WINGS A FAITHLETTER FOR, BY AND ABOUT UNITED METHODISTS WITH DISABILITIES AND THOSE WHO CARE ABOUT THEM Winter 2001—Vol. 11, Issue 3, No. 43 Those who wait upon the LORD shall renew their strength, they shall mount up with wings like eagles.... Isaiah 40:31 [nrsv] FROM WHERE I SIT: BATTERIES AND BECAUSE By Jo D'Archangelis I back out of the van on to the wheelchair lift and am slowly lowered to the ground. I roll back off the lift, turn and travel a few feet, then stop. "No?" my mother asks. "No," I answer. She loosens the belts on the power chair, shifts her shoulder bag out of the way, and begins pushing 275 pounds of me and chair toward the church entrance. Somebody calls out, "Batteries give out?" "Nope," I smile and say, "not the batteries—me." It has gotten so that I cannot manipulate the control of my power chair for more than a few minutes before my thumb "gives out" and someone else has to provide the "push" manually. I cannot laboriously coax out more than a few lines of text on the computer keyboard before I must stop and rest a minute before continuing. I cannot...well, the list seems to grow daily. I should be used to this. After all, I have what is referred to medically as a "progressive" neurological condition, which simply means the older I get, the weaker I get (what this has to do with "progress" escapes me, but then I'm not a doctor). And I've been "progressing" for years and years, since I was 10-months-old and my mother first noticed I had trouble pulling myself up in my crib. But I'm not used to it. Oh yes, I could cope with it pretty well when I was younger. The decline in strength then was fairly gradual, and the adaptations I was forced to make were little by little over a period of time. Then too the periods of weakening were blessedly interspersed with what we called "plateaus," long periods, often years in length, when the "progression" came to a halt, at least temporarily. Now the weakening seems to be accelerating at a rate approaching that of the velocity of light. I used to look back 10, 15, 20 years and wonder at all I could do then. Now I look back with nostalgic yearning to the "good old days" of a week ago when I could lift a small plastic cup of milk to my mouth without assistance. As a friend who is about my age and also "progressing" recently observed, we no longer "plateau," we "valley." I've always believed it was easier to grow up with a disability than to become disabled later in life. Not that growing up with a disability is a piece of cake. Far from it. It's just that, comparatively speaking, becoming disabled in adulthood seemed to me to be more traumatizing and thus harder to work through. Adults are less flexible in regard to change than are children and young people; careers, marriages, families—just started on or well into—are often sidetracked, if not dislocated; and debilitating grief and anger seem to arise more naturally from losing something you once had than from lacking something you never had in the first place. Now I am in the unenviable position of being able to test out this hypothesis in my own life as I have not only grown up disabled but am also at this point suddenly experiencing greater, more severe incapacitation, just as though I were newly disabled. And you know what? I was right! It's much harder to work through this stuff as an aging adult than when I was younger. I have never before been so fully and clearly conscious that I am disabled. I mourn with tears and anger and expletives undeleted for what I once was and never was. Future plans and many current activities are put on indefinite hold. Most of all, I fear that soon my "valleys" will precipitously erode into deep, smooth-walled "canyons" where light cannot penetrate to the bottom. "God," I plead, "why don't you do something?" "Because..." "Oka-ay...well then, what is it that you want me to do?" "This." So I'll do what I can do until I can't do it any more, and then...I won't. I'll laugh, cry, curse, pray, ask for more help, read the Bible, go to church, and watch movie videos. I'll write a little and think a lot. And every morning I'll continue to haul my atrophied behind out of bed—or more precisely, have someone else haul it out for me. Why? I keep asking myself. Because... INVITATION TO ALL READERS Those of you who have ever been to the Earl Miller Spiritual Life Disability Retreat, or would like to attend the EMSLDR, or have absolutely no interest in the EMSLDR but would like to have a great time with United Methodists With Disabilities (UMWDs) and their families and friends (FUMWDs), are cordially invited to the... UMWD/FUMWD Luncheon And Disability Retreat Reunion Special Guest Speaker: Reverend Thomas Reinhart-Marean "Dealing With Pain, Growing In Faith" Saturday, March 10, 2001, 12 noon-3 p.m. Bender Fellowship Hall, Fallbrook United Methodist Church 1844 Winterhaven Road, Fallbrook, California 92028 Telephone [760] 728-1472, E-Mail FUMC1887@tfb.com The catered luncheon will be served at no cost, but we need to know how many will be attending. RSVP Jo D’Archangelis by telephone, [760]723-2668, or e-mail, JODARLIS@aol.com, no later than March 7. UNINVITED, RELIGION AT MENTAL HEALTH CONFERENCE By Daniel R. Gangler Faith-based organizations weren’t invited to Tipper Gore’s conference on mental health [in 1999], but religion got mentioned all the same. Mrs. Gore, wife of [then] Vice President Al Gore, moderated the first-ever White House Conference on Mental Health, "Working for a Healthy America"...to inform Americans about mental illness, which affects more than 50 million Americans and countless more of their families and friends. "It is time to bring mental health care into the 21st century and end the stigma and discrimination that have for too long prevented people from seeking the treatment that can help them live healthy, productive lives," said Mrs. Gore. The [United Methodist] Review was informed through a letter from the Vice President’s office that "due to severe space limitations, we are unable to accommodate someone (from the faith community) at the Washington site." Marsha Scott, deputy assistant to President Clinton, in a letter invited "members of the faith community to visit the federal mental health website (www.mentalhealth.gov)" and asked them to participate by "joining one of the satellite sites or sponsoring one themselves." However, during the three-hour televised portions, a clinical psychologist and a parish nurse spoke about the role of religion in mental illness. Mr. Gore, a Southern Baptist, said, "Faith-based organizations have an important role to play in addressing this issue (of mental health)." He then introduced Sister Nancy Keo of the order of the Sacred Heart and a clinical psychologist in Washington. She said she had worked 20 years with people having mental illness in "religious issues" groups. She said the groups allowed people to share how their religious beliefs have supported them during their illness or how their beliefs created problems for them in their illness. Such messages can vary widely. Sr. Keo said: "Messages like you got mental illness because God is punishing you, or you’ve sinned" can be harmful to a person with a mental illness. However, she said, "When we try to connect with religious communities, we have to educate them because some religious messages communicate to people that if they had enough faith, they wouldn’t need to take medication, or if they found Jesus, they would have peace in their soul." She said these messages aren’t necessarily the case. "Religion can be a support to people, but it isn’t a substitute for what mental health treatment can provide for people." Commenting earlier in the teleconference about the role of faith-based organizations, Peggy White, a parish nurse at All Saints Catholic Church in Atlanta, Ga., said that the parish nurse is a ten-year-old nationwide movement now claiming 5,000 professional, clinically competent parish nurses who work with the medical needs of their congregations. She said, "Parish nurses need to educate and dispel the myths about mental illness." For more information, visit the Holston United Methodist Annual Conference's Mental Health Ministry Resource website, www.gbgm-umc.org/hcbcs or e-mail Pathways to Promise Ministry: pathways@inlink.com. Abridged from the United Methodist Review [June 25, 1999]. Gangler is Associate Editor. MENTAL ILLNESS AND RELIGION: TRUE OR FALSE Which of the following statements are true and which are false? 1. If you pray hard enough and get your relationship with God in order, you will have good mental health. 2. Young people cannot be mentally ill; they just go through mood swings. 3. Mental illness doesn't happen in a good Christian family. 4. Mental illness may happen to someone else, but it won't happen to me because I'm a believer. 5. Depression is part of life and can be resolved through prayer without medical treatment. 6. Mental illness is a personal failure, a sin. All of the above statements are FALSE. Mental illness can strike anyone regardless of race, sex, age or religion. One in five Americans suffers from some form of mental illness requiring medical or psychological AS WELL AS SPIRITUAL treatment at some point in their lives. Adapted from the United Methodist Review [June 25, 1999]. MERE TOLERANCE Advocating the mere tolerance of difference—is the grossest reformism. Difference must not be merely tolerated, but seen as a fund of necessary polarities between which our creativity can spark like a dialectic. Only then does the necessity for interdependence become unthreatening. Audre Lorde WORDS OF A STRANGER By Mary Cox-Bilz A stranger walked up to me one day and said, "I never see people like you out and about. It’s nice that you can enjoy life. I’m just sorry you’re crippled." Family and friends never make excuses for me. Neither does God. My life has been like being on a baseball team. The Lord is the manager, and I am one of the players. "You can do it! Step up to the plate and swing the bat!" God yells loud and clear. How my lips tremble! "God, I’ll fail. My arms are weak and deformed. Please don’t call me!" Those of you who have physical disabilities can relate to what I am saying. Maybe you are stricken with arthritis or migraines that take you to the end of your rope. But disabled or not we all share the crippling illness called "Disbelief." Out of money and the rent is due? Panic sets in. Cutbacks have included you. How will you ever make it? A son or daughter is not a believer and you’re too angry to pray? Here is a story of my struggle to believe in the faithfulness of God: In 1973 I registered as a student at Salisbury State University in Salisbury, Maryland. The university facilities were not wheelchair accessible. It did not make sense to be lifted up a long flight of steps in my motorized wheelchair to speak with the Dean. Why Salisbury State University? The idea of visiting this college had constantly nagged me from the time I began to think about furthering my education, and God did not let up. Every waking hour I knew he was telling me to call them for an appointment. Problems arose. The overpowering drive to see the Dean began to butt heads with fear and doubt. Questions like "Won’t you feel like an oddball, being a minority?" and "Who will hire you after you graduate?" invaded my mind and slowed my efforts. Friends, has this happened to you? Right before swinging the bat you take your eyes off God and focus on yourself? Anxiety stirred up trouble, and I postponed the call to the university. My sweaty hands got weak; I lost my grip on the bat and dropped it. I cried, "God? Where are you?" and "God has left me! I’m not going to make it." The Lord knew I would be born disabled. He had a plan. He hadn't left me; I just wasn’t listening. The circumstances I believed to be hopeless were not hopeless. My own foolish thinking had opened the door to imaginings that held no truth. I delayed progress, but God did not give up. I finally visited Salisbury State University. Eight weeks later the campus was made wheelchair-friendly. The Lord had made a way. His mighty work enabled me to become the first student to attend the school in a wheelchair. Good news spreads fast! Two additional students with the same needs joined me that year. All three of us graduated in four years with honors. Aren’t fear and doubt harmful? I still worry about anything I do not submit to God. Don’t you? Today let us give our disabled hands and feet to him. He will also take our feelings of inferiority, shame, and false pride. We want to get in on what God is doing in our lives and win the game. Remember my telling you about the stranger that felt sorry for me because I was disabled? I asked him to sit down and talk. But he said, "No! I don’t like to be around crippled people." Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or peril, or sword?...Nay, in all these things we are more than conquerors through Him that loved us. (Romans 8:35, 37 KJV) Adapted from The Midnight Herald (July/August 1999), original title "A Stranger Said" ©1999 by the author. Cox-Bilz is also author of Love, Aunt Alma (1999) and Your True Friend Always, Louisa (2000), White Oaks Creations, Inc. (www.whiteoakscreations.com.); Letters In My Casket, Ebooksonthenet Electronic Publications (www.booksonthe.net); and At The Gate Called Beautiful (March 2001), Cambridge Books. Cox-Bilz’s web page: www.reallygoodauthorsonline.com/MaryCoxBilz/. I DO NOT COMPREHEND I do not comprehend the How of it: The door, thought closed, stands open to walk through. Within the lamps of trust and peace are lit And cast their glow upon the sullen dew. Here trust declares to all that I am free To set for other hearts the songs I'd sing. I needn't covet gifts; there's given me A heart that knows from whom all blessings spring. Together we shall mend my doubting ways, And time at last will tell her little truth That life is more than just the wrack of days And dreams are not the captive pride of youth. And when the lamps of life and light burn low, Then faith and hope and trust will match their glow. Marie Lovell Perrott Perrot is vision-impaired and lives in La Mesa, Calif. YOU ARE THE BELOVED All I want to say to you is "You are the Beloved," and all I hope is that you can hear these words as spoken to you with all the tenderness and force that love can hold. My only desire is to make these words reverberate in every corner of your being—"You are the Beloved..." Self-rejection is the greatest enemy of the spiritual life because it contradicts the sacred voice that calls us the "Beloved." Being the Beloved expresses the core truth of our existence. We are the Beloved. We are intimately loved long before our parents, teachers, spouses, children and friends loved or wounded us. That's the truth of our lives. That's the truth I want you to claim for yourself. That's the truth spoken by the voice that says, "You are my Beloved." Henri J. Nouwen From Life of the Beloved (c) 1992 by Henri J. Nouwen, Crossroad Publishing Co., New York. ANGYAL'S GIFT By Rev. David Helms-Peyer His name is Angyal Suketurugy Bulshivek. I am not very sure that I can pronounce what I just wrote. But that is my problem, not his. He has problems of his own, at least from my limited perspective. Many of us [first] met Angyal on August 23, 1998. That was the Sunday some 30 members of the Western Jurisdiction of the United Methodist Congress of the Deaf attended our worship, the Sunday Kathy Black* was our guest preacher, the Sunday Angyal stood up during "Joys and Concerns" and told us through signing and interpretation that he [was] answering the call into the ministry to share the gospel of Jesus Christ with the family of God, including people like himself—people who were blind. And deaf. There he sat right in front of me as I sat facing the congregation during worship. While the choir was singing Peace, Be Still, Angyal did not miss a note, did not miss a word. Through the signing of touch, a woman, a sister in Christ, sitting next to Angyal silently "sang" the choir's beautiful presentation [into his hand]. Angyal’s body moved with the music [that] his soul felt more deeply than my ears permitted me. His face spilled over with the smile the choir’s music brought to him. At one point during the song, Angyal’s blind eyes...looked right [at] me with more grace and joy than I was prepared for. Who of us, after all, expects to experience such awe and wonder in worship? And I knew at that moment, through the blind eyes of Angyal, Jesus was looking into my eyes and into my soul and...as I looked back, I was looking into the face of Jesus Christ. Behind the [scratched lenses of] my glasses, my own eyes filled with tears, and by the grace of God I was able to claim that moment of music and...of a blind and deaf young man's receiving...the message of that song as a precious and sacred moment. My tears were tears of joy and surprise. Later over lunch, one of the members of the Congress of the Deaf told me how much she appreciated the fact that we had included the Holy Communion in the service. She told me that Communion is her favorite part of worship, that it means the world to one who cannot hear that God expresses love and mercy to people in ways that go beyond words—in the case of Communion, through loaf and cup. I had to agree with her. On this particular day I had at least two very special, sacramental moments. One, of course, was when it was my privilege and turn to receive Holy Communion. The other was when Angyal looked into my eyes with all of the goodness of Christ. *Kathy Black is a professor at Claremont School of Theology and active in deaf and disability ministry. Rev. Helms-Peyer is pastor of the Fremont United Methodist Church in Portland, Oregon. Adapted from the UMCD Western Jurisdiction News [February 1999] HONOR ROLL OF APPRECIATION We thank the following people or organizations whose gifts of time and/or money have made possible the publication and mailing of Wings: Margery Chapman Nellie Hong Linda Ahnell Jill Halley Alma Fullerton Dulcie Henwood Rose Heller Lucille Fleming Ruth Sciumbato Mary Klein Ruth Bechtel-Pierce Virginia Clark Nina Redmon Jim & Kay Weeks Pamela McPhee Lila Lanham Norm & Helen Stockwell A special debt of gratitude to: The San Diego District United Methodist Union (Dr. Emma Moore-Kochlacs, District Superintendent) and the Committee on Grants and Loans (Rev. Lanny Arrowsmith, Chairperson) for their generous financial assistance in obtaining a new computer system; to the Rev. Edward Hoffman for his encouragement and support during the application process; and to Dr. Ken Tittle and Rick Houston for providing much needed help in researching components, on-line ordering, and installation of the computer system. WINGS: A non-official, non-profit quarterly newsletter published for, by and about United Methodist adults with disabling conditions FOUNDER/EDITOR COMPUTER LAYOUT/GRAPHIC DESIGN: Jo D'Archangelis CORRESPONDENCE: Send all correspondence—including original writings, items from other sources, and changes of address—to Jo D'Archangelis, Editor, at MAILING ADDRESS: 592 West Ammunition Road, Apt. 1 Fallbrook, CA 92028 TELEPHONE/FAX: [760] 723-2668 (please call before faxing) E-MAIL: JODARLIS@aol.com E-WINGS: An e-mail version of Wings posted quarterly in unformatted text without graphics is available by contacting Jo D'Archangelis at JODARLIS@aol.com. WINGS WEBSITE: Selected articles from Wings issues 1995-98 may be found at www.satcom.net/mariposa/find_wings.html. DONATIONS: Most of the funding for Wings' publication and mailing comes from reader donations, so there are no subscription fees. If you think Wings is worth it, please make a check or money order payable to the "Fallbrook United Methodist Church" (or "FUMC") and mark it "Wings Newsletter." Mail it to the church address below. Basic Angel $6-$14 Major Angel $15-$24 Super Angel $25-$49 Mega Angel $50-$99 Awesome Angel $100 or more CHURCH ADDRESS: Fallbrook United Methodist Church 1844 Winterhaven Road Fallbrook, CA 92028 CHURCH TELEPHONE: [760] 728-1472 CHURCH FAX: [760] 728-7433 CHURCH E-MAIL: FUMC1887@tfb.com