NeuroRehabilitation 20 (2005) 43–47 43IOS Press

Lightning Strike and Electric ShockSurvivors, International

Mary Ann Cooper∗ and Steve Marshburn

Abstract. Prior to1989 no known support group existed for victims of lightning or electrical shock injury and their families.A lightning strike survivor of twenty years, Steve Marshburn, recognized the need both from his personal experience andafter meeting two other survivors. With his wife and psychologist, he formed Lightning Strike and Electric Shock SurvivorsInternational. The organization has grown nearly one hundredfold from the thirteen who attended the first annual meeting. Thesupport group serves people from around the world, has produced a number of publications, participated in research about theseinjuries and has become active in prevention activities. This paper will describe some of the factors that have led to such successfor the organization.

Keywords: Support group, electrical injury, lightning injury, friends, leadership

1. Introduction

Prior to 1989, no specific support group existed forsurvivors of lightning and electric shock injury. SteveMarshburn, injured by lightning more than twenty yearsearlier in North Carolina, a state high in lightning in-juries [1], met other lightning injured individuals andcame to realize that they had similar experiences, clin-ical courses and sequelae to their injuries. Survivors ofinjury by man-made electricity appeared to have manycommonalities so Mr. Marshburn, his psychologist,Gerolf Engelstatter, PhD, and Steve’s wife Joyce de-cided to include them in the support group that they hadfounded. On February 22, 1989, Lightning Strike andElectric Shock Victims (LSESSI) was formed.

This paper will outline the history, development andaccomplishments of LSESSI and will also discuss im-portant aspects of support group formation, service,roles, transitions, and pitfalls during growth periods. Itis hoped that some of the lessons learned from LSES-SI’s growth and development might be used by supportgroups for other neurological conditions.

∗Address for correspondence: Mary Ann Cooper, MD, Profes-sor, Department of Emergency Medicine, University of Illinois @Chicago, M/C 724, 471 CME, 808 South Wood St., Chicago, IL60612-7354, USA. Tel.: +1 312 413 7489; Fax: +1 312 413 0289;E-mail: macooper@uic. edu.

2. Support group formation

As has been alluded to in other articles in this is-sue, survivors of electric and lightning shock and theirfamilies have many common problems, not only fromthe physical standpoint but also from emotional, psy-chological, behavioral, and rehabilitative demands [2].These challenges can be daunting to the isolated sur-vivor and their family, particularly when they may alsosuffer changes in self esteem, loss of employment re-sulting in financial instability (including loss of theirhomes), learning disability, and chronic pain [3]. Forother illnesses and injuries, support groups often helpto take away part of the isolated feeling, answer ques-tions, and offer emotional support, reassuring them thatthey are not crazy and focusing them towards recov-ery [4]. It is also a means of networking survivors andfamilies to others with similar problems and questions.

Often one individual or family will begin the sup-port group, usually based on the needs they have foundthrough their own experience and from others with sim-ilar histories. Table 1 shows many of the factors thatmay be common to support group formation. LightningStrike and Electric Shock Victims was formed just onsuch a basis. The first annual meeting was held in June1991 at the Maggie Valley, NC, Holiday Inn. It wasattended by thirteen individuals and their families from

ISSN 1053-8135/05/$17.00 2005 – IOS Press and the authors. All rights reserved

44 M.A. Cooper and S. Marshburn / Lightning Strike and Electric Shock Survivors, International

Table 1Requirements for initial support group formation

Unified service population:Similar injuriesSimilar sequelaeCommon needs and goals

Perceived needDedication of founding member(s)

eight states, six with lightning injuries and seven withelectrical injuries. This meeting was attended by twophysicians, a psychologist, a physical therapist, manyof whom continued with the group and eventually be-came Board Members when a Board of Directors wasformed.

Support groups may also be started by physiciansor institutions that deal in the illness or injury. Theyoften have a different emphasis and may raise not onlythe appearance but reality of conflict of interest. Pro-fessionals, like family members, will have a learningcurve if they associate with support groups. Thesegroups have far different focuses and dynamics thanthe professional or social associations with which theprofessional may be familiar.

3. Outcome of the first meeting: The early years

Survivors of this injury often experience embarrass-ment, and tend to self-isolate and avoid new situations.A repeated theme among the attendees of the first meet-ing was their reluctance to attend the sessions oncethey had traveled to North Carolina. One from Floridarefused to leave his hotel room after arrival; another,also from Florida, ran out of gas making her husbanddrive back and forth in front of the hotel so many timesbefore she would get out of the car. The spouses ofthese individuals arranged a dinner together one nightso that the two were forced to meet and interact. Anolder Montana farmer, who has only missed one meet-ing since then, related sitting on a front entry rocker theday before the official meeting was to start and talkingto another survivor, also there early and in a rocker.As they found more and more shared experiences andsymptoms, the rockers rocked faster and faster and tearsbegan to stream down the cheeks of both of these men.They found the first people to validate the feelings andsymptoms they had each had for over a decade. Theattendees of the first meeting found understanding, ac-ceptance, support, and formed many friendships thatexist to this day.

It is with similar stories that LSESSI has continuedto grow and to help those who call or e-mail the or-

Table 2Administrative issues for support group stability and growth

Established mission, mission statementService to members perceived as helpfulFormation of board of directors and committeesIncorporation for protection of officers, Board and organizationassetsAppropriate use of professionals in a support network

Non-‘owners’Advisory vs controllingConflict of interestTo broaden knowledge of injuries

Resilience to growth phases and changes such as:Need for larger meeting spaceAcknowledgement of legal requirementsLeadership successionIncreased staff, budgetary and space needs as membership andservices grow

ganization. A few years after its foundation, LSESSIattendees voted to change its name from ‘Victims’ to‘Survivors’ so that the official name is Lightning Strikeand Electric Shock Survivors, International, Incorpo-rated. Also added were Bylaws, a Board of Directors(although only recently has the membership been inter-ested in electing Board members), incorporation and a501c3 tax status. Table 2 describes important businessissues in establishing a support group.

For the first several years,annual membership simplycost a book of postage stamps for postage for newslet-ters. For years after that, the dues were $6. The dueshave been raised to $25 for individuals with their fam-ilies or $35 if the household members also join. How-ever, no one has ever been dropped from the mem-bership for lack of payment. Prior to the formationof LSESSI and its minimal dues, Steve and his wifehad covered any expenses themselves. Unknown to theBoard for several more years, they continued to pay forthe telephone bills themselves as well.

4. Keys to success

Table 3 shows the current membership that has grownnearly one hundredfold from the original thirteen whoattended the first meeting [MSOffice1]and includes in-dividuals from several foreign countries as well. Al-though logs show that only about one in every threecallers actually join LSESSI, Mr. Marshburn points outthat brain injured people often do not remember to fol-low through with sending checks although several havecalled or joined years afterwards. Mailings go out ev-ery year to hundreds who inquire or request informa-tion regardless of whether they join. Table 4 documents

M.A. Cooper and S. Marshburn / Lightning Strike and Electric Shock Survivors, International 45

Table 3LSESSI Membership as of January 2004

Electric shock survivors: 357Lighting strike survivors: 355Family members: 377Professionals:

Medical (various): 40Legal 10Media: 5Educators: 3Meteorologists: 2Authors: 1V.A. Representative: 1

Deceased: 5Classification unavailable: 49Non victims: 43Total members: 1247

Table 4Services offered to members and nonmember survivors

Telephone and online support, newsletterReliability, availability, responsivenessInexpensive pertinent materials and services

Factual written materialNetworking to other membersReferral if appropriateVideos of annual meeting lecturesWebsite

Annual meetingWillingness to expand knowledge base, do research

many of the services and products that may be desirablefor a support group to offer or develop. LSESSI and theMarshburns see the business of LSESSI is to supportthe injured and their families, not to gain members. Thebudget of LSESSI has only recently exceeded $20,000due to increased technological requirements such ascomputers and other office equipment needed to sup-port a membership of over 1000 as well as increasedpostage.

Meeting registration has always been free for mem-bers with fees for professionals or media to attend. Atthe fifth annual meeting, one of the Board Membersstarted an endowment fund to serve as a source of fundsto partially defray the expenses of first time attendeeswho would not have been able to attend otherwise andfor other worthwhile causes as deemed by the Board ofDirectors. The same member funded a challenge grantof $10,000 for the tenth meeting and succeeded in con-vincing another professional to participate, resulting ina 2:1 match for the endowment fund which more thandoubled it. The endowment fund has begun to receiveregular contributions from some members who havebecome more financially stable. Another professionalpartially supported the office expenses for several years.Other members have funded dinners or group entertain-

ment evenings such as the Country Hoedown at annualmeetings.

LSESSI continues to be an all volunteer organiza-tion. No one, including the founder, officers, Board ofDirectors or speakers at the annual meeting, receive ex-penses, salary or honoraria. Members credit the orig-inal founders, Steve Marshburn and his wife Joyce, asthe people most responsible for LSESSI’s success. TheMarshburns, Steve disabled and at home, and Joyce af-ter her normal work hours, have made themselves avail-able at all hours to respond to calls, organize mailingsand to produce informational materials, and interfacewith the media to promote dissemination of informa-tion about these injuries. At least fifteen suicides havebeen prevented by their intervention when depressedmembers called. As members or families have becomemore able, they have begun to contribute time and tal-ent. They offer support to the organization by editingthe newsletter, designing the website (www.lightning-strike.org), outreach to members, maintaining the mail-ing list. Members are notified of births, deaths, illnessand other life events of members and their families, etc.

5. Outreach activities

Unfortunately for the electric shock members, light-ning seems to have greater story value to the media thanelectrical accidents. Even before Gretl Ehrlich, a wellknown author prior to her lightning injury, wrote theNew York Times best sellerA Match to the Heart, me-dia inquiries were common. LSESSI has received hun-dreds of inquiries from newspaper, radio, television,movie and documentary producers (Table 5). Some-times these are from reporters who want to supplementa story about someone who has been injured in theircommunity. Equally often it is from reporters who areinterested in writing feature stories or producers whohave been contracted to produce specials for the Dis-covery, Learning, Weather or other channels. LSESSIhas cooperated with all of the major networks on ‘hardnews programs’ including nightly reports, as well asnews-like programs such as 20–20, Connie Chung, etc.and have appeared on the Today Show, Good MorningAmerica, and multiple other talk show programs.

LSESSI members and Board of Directors frequentlyparticipate in these programs (Table 6). Often theyrequire ‘a contribution to their favorite charity (theLSESSI endowment fund)’ for their time to work withproducers in coordinating interviews, fact checking,and facilitating other parts of the production. The in-

46 M.A. Cooper and S. Marshburn / Lightning Strike and Electric Shock Survivors, International

Table 5Services offered to non-members, non-injured

Media interfaceWork with students and other non-injured volunteersCurricular adviceInteraction with related professionals

Physicians, psychologists, physical therapistsMeteorologistsBroadcasters

Injury prevention with outreach to industry and recreation groups

Table 6Keys to success and growth

Dedication of original organizers and ability to recruit othersDedication of board of directorsFlexibility (change with the times, growth of the organization,with technology, website, etc.)Incorporation and use of talents of survivorsAddress needs of several constituencies (victim vs family vschildren, etc)Keeping older members returning, involved, and as role modelsfor the newer membersShield against those who want to take advantage of the organi-zation or its members

Professionals, mediaPurveyors of unproven therapiesFrank charlatans, con men, tax dodgers

Collaboration with other groups to improve clinical care, preventinjuries, encourage

Research and provide wider public and professionalunderstanding.

(media, medical, meteorological, construction, insurance in-dustry, etc)

creased public awareness of the injuries and their af-termath, benefits not only LSESSI membership but allother survivors of these injuries. Whenever one of theseprograms is broadcast or newspaper articles published,LSESSI receives a number of phone calls and othercontacts from survivors who had previously felt alone,not knowing an organization like LSESSI existed andhoping to find answers and support.

LSESSI and its Board Members have participatedin curricular design, in student, 4-H and scoutingprojects, and in other safety and prevention activi-ties. The mission has broadened to include presen-tations by members at industry, recreation and con-struction safety organizations. They also partici-pate with the National Weather Service as a spon-sor of National Lightning Safety Awareness Week(www.lightningsaftey.noaa.gov).

6. Transitions come with growth

As any organization’s membership grows, knowingall the members by name and face and family is harder

Table 7Foreseeable transitions during growth

Distancing of some members as the organization exceeds thecapacity for all to know each other personally.Increased budgetary demandsChanges in organization governanceAcceptance of lack of ability to satisfy everyone’s particularneedsBalance of the ‘greater (organizational) good’ vs individual mem-ber needsChanges in scope, focus, and mission as membership grows,members recover, etc Technological changes:

more sophisticated record keepingmore sophisticated communicationneed for websiteimproved materials for distribution: change from printed to

VHF, CD, DVDNeed for more sophisticated fundraising and investmentstrategies:

Business planIdentification of funding sources to meet expanded budget and

missionGrant and foundation applicationsFinancial management

Federal and State legal requirementsTransition from original founders to successor

directors/managers

to accomplish. Meeting space needs to be enlarged orvenues that were formerly comfortable changed. Dif-ficulty in travel to out of the way but less expensivemeeting locations needs to be addressed. Retention ofsuccessful ‘graduates’ of the organization is desirable,if only to give newer members role models for a post-injury life that can be fulfilling and rewarding, not justtolerable. All of these transitions are foreseeable butnot always easy to resolve (Table 7). As organizationsgrow and all members are not personally linked to allothers, conflicts inevitably arise and take leadershiptime to work through.

While any support group must be sensitive to itsmembers, it also needs to recognize and deal with thepeculiar personality and other behavioral changes thatoccur with their particular population. Brain injuredindividuals often experience easy rage, are unwillingto let go of how they remember themselves prior to theinjury. They may self-medicate particularly when theyhave chronic pain that is not addressed adequately bythe medical profession. Sometimes there may be unrea-sonable demands of the organization, medical profes-sionals, their employers and many other groups. Theymay exhibit other personality factors that make themdifficult. Sometimes decisions between the ‘greatergood’ of the organization and the needs of the individ-ual must be made.

Support groups are by nature open organizations andcannot limit who chooses to join. Sometimes individu-

M.A. Cooper and S. Marshburn / Lightning Strike and Electric Shock Survivors, International 47

als appear who are inappropriate or disruptive of meet-ings. Sometimes professionals who are attracted to thesupport group have ulterior or profit-driven motives ormay be on the fringe themselves.

Another menace are the purveyors of usually harm-less but occasionally dangerous medical devices. Theymay tout unproven therapies. Some seek endorse-ments. One member wanted to use LSESSI’s 501c3status to wash funds to a disabled individual. The lead-ership of any organization needs to be wary and able to‘sort the chafe from the wheat’.

As any support group grows, it has the opportunityto foster or encourage research in their area. Particu-larly when the subject is not well known, many theoriesand questions can arise that have not been formally in-vestigated. Leadership must be wary not to participatein ‘junk science’ or risk losing the organization’s hardwon credibility.

When survivors are spread thinly across the country,face to face contact is not always possible or individualsmay not find others who are compatible. While thereis provision for and encouragement of state chapterswithin LSESSI, successful state chapters depend on thestate organizer. Many have been successful for yearsbut then dwindled as a result of retirement, illness,exhaustion or changing family obligations of the localorganizer.

Other challenges arise with new technology andcommunication systems, as the membership grows andrecord keeping becomes more necessary but also morecumbersome, and as the cost and time commitment forthese increases (Table 7). Development of a businessplan that can be used with foundations or organizationswith charitable grants is necessary. Fundraising andinvestment strategies need to be taken to another level.Oftentimes there is no one in the organization with thenecessary background and talents to step forward to dothis and the funds to hire it to be done professionallydo not exist.

Last but not least, with growth the time and or-ganizational demands may begin to overwhelm theBoard. Life changing events (illness, family priorities,or death) may alter their ability to contribute. In orderfor the organization to succeed, plans for successionneed to be made. With the growth of the organiza-tion, decisions need to be made about changes in scope,goals, mission, and use of paid staff.

7. Conclusion

From its modest beginning in 1989, Lightning Strikeand Electric Shock Survivors International, Incorpo-rated, has grown nearly a hundredfold. It receives hun-dreds of inquiries every year and has saved or changedthe lives of countless individuals worldwide includingmany who have never joined the organization. It hasbrought tremendous satisfaction and joy to its leader-ship as they have helped to point the way to recoveryfor many. It may be impossible to duplicate LSESSIexactly but many of the lessons learned by LSESSI arethose that are common to all support groups as well asmany other types of organizations.

References

[1] E.B. Curran, R.L. Holle and R.E. Lopez,Lightning fatalities,injuries, and damage reports in the United States from 1959–1994, National Oceanic and Atmospheric Administration Tech-nical Memo NWS SR-193, 1997.

[2] M. Primeau, G. Engelstetter and K. Bares, Behavioral con-sequences of lightning and electrical injury,Semin Neurol 15(1995), 279.

[3] I. Yalom, Bereavement groups: Techniques and Themes,Int JGroup Psychother. 40(1) (Jan. 1990), 105–107.

[4] M.A. Cooper, C.J. Andrews, R.L. Holle and R. Lopez,Light-ning Injuries, in Wilderness Medicine, (4th Ed.), ed Auerbach,Mosby 2001, pp. 73–111.