Content warning: This post mentions suicide. If you are struggling, please dial 988 to connect with The National Suicide and Crisis Lifeline, or contact the Crisis Text Line by texting HOME to741741.
Karen and Bob’s Story
It was Valentine’s Day in 1989 when Bob Paddock struck up a conversation with his favorite waitress, Karen. Their conversation turned into a friendship, one that deepened once they began seeing each other outside of the restaurant from time to time over the next few months. And then Karen disappeared.
She’d had a car accident, she told him once she finally returned to work. She was struggling with memory, and with neck pain, and headaches. She didn’t know what was wrong, but she was hopeful she would soon figure it out. It would take her far longer than she expected.
When Bob and Karen were married in 1993, it never occurred to either of them that Karen might not get better. But increasingly, her symptoms worsened: she had head pain that limited her ability to be upright, and neck pain that seemingly never went away. She began doing research herself, looking through medical journals to find descriptions of her symptoms, trying to understand what was happening. She was evaluated by 35 doctors before finally getting a diagnosis of a possible spinal CSF (cerebrospinal fluid) leak in 2012. A spinal CSF leak occurs when the dura mater (the tough membrane that surrounds the brain, spinal cord, and cerebrospinal fluid) has a hole or tear, allowing the cerebrospinal fluid to leak out. The loss of CSF causes positional headache (worse when upright) and a range of other symptoms. It is also called intracranial hypotension or low pressure headache.
If her journey towards a diagnosis had been long and uncertain, the process of fixing her spinal CSF leak was even more fraught. Initially, Karen traveled to have an epidural blood patch procedure, in which her own blood was injected along her spine where her dura mater was thinned and torn. But this procedure didn’t provide much relief, and so she made a return trip shortly afterwards for another patching procedure. This proved to be more effective—so much so that she began to suffer from rebound high intracranial pressure, having too much fluid around her brain and spinal cord instead of too little. This is a complication that may occur following a procedure to treat a spinal CSF leak, and although it usually resolves, it may require treatment.
The rebound pressure was so intense that she had to return to have her cerebrospinal fluid drained to normal levels to relieve her symptoms. Her struggles with fluctuating intracranial pressure continued for months. If she wasn’t grappling with the debilitating pain of high intracranial pressure, where her head felt as though it might explode, she was dealing with the equally debilitating pain of low intracranial pressure, where she was unable to be upright and severely limited in function.
Seven months after her first procedure, after having several epidural blood patches to stop her cerebrospinal fluid from leaking and several lumbar punctures to drain her cerebrospinal fluid from high levels, Karen and Bob made another out-of-state journey to be evaluated and treated by a neurosurgeon. By this time, Karen’s everyday pain levels were, in her words, “horrific.” She had a community of fellow patients dealing with spinal CSF leaks, and she shared her experience with them as she struggled to remain hopeful through all the procedures.
Her surgery went well and seemed to provide some relief, but upon returning home, her incision began leaking, and she had to go back for another surgery to address that. Unfortunately, just a month after surgery, she needed another blood patch. After all of these trips and procedures, after over 20 years of increasingly debilitating pain, she was still suffering and felt no closer to an answer than she did when she first started.
On August 7, 2013, Karen disappeared again. This time, though, she wasn’t able to return to Bob, find him sitting in his favorite booth at the restaurant, and explain her absence. Overwhelmed by pain and hopelessness, Karen had killed herself.
Bob was shell-shocked. He had known that Karen was in pain, that her condition was a constant struggle; but he had never considered that she might actually end her life. In hindsight, now, he says, “I missed the signs. I didn’t get it.”
And yet he began to understand that in her own way, she had been preparing him. For one thing, he says, “As she was getting sicker, she was showing me things like how to pay the bills online, how to do the laundry, how to work the dishwasher. Things she’d always done. She knew she was preparing me, but I didn’t know that. And even with that preparation, things were still difficult. Tomorrow is promised to no one.” For another, she had left behind for him all of her writing: journals and diaries and email correspondence, a record of her thoughts amidst the pain. It was painful for Bob to read, but, in its own way, healing. In all, there were over 9,000 entries.
As he learned the truth about his wife’s suffering through her first-person account, he also wondered, what can the world learn from Karen? What can doctors learn? “I knew I had the choice where I could walk away from Karen and spinal CSF leaks and all that it meant,” he says, “or I could choose to do something with the knowledge Karen had gleaned so that her death wouldn’t be in vain and that knowledge wouldn’t be lost.” When he let her doctors know about her suicide, he also let them know that he would be willing to allow them to study her, so they would be able to understand more about spinal CSF leaks and the complications arising from them.
He also began compiling her writing into a website and a book, publishing her journals and correspondence as a tribute to her, a way to keep her memory alive and also educate people living with and studying spinal CSF leaks. He began sharing Karen’s story, and says that raising awareness about Karen and CSF leaks is his life now: he carries business cards with him featuring Karen’s picture, her website, and a summary of her story. “You never know who you might reach,” he says. “Because of Karen’s website I’ve had people tell me they were not going to commit suicide and that they were going to get help. I’ve had other people tell me they now have a diagnosis for their symptoms after reading her story on the website and talking to their doctors.”
Sharing Karen’s story has been a powerful part of Bob’s healing process, but he also acknowledges the importance of getting professional help. He worked with a grief counselor, who he found through the Visiting Nurse Association. “Seek out help from professionals,” he cautions, “don’t try to go it alone. That just prolongs the journey. And it is a journey. It never actually ends, and never will. But you can’t let your life stop because of it. The people that left you don’t want that to happen to your life.” As for those who are suffering from debilitating conditions like Karen’s, he says, “Don’t give up too soon. Reach out. If not to family or friends, then to the suicide help hotline.”
When speaking about the work of grief—which, like the work of living with chronic pain, is often lonely, private, and specific—Bob mentions a quote that has stayed with him, about the importance of connecting with people who can support you: “You must do it alone; but you cannot do it by yourself.”
Like Karen, many people with chronic illness endure relentless pain, pain that is challenging to address and ultimately can seem too much to bear. We encourage anyone feeling such despair to reach out—whether to trusted friends and family, to a mental health professional, or to one of the confidential support lines below.
National Suicide and Crisis Lifeline: 988
Crisis Text Line: text HOME to 741741
For more information about Karen and her journey, you can visit the website Bob created at kpaddock.com
Her book is available for purchase as Paperback or Kindle.