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Thursday, January 3, 2019

Smell disorders: When your sense of smell goes astray

While speaking as a panelist on substance use disorder (SUD), I felt it necessary to remind the audience that addiction is a family disease. While family members may not themselves be tethered to use of a substance, we all share in the anger, guilt, despair, and all too often grief that ripple back and forth in a family’s encounter with SUD. I learned early on, “Addiction isn’t a spectator sport, eventually the whole family gets to play.”
What may be harder for some to understand is that the “sport” gets played for a lifetime, even by generations to come. I am reminded of a line near the end of Robert Woodruff Anderson’s play I Never Sang for My Father, “Death ends a life, but it does not end a relationship, which struggles on in the survivor’s mind toward some final resolution, some clear meaning, which it perhaps never finds.”
The struggle to find some resolution to loss due to SUD may take the form of rotating graveside arrangements, memorial gardens or park benches, sponsored public talks, races, and fundraising benefits. These are but a few of the ways families devise to remember a loved one and contribute to the common good in their name.
Unfortunately, the struggle toward resolution can also result in blame, alienation, family disruption, and divorce. The disease has a way of finding its way into the weak spots of a family fabric and causing rot, unless and until the aftereffects are tended to and we find some way to make meaning from a loved one’s overdose death.
One disruption that is almost certain to appear is the alteration of a family’s calendar. While always a constant, grief finds a way to manifest itself in anniversaries new and old — certainly on birthdays, or with an empty chair at holiday tables (a practice some families observe not only in name but in deed), but also the memory of the day someone overdosed, or the last memory of sobriety. The scar of a horrifying discovery or a dreaded telephone call now mars Christmas Day, a wedding anniversary, or what would ordinarily be a celebratory family event.
For me the fall was always a happy time, ever since my early adolescence when I began to play soccer. I’ve played, coached, or been a referee every fall for 50 years. Exactly six years ago, even the same day of the week as I write this, I refereed a game on a bright October Saturday morning. That evening I discovered our son, William, overdosed in our living room. His last words to me as he shut the door were, “I’m going to watch some TV.” There was no mention of injecting heroin. Six weeks of comatose hospitalization followed before he died in our arms.
Every year since, the fall darkens not just with the loss of daylight, but also with the loss of a beautiful light in our lives. William’s November birthday, Thanksgiving, the day he died, the date of his memorial service — all combine to create a season of grief for our family. Nieces who will know him only through photographs and stories will sing him “Happy Birthday” on a day that is anything but happy for those who knew and loved William. Soccer, a sport I love, now competes with a deep seasonal gloom.
The philosopher Arthur Schopenhauer famously said, “All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident.” Despite all the loss and suffering, all the beautiful memorials, and all the work of many grieving families and advocacy groups to enlighten us, I fear our society lingers too near stage one, ridicule. Ridicule prolongs shame and stigma, and serves to perpetuate our seasons of grief.

While studying brain injuries in the mid-1990s, I began volunteering in a domestic violence shelter. I noticed that the abuse and problems many women reported were consistent with possibly experiencing concussions. Women reported many acts of violence that could cause trauma to the brain, as well as many post-concussive symptoms. Shockingly, my search for literature on this topic yielded zero results.

When I decided to focus my graduate work on this topic, I was even more shocked by what I learned from women who had experienced intimate partner violence (IPV). Of the 99 women I interviewed, 75% reported at least one traumatic brain injury (TBI) sustained from their partners and about half reported more than one — oftentimes many more than one. Also, as I predicted, the more brain injuries a woman reported, the more poorly she tended to perform on cognitive tasks such as learning and remembering a list of words. Additionally, having more brain injuries was associated with higher levels of psychological distress such as worry, depression, and anxiety.

When I published these results, I was excited about the possibility of bringing much needed awareness and research attention to this topic. Unfortunately, over 20 years later — despite the plethora of concussion-related research in athletics and the military — concussion-related research in the context of intimate partner violence remains scant, representing a barely recognized and highly understudied public health epidemic.
What do we know about intimate partner violence-related traumatic brain injuries?

First, we need to understand that an estimated one in three women experience some type of physical or sexual partner violence in their lifetimes. IPV is not a rare event, and it traverses all socioeconomic boundaries. It is the number one cause of homicide for women and the number one cause of violence to women. For many reasons, including the stigma of being abused, many women hide their IPV — so the chances that we all know personally at least a few people who have sustained IPV are quite high.

Though we lack good epidemiological data on the number of women sustaining brain injuries from their partners, the limited data that we do have suggest that the numbers are in the millions in the US alone. Most of these TBIs are mild and are unacknowledged, untreated, and repetitive. Consequently, many women are at risk for persistent post-concussive syndrome with completely unknown longer-term health risks.
What are the signs and symptoms of IPV-related TBI?

A concussion, by definition, is a traumatic brain injury (TBI). All that is required for someone to sustain a TBI or concussion is an alteration in consciousness after some type of external trauma or force to the brain. For example, either being hit in the head with a hard object (such as a fist), or having a head hit against a hard object (such as a wall or floor), can cause a TBI. If this force results in confusion, memory loss around the event, or loss of consciousness, this is a TBI. Dizziness or seeing stars or spots following such a force can also indicate a TBI. A loss of consciousness is not required, and in fact does not occur in the majority of mild TBIs.

There are often no physical signs that a TBI has occurred. Recognizing that an IPV-related TBI has occurred will typically involve asking the woman about her experience following a blow to the head or violent force to the brain, and then listening for signs of an alteration of consciousness (such as confusion, memory loss, loss of consciousness). Within the next days or week, a range of physical, emotional, behavioral, or cognitive issues may indicate post-concussive symptoms that could include

If a TBI is suspected, a woman should see a doctor if possible. Sustaining additional TBIs while still symptomatic will likely increase the time to recovery, and possibly increase the likelihood of more long-term difficulties.
What can we do?

An important component of addressing IPV-related TBI is to raise awareness and destigmatize intimate partner violence. IPV is unfortunately quite common, and some estimates suggest that millions of women may be sustaining unacknowledged, unaddressed, and often repetitive mild TBIs or concussions from their partners. Talking openly and honestly about this problem, especially in cases were abuse may be suspected, is critical. As we open up this conversation about the commonality of IPV with nonjudgmental acceptance of a woman’s experience, we will be in a better place to hear, understand, and support women who may be unknowing members of this invisible public health epidemic.

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