Sombre thoughts on laser surgery, eye pain and two suicides. Where do we go from here?
Two suicides were reported in the press recently.
The first was Paul Fitzpatrick, whose October passing was reported in the press (mostly Canadian and UK) as being connected to unremitting chronic corneal pain from the PRK (elective laser eye surgery) procedure he underwent 20 years ago. (He left a note.)
The second was Jessica Starr, the Detroit meteorologist who died just a few days ago. There are not many details available yet but it seems she underwent the SMILE (elective laser eye surgery) procedure just 2 months ago and was struggling with visual recovery issues and dry eye. This latter death has suddenly catapulted the issue of laser surgery and suicide into the spotlight of the US press for perhaps the first time.
I feel helpless. That’s why I have to write.
I am heartbroken for these lovely people and what they suffered. Heartbroken for children, siblings, parents, and all loved ones left behind. Heartbroken for other families whose lives have been marred by someone else’s continued suffering from laser surgery complications that eventually culminated in suicide.
And I’m hurting for the community of patients suffering from chronic corneal pain who, like me, are being triggered by these reports. At the time Ms Starr’s death was reported this week, I hadn’t yet been able to bring myself to write about Paul (whom I had known online).
But this is just too much. It’s got to be talked about, got to be written about. We have to have more conversations about the reality of suicide and what leads to it. And we have to find ways to make things better so that it doesn’t continue happening.
Because for every individual who has taken their life in the aftermath of elective laser eye surgery complications or “side effects”, there are many hundreds more who have experienced suicidal ideation and severe depression at some point during that difficult journey.
Many of us who have experienced laser surgery complications stood up ten years ago at an FDA hearing and told our stories or spoke on behalf of others who could not be there in person. We got to speak. But speaking and being heard are two different things. That day, our voices came in strange juxtaposition with polished industry apologists, most of whom would not deign to acknowledge our realities in any meaningful way. It was painfully evident even at the time that we were speaking to the air. Before and since that 2008 FDA hearing, prominent activists like Paula Cofer have fought to engage the FDA on patients’ concerns about harm incurred from elective laser surgeries performed with lasers that have enjoyed FDA approval status for upwards of twenty years.
Ten years later, the FDA’s Quality of Life Collaboration Project, the “fruit” of that meeting, does not appear to have been in any way informed by complications patients nor does it appear to contribute anything new to outcomes research. It merely echoes the provider- and clinician-centric thinking of existing publications in ways that serve them, rather than us patients. I see no evidence that patients have been treated as meaningful stakeholders in this process. This kind of long drawn out but ultimately empty “nod” to patients is a mockery of patients’ suffering and a waste of taxpayer dollars repeating what industry dollars have been doing just fine without help.
So the FDA is frankly impotent to help or protect us laser surgery patients. The industry ignores us. There is no nonprofit organization championing patients’ needs and rights. It comes back to grassroots efforts. After that 2008 hearing, I never again took any sort of active role in anything related to LASIK other than occasional blogging and, of course, talking and emailing with patients that I happen to come in contact with. Why did I step away? Frankly, because it’s not been an emotionally safe space for me, compared with the broader world of dry eye disease. Mind, there’s plenty of misery, and, yes, suicides, in the dry eye world too - but not nearly so much anger. And I feel that I can do much more useful work when my own angry parts aren’t being tapped too deeply or frequently. But once in awhile, all this feels like a copout - as though I should have done and should be doing more. This is one of those times.
Suicide after 2 months? After 20 years?
In the past >16 years I’ve seen an awful lot of people go through the aftermath of complications from LASIK, PRK and other procedures. There’s a clear pattern that emerges over time. There are identifiable periods of greatest vulnerability, where the stress is at its peak. Naturally that varies tremendously from person to person for all kinds of reasons, including, of course, whether any of their pain or vision issues are being successfully treated. But the trajectories are often so similar to each other. I tend of think of the “very high risk” period as being between 6 and 24 months with the understanding that, like any pattern, there are lots of outliers that don’t fit the pattern.
But… 2 months? 20 years? How do I even process this? How do you?
When I read about Paul’s suicide 20 years after his surgery, I was crushed, because I was thinking of all the patients who have been or are currently struggling with depression and perhaps suicidal ideation, hanging onto every scrap of hope they can find. I think of all the people in dark places I have insistently told over the years, “It gets better!” I cringe at the thought that they would read about Paul and say to themselves, “No, it doesn’t get better.” And it makes me want to shout from the rooftops, “WAIT! WAIT! WAIT! But think of all the people for whom it did get better. Please hang on a little longer!”
When I read about Ms Starr’s suicide just 2 months after her surgery (and yes, I know this is all speculation because we don’t know the facts yet, but I watched a live video of her from November and I tell you I felt like I was looking at a living reflection of my own fears back in August, September, October 2001) I was crushed in a different way. I pictured her going online as we all do to research her complications, and being overwhelmed and aghast at what she found. Being re-traumatized by others stories. Being fascinated and unable to tear herself away from what she read. Being unable to reconcile what she was reading online with what her doctor was assuring her. And on, and on, and on. Of course I have no idea what really happened. It’s just a picture in my head - a composite of others.
Because this is how it happens: People seek out help and hope from community. And the community response may hurt as much as it helps.
When we are in the worst throes of convulsing emotions (mostly fear) and endless questions while experiencing laser surgery complications, we need answers and we need to know we’re not alone. No one can possibly understand the stress from LASIK complications if they haven’t experienced it. There are so many factors. We are biologically wired to fear vision loss. We have lives, families, careers that suddenly ALL have huge question marks looming over them. Everything turns into an unknown. Recovery was supposed to be three days, then it became three weeks, then it became three months, but before the three month point we’ve probably already lost confidence that the doctor actually knows. Then there’s the practical side. Seeing well enough for daily functions. Even just worrying whether you will recognize and smile at your boss in the hallway. Then there’s pain - we won’t even go there, because it’s far too large a topic. Then there’s anger. And guilt. For parents of young children, guilt increases exponentially. I will stop here. The real list is much longer.
In that frame of mind, today, the freshly lasered with concerns may walk into a social media group. They will almost certainly gain important information and tips, and hopefully they will make a friend or two that can be supportive. But they may also start saturating in a chilling awareness of how many others there are who have what they have… but are still like that 5, 10 or 15 years later. Worse, they may be welcomed with what feels like a hot, arid blast about how bad LASIK is and how much we’ve been harmed and in how many ways that we were never told about and how evil the industry is. And this is supposed to help them how exactly?
Re-traumatization of the traumatized is a very real and very worrying phenomenon in social media medical groups, and, in my opinion, laser eye surgery is a prime example. But I’ve seen plenty of it in my dry eye world too. Just not so much anger, unless of course it’s from an elective treatment.
How do we heal in community without hurting each other?
That’s the question I am pondering. I would love to hear ideas, and to get more dialogue going. I’m not personally interested in working on a “down with LASIK” agenda. It’s just not a type of work that resonates with me. But… surely there is more that can be done so that we patients can help each other more effectively and so that we can open more doors for motivated doctors to help us too.
And that’s really one of several driving forces behind my starting The Dry Eye Foundation. To forge better community connections. To help facilitate solid support systems and resources for patients who are struggling. To scope out what can be achieved to strengthen relationships between patients and doctors. I know there is a ton that can be done and, God willing, will be done in the dry eye world. In the LASIK world, the obstacles are far larger. But in those places where patients are hurting the most, there is the most need for the hard work to be done. The question I’ve been wrestling with this week is, am I willing to step back into those emotionally unsafe places to try?
I circle back to hope. I know it to be true.
I interact frequently with people who are or have been suicidal or who are experiencing or have experienced suicidal ideation because of corneal disease of some kind - usually either dry eye pain or corneal neuropathic pain. The dark, dark place where today’s suffering is extrapolated out into the indefinite future is formidable and extremely frightening.
I’m not a suicide line. I have no formula to help anyone push through the worst and no vocation for arguing them out of suicide. All I ever have to offer is my humanity and faith and experience and observations of others over the years. When someone ends up on the other end of my phone (or, as happened recently, walks in the door) that sounds like they might be overtly suicidal, I pray silently, and I just try to intuitively navigate my way to what need they might have in that moment that I could speak to. If they have felt safe enough with me to level with me about where they’re at, I don’t want to dishonor their trust or dismiss their reality by treating them like a prevention project. I don’t know that I can do anything helpful at all other than, essentially, joining hands to share their pain with them for that short space of time.
In my heart I know there is hope for every one of us and that hope is real and I stand by it.
But people can become exhausted reaching for hope and that’s real too. I think of Ashu who died in 2004. He had eye issues that were very, very similar to mine, and we both underwent a failed corrective surgery with the same surgeon. The technology did not exist that could surgically fix our vision reliably. And as for the dry eye and neuropathic pain, we didn’t even have terminology to describe it back then.
Truth be told, the LASIK world, at least in the US, does not appear to care about us any more now than they did then. But the dry eye world stands in delightful contrast. The dry eye research world has sat up and listened, and how! The TFOS Dry Eye Workshop report in 2007 barely mentioned pain at all, while its 2017 sequel, TFOS DEWS II, had an entire sub-report with 543 medical references devoted exclusively to pain and sensation (it also specifically notes ophthalmology’s history of ignoring pain) as well as another sub-report dedicated to iatrogenic, or medically-induced, dry eye, including laser surgeries. It’s no longer Perry Rosenthal fighting to forge paths - it’s clinicians and researchers all over the world. Every dry eye doctor I talk to is more attuned to pain today than they were five years ago. This is progress, and this is hope. - Meantime, if surgical treatments for our laser surgery vision issues have not materialized, specialty contacts that can treat our vision non-invasively have. It’s been interesting seeing so many of us LASIK “old-timers” migrate into various types of scleral lenses, one after another, as these lens technologies improve. Again, this is a part of the medical world that is truly motivated to help us. This is hope.
These are just a couple of examples of reasons to hope.
But I’m not so sure we even need technical grounds to hope. I think we just need… Hope.
Be well, everyone.
PATIENTS: We need you to tell your stories!
Please visit dryeyestories.com and contact Aidan about submitting your story. NO, it is not enough to have stories in Facebook groups and forums. We need a permanent, readily accessible repository where everyone from the public to doctors to regulatory authorities can learn about the realities we face.