goal to accomplish. Any advice I can give to individuals with disabilities is to keep pushing; keep striving. You can't give up. Just because you have a disability doesn't mean life has to change. You have to work around your injury – life isn't over, " Lamont said.

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Nathan's Carry

Youth football is often filled with many exciting days for families and friends to gather and enjoy sunny afternoons and starry eyed kids as they play one of America's favorite pastimes. It was one of these beautiful days that I happened to be taking pictures of the days action between the Mechanicsburg Wildcat Pony's and the West Shore Vikings. It happened that the Wildcats were in control of the game and were winning handily. The coaches from both teams were in a constant state of substituting players in and out, yelling in directions, and calling the offensive and defensive plays. The referees were throwing the brightly colored yellow flags and patiently wading through every objection thrown their way. Parents on the sidelines chanted cheers with the cheerleaders and rooted for each of their perspective wide eyed gridiron kids. The day was as every day when it comes to local youth football in "anytown USA," filled with excitement.

As the game clock ticked down to its very last second and the parents began to stir with anticipation of its end, I noticed that one of our coaches walked onto the field to speak to the head referee. I wondered what he could be saying given the end of the game was only a few seconds away. The referee walked over to the opposing sideline to speak to their coach and proceeded back onto the field to finish the game. As the last second ticked off of the clock, I prepared my camera for the next game of the day, when I noticed the teams were not leaving the field. I then noticed a player jogging onto the field into the Wildcat backfield. I didn't see any flags on the field and the clock remained at zero, so I watched. Each team lined up for one last play, the play that would motivate me to write this story. Number "62," Nathan Cavanaugh was lined up in the half back position and was ready to take the hand off from the quarterback. I steadied my camera and began to snap as Nathan took the handoff and ran down the sidelines for a touchdown? The Viking defenders seemed to pursue, but didn't lay one hand on Nathan as he crossed the goal line for his first touchdown.

Nathan is no ordinary running back, in fact he doesn't even have a running back's number. Most days Nathan doesn't get in the game and hasn't, until this year, even played football. But this story, in my mind, is not really about football at all, it is a story of a young man who is overcoming his daily struggles to participate in an activity so many of us take for granted. Nathan suffers from a mild form of Autism called Aspergers. Autism affects 1 in 150 individuals and is often the cause for these kids being misunderstood by their peers and others. Some of the symptoms of Aspergers can be heightened sensitivity to noise and light, unusual facial expressions or postures and a dislike for changes in routine. As you can see these symptoms do not go hand in hand with football, but Nathan, with help from his parents and his coaches are finding ways to help him enjoy football. At the beginning of the year, Nathan came to his parents to ask if he could play football. Initially his mother was very hesitant with the idea, but after coaxing from Nathan and his dad, mom agreed to let Nathan become a football player for the Mechanicsburg Wildcats.

In a world with its share of negative headlines, Nathan's story and those who have helped to make Nathan's experience fun, is a story I felt was worth telling.

Today, Nathan has lost about 20 pounds, made new friends, and has enjoyed his new found place as a Wildcat. He enjoys watching the Steelers on TV with his dad and his favorite player is Hines Ward. You will often see Nathan on the sidelines following Coach Joe Russel in anticipation of his next chance to carry the pigskin for the Wildcats.

Mr. & Mrs. Cavanaugh wished to thank all of the Pony Wildcats players and the coaching staff for supporting their son.

"Hope is often found through the actions of others..."

Terry N Barr, CILCP Board Member

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Everett's injury hits home for former football player

By David Wenner of The Patriot-News, 09/14/07

It felt like a force was pushing up on his facemask. That's all Theo Braddy could feel as he lay face down on the football field with a broken neck. His head was the only part of his body that could sense contact with the ground. He felt nothing below his neck. He couldn't move. Braddy was a 15-year-old linebacker at a Georgia high school. His injury was similar to the one sustained last Sunday by NFL player Kevin Everett. Braddy never walked again.

Now 47, Braddy is executive director of The Center for Independent Living of Central Pennsylvania. He's married and has two children. He made peace with his injury long ago. But first he endured months of anguish.

Even now, with his personal experience and a master's degree in social work, he said he has little to offer someone who has just become paralyzed. He'd rather talk to them later, when they've stopped focusing on what they used to do and have begun focusing on what they can do. "During those first months, you don't want to hear anything from anybody," he says. "Eventually, you get to a place where you completely understand what the future holds. Then you decide whether you're going to give up or go on with your life."

Following the 1975 injury, Braddy was sent to a hospital in Augusta, Ga., an hour from his home. He was there for four months. After about two weeks, a doctor explained he was probably paralyzed. Actually, doctors thought he would die - if not from the injury, then from depression, says his sister, Annie Phillips of Harrisburg. But Braddy constantly thought of playing football and basketball again. It was a bleak and confusing time. He believed Hollywood images of people who "beat the odds." Family members prayed over him, telling him if he showed sufficient faith, he would walk.

Braddy, who didn't develop a strong faith until much later, felt guilty that he couldn't move a muscle. He was sent to a rehabilitation hospital, also far from home, where he spent a year. There, he met a therapist who made a world of difference, encouraging him and pushing him relentlessly. Braddy's mind was evolving, accepting new priorities and goals. He realized he had to focus on the mental aspects of life. An early goal was to feed himself, then to propel his own wheelchair. Eventually, he gained significant use of his arms. Braddy still has no movement below his chest or in his fingers.

Today, his time in the hospital before rehabilitation would be days, not months, says Dr. Jonas Sheehan, a neurosurgeon at Penn State Milton S. Hershey Medical Center. The major advancements involve techniques to minimize damage and deterioration in tissues surrounding an injured spinal cord, minimizing the amount of function that's lost permanently, Sheehan said. Surgeons can stabilize a damaged spine, rather than waiting for it to heal. That allows rehabilitation to begin shortly after injury, maximizing the return of function. But one thing that hasn't changed is doctors' ability to fix a damaged spinal cord. There's still no way to bridge the gap in a damaged section, Sheehan said. Buffalo Bills' reserve tight end Everett's doctors were encouraged this week that he was awake and breathing on his own and said it's possible he might someday walk.

Braddy returned to his mother's small home after the rehabilitation hospital. Braddy's father was dead. His mother, with two other sons at home, struggled to care for him. He went to a nursing home. It was his own decision, according to his sister. "He must have seen something in [his mother's] eyes, that she had worn herself," Phillips says. All the while, he and family members held out hope he might fully recover.

Phillips and another sister had moved to Harrisburg. In 1979, they brought him here, thinking he might receive better medical care and be cured. He went to the former Elizabethtown Crippled Children's Hospital, where he earned a high school equivalency diploma. Then he went to a state vocational facility for the disabled. He enrolled in Harrisburg Area Community College, then transferred to Edinboro University of Pennsylvania. He had a breakthrough at Edinboro, where he fell in with a group of students studying social work. They accepted and understood him. He recognized social work and advocacy as a worthy field in which he was highly capable. After graduation, he enrolled in Temple University, where he earned a master's degree. In his current job, one of his main focuses is helping people navigate what he calls the "maze of confusion" that confronts disabled people as they try to access various programs and figure out how to attain a high quality of life.

Because Braddy spent more than a year away from home following his injury, he lost contact with all of his friends except one, Albert Young. Young, who owns an auto repair shop in Georgia, believed for years his friend would walk again. A decade after the injury, he traveled to Pennsylvania and brought Braddy back to Georgia. He remembers helping Braddy bathe, and talking about how Braddy would walk again. Later that night, Braddy explained that, short of a medical breakthrough, he would never walk. Young felt a new admiration for his friend's courage. "That was really something to see. Sometimes we don't think these things make a difference until we're involved," he says.

Today, Braddy doesn't watch football. He saw Kevin Everett's injury on the news. It sent a bolt through him. He tells parents not to worry about their children playing football- such injuries are rare, resulting from an unlikely set of circumstances. He firmly believes a bright, productive future can await even a young athlete who sustains a damaged spine. Yet a part of him still yearns to walk and run. "I still have dreams where I'm playing basketball and football," he says. "I get sad sometimes when I wake up from a good dream like that."

Courtesy of PennLive.com

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Jeannette Lee’s Story – Why She’s Living So Well

My story is one of great length; however, I will share the most important parts. First, of all I've lived with Bi-polar mental illness for all of my adult life. The past 23 years, I've been in treatment for my mental illness. I've been clean from drugs and alcohol for the past 11 ½ years. This year my 20 year-old daughter graduated from the local community college, and my 14 year-old daughter was given several opportunities that will prepare her for her future. My son is 11, makes straight A's and works with his dad, who is my husband of 9 ½ years. I was also given the opportunity to raise his 2 daughters, who have moved out and on with their lives. Both of them are CNA's. One is a college student and one has a child. My husband is an Elder at a local Church. He also works at a Youth Program, where my daughter volunteers and my son attends after-school.

We all are happy and blessed. My life is full of stories, good and bad. However, I would like to tell you some of the reasons why we are all living so well. I used the resources that are available to me to get where I am today. I work as a Certified Peer Specialist for an organization that helps people with disabilities obtain and keep housing. This has changed my life. I facilitate groups and I use my experience in having a disability to be supportive to my peers. My children have watched me go from sitting at home to taking classes, getting a job, keeping it, and being supportive in their school activities. We all have benefited from my willingness to get the help that I need and use it to be a living example of what can be.

My personal quote, "If you do the next right thing, the next right thing will happen."

Jeannette Lee, age 43, Allegheny County

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The Sister’s Perspective on Autism

This essay is about a very sensitive event that occurred in the life of my family and subsequently my own when I was six years old. However, it actually began when I was five and my little brother (that this essay is primarily about) was two. In May of 1999 is when my parents noticed changes in my little brother, Rodney Delp Jr., affectionately known from birth as JR. He woke up one morning no longer able to speak. The rest of this essay is going to explain the events that unfolded from that point on and how those events have molded, not just me, but my family. The changes that occurred in our entire family have been blessings in some ways and trials in others.

In September of 1999, my little brother was evaluated by the staff at Poly Clinic Hospital’s early development center. The results were not good as he was diagnosed with global delays. Strangers began coming to our home in the weeks, months, and years that followed. Speech therapists, developmental therapists, and behavioral therapists were coming to our home three days a week. I was five then and didn’t understand, nor did I want these people in my home giving all of their attention to my little brother. For almost an entire year it was like this until the second evaluation came.

On August 29, 2000 my world and that of my families was rocked to its very foundation. My little brother, for whom I protected, loved, and spoke for after his loss of speech, was diagnosed with Autism. Autism is a spectrum of developmental issues that affect speech, imitation skills, ability to play with others, and to a lesser degree gross and fine motor skills. Autism for our family was a nightmare in the beginning that consisted of three-hour temper tantrums because JR could not communicate his wants and needs in an effective manner. He would also get aggressive towards my parents and me because of the frustration and confusion he was experiencing. Life for me got much harder as I felt very torn between the love I had for my little brother and the hate I held for this thing called autism.

My mother, knowing what autism was from personal experience, was totally floored as JR’s autism was so much different from what she had experienced. She told me just recently that the first thought that went through her mind was “I am going to lose my son.” Compared to what she had experienced, JR’s autism was mild but she thought he would get worse with time. Maybe it would have gotten worse, but with the proper early intervention, bio-medical therapies and educational programming, he has gotten better over time.

In the years since JR’s diagnosis, much has changed and most of these changes have been for the betterment of both JR and the healing of our family. JR is now ten-years old and goes to a school that specifically educates children who have autism. JR can communicate with us now using a system of pictures to build sentences. This has been progressing into a communication device of a computer nature where he presses the appropriate picture and the computer says the words for him. He is still for the most part without speech but understands everything that is said to him or said in his presence. The school has begun a reading program for him to see what he can read. Apparently, he has been reading for some time now. Every day is a new developmental milestone that although is severely delayed, it is being mastered. And in the long run does it matter when he learned to tie his shoes, or is it more important that he can tie his shoes?

So yes, the changes that occurred in our entire family have been blessings in some ways and trials in others. Nevertheless, as a whole I think we as a family and probably because we are, still a family have weathered the storms pretty well. Now we see more of the glorious sunsets that God has to offer as opposed to the tornado known as autism. My personal perspective has changed as well. I went from a self-centered child to one who likes working with people of all ages. So much that I volunteer two or three days a week at a local residential care facility for the elderly, and I baby sit my little brother for my parents, so they can have some alone time and go out occasionally. I have more understanding and compassion for the down trodden and the less than perfect of society. I have much less tolerance for those who make people feel down trodden and less than perfect.

So the question in our home for sometime after JR was diagnosed was “if we could go back in time what would we change?” The obvious answer then was that we would take JR’s autism away. Now, I don’t think any of us would take away the trials of autism. For the gifts resulting from it and from my brother are more real and important than the losses we experienced all those years ago.

Samantha Delp, age 14, Cumberland County

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My Journey of Recovery

I am very grateful for my journey of recovery. There have been many ups and downs, so I learn from the down times and rejoice more so when things are good. My faith plays an important role in my journey of recovery. Also, I am surrounded by many beautiful people, i.e. those I come in contact with at work, home and church. I enjoy my work as a peer specialist immensely - it is much more than a career, but a calling. I have been working in the mental health field for approximately twenty-two years. And I won a Courage To Come Back award in 1995 in the mental health category from the St. Francis Health Foundation. My studies at The Franciscan University of Steubenville focused primarily on Psychology and Theology. My master's degree at Duquesne was in community counseling. I love music in many venues: listening to it, singing it, playing it and writing songs. I like to watch movies from time to time. Walking with a friend is also enjoyable. I like to relax on my front porch. Prayer is essential for me; it gives me the strength and wisdom to continue on my path. When I am ill, a friend of mine calls me a wounded healer. The journey of recovery can be difficult and also rewarding. If you are struggling I say, hold on to hope, hang in there, be patient with yourself, be kind and gentle with yourself because you are of great worth. You are precious.

Deb Charochak, age 43, Allegheny County

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Marilee George’s Story - Living with Bipolar Illness

My name is Marilee George and I am a certified peer specialist working at a state hospital. I have been living with bipolar illness for thirty-two years. I am a very happy, well-adjusted person who enjoys working in a job where I can be of help to others.

Prior to age fifteen, I enjoyed a very active everyday life. I had friends, good grades, was very social and extremely creative. At the age of fifteen, I began noticing some changes that concerned me. I was feeling very nervous and anxious for no apparent reason and I began to have bouts of insomnia. I'd get a clean bill of health when I'd get check-ups and physicals. However, I was noticeably nervous in school and I was suddenly having difficulty grasping the class work. The other students, including those who I considered friends began to make fun of me, ostracize me, threaten me, and bully me. I was always getting teased and laughed at. I couldn't stand up for myself due to my nervousness and anxiety; I felt sick. I was exhausted from lack of sleep. My parents and sister didn't know what was wrong and neither did I. School was becoming unbearable with the harassment from peers. A few teachers tried to be helpful to me, but many teachers and school personnel allowed the other kids to mistreat me. I thought I deserved the mistreatment because my self-esteem was so low.

My parents transferred me to a Catholic school in my junior year. I liked the kids and they liked me. Then some of the kids from the other school told some of the kids from my new school a nasty, false rumor about me. I got very upset and when the kids saw this, they started making fun of me, too. At the end of the semester, the principal of the new school recommended that I go to a school that could "help kids with problems."

When I went to that school, there was a counselor there that I could talk to. I was put on medication by a psychiatrist. The medication calmed me down considerably. I was able to do well in my classes. The counselor told me that my parents' main complaint was that I kept things bottled up if something was bothering me. Since I was medicated, I was able to work on that issue.

I graduated and went to college. I had several setbacks in college and had to leave for treatment in a partial program. I invested in the partial program, and got a lot out of art therapy, music therapy, self-esteem and assertiveness training groups.

Finally, at age twenty-five, after my third hospitalization, I was diagnosed with bipolar illness. I went back to college after a new medication was tried and changed my major from education to social work. I got my B.S.W. and my M.S.W. degrees. I got work as a child psychotherapist. I also worked as a relay operator, placing calls for deaf customers. I've done numerous volunteer work and have taken many non-credit continuing education courses for fun. I write poetry, spend time with family and friends, and help other people diagnosed with mental illness as a certified peer specialist. I would like to be of help in eradicating stigma, which is the reason I am submitting this article. I wish to be an inspiration to the mentally ill and a role model to my nieces and nephew. Though I don't drive, I get out and around by walking, by bus, by cab and by carpooling. I own my own condo and have been living in the community for twenty-two years.

Nothing makes me happier than to hear a patient or consumer tell me that I give them hope or that they want to be a peer specialist "just like me."

Marilee George, age 47, Lackawanna County

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My Dreams

First, a little bit about me. I was diagnosed in November of 2006 with Bipolar Disorder and Panic Disorder. I had a very difficult time with the diagnosis because I realized that they are lifelong ailments. This means that I would have to manage these illnesses medically as well as deal with the stigma that accompanies these disorders. I am so fortunate, after seeing several doctors and therapists, that I was able to move into a psych rehabilitation program called Stepping Stones Clubhouse in Coatesville, PA.

The staff assisted me in arranging doctors, therapists, work coaches and other necessary services. I now receive services with three different agencies and I have been “stable” since January 2008. They have helped me realize what recovery really means and that it’s a journey that begins within me.

I now have dreams for the future which were non-existent at diagnosis. Sometimes I dream about grand experiences: safaris in Africa, visiting Australia, traveling the world or becoming rich and how I can change the world with my money. Sometimes I end up praying for the strength to get through one more day, another month or another year. I have to constantly change those thoughts into more productive thoughts as I go about my day which takes real effort sometimes. I have many dreams for the future and I am one of those people who usually remembers my dreams whether I want to or not. Dreams give me an outlet, a way to allow myself to express feelings I might not otherwise cognitively express. These include my hopes, my innermost fears, my desires and sometimes, anger.

As I reflect on my recovery, I realize that I have many dreams that can be achieved. My dreams have changed since my diagnosis, but they are my dreams none the less. Nobody can take those dreams unless I allow them to. I do dream of a day when individuals with mental illness such as myself, won’t have to worry about what people are thinking when applying for a job, in the community, or even in a relationship. I often ask myself if I am content and fulfilled, and living my life to the best of my ability, even with this illness. The answer is usually yes. I know with the support system I currently have, my answers are yes far more often than no.

Since my diagnosis I have moved into supported living, become a leader in the Stepping Stones program, continued counseling, both individual and group and made great personal strides. Allowing myself to receive help, working hard on my individual goals and advocating for me is not only crucial to my recovery, it also changes me. I am no longer a victim of circumstance, but an empowered individual. I am learning to feel good about myself and the things that I do, not because someone else says so, but because it is coming from within me. Recovery is a lifelong process, but I am now more educated and more prepared for the ride.

Lynn Ament, age 44

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Giving Up is Not in My Dictionary

It was a very cold morning on March 22, 1999. I remember it so vividly because that was the day my life changed forever. Most folks would say it changed for the worst, but I view it as a changing for the better. It was the very first landscaping job on the “Grand Opening” day of starting McGrath Landscaping that I fell from twenty feet up the ladder while pruning a storm-damaged branch of a Norway maple tree. I landed straight on top of my head leaving me paralyzed from the chest down.

After the Life Flight to Jefferson Hospital in Philadelphia, I had several operations ending up with a few titanium rods and screws holding my upper neck and head in place. After three months with a halo screwed to my head and neck, and three more months in rehab, I started to regain some functions in my hands and arms. I am a C-7 quadriplegic which is a high injury to the cervical discs in the neck where most upper function is affected and very limited. I have been blessed to have full function in both my arms and shoulders. Yes I do have daily struggles that most people take for granted, but if I let them get me down; my ship would have sunk years ago.

As a result of my accident, I am now restricted to a power wheelchair allowing me to go practically anywhere I want to, at least within reason, or not. I have been stuck several times in the mud wandering in places in the yard where I shouldn't go. But I do have AAA!

As I was growing up, my father and grandfather instilled into my head to “never give up whatever the task may be.” That saying has made me the person I am through all of the pains and struggles that I have faced in many of life's situations. So after I fell, I told myself in rehab that giving up was not an option in pursuing my goals and dreams. In addition, I have a wonderful wife and two boys just waiting to have “good ole” daddy home again.

After leaving Penn State in 1987 and pursuing a career in landscaping, I knew that physically getting back into the field of the physical parts of the Forestry profession was not an option anymore since my accident. So I started to design with a LandCad program by taking pictures of the landscape beds and downloading them on my laptop. After a year of designing off and on, the breakthrough of my life just opened up. I landed a position with the Commonwealth in the Bureau of Forestry now going on seven years. I drive to work each day and that independence has allowed me to reach new heights. I am also currently enrolled at Penn State’s World Campus taking online computer courses to further my career as an Environmental Land Use Planner. And the best part of my life is yet to come!

- Phil McGrath, age 45, Chester County

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Bethany’s Rules for Living

With multiple sclerosis, you really never know. Will I be in a wheelchair in five years? Or five months? Or never? Will my sight ever return in my right eye? Will my arms be unusable as leftover spaghetti or will I be able to do the dishes? Will I have enough energy to play with the kids? Or feed them? And will I remember these questions next week, or will cognitive dysfunction leave me in a fog?

The uncertainty really sucks, in addition to dealing with very real symptoms.

I never know what the future holds for me. But you never know what will happen to you, either, even though you have expectations. Both of us could be sitting in the ice cream shop choosing between black raspberry sorbet and mocha almond fudge when the ceiling could fall down on us. If we escaped the crash, we could be struck down by E. coli in the ice cream. The girl at the counter could have broken up with her boyfriend and decide to go on a violent, ice cream-slinging rampage. Or we could happily finish our ice cream and have an ice cream-induced coronary. We could avoid all these things and wind up run over by the ice cream truck. (Ice cream plays a central role in my philosophy- but we’ll get to that in a minute.)

So on one hand I know that I have a very real disease with an uncertain outcome. And I know that you, mythical reader, are completely healthy and perfect, with no guarantees either.

What I know also is that today is the most important day of my life. I can feel thankful and joyous to feel the earth under my feet, to see blue sky, to get a back rub. These things are important.

But the important thing is that I am AWARE of them. And I am aware of them because they were taken away. In this respect multiple sclerosis has been a huge gift to me.

In my pre-MS life, I was a much different person. I had the basic textbook traumatic upbringing, and all the baggage that goes with it. That baggage kept me terrified of everything- life, people, change, risk. I rarely went out, didn’t drive, didn’t work. I was frozen. I focused on all the things I didn’t have and all the terrible things that might happen. I complained all the time, waiting for things to be perfect, to be easy, to be as good as they had been bad, and to happen to me with just as little effort on my part.

When I got MS, everything changed. I couldn’t walk or talk (or smoke.) I spent a week with vertigo that wouldn’t go away. But one day, someone said, “You should find something to be thankful for.” I’m not sure who - maybe it was my imagination, but it was a good idea. I couldn’t feel thankful for all the usual stuff, you know - walking, talking, seeing, having a supportive family, sitting still in a chair that wasn’t tilting on its axis. I finally settled on one thing: I’m still breathing. “Thank you for my life today,” I said. And that changed everything. As I got better, I started saying it more.

And I started seeing that life wasn’t going to be perfect, but this life was all I had. I realized that I would probably always be awkward, un-fluent in the social skills many folks take for granted. I would probably always make mistakes and often look stupid. I would be frightened and uncertain.

But if this was all I had, I’d better use it. I’d better take the chance. Time wasn’t unlimited and amorphous anymore. It was a very concrete, finite item, and it would run out one day - or worse yet, roll on and on and on, giving me plenty of opportunity to regret.

Today my life is full of wonders and fascinations and miracles. And it’s full of bumps and bruises and mistakes, too. Today I work, I talk to people, I fall down, I drive. I do all the things that I thought I’d never do.

And today I have a chance to breathe in. And breathe out again.

This life. This chance - breathe in, breathe out, be thankful for each breath. To NOTICE. To be AWARE. To be alive, really alive, and not just waiting for life to start.

People often say, “I could never be like that. I’d be devastated if I had a terrible disease. I wouldn’t be able to stand it.” But you would, you know.

This is where the ice cream comes in. You are standing in a locked room with no idea when you are getting out. There is a table. And a chair. And a bowl of ice cream. Do you pound on the walls? Smash everything up? Sit down and cry? Ok. But your ice cream has melted in the mean time. And you’re still in that room.

I imagine you, mythical perfect reader, with well toned thighs and a well balanced life. I imagine you thinking, “Well, sure, she can be happy the sun comes up, but that’s just because she never had anything better. I could never be satisfied with that. My life is pretty good, and I REALLY have something to lose.”

Well yes, you do. We all do. But that’s the point. Do you really NOTICE what you have? Do you spend some time each day saying, “Hey, this being alive stuff is pretty cool”? Even if some of the things in your life are pretty awful are you using all the happiness resources that you have, or are you letting them melt while you bang your head against your expectations?

Do you ever actually notice the earth beneath your feet? Do you notice how beautiful all the small things in the world are? Do you realize how wonderful and miraculous it is to be able to throw your underwear in the washing machine and dryer? (Well, ok, maybe you had to have done your laundry in the bath tub to appreciate that particular miracle.)

No matter what you have, if you aren’t noticing it, fully experiencing it, engaging it, you might as well not have it. Notice it NOW. Do not pass go. Do not collect two hundred dollars. Go directly to your kids and smell their hair and give them a hug. Go directly to your computer and spend a little time thinking about the million billon gigabytes of information at your fingertips. Go directly to something that you love or used to love - a toy, a hobby, a dream…and jump in. The outcome doesn’t matter as much as the jump.

I truly think this is a huge gift. The ability to find joy in what you have. Mythical, perfect reader, are you joyous? Do you realize how important it is? I hope so.

Bethany’s rules for living:

  1. There is ALWAYS something to be thankful for. If you can’t find anything else, start with breathing. Breathe in. Thank you. Breathe out. Thank you. (If you are having trouble breathing, skip the thankfulness exercise and go to your nearest emergency room.)
  2. Never kill yourself while you are in a bad mood.
  3. There are simply no guarantees. For anyone. Ever. This is a good thing. It leaves a lot of room for miracles.
  4. No fair breaking the laws of physics. Everything else is open to interpretation. (Except if you are a theoretical mathematician, in which case the laws of physics don’t apply, either.)
  5. If you look closely enough, everything is beautiful.
  6. Every challenge has a gift in it for you.
  7. Never miss an opportunity to be loving. It can change the world.

– Bethany Altieri, age 39, Allegheny County

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My Struggles Have Made Me Strong

Entering high school was something that I had looked forward to when I was growing up. New classes, teachers, experiences, all with the comfort of having the same friends that I grew up with, I couldn't wait to be a part of it. From the beginning of sixth grade to now I wear a hearing aid in my left ear. I was used to explaining the system that I used to all of my teachers, and most knew what I used. A Frequency Modulated System (FM System), which I carried around with me. It has been many things through the years; from a box and headphones with a microphone, to what seemed to be a tape recorder with a boot that connected to my hearing aid.

Routine of going and getting my FM System was easy and nothing new to me. When 11th grade rolled around, I transferred from one school of 500 students, to a new school of about 1600. It was a big jump and something that I was excited and nervous to go through. I had to make new friends, find my way through a building I had rarely been in, and meet a new staff and a new hearing and speech teacher. What I came out with was pride of transferring, of being happy to have gone through it. It got me into college. Struggle has always a part of my life; it has made me strong, and determined in what I wanted to get out of life. That determination led me to find a good college and be happy with the choice.

After looking around and viewing colleges, it was boiled down to two colleges; Saint Vincent College in Latrobe and Mercyhurst College in Erie. Each college was good and it was a tough decision, but I ended up picking Saint Vincent College. I was happy, I had made it through high school and now I was finally off to college. I made one of my many goals. The staff is very accommodating and willing to help me get a good education and happy to help me if I run into any difficulties especially with my hearing.

I am now a junior at Saint Vincent and I am very happy. I still struggle through classes but somehow I keep the strength to keep going. I have more goals now that I am in college. I plan to go to Grad School once I graduate. I plan to find a good job and possibly keep up with PAID. PAID has been a really great impact in my life with going out and teaching children about different types of disabilities. I like making a difference in someone's life. To see that I truly have caught the interest of someone who then goes out to pursue more information about disabilities and to hear their first hand experience with seeing someone or interacting with someone with a disability. Even if it is talking among their friends and parents, I know I have made a difference.

Allissa Bowman, age 20, Westmoreland County

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Believing in Him Made All the Difference

This story was shared with us by a member of the community that has worked with youth with disabilities in other cities across the country.

About a month ago on a Saturday night my cell phone rings, I answer. The caller asks for me. I think I know who it is but I can’t be certain and ask, “Who is this, please?” He starts laughing a familiar laugh and says “you don’t know? I’ve fooled you!”

The caller was one of the first youth to go through a youth leadership program I led in another city a few years back. I don’t often tell his story; this young man is humbled by his life experiences and has often rejected the notion that he has done anything extraordinary; he seldom attributes his accomplishments to his own hard work and determination.

He has had a hard life and grew up in a culture where there was tremendous pressure to join a gang. Like so many of his relatives before him, he gave in to that pressure and joined in for a number of years. He was one of the “lucky” ones, though, as a result of gang violence, he was shot in the back, incurred a spinal cord injury and now uses a wheelchair. He did not see this as being “lucky” until at least a year later, but once things turned around his life would never be the same.

Regardless of his injury, he was on probation for a gang related crime. As a part of his probation, he was instructed to do community service and attend a leadership training for youth with disabilities at his local Center for Independent Living (CIL), which at first, he was less than thrilled about. Eventually, it seemed he wanted to be at the CIL even more frequently than his probation required. By the end of the 16 week program, he declared he wanted to be the next Justin Dart, Father of the ADA, and he asked if he could stay on to participate in the training again.

He started working for the CIL as the Youth Leadership Training Assistant, which meant he helped with everything and anything on the Youth Team. All the youth who went through the leadership program loved him; he was a mentor to youth with Down Syndrome, Autism, CP, Epilepsy, it just didn’t matter. He related to everyone because their issues were “across the board. “

Over the next two years, this young man completed his GED, started meeting with his minister, raised funds to have a new ramp built for his church, started volunteering at the local rehabilitation center on Saturdays. Overall, he became a very active member of his community. A few years ago he won the Diana Viet’s Young Leaders Award from the National Council on Independent Living and to say who the proudest person in the room was that night would be nearly impossible.

When he called that night, he wanted to share some great news. He received a full scholarship to college. Lately he’s been working as a youth counselor with high risk inner city kids, which primarily helps them to get out of gangs. He said believing in him made all the difference and he wanted to thank me but I told him that all I did was encourage him to believe in himself.

All I know is I am so glad he went to the trouble of finding my number.

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How are you Living Well With A Disability?

We want to know! Please share your story and let people know how you’ve accomplished a goal, dream – whatever it may be that makes you say, “I really am living well.” Submit your story today!

 

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