An Indelible Encounter With Man, Whose Wife Is Dying of ALS


imageYesterday was the eve of my 51st birthday. It was about 4 pm and I was sitting in my living room, feeling rather disconsolate. Money was in short supply, the graph I had plotted for the year, was not “plotting” and I was bored. I told my younger daughter I was bored and that I had read every book in the house. In recent times, I had found myself picking up my wife’s law books and reading just for the heck of it. So I decided to visit my book man. This dude sells all manner of books just in front of the University in Ibadan. He does not have a shop per se, but utilises a space in front of one of the shops in the shopping complex, which is directly in front of the University. You probably figured right…the books are not new. But they are all in mint condition and he boasts an array which runs from topics as diverse as Anatomy to Zoology and everything else in between.

So, I head out. As I reach his place, I see a guy I think I know. We spot each other at about the same time and I see a flicker of recognition in his eyes. Same flicker must have been readable in mine, as we acknowledged each other with nods. I start browsing. I notice the guy is very interested in medical looking books and journals. He is not browsing in the per functionary way that I am , but picks up stuff that interests him, actually reads a few pages, rather intently and then picks up something else. I am paying special attention to him because I am now certain that I know the man from somewhere. Then it hits me!

In 1986, I think it was, the University of Ibadan, hosted the Nigerian University Games, and called NUGA. On the day I made this gentleman’s acquaintance, I had wandered over to the basketball court, because UI was to play. Somehow, I got the time wrong and decided to watch volleyball, to while away the time. UI, was playing Nssuka, I think. I noticed a particular guy. The reason why he stood out was not because he had a very ferocious spike, but more because of the way he seemed to fly into the air…a semblance of levitation, if I ever saw one. He would float up and STAY up for what seemed like an indeterminable time, seeming to defy gravity. Then he would unleash these venomous spikes! He was not a tall person. About 5’6” at the most. But he had really big legs. Thick, muscular thighs and awesome calves. I knew he must have spent a lot of the time doing squats with heavy weights, to build that bulk. It was the power of his legs that made his offensive play so devastating. As I am wont to do, I get very vocal when I am watching sports. I hailed the guys every point and at the end of the match, which UI won, I sought him out and shook his hand. After the games, we bumped into one another on campus. We never really became friends, but we were always chummy when we managed to catch a few moments. He was two years ahead of me and graduated that year of 1986.

This was the guy that was browsing before me. I asked him if he attended UI and he answered in the affirmative. He confirmed that he was an avid volley ball player and that he had indeed participated in the NUGA of 1986! My questions triggered his memory and we played catch up. I gathered that he had studied Petroleum Engineering and had gone on to a very successful career in the oil industry, with Shell. Working all over the country and beyond as an expatriate staff. But, he looked rather threadbare. Not at all like a successful oil executive. I wondered. Then I asked him why he was so interested in the medical books. He told me a story which weakened me and almost reduced me to tears!

Life had been good to him. Wonderful job, lovely wife, two great kids and a lot of globetrotting. All of this came crashing down in 2014, when his wife was diagnosed with AMYOTROPHIC LATERAL SCLERORIS (ALS) or Lou Gehrig’s disease. A rapidly progressive, invariably fatal neurological disease that attacks the nerve cells (neurons) responsible for controlling voluntary muscles (muscle action we are able to control, such as those in the arms, legs, and face). Some patients can live with this disease for ten-twenty years. Stephen Hawkins, is i believe the most celebrated person who suffers from this disease. But in his wife’s case, she had been on a rapid decline. At the time we were speaking she had lost all use of her limbs, her voice was all but gone and they were only waiting for death. The condition had been diagnosed in America, so the best care was available and luckily, he was able to afford it…at first! Within 18 months, hundreds of thousands of dollars had been gulped. A twenty four hour nurse was employed. He decided to resign his job to be there for his wife. But no matter what the doctors did, there was no improvement. They tried herbal treatments, even signed up to try drugs which were still in the trial stages all to no avail. He told me how he started devouring literature on ALS, reading everything he could about it and trying any and every treatment he heard of and could afford. At one stage, he heard of some guy in India who was supposed to combine spiritual and herbal healing treatments. He contacted the guy and flew him in from India at enormous cost. No effect. As he spoke to me, I noticed that he had adopted the mannerisms and language of a physician. He was so at home with the subject matter, that I, who had only a little knowledge of the condition, began to grasp the nuances of this terrible disease.

His wife was an athletic, fitness freak type. From jogging and swimming and all manner of aerobic exercises, she degenerated in 18 months to a total cripple, dependent on everyone for everything. You can only imagine how traumatic the whole experience was for the family! She could no longer hold or lift a pencil. All the voluntary muscles desert you and you spasm painfully. She had to have her salivary gland irradiated because she could no longer control them and could easily drown in her own saliva! Folks do you begin to understand the nature of this horrid affliction? Things we take for granted. It was at this point the wife decided that they should come home to Nigeria. She believed it was foolhardy spending all that money on such a futile cause. She wanted to come home to die! The husband, at this time was at a really loose end. Money which he thought was in abundance quickly disappeared. The American system was helpful and he got a lot of rebates. But, all the same, he was soon broke. The apartment, in which they lived, had to be adapted to care for this woman. The type of gadgets he described to me, were the kind I saw in a movie called THE BONE COLLECTOR! It was from this great man, I knew how far behind we ARE in the medical sciences! With ALS, movement ceases, but pain does not. Agony at every turn!

Against medical advice, he returned to Nigeria. That was an eye opener. He discovered that we still exist in the Stone Age where health care delivery is concerned. According to him, there are absolutely no support services for people battling ALS. Everything he utilizes, he brought in from the United States. Anytime he required something, he ordered it. This was why his doctors had advised him against returning to Nigeria. But his wife had been adamant and he was bent on doing everything to please her in her last days. They first moved into his house in Lekki, but he discovered that Lagos had become so impersonal. High fences everywhere, no contact with neighbors and the interminable traffic, made running around for the simplest chores an ordeal. He sold the house in Lekki, and moved to Ibadan, where his father had an unoccupied bungalow. He has outfitted the house to the best of his ability; one day just flows into the other. He keeps hoping that as he reads, he will stumble upon some new discovery, some new treatment. He does not care if it is orthodox or not. He keeps hoping. That has become routine. But listening to him, you know that he knows it is just a matter of time. There I was complaining about the paucity of funds and not meeting my targets! Here was this guy whose last couple of years has been dedicated to caring for his wife. If this is not THE GREATEST LESSON IN …..TILL DEATH DO US PART. I do not know what is! This guy, who unburdened himself so easily to me, is one of the bravest men I have ever known. The vivid descriptions of what he and his family have gone through are almost beyond belief! Has anyone ever considered a diet of pureed food? Pureed meat, pureed rice, pureed vegetables, and pureed all! That’s what this woman has been reduced to. Even as he narrated this tale to me, the wife had started to reject the meals.

Folks this affliction has nothing to do with eating right or exercising! It JUST AFFLICTS YOU! I learnt a lesson in fortitude and love yesterday. I also realized that whatever I may be going through is nothing. At least I am alive. My family is well! We may not have all that we think we need. But we have our health! May the LORD never allow this affliction near our dwellings!

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