His Universe and My Solar System
Coral Springs’ Jean Cox compares her life with ALS to that of Dr. Stephen Hawking, as portrayed in the recent movie “The Theory of Everything”
By Jean Cox
Recently I watched the movie “The Theory of Everything,” about theoretical physicist Dr. Stephen Hawking’s misfortune of having amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease. I could relate to his plight more than most because I, too, have ALS. However, being older and more mature when diagnosed at age 50 (Dr. Hawking was just 21), I was fortunate to have enjoyed more years of life without the condition. I was happily married to my husband, Charles, and our children were grown, and we were looking forward to traveling. Life was good. Still, all of us were devastated at first. Now, 18 years later, we have all learned to live with my disease in the best way possible.
What is ALS?
ALS is a horrible disease and worse, by far, for some. It leaves the mind intact and the body in shambles. Life expectancy for most is two years. Yet, for some that is a blessing; for others it is overwhelming. When viewed in the right light, it can provide an
unappreciated benefit: It gives one the time to settle matters with loved ones and friends. Sudden death offers no opportunity to settle matters or say goodbye.
When Dr. Hawking was diagnosed, he was a promising young student in the physics department at Oxford University. How devastating that prognosis must have been for him. Not only was he told he had only two years to live, but that his body’s muscles would waste away quickly. Here was a brilliant young man with high hopes and his whole life in front of him.
Dealing with the Devastating News
For me, the onset of my ALS was so odd that it took many doctors and two years to get a final diagnosis. It began in 1997 when my leg muscles began to feel tight. Then in August of 1999, things changed, but subtly. On my walk one morning, I tripped. This was no big deal, I thought. When it began to happen with regularity, I took note, but still dismissed it. That December, while in Virginia visiting relatives, the weatherman predicted a snowstorm for the following day. Not wanting to get caught in it, I made a new reservation and departed for the airport. When I walked onto the tarmac, my leg muscles became so stiff that I was barely able to make it to the plane. I was terrified. Once home, I went to our family doctor who referred me to a neurologist. He was the first of many over the next two years. I was examined, pinched, poked and tested for everything the doctors could imagine. Results always showed negative. With such odd, vague symptoms, doctors were baffled. Instinctively I knew I was dying, and I was truly frightened. I didn’t want to die! I had things to do with my life. But what was wrong?
My limitations increased to the point where I needed a walker. Without warning, I suddenly and inexplicably found myself falling to the floor. I would often narrowly miss hitting my head on the corner of a table. Matters had become dangerous. I quickly lost my ability to speak. Except for losing one’s sight, not being able to speak is the worst thing imaginable. Some assumed that because I could not speak, I must be mentally impaired. Imagine the frustration this causes! Once I had to argue down a hospital administrator who thought I didn’t know my own name! Thank God I can write notes.
Finally, an Answer
In October of 2001, Dr. Jeffery Rothstein of Johns-Hopkins University diagnosed my condition as the dreaded ALS. It was a relief to know, although I was stunned. I thought things could not get worse, but I soon found out differently. In February 2004, Charles and I lost our eldest son in a tragic accident. Stress from this took a huge toll. Events turned negative again when I developed a urinary tract infection that quickly turned into acute colitis and sent me to the hospital. For six weeks, I was at death’s door. Twice my doctor asked Charles if he should put me on life support. My family even discussed my funeral. It took three months of touch and go in the hospital, but thankfully, I eventually pulled through. I was thrilled to get home. Stephanie, our daughter, had spent countless hours researching alternative health options for me because my doctors had told me to go home and prepare to die. They reiterated there was no cure and even discouraged me from looking for alternative treatments. My primary ALS doctor said, “The disease is progressing and we cannot stop it. I will not let you suffer.” As grave as the situation was, I knew there must be something I could do.
When Stephanie sent me information about glyconutrients and said that they looked promising, I paid attention. I had grown up thinking doctors always knew best, but my doctors’ attitudes about ALS shocked me. It took courage to break out of my traditional, conservative mold and try an alternative treatment, but I knew I must if I were to have any hope of getting better – I had nothing to lose because I was on a slow but steady decline approaching death. The information I read made sense, so in October 2004, I began taking glyconutrients. Almost immediately, I had a very surprising result. To my delight, my hair stopped falling out. New small improvements followed, about 21 in all.
Dr. Hawking’s and my own experience have much in common. The main physical differences are in mobility. I can still write and feed myself, although slowly in each case. And each of us has had loving care. Yet, there is one where we have a cardinal difference: in the matter of faith. I feel I am more fortunate than he. His vast knowledge and reasoning of the Cosmos has convinced him that there is no God, and no hope for an afterlife. Thus, he looks forward to a few more measured heartbeats and then an eternal sleep. His belief leaves him without a star of hope.
I am college educated with a reasonable amount of intelligence. Compared to Dr. Hawking, however, I am a dwarf. Yet I cannot understand how he concludes that no God exists. Even though he was raised an agnostic, he does have supreme reasoning abilities. I know enough about reason to know that one cannot prove or disprove the existence of God. Yet, I have inferred His existence through miracles in plain sight. Consider a rose. Sir Arthur Conan Doyle wrote through characters Holmes to Watson in The Naval Treaty, “A rose is not an essential for life, such as oxygen and water; it is an embellishment of life.” Its color, fragrance, velvet touch, and beauty are all extras, unbidden gifts from the Lord. Only a Supreme Being would give such an extra. Indeed, a rose is as unique as a quasar, and quite as wondrous. I believe Dr. Hawking could learn much from this small wonder. Still, I do not begrudge him his beliefs. They are his “Natural Rights,” as John Locke and Sir Isaac Newton reasoned.
Some may say I have been dealt a bad hand, and from all appearances, I have. Yet, in my opinion, the most important thing is not the hand one has been dealt, but how one chooses to play the cards. People quickly learn a lot about their character when facing death. One makes life choices every day. The choices one chooses make all the
difference in quality of life. Yes, I miss my good health and active life. But, if my strong faith serves God’s purpose and inspires others
to believe, then I feel very blessed. In closing I say: Bless Him and