Good health is easy to take for granted. In our society we tend to be heavily distracted by the bells and whistles of technology and can become preoccupied by the minor mental injuries caused by a bad day. Then a moment comes along and shakes you to your core. It could be a moment of sitting in a doctor’s office hearing that tests must be run to determine whether or not you have a fatal illness. You go home and discuss the possibilities with your family and you all pull together while waiting for a diagnosis. Facing a crisis such as this can make a person evaluate what is really important. However, the time in limbo can be full of imagined horrors as well as fear and anxiety for those who may be left behind.
Imagine knowing at the age of 11 that you have 50-50 chance of developing an unstoppable disease that will cause the neurological symptoms of uncontrolled and often violent movement as well as cognitive deterioration that may render you unable to recognize your closest loved ones. This situation is what my client “Ethan” faced. His mother, Carol, had Huntington’s Disease and began a physical and mental decline when he was 10 years old. He was protected from the truth for as long as his father could allow. Carol’s onset of symptoms at the age of 41, however, advanced with such rapidity that arrangements had to be made for her care in a nursing facility. Ethan’s father and their family doctor sat him down and tried to explain the complicated truth about the disease.
Huntington’s Disease (HD) is a degenerative brain disorder that leads to dementia, uncontrolled limb and facial movements, speech changes, and an unsteady gait. A person who has a parent with HD has a 50 percent chance of having the gene for the disease. The symptoms usually begin between ages 30 and 50 but can go well outside those ages on both ends of the scale. An individual with HD in the family may be tested prior to the onset of symptoms, although it is discouraged before the age of 18. There is no known cure for HD, and currently there is no way to stop the progression of the disease, although some of the symptoms are treatable. People who test positive live with the knowledge that eventually they will need full-time care while they lose their sense of self and awareness of their surroundings. As a result, depression and suicide are common within the community of people with this disease.
Carol’s mother also had Huntington’s Disease. She was unaware that her daughter had a 50 percent chance of avoiding this disease. It was not until 1983 that the genetic marker was discovered. The combinations of symptoms that make up this disease, and the fact that HD manifests differently by individual, created confusion in diagnosis and in some cases still do. Shaking limbs, body rigidity, and memory impairment can look like other diseases, such as Parkinson’s or Alzheimer’s. In 1993 researchers found a means of testing possible carriers to determine whether they would in fact eventually develop Huntington’s Disease.
So while the teenagers around him worried about sports, academics, or petty school arguments, Ethan imagined a dark future. He swore that he would not have children. He would never put another person through this experience. Ethan admits that he hated visiting his mother during those early years while in high school. “I would get my head on straight and tell myself that mom was just away a lot. I could forget about the disease for stretches at a time. Then, my dad would make me go and see her again.” She lunged at people who came near her bed and tried to bite nurses who came in to adjust her pillows. In the cafeteria she would yell at people sitting near her and could not feed herself. Her wild jerking movements and angry disconnected words made Ethan keep several feet away from her at all times. “I hated looking at her face. She was a complete stranger.” He says that he would return home and feel hopeless. He often wondered, “What is the point?”
Ethan was told that he should not be tested until he was 18. He hated the waiting and believed fully that he had the disease. As he moved through high school, his father had many talks with him about the disease and he kept up on the latest research. He was worried that Ethan was hiding out from life and not getting involved in school. Ethan was often alone and spent most of his free time at home with his dad. Father and son had many arguments that led nowhere. Ethan remembers yelling, “Why should I care? I’m just going to end up in a nursing home!” His father would reply, “But what if you don’t have it? You are wasting your life! You need to plan for a real future!”
Testing for Huntington’s Disease includes counseling, and it is always recommended that a person get involved with the HD community when the test results for the gene are positive. The outcome either way is life changing, and some doctors say that even a clean bill of health can be alarming. As Kathleen Shannon, a Chicago neurologist stated, “People have to change their whole attitude. It has been a cloud over their heads, and now that it is lifted they think, ‘so, now what do I do?’” There is even an identity crisis that can come from the good news. The potential for the diagnosis can be with a person so long that the absence of the disease is like the loss of a dark companion. This can also be said of a disease such as breast cancer, especially when a sibling or multiple family members suffer from the same disease. There can be anger and sometimes a sense of survivor’s guilt. The determination can seem so random, and one might wonder, “why does my sister have the disease and I don’t.”
Ethan waited until he was 25 years old to get tested. After a long internal struggle, he had decided that he wanted to complete college and law school before finding out what the future held. His father was a lawyer, and it meant a great deal to him to know that his son had an education on which to rely. Ethan’s mother passed away in 1999, and in November 2000, Ethan tested positive for Huntington’s Disease.
The result was “shocking but not surprising,” according to Ethan. He stated, “I guess I always knew, but I still felt dizzy and disoriented at first. My whole body went hot.” After time alone with his doctor and his father, Ethan went home to process the diagnosis. “I sat in a chair for hours just looking at the edge of the couch. It was the first time that I felt a real connection to my mother. My anger became focused on my dad for a time. Why did they have me? Why would you put your child through this? The first six hours were horrible.” When he slept, Ethan says his dreams were filled with vague, unformed thoughts of a slow-moving monster pursuing him through dark, winding streets. He says that oddly, a few days later, he got up and went to work feeling fine. Although the doctors had confirmed the diagnosis, he left the anxiety and uncertainty behind him, which he says was a huge relief in itself. Ethan has followed the advice of his counselors and decided to get on with his life.
Although Ethan long ago decided that he would not have children and potentially pass along the disease, this impacted his dating prospects. As Ethan laughingly said, “after how many dates do you tell somebody that you have this disease and explain what it is? Is it the third date when you tell a girl that you can’t have kids?” The knowledge of the disease he carried made it too complicated to simply fall in love. He felt that he owed these girls an explanation.
There were logistical issues to look at as well. Being a lawyer and in a position of trust and responsibility, Ethan needed to set up some safeguards for himself and his clients. He began by always making sure that the people closest to him knew the early signs of the disease. Initial symptoms can be somewhat confusing, and it is possible to be hyper-vigilant about any shaking or cognitive blips on the radar. He is fortunate that his father is a lawyer and in good health. They have made arrangements for him to have access to Ethan’s office and case files in the event that Ethan cannot manage on his own. They even have backup for the backup as Ethan’s uncle is also an attorney.
Another of my lawyer clients, “Carrie,” had tested positive for Huntington’s disease and was following the nutrition plan from her physician. She was already attending a bimonthly group but became discouraged by the lack of connection between members and the growing number of people demonstrating symptoms of the disease. Carrie was treating this problem with the same intensity with which she had attacked law school. She used clear-headed analysis and intellect and made great efforts to keep herself from thinking too far into the future. She had no real family support, having taken responsibility for the care of her mother after Carrie’s father divorced her. Her mother is now in a nursing facility and cannot recognize her. She has decided not to tell her friends or her employer about her positive test results. Carrie fears that an employer would shut her down completely or be overly critical of any emotional displays. She uses therapy to work through her fears and uncertainty because she chooses to keep her medical issues private. In her case, we discussed the importance of utilizing existing resources to create a backup plan for her clients and cases.
Creating a Backup Plan
As counsel for the Administrator of the Attorney Registration and Disciplinary Commission of Illinois, John Cesario has worked with families and attorneys who have had to close a law practice after a tragedy or emergency. The goal is a smooth transition to close the law practice in a manner that avoids harm to the clients and respects the dignity of the attorney who is confronting a difficult situation. “In these circumstances, I extend my condolences and offer to help in any way I can. Our approach is to protect the clients by focusing on any ongoing or pending matters that are time-sensitive and need prompt attention.”
Cesario suggests creating a list of all pending client matters and a list of names and addresses of those persons. This list could allow someone to identify and prepare a letter to inform clients of any decision to close the law practice. Next, the attorney should prepare instructions to family or support staff identifying the title, name of bank, and account number for any client trust account. The instructions should note where the monthly statements and account ledgers for the client trust account are maintained. A client trust account is important because the funds likely belong to a client or third party. Any contingency plan should have careful instructions about the account, and the instructions should assist any person attempting to close the practice to identify the rightful owner of any funds that might remain. Lastly, the attorney should leave directions about where closed files are stored and include instructions about how to quickly retrieve closed files. Once the decision is made to close the practice, the family or a designated lawyer could generate a notice list and write to former clients to say their file is available, and if the file is not claimed, the family may destroy the file after a period of time.
This duty to plan for succession or to have a preconceived directive to family or support staff is prudent but can be a source of fear and frustration for lawyers. It is an acknowledgment of a limitation or, to some, a weakness. Talking to a supportive friend or counselor can make this process much easier.
Even minor, chronic medical conditions can have an impact on our mood. Chronic illness can make us feel out of control. This is not a familiar or comfortable position for a professional. Some professionals will seek ways to exert control over another aspect of life. It is important that these are positive choices. No matter how smart you are or how tough you are, you should talk to someone to help get through the worst of it.
None of us is invulnerable. Many of us are one serious medical problem away from financial ruin or general heartbreak. This means that we must look for help—and ask for it—even when doing so goes against all of our instincts. Whether it is a short-term emergency or a diagnosis that means a long-term struggle, there are moments that define our sense of self and our ability to thrive. The first step can be a phone call to test the waters. There are people who can help you connect to the right resources where you live. The HD Lighthouse has resources that can give hope and information on the complexities of Huntington’s Disease, including links to nonprofit support groups.