Enabled Life

How to Cope With a New SCI Injury

PVA Spokesman Outlines What Veterans Need to Know

VeteranThe Mobility Project recently spoke with Sherman Gillums Jr., acting associate executive director of the Veterans Benefits Department at Paralyzed Veterans of America in Washington, D.C., about U.S. military veterans with new spinal cord injury (SCI). We wanted to know what unique challenges service members face when adjusting to life with SCI.

Gillums has a unique perspective on this subject. He is a Marine Corps veteran who was injured in a car accident after 9/11 as he was preparing to deploy to Afghanistan. He has also served as a national service officer, visiting newly injured veterans in VA hospitals to help them get the benefits they need.

TMP: How common is SCI among members of the U.S. military? Are military members at a greater risk for SCI?

Gillums: Spinal cord injury is purportedly as common to the general population as it is to service members. Research estimates about 12,000 new cases a year in general, with most occurring among males between 16 and 30. Primary causes of SCI include vehicle accidents, falls and acts of violence. Insofar as members of the military tend to be young males who by virtue of their chosen occupations might be disproportionately exposed to the above-mentioned hazards, one might speculate a higher incidence of SCI in that population. However, advances in science, research and medicine as well as heightened awareness, better combat gear/equipment, up-armored vehicles and effective early intervention have increasingly mitigated the incidence of SCI in hazardous military duty and combat situations. Of the military service members who have been injured while deployed in Iraq and Afghanistan whose medical data have been entered into the Joint Theater Trauma Registry, only about 104 sustained injuries to the spinal cord. Compare that with the 327 who sustained SCI during the Vietnam conflict and one can appreciate the tremendous progress we’ve made.

TMP: What challenges do veterans with SCI face that are unique to this group? How are those challenges addressed?

Gillums: While the profound impact of suffering an SCI knows no demographical boundaries, a veteran who with a service-incurred SCI is likely to be further encumbered with aspects of trauma not encountered by the average nonmilitary person with an SCI. This includes the lingering effects of prolonged exposure to hostile enemy action, persistent feelings of imminent harm, survivor’s guilt, military-civilian transition obstacles and polytrauma associated with the uniquely devastating effects of combat injury. Veteran service organizations, such as Paralyzed Veterans of America, have long worked with the Department of Veterans Affairs to build on the lessons learned from past conflicts and generations to address these challenges. Results of this partnership include increased awareness of post-traumatic stress disorder and traumatic brain injury across all medical disciplines that treat SCI patients; proactive support and education for caregivers and family members who support veterans; and peer mentoring as a means of connecting with paralyzed veterans earlier in the rehabilitation process.

TMP: Provide a general overview of what someone with a new SCI might face in terms of medical care/treatment. What should such a person expect to experience, from the first medical care contact to subsequent meetings with clinicians/physicians to the first day at home?

Gillums: Prior to suffering my own injury and knowing what I now know, I never could've imagined what it felt like to wake up suddenly paralyzed. Your whole life, every decision, falls into the hands of the ostensible experts around you who seem to control your fate. On your first day, you might have no idea how bad you’ve been injured or what being permanently paralyzed means. But you come to helplessly link any escape from pain, mental or physical, with the temporary relief these experts can provide. Subsequently, you spend many nights alone, wondering if you’re living a nightmare that will end soon, only to awaken to another day in purgatory. Yet, you’re still hopeful. At this stage, acceptance and denial play tug-o-war with your emotions until reality, often over time, finally ends the contest.

Throughout rehab, you feel thrust into a world of dependency and ignorance, trying to understand the medical vernacular and litany of terms being repeatedly lectured to you by your nurses and therapists as you cope with inner feelings of frustration and incessant pain. After about the first month, you’ve become an expert in SCI through both firsthand indoctrination and endless education. The fear of incurring a decubitus ulcer, developing a blood clot or “stroking out” due to autonomic dysreflexia motivates your compliance and thirst for knowledge. Control of your body no longer belongs to you as nurses, therapists and Mother Nature take siege of every one of its functions at any given time. As you endure recurring feelings of detachment from your military unit, friends and, in some cases, even family, a group of strangers—your “primary care team”—become the center of your existence, assuming you’ve grown to trust them and allow their intervention in your life. Oftentimes, that trust, or lack thereof, dictates whether you either make gains or stagnate in rehab.

By the time you’re “ready” to go home, you realize you’ve become born anew and must now leave the womb to face a seemingly bigger, more danger-filled world than you last remembered. It is not until you spend your first night at home alone, with no nurse sitting a call switch away, that you realize your survival rests entirely on your ability to "not die" from your injury. It is only after you realize that there's more to life than trying not to die when you begin to truly live again.

TMP: Talk about the role of the medical team members involved in rehabilitation.

Gillums: The interdisciplinary team tasked to restore a newly paralyzed veteran’s identity mounts an integrated effort to do so as quickly as reasonably possible from the time one is stable enough to begin rehabilitation. Nurses function as the primary educator, caregiver and cheerleader in the process. The various therapists (vocational, occupational, physical, recreational) lay the path to new skills and levels of functionality. Physicians, while seen less routinely, are often viewed as the veteran’s most critical care provider. Psychologists are not immediately embraced by injured veterans in many instances but are eventually regarded as the most effective outlet for much-needed emotional release (particularly as combat-related post-traumatic stress disorder/traumatic brain injury have become better understood). Social workers act as all-purpose advocates who work to remove immediate obstacles to transition as the veteran attempts social reintegration. Finally, the veteran’s peers, family and friends form the network of support that must reliably continue to ensure progress beyond the acute stage of rehab.

TMP: From your experience, what are some of the emotions people have when they are first injured? What are the best ways of coping with those feelings?

Gillums: Initial emotions include shock, disbelief, fear, uncertainty, self-pity, self-hate and detachment. Coping mechanisms include continuous education, peer engagement, socializing, focus on strengths, vocational productivity and embracing one’s disability by teaching others about it.

TMP: What resources are available to help veterans (or anyone) with new SCI? What resources does your organization offer specifically?

Gillums: A number of reliable online and print resources provide education on research, technology and other advances in spinal medicine. PVA offers its own publications, such as Paraplegia News and Sports ‘N’ Spokes, and clinical practice guidelines for the education of its members and the public at large on all aspects of spinal cord injury. PVA also launched Operation PAVE (Paving Access for Veterans Employment) in order to provide professional, bedside outreach to newly injured veterans who desire to remain vocationally productive after injury and once rehabilitated. PVA also works in partnership with the Department of Veterans Affairs to encourage participation in athletic competition and wheelchair sports at the annual National Veterans Wheelchair Games held around the country.

TMP: What questions should someone with a new SCI be asking?

Gillums: How do I get beyond the stigmas attached to disability? How can I remain productive despite my disability? What is my realistic potential for recovery given my level of injury? Can I still thrive as a human being across all social dimensions (dating, working, going to school, raising a family, traveling, etc.)? How do I emotionally get beyond my loss? What can I do to prolong my life?

TMP: In your experience, what is the most important information someone with a new SCI needs? What do people say they wish they knew at the time of injury?

Gillums: The most critical information relates to the invisible aspect of recovery: mental wellness. Each individual approaches a spinal cord injury differently and requires intervention that addresses each person's unique needs. Once a newly injured person has confronted the mental barriers to progress, she or he can face down inevitable setbacks and disappointments without succumbing to “learned helplessness,” which often makes the physical challenges seem more insurmountable than reality permits. Those who successfully move beyond this stage often begin enjoying life and wish they’d spent less time moping in self-pity and isolation.

TMP: What advice would you give someone with a new SCI?

Gillums: Reconnect with your former identity by challenging yourself to do old activities in new ways. Also, view yourself the way you want others to view you. Finally, make the wheelchair disappear by steering emphasis toward your identity, your productivity and your optimism.

TMP: What can people with a new SCI do to help their own situation? What can empower them to take back control of their lives?

Gillums: Learn from those who've been there; then challenge yourself to exceed expectations. Limitations cannot define you without your permission.