In a new memoir, Dubai-resident talks about living with ALS

Last updated on April 22, 2021 at 1.10 pm

Right in the middle of an ordinary life, just when you are coping with the present and hoping for a future with possibilities, an incident alters your perception of the world and your place in it. In the fall of 2004, Dubai resident Lana Murad Bataineh, then 44, was living her happily ever after with her husband and three children who were then aged 20,17 and 15. That was until she fell ill while on a trip to the US and thought her muscle had spasmed for no reason, “It started with my legs, I walked with a limp for a while, then a walker, and then I was forced to be on a wheelchair,” she says in an email interview with wknd.

Lana was eventually diagnosed with amyotrophic lateral sclerosis (ALS), a degenerative condition that impacts cells in the brain and spinal cord, leading to loss of muscle control. The diagnosis also came with a warning — the doctors said she would have three to five years to live. What does that sentence do to a close-knit family? One would imagine it would break them, inflict emotional injuries that are hard to heal. In Lana’s case, as each member coped in their own way with her diagnosis, it also brought them together, strengthened their resolve to go through this as a unit. “Each one individually had to find the inner strength to find the positive in all this. And for me, I tried with all my might to stick around for them. The ALS also brought the family together in that they learnt to live in the moment. When my doctors practically assured us that tomorrow was no longer ours to share, that yesterday was just memories, and all that we had was now, we made sure we treasured every hour given to us.”

While she does see the silver lining, Lana doesn’t mince words when talking about what ALS has snatched from her. “Other than impacting me to the point where I am unable to move any part of my body other than my head, ALS has taken away my independence and dignity,” she says. “That is perhaps the most challenging bit — having to depend on caregivers and other individuals to do anything. It has taken over every muscle in my body, except for my mind and spirit. In fact, with every physical muscle atrophying, my spirit has grown in strength.”

Lana has certainly come a long way from the time top specialists at Johns Hopkins told her she had to get her affairs in order and she wondered if she would be around to witness the milestones in her children’s lives. Her experiences of living with ALS have now been documented into a memoir called Choosing Love, published by Austin Macauley. While much of the book draws from a blog Lana began to write after her diagnosis, there are vivid details in the voices of her family members that show how they coped with the life-altering moment. “It is so exhilarating to realise that my words have the power to inspire so many and that they can help people who are going through a rough time,” she says. “The book has been fully typed out on my Eyegaze computer. It’s a device that uses eye-tracking technology to assist with my communication. It has a camera attached at the bottom of the monitor and is pointed towards my eyes. On the screen, there is a standard computer keyboard, which allows me to type by simply looking at the letters. My eyes then work as the mouse — all I do is simply look at a letter. Then, I look at the speak button and the computer types.”

The Eyegaze computer was her family’s gift to Lana when ALS began to impact her voice. “I typed my first sentence on a warm summer day at my parents’ house in Amman. With my whole family gathered around waiting anxiously to see how it would work, I was able to say ‘I Love You’. I finally had a voice again. From the day it arrived (two years after I was diagnosed), nobody has been able to silence me.”

Blogging, she now recalls, has been a form of therapy. “It started as an idea put forward to me by my youngest son, Karim, to express my thoughts and feelings. From the very first post I wrote, the reaction was overwhelming and with each piece of writing, the readership kept growing. This response was truly life-changing. It opened doors for me.”

Today, Lana says her experience with ALS has changed her perspective on life. “I was left with no choice but to dig deep emotionally, mentally and spiritually. You will be surprised how much comfort and solace I found. The most important thing that happened to me mentally was my values became crystal clear. Since I fell ill, the scale by which I measure happiness changed; I became much more appreciative as to what is important in my life.”

In the recent years, social media challenges like the Ice Bucket Challenge, have attempted to raise awareness on ALS. Lana feels such initiatives have helped. “In the UAE, I wouldn’t say that the awareness of the disease is very widespread but what I would like to talk about is how people with disabilities are treated with so much respect, dignity, and importance — we get VIP treatment everywhere we go,” she says. “The government has made living in Dubai feel like freedom to people like me with disabilities; I have been able to go anywhere a healthy person is able to go, the cinema, mall, opera, concerts, public transportation — you name it! A small gesture which sends a strong message is how we are referred to as “people of determination” — I really love that.”