I have basically been very healthy all my life, despite having ADD, ADHD and Bipolar Disorder, and being diagnosed with Multiple Sclerosis at the age of 33. I have a history of good strong genes, as my multi-cultural grandparents (Hungarian, Swedish, Czechoslovakian, and one Shawnee American Indian grandmother) lived to be healthy well into their late 90s. While I was still very young, the wellness issues were thought to be just hyperactivity, as doctors at the time didn’t seem to know much about ADD and ADHD, and didn’t diagnose those conditions as such. Only as an adult when I was experiencing blurred vision in my right eye did my LA physician, Dr. Robert Brooks, correctly diagnose all of my issues - ADD, ADHD, Bipolar Disorder, as well as suspecting the blurred vision in my eye to be the precursor to Multiple Sclerosis.
In many ways, I was actually very fortunate that my personal physician at the time was both a psychiatrist and a general practitioner. He had been treating and prescribing medications for the ADD and ADHD for many years, and only more recently for the Bipolar Disorder, when I first experienced the blurred vision in my right eye. Then, after a series of physical examinations, suspecting Multiple Sclerosis, Dr. Brooks referred me to neurologist Dr. Hart Cohen, who was renowned as the best neurologist in Los Angeles.
After an additional series of physical tests as well as several MRIs and a spinal tap (that I will never forget as long as I live), Dr. Cohen confirmed the Multiple Sclerosis diagnosis. I wasn’t at that time experiencing any other symptoms of MS, and was assured that the blurred vision in my right eye, the results of Optical Neuropathy (Optic Neuritis), would almost certainly pass in a very short time. In just a matter of days, my vision seemed to be completely restored. Not wanting to resort to steroids for treatment, and being relieved that the vision problem had seemed to subside, I started on a regiment of diet and exercise, as well as a variety of homeopathic treatments that I had found in every reading source about Multiple Sclerosis that I could get my hands on.
At the time, I had been living in Los Angeles for a number of years and was successfully building businesses in real estate, construction, and land development, all under the name of Danico, Inc. I had for many years carried my own health insurance - Blue Cross of California. Health insurance had never really been an issue over the years because I had always been basically healthy. I really only kept the insurance in force fearing a possible accident or unforeseen catastrophic illness. I can remember thinking at the time that the $300 to $350 per month insurance premium that I was paying was very expensive, since again, I was basically healthy and had not made any claims against the policy. I can also remember though that when Dr. Cohen ordered the MRIs to confirm his diagnosis of MS, Blue Cross vehemently denied the claims for several months, saying that the MRIs were a “preventative” or “exploratory” and an unnecessary measure.
I was left feeling somewhat helpless - as if possibly I wasn’t worthy, or didn’t deserve the health care that I required - and felt betrayed by the insurance company that I had trusted and supported for so many years. I even began to question the loyalty of my friends and family, not that I wanted any sympathy, but having always been so self-sufficient and helping of others, perhaps I now felt that they should all be supporting me more than they were. Strange things go thru one’s mind when they don’t feel well and are uncertain about their future. Today I was managing and getting along fine, but what would tomorrow bring? A very similar feeling was realized in the movie John Q when the father was told that his son’s needed operation would not be covered by his insurance policy, even though the father knew that he had the insurance in force for many years. The father was not only disgruntled with the insurance company, and hospital administration, but seemed to be extra agitated toward those closest to him (2002 Film: John Q). When one trusts an insurance company, or anyone for that matter, and that trust is lost, a patient like myself, feels violated - like a dog that has been provoked, he may lash out and bite anyone.
Like most people, I had always thought of insurance as protection - thinking that I had paid for a policy and the insurance company would be there for me if and when I needed them. Only in years to come would I realize the great deception that the insurance companies had perpetrated on me and many others. Every year thereafter Dr. Cohen would order another MRI to check the progression of the Multiple Sclerosis, and every year Blue Cross would again deny the claim, and I would have to fight with them with threats of legal action. Finally, they would capitulate and pay. Similar situations were seen in the movie Borderline Medicine when time and time again insurance companies would initially deny their policy holder‘s claims (1990 Film: Borderline Medicine). Too often, needed treatment would come too late as the patients would wait for their insurance companies to agree to pay for the needed treatment and/or services.
Initially, the MS symptoms were always mild and manageable. In time however, I would experience severe muscle spasms, awkwardness or decreased coordination, fatigue, stuttering, slight episodes of blurred vision, and other related MS symptoms. As the years continued to pass, the MS exacerbations continued to be mild and manageable, never interfering with the running of my businesses. In the back of my mind however, I always had the memory of Dr. Cohen telling me that inevitably, “If something else didn’t get me first, in time the MS would probably attack my bladder function.” When I turned 52 years old, I noticed that I was beginning to experience problems urinating. It didn’t happen everyday, so not wanting to hear the worst, I delayed going back to Dr. Cohen for awhile. In no time at all, I was having difficulty going more often than not. Then one day without warning, at the most inopportune moment, as if someone had pulled the cork, my bladder suddenly let go with what it had so long been retaining.
From that time on, I would have a strong-sudden urgent need to go whenever - never at a convenient time. It was so uncontrollable, even if a bathroom was within a few feet, it was never close enough. It was as if someone had turned the faucet wide open. My bladder had become over-compliant, and then just the opposite, and the independence I had always known had been stripped away. I was now dependant on doctors and hospitals on an all too regular basis, and like the main characters in Jan Hoffman’s article, Awash in Information, Patients Face a Lonely Uncertain Road, I was now uncertain as to what my future would hold or how I would ultimately learn to deal with my medical condition (Hoffman: 2005). I realized that no matter how competent my own doctors and medical specialists were, I now had to assume the responsibility to educate myself so that I could make the right decisions about my future medical treatment and care.
One of the more memorable as well as enjoyable elements of contending with the MS was the prescribed bicycling in order to help reestablish my balance. I had a small bicycle that would fold in half and fit into the trunk of a car. On weekends, I would take it to Venice Beach where I could ride on the bicycle paths. I knew that if I crashed - and I always crashed - I would just go into the sand. I didn’t even have to suffer humiliation from the fall as Venice Beach is such an outrageous place, no one ever even looked twice. After a few of those dives, I’d pick myself up and brush myself off and head to one of the many boardwalk cafés for a lunch and a nice stiff drink or two. After all, I deserved a reward for what might have been a catastrophic injury. It never was though, and next week I’d be back at the beach with my bike.
Even though I had my share of illnesses over the course of my life, even some that were chronic and always being treated, I was always none the less self sufficient and not at all accustomed to playing the sick role. As in the Benedict article, In the Hospital, a Degrading Shift from Person to Patient, with the seriousness of my current medical condition, I felt all the degradation & humiliation that went along with the transformation from street clothes to hospital gown (Benedict: 2005). Only after the fact would I learn how very critical my condition had been. One wrong decision and uremia, or uremic poisoning could have sent me into shock, or even killed me very suddenly.
To put it mildly, this sick role was not something that I at all enjoyed, however, I did surprisingly adjust much quicker than I had expected. Dr. Cohen very early on had me being treated by a urologist. I will probably never forget when the urologist had me in an operating room at Cedars-Sinai Medical Center for a Cystoscopy - that’s when the doctor inserts a tube up your penis into your bladder, that has a camera on the end, so he can see what’s going on inside. I remember the OR was very cold - with half a dozen doctors and female nurses - I was the only one that was naked. As the doctor began the procedure, I got an erection. “Try to relax” the doctor said, and I replied, “That’s easy for you to say.” By this time I was all too familiar with baring myself to the doctors and medical staff and just laughed it off by saying, “What do you expect? Handsome doctors and pretty nurses. I like everyone!” They all laughed. Making light of what could normally have been a potentially awkward or embarrassing situation was how I learned to deal with the ramifications of my illnesses. I was also fortunate to have many friends and lovers that were a great source of support, despite their emotional detachments and limitations.
Unlike the characters in the Gilman article, Disease and Representation: Images of Illness from Madness to AIDS (Gilman: 1988), or the Freund/McGuire article, Health, Illness and the Social Body: A Critical Sociology (Freund/McGuire: 1995), my medical issues did not come with any stigmas or preconceived social notions that would cause me any undue stress beyond that of the actual biomedical conditions. Although Freund and McQuire argue that as deviance from the norm, the sick role always carries with it some degree of stigma, and others may have looked at me this way, but I myself did not feel it. What I actually felt was inconvenienced more than anything else. I suppose, had I already been an old man, I would not have thought much about having to drop my pants for every doctor, nurse, or pseudo medical specialist. I have never really adhered to the old adage, “seen one, you’ve seen ‘em all,” especially when young female nurses are involved.
Together the two doctors finally got my bladder control problems under control, however, all the medical bills for the many emergency room visits, special treatments, and office visits, not to mention all the additional medications, were beginning to pile up. The best and most expensive drug, one that I continue to use today and one that has given me back my life, is a daily self-injectable called Copaxone. I call it a miracle drug and my life saver, as it should be at a cost of nearly $1,500 per month. Copaxone does not cure MS, but it greatly reduces both the frequency and the intensity of the MS exacerbations. Of course, Blue Cross denied the claims for most of the medical bills, and called Copaxone “experimental” and refused to pay for any part of it.
Long story short, if it is not too late, after paying the insurance premiums for so many years, which by this time had reached what I felt was an astronomical cost of nearly $1,700 per month, and having to always fight with Blue Cross to get the coverage my policy provided for, I finally caved and said “fuck this shit”, sold the businesses, as well as the Beverly Hills home of 16 years, let the lease on the 560 SL Mercedes expire, and put all the assets into the Corporation. I then filed for Disability under Social Security, which took more than 2 years to get approved. I now let Medicare pay for everything medical and I am very happy about it.
Three years ago I moved to Tucson to have a cheaper, quieter way of life, and when my own local personal physician convinced me to get off the golf course and go back to school and get my MD, I became the quintessential poor college student with no house, no car, and no money, which allowed me to get grants, scholarships and loans for college. Fortunately for me, the Corporation that I control has plenty of assets and covers all the costs that Student Financial Aid does not. Do I feel guilty about this? Absolutely not! I worked for almost 40 years, and although I do not believe there is any such thing as entitlement, I believe that I certainly deserve it. In addition, when I do graduate medical school, I will once again be contributing to the system and giving back at a time in my life when most people my age are retiring.
My final resolve was to eliminate the insurance company due to its refusal to honor the insurance policy I had paid for so many times over. Fortunately for me, my financial strength and ability to challenge their denials allowed me to ultimately receive the care I needed, but the entire situation left me none the less disgruntled and disgusted, even bitter if you will. Regardless, having overcome so much, I now feel relentless, and even vindicated, and hope that the “something else getting me first” that Dr. Cohen had mentioned so long ago doesn’t get me, and the Multiple Sclerosis continues to stay at bay.
Borderline Medicine. [Motion Picture] Narrator Walter Cronkite. Videocassette. Prod. Alyssa Weisberg, 1990. Dist. Public Policy Productions.
Carey, Benedict, "In the Hospital, a Degrading Shift from Person to Patient." The New York Times, 16 August 2005.
Freund, Peter and Meredith McGuire. 1995. The Social Meanings of Sickness. Chapter 6 in: Health, Illness and the Social Body: A Critical Sociology. Englewood Cliffs NJ: Prentice Hall, 1211-135.
Gilman, Sander. 1988. Seeing the AIDS Patient. In: Disease and Representation: Images of Illness from Madness to AIDS. Ithaca NY: Cornell University Press.
Hoffman, Jan. 2005 "Awash in Information, Patients Face a Lonely, Uncertain Road." The New York Times, August 14.
John Q. [Motion Picture] Dir. Nick Casavettes. Perfs. Denzel Washington, Robert Duvall, James Woods, Anne Heche, Kimberly Elise, Ray Liota. Videocassette. Prod. Burg/Koules Productions, 2002. Dist. New Line Cinema.