Life and research after an ALS diagnosis

By Jayne P Lambrou

Tor A. Benjaminsen continues to lead a large ERC project from the Norwegian University of Life Sciences despite being diagnosed with ALS.
Tor A. Benjaminsen continues to lead a large ERC project from the Norwegian University of Life Sciences despite being diagnosed with ALS.Photo: NMBU

A personal account of adapting to a devastating diagnosis of motor neurone disease through continued research.

Tor A. Benjaminsen is not shy of upsetting the status quo. Over the years, his research has challenged several accepted narratives around land and conflict. He has argued that the Sahara Desert is not spreading south, climate change is not the main cause of conflict in the Sahel, Sámi reindeer husbandry is sustainable and that WWF have a history of endorsing the violation of human rights in the name of wildlife conservation.

Now, he is taking on a more personal battle: motor neurone disease.

“In the summer and autumn of 2023, I became weaker and weaker and the doctors eventually suspected ALS. It came as a shock, a real crisis, or whatever you want to call it. My life was turned upside down in an instant. An instant that didn’t end. For a couple of months, time just passed without me noticing,” says the environment and development professor.

Intellect unaffected

ALS (amyotrophic lateral sclerosis) is the most common form of motor neurone disease. It causes the progressive degeneration of nerve cells in the spinal cord and brain. It affects voluntary control of the arms and legs and eventually leads to difficulty breathing. There is currently no known cure. Despite its severe impact on motor functions, ALS does not affect intelligence, thinking, vision, or hearing.

Benjaminsen, who was very physically active with cycling and cross-country skiing prior to his diagnosis, is therefore more focused than ever on intellectual pursuits. Like the famous physicist Stephen Hawking, who continued an active academic and personal life for many years after his ALS diagnosis, Benjaminsen intends to adapt his personal care, writing and research activities to compensate for the functional limitations brought on by ALS.

He has, of course, read a lot of the literature around ALS and similar diseases. He is well aware of his prognosis.

“Only 20% of people with ALS live five years or more after the onset of symptoms, and only 10% live more than 10 years. Those are the merciless facts of this disease. Whilst Stephen Hawking lived with motor neurone disease for 55 years, his must be deemed an exceptional case.”

It is, however, by no means a defeated man we meet in his office at the Norwegian University of Life Sciences (NMBU). In 2022, he landed a prestigious Advanced Grant from the European Research Council for a five-year research project called Landresponse. The aim is to determine the causes of violent conflict and migration in the Sahel. With the help of two functional assistants and a relocated ground-floor office, he continues to lead the project and supervise several PhD Fellows.

Remaining active through research

“I still look to the future. My focus is on the Landresponse project that runs until September 2027. If I live that long, I will be 67 years old, and, like everyone reaching that age, it will be a natural time to take stock.”

“The project is about land-grabbing in the Sahel being a potential cause of migration and recruitment to jihadi groups. Rather than focusing on climate change, poverty, unemployment, ethnicity or population growth as reasons for the conflict, we hypothesise that it’s more to do with local people losing control over land and resources,” explains Benjaminsen. “For example, there are agricultural projects in the region that have stealthily taken over fertile grazing land over time. We ask what real options a poverty-stricken herder has when his livelihood – the grazing land – disappears. Become a jihadi? Join a group that fights against the state and the elite that they hold responsible for the loss of their livelihoods? Or move to the city, possibly migrate to North Africa and maybe try their luck crossing the Mediterranean to make it in Europe?”

Benjaminsen sees many parallels between the negative attitudes towards the herders in the Sahel and prejudice towards Sámi reindeer-herders in Norway’s Finnmark, about whom he co-wrote a book that was published in 2016.

“The negative attitudes of the authorities and society to pastoralism or nomadism are the same everywhere. Our research came up with a completely different result than the premisses used by the public administration on reindeer counts and overgrazing among other things. That stirred things up. I am full of admiration for the Sámi rights activists who have shone a spotlight on the injustices against reindeer husbandry in Norway, not least by protesting the Fosen wind turbines and the planned copper mine in Kvalsund.”

The common thread in Benjaminsen’s work is how politics and power relations affect environmental issues – i.e. political ecology. He established Scandinavia’s first university course in the field in 2002, a course that is still going strong at NMBU today.

Tor A. Benjaminsen and postdoc Ibrahima Poudiougou in Benjaminsen's office at the Norwegian University of Life Sciences
Tor A. Benjaminsen and postdoc Ibrahima Poudiougou in Benjaminsen's office at the Norwegian University of Life Sciences. Photo: NMBU

His very first research project was in 1988, launching a long career in political ecology. The findings led him to criticise the idea that the Sahara Desert is spreading southwards.

“This became part of an international wave of research that has shown that the Sahel has become much greener since the great drought of the 1980s. Climate change is actually causing more rainfall in the Sahel, contrary to popular belief. Yet the idea of desertification is still entrenched. The World Bank is a powerful player that insists desertification is a problem. A large sub-Saharan tree planting project is now underway, planned as a 15-km wide and 8,000-km long belt that is meant to provide work for the local population and thereby slow down migration and recruitment to jihadist groups, store carbon and prevent the Sahara from spreading. It’s indeed too good to be true, and it's all funded by the West, which can then boast another climate initiative.”

“The problem is that such initiatives tend to dispossess local pastoralists from their grazing areas. In addition, the Sahara is not spreading in the first place, so why plant trees to stop the desert from expanding? Finally, very few trees planted in such a dry environment actually survive. We know this from decades of experience with large-scale externally initiated afforestation projects. However, tree planting in Africa remains a popular climate initiative in Western countries, despite these problems and the fact that it can actually lead to more conflict and substantial costs to local livelihoods. It is obviously much easier to plant trees in Africa than to cut climate emissions at home. The large tree-planting projects that are now being planned in Africa can therefore be seen as typical greenwashing initiatives.”

New book

Stiff muscles and joints make it difficult for Benjaminsen to use his hands. They do not flit as quickly over the keyboard as they used to - but are quick enough for the time being.

“During 2023, I focused on what I can still do - something that I’d been thinking about for a while – writing a new book about the Sahel. Writing is a real tonic. Being in free flow and forgetting time and place have been important and good for me. Walks in nature have been replaced with long intellectual sojourns, which has worked quite well.”

The book Climate Security and Climate Justice. Recognizing Context in the Sahel will be published in September.

Tor A. Benjaminsen wrote a book on climate and security in the Sahel after being diagnosed with ALS.
Tor A. Benjaminsen wrote a book on climate and security in the Sahel after being diagnosed with ALS. Photo: NMBU

Adjusting the working day

Benjaminsen is able to continue his research by making adjustments to his working day and delegating some tasks.

“Leading a large project involving several PhD and post docs is fine. I have delegated some of the practical tasks to my capable colleagues. Sitting in the same position for long periods of time is not good for my body, so meetings are shorter and I have to take a few more breaks during a normal working day. These are the most visible changes that others see.”

When it became clear that the historic listed building that houses Benjaminsen’s office would have to be adapted to allow him to continue working, things did not initially move very quickly. Then the Norwegian public welfare agency NAV stepped in and got the ball rolling.

“My contact with NAV has been really positive. I have been met with humanity and understanding from the get-go, and I’ve found it to be very professional and efficient.”

“At my first meeting with NAV, which was about getting a wheelchair adapted to the workplace, I found that they had already been on campus to check out the building and had picked the most suitable wheelchair for my needs. The wheelchair, which has small wheels and a tight turning circle, works well indoors, but is less suitable for outdoor use. An additional model was then picked for outdoor use,” says Benjaminsen. “Not only that, I will also get one of those bigger and faster wheelchairs adapted for forest terrain. Isn't that great?”

Out in nature

Benjaminsen hopes the all-terrain wheelchair will give some compensation for his loss of activity in the great outdoors. Long cycling trips to work and skiing in the forests north of Oslo used to be how he cleared his mind in between long days of research. Last winter, these activities came to an abrupt halt.

“Instead of going out, I sat and looked out. In April last year, I cycled to work for the last time – 38 km from Tåsen in Oslo, out through the countryside to the university. It was strange. I used to do those return trips a couple of times a week. Now I can’t cycle at all.”

“Looking back, I think the first symptoms appeared in 2022, but I became noticeably worse during summer 2023. The disease progressed to the extent that I thought I would be in a wheelchair by Christmas. But in November, the progression of the disease slowed, and I haven't become that much worse since then. I can still walk with crutches! But it can develop in fits and starts, so I will probably be reliant on a wheelchair soon.”

“I physically and emotionally miss being active outdoors. Feeling the elements and soaking up all the sights, sounds and smells. The strong physical and emotional sense of loss has surprised me.”

Unwavering support

Those closest to ALS-patients are directly affected. Benjaminsen’s family have provided unwavering support to make day-to-day life easier. Hanne, his wife, has been a key factor in adapting to the condition.

“I depend on help with all practicalities. My wife Hanne has made my day-to-day life comfortable, and it’s difficult to express how much that has meant. My two daughters, other family and good friends have also helped to ensure that my life is rich and fulfilling despite the disease. Family and friends have always been important to me, but this is magnified the more I depend on them. Hanne is also a researcher and knows how important research is to me. She is one of the main reasons that I can now sit here in the office at Ås and continue my work.”

“Among all the ALS research I have ploughed through, I came across a study with a slightly odd result. It showed that it is a majority of ‘nice’ people that get ALS. If that’s the case, it's at least one good reason to belong to the majority of ALS patients.”

Research mentioned in the article:

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