ALS and the Brain Drain of Higher Education

In the absence of a cure, colleges and universities continue to lose faculty members to ALS, or amyotrophic lateral sclerosis, also known as Lou Gehrig's disease. The magnitude of this loss is nothing less than a brain drain of talent in higher education.

During the last few months, several American faculty members have died from ALS, including Massachusetts Institute of Technology professor Philip Freelon, the lead architect of the Smithsonian's National Museum of African American History and Culture; Columbia University professor Alan Brinkley, a leading scholar of American political history (and son of television newsman David Brinkley); and University of California, San Francisco, professor Rahul Desikan, an ALS researcher who contracted the disease himself and whose journey was well documented by the media.

ALS is a neurodegenerative disease that affects the nervous system and muscles. Over time, a person loses the ability to move their legs, arms and fingers and, eventually, to talk, swallow and breathe. There is no cure, and the average life expectancy of ALS patients is two to five years. A small but growing number are living beyond 10 years. I intend to be one of them.

Yes, that's right. I have ALS. I am also the dean of libraries at Appalachian State University.

ALS can strike anyone. The medical profession has not been able to determine what causes it or why it attacks specific people. In general, athletes, military veterans and men between the ages of 40 and 70 are somewhat more likely to contract the disease. About 6,000 Americans are diagnosed with ALS each year, or 15 each day.

My symptoms began in 2017. One morning, while taking a three-mile run, I noticed that my left leg refused to lift as it should. Over the next half year, I experienced small accidents and occasional, inexplicable tripping. Initially, I thought the problem was related to an old football injury.

However, in January 2018, I was diagnosed with ALS. The news was devastating. I had always been health conscious, ate well and exercised conscientiously. Now over a year and a half later, I am wheelchair bound. My arms and legs barely move, and my speech is slow and labored. Ironically, I have little pain, and my mind remains sharp and alert. Jenny, my wife, and my two sons have made great sacrifices to care for me.

I have been fortunate to have the support of colleagues, staff and students in the library and on the campus. It takes a compassionate village to enable the work of a faculty member with ALS. Most mornings, my wife drives me to campus, where my administrative assistant meets me and accompanies me in my power wheelchair to the office. Once there, she adjusts my chair and places my hand on the computer mouse. I can no longer type on a regular keyboard. Instead, I compose with dictation software and a virtual keyboard on which I click letters to create words.

As an administrator, I frequently lead departmental meetings. But as my voice has weakened, slowed and become less clear, I have had more difficulty playing that role. I now choose my words carefully in order to say more with less vocabulary. I am grateful for the patience of my colleagues and to the provost, who has moved many meetings to the library so that I would not need to travel across our hilly campus.

As movement and speech are increasingly compromised, the faculty member with ALS requires an ever-changing assortment of technologies to assist with computing, teaching, participating in departmental meetings and getting around the campus. In addition, the faculty, staff and students must be made available to enable those activities. Finally, the institution must provide support in terms of funding and policies.

For our students and campus generally, exposure to a faculty member with ALS can become a rich growth experience. Soon after my diagnosis, I observed to one of the deans that I was learning to navigate this new reality. He replied that, through me, “We are all learning to do that.” Indeed, ALS is a collective experience, not solely owned by the person with the disease.

Like many diseases, ALS does not come with a manual. What it does come with are endless opportunities to express compassion and sensitivity to the needs of others. Institutionally, we have much to gain by embracing and supporting those with ALS.

Powerful Learning Opportunities

While ALS does not affect those of us in higher education any more than other communities, the loss of our intellectual capital arguably impacts American and global society to a significant degree. Our communities have lost great teachers and mentors, scholars and researchers, public intellectuals and possessors of wisdom. Perhaps best known among them was Stephen Hawking, professor of mathematics at the University of Cambridge, author of the international bestseller A Brief History of Time and one of the great intellectuals of the 20th century. But Hawking is just the tip of the iceberg. Many of us know one or more faculty on our campuses who have suffered from ALS.

Compared to other diseases, ALS research and patient care are shockingly underfunded. Treatments for ALS have changed little since Gehrig died in 1941. And the cost of extended care for patients is beyond the means of most people. As the disease progresses, patients require physical and occupational therapy, as well as equipment such as wheelchairs, ramps, lifts, machines to assist with coughing and breathing and modified beds, bathrooms, and vehicles. And standard medical insurance doesn’t cover much of the equipment and extra care.

But the good news is that medical researchers and scientists believe that we are on the cusp of major breakthroughs that will lead to a cure for ALS. Finding a cure not only requires funding but also greater awareness, advocacy and engagement. We can make a difference in the battle against ALS, in the classroom with our students, in our research and in our service. A highly educated group, we have distinct insights and perspectives.

What can we in higher education do? Most important, we can prepare our students and the public to rise to the challenge of finding a cure, if not next year, certainly in the next generation. A number of disciplinary and interdisciplinary learning activities can mobilize students to care about this issue and the people most directly affected.

Since my diagnosis, I have learned a great deal about the needs of ALS patients and their caregivers, and the incredible learning opportunities that exist for students. Here are a few examples of powerful learning experiences:

• For patients, obtaining authoritative information about ALS remains a constant problem. While the internet offers much good information, it also contains a great deal of misinformation that’s sometimes intended to deceive people desperate for hopeful news. One valuable activity involves teaching students to think critically about ALS information and then making their analyses available to the ALS community. Librarians on your campus can provide assistance with this information literacy activity.
• Along similar lines, we can ask students to conduct research on FDA-approved treatments and a wide variety of alternative treatments. The ALS Untangled website lists more than 500 alternatives that have been identified as possibly improving ALS patient outcomes. The completed reviews on this site provide a useful model for student research. The value of those reviews in guiding patient behavior cannot be underestimated. Of course, patients will only benefit from this research when it is made available on a central repository.
• Numerous service opportunities also exist. The state chapters of the ALS Association are constantly looking for volunteers to lead and help out with ALS walks and other fundraisers. You might generate service initiatives that provide care and support for ALS patients and their caregivers. Service learning allows students to interact with those most affected by this terrible disease while also delivering tangible help.

By participating in bringing about a cure for ALS, we contribute to the well-being of our campuses and of our society more generally. We face a great opportunity to make a real difference.