THE TRAGEDY OF MULTIPLE SCLEROSIS

The general consensus of the cause of multiple sclerosis (MS) is an autoimmune disease. The autoimmune disease is a term described as the body’s immune, or defense, system mistakenly attacks its own tissue. In case of MS, the immune system attacks the nerve tissues in the central nervous system (brain and spinal cord). In the past, MS patients were thought of them as being drug addict and alcoholic because they stumble and lose their balance as they walk. In the old ages, the MS patients may have been accused of being bedeviled and so they were badly mistreated. It was only about two or three decades ago the medical research acknowledged a possible cause of the MS disease. The conclusion was that the signals that control parts of the body and physical functions, such as balance and muscle coordination were generated by cells called neurons. The brain and spinal cords contains these neurons. The signal to the body parts passes between neurons through the nerve fibers called axons. The axons are protected by a sheath called myelin. Permanent damage (neurodegeneration) to neurons, axons, or myelin disturbs the signals send by the brain to the body parts causing the MS related symptoms. These symptoms vary from one patient to another.

The neurodegeneration or inflammation is activated by the immune system. When the myelin is lost, scars (scleroses) are formed. This is where the name multiple sclerosis comes from. Neurodegeneration occurs early in MS and continues throughout the course of the disease. MS affects all races and most people are diagnosed with MS between the ages of 20 and 50, while women are 2 to 3 times more likely to have MS than men. This disease is complicated to diagnose where symptoms are numerous and keep changing with time. Symptoms include weakness, numbness, tingling sensations, balance problems, stumbling, depression, blurred vision, fatigue, bladder problems, slurred speech, dizziness, bowel problems, and cognitive difficulties. In general there are four categories of MS; relapsing-remitting, primary-progressive, secondary-progressive, and progressive-relapsing. Patients categorized as secondary-progressive and progressive-relapsing suffer the most while many of them have a mild case of MS and never noticed they have the disease. All current remedies of MS are nothing but band-aid type treatments; they do nothing to stop the progress of the disease or cure the patients.

I met my wife who is gorgeous, beautiful, intelligent, caring, compassionate, and kindhearted young woman. She was easy going I thought a bird could eat from her hand. Our marriage was simple and down to earth. It was performed under a tree (still standing up to this day) in the southwest corner of Wilson Park, Fayetteville, Arkansas. A few friends attended the ceremony and brought a homemade cake with them. I was not quite prepared or geared up for the occasion as I judged it from the look at the face of the Justice of Peace when I answered “ yes ” instead of “ I do ” for his question “ Do you take this woman to love and cherish ….?” He could not keep a straight face when I answered his question and I heard giggles from the few guest standing behind me and my wife to be. That was an embarrassing and awkward moment.

Like any other marriage, the argument started the next day when I scooped with a fork the best piece of the left over homemade wedding cake. I was in the process of offering it to her when she started complaining about me taking the best piece of cake. When she realized I was extending my arm with this best piece of cake toward her mouth, she felt very uncomfortable. At that moment I thought the road to married life is going to be edgy and uneasy one. Our marriage went very smooth most of the time and the only argument we had are quite trivial, marginal, and insignificant. For example, we argued about why I do not like to eat pig products. Her point of view is that nothing wrong with pigs, after all, god created them. My side of the story was based on cultural sentiments. I end up giving in and the argument was stopped by saying I would wear a pork-chop around my neck, if this would save our marriage.

When our second daughter was about four years old, my wife had blurred vision problems. I took her to a specialist. While I was taking care of my younger daughter in the waiting room, the doctor came out and was looking at me with a strange sympathetic, concerned, and caring look. At that moment, I realized my wife must have a serious problem. We were consulted by all kind of specialists and neurologists and after several months of agony, distress and misery, a very mean and cruel neurologist informed us that my wife had MS. At that time, I did not know what MS meant and I was somewhat relieved that she was finally diagnosed with a disease as simple as an MS. My relief did not last very long after I realized this MS is one of the most excruciating, hurting, agonizing , and painful diseases. At that moment I felt like the Earth was shrinking, disintegrating, and in a collision course with the sun. That moment was like someone hit me with a big club in my guts. It was an apocalyptic day to me.

It was indeed catastrophic news to all of us. At that time I was working at the Air Force Research Lab. I was even more shocked when I informed my boss about my wife medical condition. I clearly recall him saying “you must be useless to me now.” From that moment work-related problems started coming to me in bundles. In about a year or so from that incident, the branch chief was removed from his post and the division chief was demoted and removed from manager others. These events however, did not cure my wife. Her disease was categorized as a secondary-progressive MS. In about a year or so, she was completely crippled and had to use an electric scooter to move about the house.

Every time I look at my wife sitting on her scooter, I see her beautiful face. But inside, her physical and mental conditions were deteriorating, fading, and failing slowly by the day. It is heartbreaking to see loved one going down the drain. It is powerless to be in a position where one cannot find a way to help. I talked to one of her neurologist, who was extraordinary gentle and considerate with his patients, and suggested if I can offer part of my central neural system as a transplant organ just to see a glimpse of her walking around. At that moment I saw a few tears rolling over his cheeks, which was something rare to see. On another occasion, I came home from work and open the door to see my younger daughter leaning over her mother’s feet and yelling at the top of her lungs “go away disease.” I could not stand the scene; I quietly closed the door from the outside and started walking away aimlessly. I could not recall how many miles I walked before coming back home.

When the news of my parents’ death came to me I was sadden and depressed due to the fact that I could not see them for so many years. Their death brought back the memory of the simple and innocent life I lived with them. I was however numb and mute to tragic events because the pain of the crippling disease of my wife, which is so deep; it is engraved in my bones. Seeing her beautiful face in agony is like there is a death or a funeral in the family every week.

I got used to my wife in her MS condition. I became the cook of the family. Every time I come home from work, I see everybody looking at me and asking “where is the food?” There is no room for complaining at my end. Occasionally, I became grouchy, cranky, and irritable about my situation. I felt that god closed his eyes, turned around a few times, and then randomly picked me up for this harsh, brutal, vindictive, and merciless task on Earth. Every time I reached to the point where I could not stand the pain watching my wife’s health deteriorate or whenever I could not take the stress, anxiety, or trauma any more, I would leave the house and let my soul go back to Palestine. There, I would recall the images of older Palestinian women carrying on top of their heads large bundles of the remaining belonging and walking on dirt roads for miles and miles to reach the safety in other countries. There I see mothers taking care of their severely maimed children and husbands. Then I look back at myself and I feel selfish, guilty, and ashamed of myself. In many ways the images from Palestine became my remedy and medicine both mentally and physically. It is quite strange that I gain mental and physical strength by imagining the miseries and the tragedies of my people. I owe them every drop of my blood, but for my wife multiple sclerosis tragedy, I do not wish it for any friends or enemies.

Omar Manasreh
12 June 2008