Lazy and Crazy

I come from one of those Southern families who don’t and won’t talk about family history that “puts them in a bad light.” “ We don’t air our dirty laundry out in public,” I’m told. “Why are you asking about that?” is the response I get if I inquire about a vague memory from childhood. I will probably have hell to pay once family members read what I am about to write.

When I was about nine years old, my beautiful Aunt Ernestine (we simply called her “Tine”) from New York, came down to North Carolina to stay with her sisters; my mother, who is the middle child of seven full biological children, and my mother’s older and a younger sister. (I won’t divulge all the names. I already have hell to pay.)

Aunt Tine had emigrated to New York years earlier when she was a teenager and had lived in New York all of her adult life. She was married and had one daughter – that we acknowledged. She also had a son from a previous relationship. (I can only guess that her son was from a previous relationship because, again, we’re not supposed to talk about it.) The son , my cousin, was raised by his paternal grandparents, I believe. (Again, I can only guess.)

Aunt Tine was having some medical problems and the “incompetent” doctors in New York were unable to tell her what was wrong. She suffered mood swings at times, was unable to walk at times, was in pain at times, was unable to feed herself at times and she shook as if she had Parkinson’s Disease. To my knowledge, the doctors in North Carolina were also unable to tell the family what was wrong with Aunt Tine.

Since becoming an adult, I have inquired as to the nature of Aunt Tine’s illness and have asked for details of the time she lived with us when she came down from New York but I’ve simply been told that no one knew exactly what was wrong with her. It was speculated that someone put “roots” on her. In the South, when someone has an illness that can’t be identified the default diagnosis is the all-encompassing, menacing “roots”. Aunt Tine passed away in 1990, I believe. I do not remember the exact date or even the year. It would not be prudent for me to ask any family members about Aunt Tine’s illness or death at this juncture. (“Why would I want to know that for? She’s dead now and there’s nothing anyone can do for her now.”)

Through the years, beginning when I was a teenager in high school, I suffered bouts of depression, frequent headaches, aches and pains, intermittent rashes, vision problems, hearing problems, memory problems, cognitive problems, and a myriad of other symptoms which taken alone, tend to be rather benign. I’ve visited doctor after doctor and each symptom was treated individually and no doctor ever inquired as to other symptoms I was experiencing at that time or in the past. Nor did I volunteer any information about other symptoms. Nothing seemed to be related in my mind, so why mention any of it to a doctor.

I’m a pretty hard-driven, type A personality, juggling many projects at once and the headaches and depression were always attributed to stress. I read a lot and the vision problems were related to eyestrain. Some days I’d be as sharp as a tack. I could recall facts and figures as if I had a photographic memory. I frequently watch Jeopardy and I amaze myself at my knowledge and often wonder “How the hell do I know that?”

Other times, I could barely remember how old I was. I’d be out driving in familiar places – places I go frequently throughout the week- and have no idea where I was. On several occasions, I’d drive around completely lost and I’d somehow find my way back home. Some days I could work out complex mathematics problems with very little effort. Some days I’d need a calculator to simply add two digits.

Some days I would be so articulate and so creative that I would even impress myself. I’d be extremely witty and clever and would say things that would amuse even the funniest comedian. Other days I could barely put a sentence together. I’d slur my words as if I’d been drinking. I’d stutter and be unable to get my thoughts together. I would often feel like Professor Sherman Klump, the Eddie Murphy character from the movie, “Nutty Professor”. It is so frustrating to know that I know how to do something and just be unable to do it. I wondered if I had attention deficit disorder. I wondered if I were schizophrenic or had multiple personality disorder. The smart personality can do calculus, but the retarded personality can barely put two words together. The smart personality knows several languages and can program computers. The retarded personality can’t even send a document to the printer.

In my mid-twenties, I was diagnosed as being bi-polar. (Truth be told, I told the doctor that I thought I was bi-polar and he agreed. I made his job so easy. I walk into his office and say, “Dr. Smith, I think I am bi-polar."

“Yep. You’re bi-polar. Here. Take these pills and come back to see me in a month.")

Truly, I only suffered mood swings. I’d be so depressed that I could do nothing. I was unable to get out of bed. I felt so very tired. I hated myself for being unable to function and juggle all the responsibilities I had. This feeling would further spiral me down into the depths of intense sadness.

Fortunately I didn’t have children to take care of during the times I was unable to even take care of myself, but I did eventually become a mother to two beautiful and wonderful children. There were many days that I could do nothing but stay in bed or lie on the sofa. My teen aged daughter’s code word for me with her friends was “couch”. Fortunately, my daughter and son are relatively well-adjusted. Life continues to throw curve balls at us all and we somehow manage to get a base hit on occasion, but there have been so very many strike-outs. Every blue moon, one of us will manage to slide into home, get our uniform dirty, but score a run nevertheless.

There have been times that I would feel so great and be so productive and creative that I felt I couldn’t even keep up with myself. Juggling all those balls and keeping them in mid air! I was told that the aches and pains were related to exercise, advanced age (now that I’m 47), hypochondria, craziness, wanting attention, laziness, skin rashes because I wasn't taking care of myself properly, and etc. No one refused to believe that I, a human being, could possibly have some type of illness. I had no recourse except to accept what I was being told by these medical professionals. I eventually dismissed the bi-polar diagnosis because I didn’t feel that a bi-polar diagnosis was quite right. I’d met other people who were legitimately bi-polar and their behavior and my behavior was dissimilar.

At some point during my adulthood, I began to see a connection between some of my symptoms and the way I felt (in physical pain and not being able to get out of bed) to some of the behavior and symptoms I remember my Aunt Tine experiencing. Had someone “put roots on me?”, I wondered. I dismissed the “roots” theory because I didn’t believe anyone could conjure up a “spell” of chicken claws and say special words over a powder to cause my symptoms. However, as Heathcliff Huxtable's granddaughter, Olivia, would exclaim, "I know my body!" I knew something was wrong with me and I was determined to find out.

During the summer of 2004, I was unable to turn my head for almost the entire summer. I thought I had pinched a nerve in my neck and I’d planned to eventually see a physician about this. I had just started a new job and was reluctant to take any time off because I didn’t want to appear lazy and crazy just because I was unable to turn my head. The pain was so excruciating that I often experienced bouts of nausea. I just kept going and going like the Energizer bunny. Miraculously, one day, after months of paid, I woke up and I was able to turn my head with no pain. It was as if the pain never existed.

In 2005, I was hospitalized due to extremely high blood pressure. My blood pressure was 200+/100+. I worked in a library at the time and we were unable to open one day because the heating and air conditioning unit was malfunctioning on an extremely hot summer day. I took this opportunity to go to the doctor to hopefully be prescribed something for the constant pain I had been experiencing for several months. Many around me dismissed the pain as being psychosomatic because I had lost my father to cancer the previous year and I this time the excuse was that I experiencing “latent grief”, manifesting itself as physical pain. (WTH?)

Tests were run, MRi’s, CAT scans, blood work was done and I was told that I only had high blood pressure and that I should take Norvasc , eat the DASH diet, exercise, have massages and resume my normal activities. When I left the hospital I could not walk. I was told that the blood pressure medication was causing muscle weakness on one side of my body.

“How could this oral medication cause weakness on only one side of my body?”, I asked. Does medication indiscriminately know to go to the left side of my body and render paralysis on only one side? Why wasn’t my right side affected as well? I was given no plausible explanation. I didn’t buy this reasoning and began to further investigate my symptoms on my own.

My young 21-year old cousin had recently passed away from Lupus in 2003. I compared my symptoms to hers and thought that I might have lupus but I’ve never had a butterfly rash (to my knowledge) and being out in the sun didn’t seem to bother me. I rather enjoy the sun. A co-worker suggested that I may have fibromyalgia. So I investigated fibromyalgia. Yes, I was tired all the time, but what woman working full-time and raising two children on her own isn’t tired all the time? I have always been anemic and have to be conscious of eating iron-rich foods and/or taking an iron supplement to alleviate the fatigue. Many of the symptoms of fibromyalgia fit, but why was I paralyzed upon leaving the hospital? I still had no plausible explanation.

I began reading stories of the actress Terri Garr, the dancer Lola Falana and the talk show host, Montel Williams and their stories were very similar to mine. Could I have multiple sclerosis? Did Aunt Tine have multiple sclerosis that also was never diagnosed? I was going to physical therapy once a week, going to a chiropractor twice a week, and seeing other doctors in between. My department at work was short staffed. I hated to be the weak link at work, giving credence to the “fact” that I was “lazy and crazy” and further burdening my co-workers. Eventually, I resigned my position at work.

I now I have no health insurance. I had no way and still have no way, of knowing if I do indeed have multiple sclerosis. I do know that I am plagued with some disease and the symptoms are not in my head. I experience real fatigue, pain, rashes, and headaches pretty frequently. My hair has inexplicably fallen out several times. I experience flu-like symptoms on occasion. I experience gastrointestinal upsets occasionally. I’ve had bathroom accidents though I do not believe that I am incontinent.

Many days I am able to function normally. Many days, I feel as though I am carrying heavy weights around. I often have trouble keeping my balance. I attribute this to adjusting the way I walk so that I don’t look like I am in pain. I remain baffled as to my malady.

Just this past summer, 2010, my mother had surgery – cervical anterior disketomy. Prior to her surgery, she suffered many of the same symptoms as me. Realizing that multiple sclerosis is genetic, I fear that she may have this disease as well. She has had several MRIs performed and was told by a neurologist that she had a slipped disk in the spinal column of her neck. My mother actually seems much worse off after having this surgery than before and I feel she may soon become confined to a wheelchair. If I am sick as well, how do I take care of her?

I often read the messages left by those who have received a diagnosis of multiple sclerosis and I can certainly relate and empathize. Again, I do not know for certain if I do have multiple sclerosis but I certainly feel the same pains and symptoms of those who do. In the meantime, I will continue to walk while I can. I will ride my bicycle and do whatever I can to find a cure for this insidious disease and find an easier more straight-forward way to determine a diagnosis. I also believe that one of the worst things about this disease is that you can look perfectly fine – perfectly healthy – and be functioning under tremendous fatigue and excruciating pain. Therefore the people in my surroundings – family, co-workers, friends, etc - and even health care professionals refuse to believe that anything is wrong.

As such, I continue to carry the world on my shoulders (sometimes it feels as if the universe is literally weighing on my shoulders) and function as if I have not a care in the world – only lazy and crazy.

Devin Shakur

April, 2011