Now, imagine that photo being torn in half. No matter how hard one tries to repair it, the damage is transparently obvious; this woman cannot be put back together again. Jean Smith, at 54, has irreversible damage to her frontal and temporal lobes.

This case is a tragedy emotionally, psychologically, physically and financially. Jean's husband, James, had to sell all her assets to qualify for Medicare. He had to hire lawyers: one to make him Jean's guardian, and one to fight Social Security's attempt to take his 40lK. After surviving this conflict, James realized that the long-term care facility was a misnomer, since Jean soon became semi-comatose. Consequently, he has had to hire malpractice lawyers who are fighting to fund the cost of Jean's home care. Although James is her primary caregiver, he must also work full-time, in the business world, to support them. Jean is in adult day care, because neither the insurance company, nor social services, will pay for home nursing.

Yet, as black and heavy as this nightmare has been for the whole family, spangles of sun have danced their way through to provide some respite. The friends of Jean Smith had a fundraiser that helped offset the cost of home care, and the response was overwhelming. They raised $23,000 that has helped with the cost of day care. Unfortunately, as this fund dwindles the stress level starts to rise, and the nightmare continues. Jean has been home for 8 mos. now and goes to Adult Day Care. She is totally dependent.

The nightmare began during Easter weekend 1999, when Jean complained about an infection. She thought the cause of the infection was antibiotics administered to fight bronchitis. Jean's disease began with flu-like symptoms of fatigue, fever, and vomiting which were then followed by loss of memory, anxiety, and agitation. It was this change in behavior that alarmed her daughter and husband. I knew my mom hadn't felt well over the weekend so I said, "Mom, do you need a doctor?" She replied, "Yes." I called her longtime doctor from Washington, D.C. and he told me she had called him and he asked if she'd been drinking. She said, "No", so he told her to go to the hospital.

In the meantime, my husband called my stepfather and told him to get home. My mom had already driven herself to the local hospital, Anne Arundel Medical Center by the time I called her. She was combative and pulled the IV's out and said she was going home. The doctors thought she had had a mini stroke after they checked the cat scan. They told my stepfather he could keep her there overnight for observation, but mom was so insistent on going home, my stepfather agreed to let her. I was upset and told mom so. She said, she'd be okay. The following day, I called her doctor again and told him what happened. He said to either get her back to the hospital or call a Neurologist. After getting in touch with a less than nice person at the hospital, I quickly found a neurologist locally who agreed to see her that day. I just wanted to get mom help.

By Sunday, she had a 101 fever and felt she should go to hospital. But once there, she decided to go home with my stepfather. They reside in Annapolis, MD. The following day, she convinced my stepfather to go to work and she'd call him if she needed him. On Tuesday, my stepfather, Jim took mom to the Neurologist. The neurologist did not schedule an MRI until the following day. However, when I finally arrived at mom's house, I knew things were wrong. I called the neurologist late that night and said I thought mom should go to hospital. He asked if she had a headache and I told him I didn't know, she couldn't really tell me. He said to just check her every hour and take her for an MRI early in the morning. We did. By then, my mom got dressed and then put one of stepfather's shirts over her own. She was very sleepy and kept saying as we drove her to MRI, "This is crazy, ridiculous." When we got there, mom could not sign her name initially, I just kept crying.

Things were not right. Afterwards, we rushed the MRI to the neurologist who announced to us that mom had stroke to left side of brain and she needed to be admitted to hospital. We took her to Anne Arundel Medical Center. By now mom was so out of it. She did however, say to me, "Are you going to be okay, you're my best friend", before she became almost unconscious. For the next 6 days my mom lay in a hospital being treated with heparin for a stroke. We kept asking why she had a stroke and the doctors weren't sure, saying "maybe it was high blood pressure or cholesterol", but her doctor in DC didn't think they were that high. I did ask the neurologist if he checked mom for meningitis or encephalitis and he said he did not find it necessary. I took him for his word. I had no idea what either of those things were and did not have access to a computer. I was just in shock.

We spent every night at the hospital the first week. Jean had to be put in restraints the first night when she said she wanted to go home. From there on, we just wanted to get Jean out of this hospital and to rehab. So on Monday, we went to the National Rehab hospital in Washington, DC. They said she was aphasic, etc. I told them her voice had become hoarse. They did another catscan but didn't see any more damage. By Wednesday, an occupational therapist noticed mom was having a seizure. She was sent to the adjoining Washington Hospital Center where immediately they did an MRI and lumbar puncture (had never been done). They told us they believed mom had encephalitis and started her on acyclovir, but this was 8 days after mom had been admitted to hospital and 13 days after symptoms of flu had begun. Not good. She was on acyclovir for 3 weeks and was bedridden and only slept a lot. I felt she was in a semi-coma. The doctor would have to tap her chest to get her attention sometimes. My mom spent 7 mos. in a sub-accute/nursing facility before we could actually get her home or into rehab. I tried diligently to get her back into inpatient rehab but all facilities I tried said she was not following enough simple commands. My stepfather had to continue working.

Jean's mind started to deteriorate rapidly: her memory was chaotic, her speech was confused, and she no longer recognized her family. Even after admittance to the hospital two days later, and an MRI, the neurologist insisted that she had suffered a stroke to the left side of the brain. Not only was she treated for six days with heparin (a blood thinner) instead of Acyclovir (a drug that fights the symptoms of this disease), the neurologist considered a spinal tap to be unnecessary. Jean's daughter asked if perhaps she should have a spinal tap to rule out meningitis and encephalitis, to which the doctor answered in the negative. Later we discovered that, in suspected cases of encephalitis, a lumbar puncture (spinal tap) should be taken immediately and a sample sent to a virus laboratory for examination by PCR (polymerase chain reaction). According to Dr. Graham Cleator "a definitive aetiological diagnosis can be produced within a matter of hours, and an accurate diagnosis is possible on the first day or two of neurological illness i.e. when the patient may only be showing minimal symptoms." Although her encephalitis is considered rare, it is also a textbook case (all her symptoms are spelled out on the internet).

Because the Anne Arundel Medical Center never performed the lumbar puncture, and her case was misdiagnosed, Jean spent six days at this facility without the benefit of acyclovir, a drug that is central to the treatment of herpes simplex encephalitis. Thus, after eight days Jean, wearing a catheter, was transferred to the National Rehab Centre in Washington, D.C. That evening she suffered a seizure and was rushed to the Washington Hospital Centre. The emergency room doctor immediately consulted with a neurologist and an infectious disease specialist who was shocked to discover that a spinal tap had never been taken. Once they assembled all the clinical data (including an MRI and a lumbar puncture), they quickly determined that Jean had a rare form of encephalitis - herpes simplex. Sadly, because Jean had not received the proper treatment, she suffered bilateral damage to frontal and temporal lobes.

During her stay in the hospital, Jean had three infections, suffered weeks of horrible diarrhea, and had a clot removed from her lung. Three months later, when she was transferred to a longterm care facility, she could not walk or talk and was totally dependent on others for her care. The insurance company denied requests for both home care and inpatient rehab at Johns Hopkins Hospital (this rehabilitation was recommended by the neuropsychiatrist). It is unfortunate that so many long-term care facilities are understaffed and overworked. Jean was a victim of this impoverished care and continued to deteriorate. Her physical therapists were her husband and daughter. Because of the friends of Jean Smith and their overwhelming generosity, her husband finally succeeded in moving her home.

At home, Jean was under the care of a home aide. Jean became more lethargic and less inclined to follow simple directions. It was determined that Jean would make better progress in an Adult Day Care Center. Because Jean's neurological problems cause her to put everything in her mouth, and to roam constantly, this center could not adequately meet Jean's needs. Consequently, James found another center in Annapolis that Jean attends whilst James is at work. Jean continues to see a neuropsychiatrist once a month to determine what medicines may improve her condition. She has been on several anti-depressants and anti-psychotic medicines, but there appears to be no improvement. Moreover, because Jean cannot communicate, no one can determine if they help or hinder. She continues to be confused, frustrated, and angry and her memory is limited. Additionally, she cannot use her right arm, she has periodic moments of lucidity, she sometimes yells, and she is totally dependent on her husband for her daily care.

My stepfather did get mom walking again with no real help from the therapists. They would give up very easy. Mom did go to Center for Neuro Rehab for a month or so on outpatient basis but that was discontinued because they could not prove to insurance co. that mom was making enough progress. Mom sees a neuropsychiatrist at John's Hopkins every other mo. and we try different meds to help her possibly focus and not be so anxious. Nothing really seems to work much. She is incontinent. She speaks some and but does appear to be aphasic and can't name objects. She keeps saying she wants to go home, even though she is home. Since this tragedy, we have discovered many other Encephalitis victims in this area. Fortunately, they received immediate proper care, and have resumed a normal life. However, Jean will never be able to climb out of her chaotic hell. She will never be able to give fun dinner parties. She will never be able to understand how generous her friends have been. She will never be able to share insights with her daughter Jale. She will never be able to have late night tête-à-têtes with her husband James. She will never be able to have grandmotherly conversations with her adorable granddaughters, Amanda and Sydney. My mom loved her grandchildren so much and it pains me that they're starting to forget all the times she cared and played with them. I love my mom very much. I'm an only child. I know that my stepfather has put his life on hold and is very optimistic for mom. He doesn't give up hope and he looks to the future whereas I keep playing the early events over and over again in my mind hoping to change what has happened.

We've been told she has dementia. She tends to put things to her mouth that are not edible. She can eat on her own but tends to use her hands. She looks suspicious, scared and anxious a lot. Screams out sometimes. Every once in awhile, we'll see the real Jean peak out and say, "I love you, etc" She seems to speak best on phone but is anxious to get off, maybe so you can't tell her full disability. At any rate, I love my mom very much and I'm so sorry that all this has happened to her and we couldn't have gotten her a spinal tap and on acyclovir right away. My mom feels she needs to be somewhere all the time, but not sure where. Her memory is minute to minute. Therefore, she knows something is wrong but forgets what has happened to her. I called her the other day and asked how she was and she said, "Everything is wacko." It sure is. What I've learned from all this is that I should never take anyone for granted

Jean's story is important in that it may help others who contract this disease. If the general public is informed of the symptoms, and the medical staff is made aware of the warning signs, perhaps Jean's suffering will serve a purpose.