Wrestling with the “What If” Questions and the Need for Full Disclosure

Photo: Traci Cleverley Pink

My wife, Traci Cleverley Pink, passed away from SUDEP in November 2011, barely three months ago at the time I’m writing this. The pain of losing her is still fresh, and raw. I have been fortunate in receiving a great amount of love and support from family and friends, to help me get up and carry on living. I have also found comfort from writing about my experiences.

I’m writing this article to bring a personal perspective to SUDEP and to urge everyone affected by epilepsy, whether you yourself have the condition or a family member has it, to find out more about SUDEP and understand the risk factors involved. A risk factor is a characteristic that increases the chance that SUDEP will occur. It is important to know what yours are so you can take the necessary actions to safeguard your, or your loved one’s, life.

When I read the book ‘Sudden Unexpected Death in Epilepsy: continuing the global conversation,’ I was struck by the awful tragedy of every young life lost and profiled in the pages of this book, and the striking similarity of so many of the stories.

Most family members who have lost a loved one to SUDEP had either no idea, or only a vague notion, of the risk of death inherent in an epilepsy diagnosis. I’m sure most, like me, if they thought about it at all, understood that a person with epilepsy’s risk of death stems from secondary factors such as respiratory failure from a blocked airway, or a head injury resulting from a fall during a tonic-clonic seizure. No one that I have read about seemed to know an estimated 18% of all deaths of people with epilepsy are attributed to the mysterious and unexplained phenomenon of SUDEP.

It’s impossible to say for certain if greater awareness of SUDEP by family members, and by the loved ones themselves, could have prevented some, or any, of these deaths. There’s just not enough information available yet.  But what is important is that people with epilepsy understand the reality of SUDEP so that they can make their daily decisions fully aware of the risks involved.

What is painfully evident is that medical practitioners, be they specialists or general physicians, as well as family members and people with epilepsy themselves, all need to talk about SUDEP. The culture of silence that has prevailed around it has to stop. More discussion and more awareness will save lives. In my opinion, learning about SUDEP, as frightening as it may be, is the right of every person affected by epilepsy, even the newly diagnosed, and should be made absolutely standard practice. The only exceptions I can think of might be young children and people who are developmentally delayed, and in those situations I believe medical personnel have a duty to fully inform the parents or guardians.

In Traci’s case, I can honestly say that we never discussed SUDEP. Was she herself aware of it? The only tangible evidence I have is a link I found on her laptop to an article about mortality in epilepsy. I have no doubt that she knew about it; we even talked about it when 15-year-old Jordan Fawcett’s death from SUDEP was covered in our local newspaper, but I cannot say how extensive Traci’s knowledge was. It’s possible she may have thought she was at a lower risk than she really was, or she may just have decided not to concern herself with it.

As I’m sure is true of many grieving family members and friends who have lost someone to SUDEP, I have tortured myself with “What if?” and “If only?” questions, until finally accepting that there is truly no way of knowing for certain how, or even whether, Traci’s death could have been prevented.

However, I am very familiar with Traci’s seizure triggers, having witnessed numerous seizures over the years we were together, and seen many more occasions when she had what she called the “heebie-jeebies” - myoclonic jerks, to use the medical term - and quieted herself in order to prevent a seizure from occurring. Due to that familiarity, I have an understanding of what led to Traci’s fatal seizure. Having reconstructed what actually occurred, I can also imagine an alternative scenario in which Traci, with full conscious awareness not only of her own seizure triggers but also of her relatively high risk of SUDEP, makes different choices on that particular day, and lives.

As noted previously, everyone has different seizure triggers, and not everyone can avoid seizures just by making different choices. But many people with epilepsy do have that ability, and it’s those people in particular I am addressing here. I hope by describing Traci’s situation in detail, others may be able to reflect on their own seizure triggers and consider what they need to do to minimize their risk.

Virtually all of Traci’s seizures occurred within 30 minutes of waking, generally in the morning but occasionally after a nap. Much of the time her early warning system - an “aura” or the “heebie jeebies” - kicked in and, if it didn’t stop the seizure from occurring, at least she was able to lie back down and have it in bed.

Traci was taking Lamotrigine under supervision and had found a dosage that seemed to be working very well. At the time of her death, it had been at least ten months since her last seizure.

Unlike most SUDEP cases, Traci’s death did not occur at home. She had been working for a few weeks at an island resort which required her to live in residence for up to ten days at a time. She found the work, dining room service and housekeeping, to be tiring but rewarding. She was pleased to have found a job that was within her physical capability, and to have a room all of her own, looking over the water, to write and draw in.

Through conversations with her co-workers, who were absolutely devastated by her death, I have been able to re-construct what happened the day that she died. She was found collapsed in the staff bathroom late in the afternoon, around the time she was expected to begin her evening shift. Apparently she had told someone earlier in the afternoon that she was feeling tired and was going to have a short nap. Beyond that, all we know for sure is the result of the autopsy, which concluded that she had suffered a fatal tonic-clonic seizure.

I can only speculate, based on how well I know Traci, that she overslept, and woke up in a hurry to get to work. She was always so dedicated, every place that she worked, and never wanted to let her co-workers or supervisors down. She might have felt an “aura” indicating a possible seizure coming on, and if so might have tried to calm herself and get it under control, or she may have just risen quickly and flipped the “seizure switch” in her brain before having a chance to realize it was happening. Rising quickly, especially after a short but deep sleep, was never a good idea for her.

If, in those moments of deciding to get up quickly and go to work, the only risk that Traci was considering was that she might have a seizure, I can see her weighing those odds and deciding to take the risk.

What I cannot help but wonder is whether she might have made a different decision that day: if she had discussed the possibility of SUDEP with her physician; if she had known she would have been considered at medium-to-high risk; if she had been aware of the ways she could have lowered her risk; if we had talked together about it; and if she had had all these considerations to weigh up as part of her decision-making.  Then, I can imagine the seizure that caused her death might never have happened. But that is a lot of “if’s.”

I share this speculation to hammer home the importance of taking precautions to minimize seizures.  Also, to convey the importance of discussing the difficult subject of SUDEP with doctors, loved ones, friends and co-workers - even if it means inconveniencing or upsetting someone, restricting freedom or losing employment over.

But, of course, there is the other side to the argument, suggesting that people with epilepsy should not have to live with the fear of death or deal with the inconvenience and invasion of privacy required to be constantly monitored. Surely, though, there is a happy medium. At least, if the risk is clearly understood, a person with epilepsy can live life relatively normally, with extra caution only as warranted in their particular circumstances and in situations where they know they are at greater risk than usual.

Only through full disclosure and heightened awareness will people with epilepsy be empowered to make fully informed decisions and lifestyle choices, will the rate of SUDEP start to decline, and may the cause and prevention of SUDEP eventually be revealed.

 

Doug Cleverley is a professional event planner and writer. In his blog, Valley Road Rambler, he explores the territory that grief is taking him through, profiles his life with Traci, and examines other topics of personal interest. His blog’s address is valleyroadrambler.wordpress.com