My three kids were teenagers when I changed the course of our lives with one mistake. I fell asleep at the wheel and caused a car accident that my daughter Beth could not walk away from. The spinal cord in her neck was cut by broken bones, leaving her with quadriplegia. In that pivotal moment, my family started on a new path to a new normal.

My new memoir, Struggling with Serendipity, launched April 9 with a small press (not self-publishing). It starts with the accident and aftermath: a heartsick mom battling depression and guilt while a shy but determined teenager fights the harsh limits of quadriplegia. Beth, fourteen years old, believes everything will be okay. I feel sure that nothing will ever be okay again.

Unexpected adventures carry us from our small town in Ohio to Seattle, Harvard, Capitol Hill, and around the world. Together, we find serendipity in unlikely moments, including Beth’s invitation to join the Harvard Women’s Swimming and Diving team, the first with a visible disability.

Along the way, I learn to stop denying my depression and to seek professional help. Beth also taught me that everything really is okay.

Today, Beth is a health policy lawyer. Her clients and pro bono work include companies and nonprofits in the disability community. She shares my passion for volunteering and giving back.

A lifelong disability advocate—even before Beth’s injury—I ran a nonprofit, managed group homes, and worked at an institution. I actively volunteer for disability and mental health nonprofits. I’m passionate about sharing the power of hope and connection.

I never would have believed it the night of Beths’ accident, but I’m happy to share that 19 years later, we are truly grateful for where we are today. I learned that it really is possible to manage depression and find ways to thrive.

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An excerpt from Struggling with Serendipity follows:

A sludge of sad emotions filled my aching head. I acquired the diagnosis of depression at 23 as a new mom, but my Ohio doctor didn’t tell me. He wrote it down instead. When I read the diagnosis later, I thought it labeled me weak and ungrateful. The doctor had to be wrong.

Over the years that followed, I realized he was right. Extended times of melancholy brought more than just sadness. I lost interest in reading, sewing, walks, and other things I usually enjoyed. Most episodes began with no apparent reason. Others had a trigger, like when my favorite grandma died. My headache also flared, a band of pressure around my head and aching across and behind my eyes. I drove to Columbus to my first pain clinic.

A doctor at the pain clinic diagnosed me with a mental illness, again. Still, I rationalized it away. My excuse for depression? The headache. And vice versa. I felt like I needed an excuse since the diagnosis created a conflict in my mind. How could I be depressed when I cherished my family and felt loved? I also had a meaningful job and many other reasons to be thankful. 

Part of me understood the connection between body chemistry and depression. I ignored that part and clung to the belief that I’d be fine—as soon as all my ducks lined up in a row. Better sleep, better food, better exercising, better relaxing, better thinking, etc., etc. Healthier, tougher, wiser. Or something. 

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More information about Cindy’s book, blog, and coast-t0-coast book tour may be found on her website:www.strugglingwithserendipity.com Find her on Twitter @cindy_kolbe and her Facebook page is Struggling with Serendipity.

As an advocate around mental health and, particularly, depression, I often get asked the question of how one can support a friend or family member who is struggling with depression. Actually, I had no idea how to answer that question when I was in the midst of my own major depression.

I had invited two of my best friends to my house the night before I checked myself into a partial hospitalization program in order to let them know what was going on with me…and to request their support. Of course they asked, “What can we do to support you?” While I really didn’t know a good answer, I asked them to check in with me via texts once in awhile. I also asked them to invite me out for a coffee, alone, without a group of friends, now and then. My last suggestion was to ask one of them to reach out to an acquaintance of his who worked with men and depression and to ask him how they could support me.

My wife wanted to help me. She, too, asked, “How can I help you?” I really didn’t know what she could do for me. I asked her to join me at a therapy session or two, which she did. This was comforting to me, although I’m not so sure how much it supported her in helping me.

One of my most memorable times in which a friend helped me out happened to be on a bitter cold Minnesota day. My friend, Dan (one of the two I had mentioned earlier in this post), called me up and said, “Get dressed, I’m coming over and we’re going out with our cameras”. He arrived to my house and, as is common for many when clinically depressed, I made as many excuses as I could to stay inside the house and on the couch. He persisted. He even brought some extra, warm clothes for me in order to eliminate the lack of warm clothes as a possible excuse. Dan happens to be a professional photographer and, as a very close friend, he knew of my passion for photography, as well. We’d been out to shoot on several occasions prior to this.

We geared up, long-johns, Sorrel boots, hats, gloves, wool socks, the works! The weather was frigid. I trudged my way from my house door to his car, feeling that my body movements were slow and heavy due to the depression. As close friends often are, I was comfortable with Dan and knew that I could be silent, sad, or simply emotionally numb and he wouldn’t judge me for it. He drove the mile or so to the Mississippi River. We got out, each with a camera in hand, and made our way to the slow moving, nearly completely frozen river. The air was incredibly crisp and sun was shining brightly. It was actually a beautiful day and the frigid temperature actually, in some odd way, was refreshing and even invigorating.

I still remember that day like it was yesterday. We walked up and down the banks of the river exploring through the lenses of our cameras. The reflection of the sun off of the ice and water was just beautiful. It allowed me to get outside of my head (and out of my house), even if just for a short couple of hours. I got exercise, I had social contact with a trusted friend, I had fresh air, and I was able to enjoy one of my hobbies for which I had lost interest in during my depression.

Was I cured from my depression? Absolutely not. Did it give me a glimmer of hope that is so crucial to recovering from a major depressive episode? Absolutely! Lessons learned: Ask for help, accept help, use every ounce of effort possible (dig deep) to find any bit of energy to do something!

As with all of my posts, I encourage and welcome comments!

My friend, Dan, at the Mississippi River on the frigid day described above.

Let me be crystal clear: Suicide is NOT a selfish act. It is not an attention-seeking act. Anybody who says differently is perpetuating a very dangerous misunderstanding.

I have heard many stories in which someone stated that they would never take their own life because of their family, yet they end up dying by suicide. After having been in an incredibly deep, dark place of major depression, a place in which I did not feel myself and was not thinking logically because of the illness, I have a much greater understanding of how one may tragically come to end their life.

Conversely, I can understand how one who loved someone who died by suicide may feel as though the act was selfish. I would imagine there may be deep feelings of anger by a loved survivor of one who died by suicide. This is typical of the normal grieving process and I would imagine one’s anger is exacerbated when grieving the loss of loved one who died by suicide. I also believe it would be normal to wonder, “Didn’t the person consider me or our family when they decided to take their own life”, thus eliciting the feeling that the person who died by suicide must have been selfish for not even thinking of how the act would impact me/our family.

As a person who had four young children (between the ages of two and seven) when I had planned my suicide, I can attest to the fact that I had not developed a plan out of selfishness. I truly believed that I had become such a burden to my family that they would be better off without me. I no longer believed that I was a competent employee, father, or husband. I was going through an incredible amount of indescribable pain. The depression had become excruciatingly debilitating. Other than uncontrollable crying bouts at night, I was emotionless throughout the days. I was numb to all feelings. I could no longer read expressively to my kids or find joy in playing with them. I could no longer take care of the easiest of chores at the house. Every small task at work felt like a new summit had been placed on top of the peak of a mountain of responsibilities. I felt deeply helpless and hopeless. I did not intentionally develop a plan for suicide. The thought came into my head, I would push it away, and it would be back in my head less than an hour later. I couldn’t stop the thought from coming to my mind. One evening, I dreamed of going through with the plan. This dream scared the hell out me and was the impetus for me to urge my wife and sister to join me for an urgent appointment with my psychiatric physician’s assistant (PA) to advocate for more support.

I was very thankful they were with me, as it took their insistence to finally convince this PA that I needed something more. I made the difficult, yet lifesaving, decision to leave work for three weeks in order to check myself into a partial hospitalization program.

As I was on the verge of acting out a plan of suicide, it was not based on selfishness whatsoever. It was the pain of the debilitating depression and not knowing if or when I would ever get better.

Friends and loved ones need to somehow provide those who are suffering with a sense of hope. Suicide is not the answer.

As with all of my posts, comments are welcomed and encouraged.

The following is a Guest Post from a fellow advocate of mine. Bob McEachern is an advocate for Follicular Lymphoma. You can find much more of his writing on his own very popular blog “Lympho Bob”. In this post, he describes how one going through cancer may likely face symptoms of Post Traumatic Stress Disorder (PTSD). This topic interested me greatly, as I have met advocates of many different chronic illnesses and have often wondered how receiving the diagnosis of a chronic illness and living with a chronic illness may impact one’s mental health. I now have a first-hand description.

PTSD and Cancer

Recently, a friend posted a link on Twitter. Like me, she’s a cancer survivor – breast cancer for her, Follicular Lymphoma for me.

The link was for a study of Post-Traumatic Stress Syndrome (PTSD) in cancer patients. The researchers began with a simple assumption – that a cancer diagnosis is a traumatic event (I’d say that’s a good assumption). They interviewed patients when they were diagnosed (their exposure to the trauma), and then again at 6 months and at 4 years after diagnosis. The interviews focused on their possible PTSD-related symptoms – intense fear, horror, or helplessness at diagnosis, and then later re-experiencing the event by avoiding it, or feeling numb or detached, for example.

They found that, 6 months after diagnosis, about 20% of cancer patients experienced some form of PTSD. That’s more than 3 times the rate of PTSD in the general population.

The PTSD rate was in line with the general population at 4 years, but there are plenty of cancer patients who relive their experience, even years later.

My own diagnosis was as traumatic as many others. I was 40 years old, the healthiest I had ever been, and had three young children, aged 10, 8, and 6. After the diagnosis, I spent a week doing blood tests, a PET scan, and a bone marrow biopsy, trying to figure out what I was dealing with.

After all that, I went to see a Lymphoma specialist at a nearby research hospital. For the first time, in the waiting room, I was surrounded by other cancer patients, and my reality started to creep in. I picked up a brochure and saw the 5- and 10-year survival rates for Follicular Lymphoma. It was all overwhelming. I spent the next two weeks breaking into tears every half hour or so, wondering, Will that be me? Will I be a statistic? And wondering what would happen to my kids. It was the darkest time of my life.

Fast forward 9 years. My wife needed some testing done at the same hospital. We went up to the second floor of one of the building, and as she was checking in, I got a strange sense that I’d been there before. The building is kind of pyramid-shaped, with one wall completely made of glass windows. In the middle of the waiting area, there was a large planter full of ferns.

I knew those windows. I knew that planter. This was the waiting room that I had been in before.

As my wife sat in the nearly empty waiting room to be called in, I looked around for a directory, to see if this was actually the Hematology section, and not the specialty she was being tested for. Before she got called in, I told her that I thought this was the same room.

She went in for the tests, so I sat by myself in that waiting room, for the 3 hours or so that the tests took. I had brought a book with me, but I couldn’t focus on it. I got up and walked around, still wondering if this was the same room. Sure enough, I found a bronze plaque that had something to do with an important donor and Hematology. This was the place. I also found a big Andy Warhol-type print of a local personality, his face repeated like Marilyn Monroe’s, hanging on the wall. This personality had blood cancer, too. It’s funny — one memory of that bad day was seeing him in the hallway, when he must have had an appointment. This was most definitely the old Hematology department (which I later realized had moved to a new cancer building).

Lots of feelings came flooding back to me. It’s a strange sensation, reliving something so vividly, nine years later.

I don’t know if what I felt would be classified as Subsyndromal PTSD, as the researchers in the cancer study call it. But it’s easy for me to believe that cancer patients can experience those symptoms, even years after they were diagnosed.

One fascinating finding from the PTSD-Cancer research that really stood out for me: patients with all types of cancer experience PTSD at 6 months at a rate higher than the general population, except one: breast cancer patients.

The researchers think that this is the case because breast cancer patients have so many more support resources available to them than patients of other cancers.

Another conclusion from the researchers that stood out: many cancer patients who do experience PTSD symptoms have the belief that going it alone is a sign of strength, and they should just gut it out when they have emotional problems.

It’s not an easy leap to put those two things together. Breast cancer patients (about 99% of them are women) have more support resources, but are also more likely to use them. In general, men are less likely to seek out help.

My two experiences, nine years apart, were very different. After diagnosis, when things went dark, I kept everything inside for two weeks. I needed to “be strong.” I remember watching TV with my wife and kids, turning off the lights “so I could see better,” but really trying to hide my tears from them. Things only got better when I finally opened up to my wife. She was and still is my rock. She listened, let me cry, and let me know that whatever happened, we would go through it together. Nine years later, after revisiting the same office and feeling the same feelings, I didn’t make that mistake again. We talked through it all right away.

The researchers conclude that more support for cancer patients’ mental health is needed. Even a doctor taking time to debrief a patient’s emotions, right from diagnosis, can help. A doctor’s willingness to bring up the issue can go a long way toward finding a problem.

And patients need to be willing to seek help. Being silent is not a sign of weakness, they say. In fact, it’s a sign of strength – it takes courage to seek help.

That’s a good reminder for all of us.

During the last week of June 2018, National Alliance on Mental Illness (NAMI) held their annual national convention. This year it was held in New Orleans, Louisiana. There were nearly 1,700 total attendees with representation from every state, including Puerto Rico. Half of the attendees at the convention were first-timers. The theme of the convention was, “Live, Learn, Share, Hope”. Each of these themes resonated with me in a different way:

Live:

The theme “Live” makes me think about how I need to live my life to its fullest. The phrase, “Live each day like it’s your last” came to mind. I have become more mindful in the past few years. To some, “mindfulness” may just seem like a buzz word. To me, being mindful and living in the moment is critical in order to be fully present. I now naturally catch myself when my mind is wandering and pull myself back into the present.  This is important because much of our mind wandering has been shown to be negative. One study found approximately 80% of mind wandering to fall into that category. A recent example of mine was when I was playing a board game with three of my kids. I caught myself starting to think about work and things I needed to accomplish around the house. I quickly stopped those thoughts and intentionally focused on my kids and the game we were playing. Of course, everybody’s “fullest” will look different, and that’s okay. Regardless, if we want to live our lives more deeply, learning to be present will always be part of that formula.

Learn:

Much of the NAMI national conference is about learning. I learned about some of the policy and advocacy work that NAMI is doing at the national level. As the nations largest grassroots mental health organization, NAMI has done an extraordinary amount of work in shaping the national public policy in an effort to support both those living with a mental illness and their family members. NAMI has also educated hundreds of thousands of people giving them information and the resources they need in order to support themselves or others.

In addition to learning more about NAMI, I learned about the difficulties and opportunities in mental health research faced by the National Institute of Mental Health (NIMH). I was able to learn more about new medications, new therapies, and how to become a better advocate. I learned more about the unique challenges faced by people of color who are living with a mental illness. The learning opportunities at the convention were endless!

Share:

Sharing is about connecting with others. I was able to connect with so many dynamic, caring people at the convention. People were open to sharing their own personal experiences of living with a mental illness. Others shared  about supporting a loved one with a mental illness. People shared how they advocate for more awareness and better policies around mental illness. Many were there to share their valuable resources. This sharing “culture” was one that allowed for people to connect and learn from one another in a very authentic, caring way.

Hope:

Hope permeated the NAMI convention. Hearing many stories of those living with a mental illness who have made incredible strides, such as Jeff Fink, Lauren Burke, and Lloyd Hale from the movie, “Beyond Silence”. Each of them overcame inconceivable  challenges of living with a mental illness. Learning from others about how they live incredibly meaningful lives full of contentment while managing their mental illness created an immense feeling of hope.

In the end, this convention was both inspiring and educational. It allowed people from all walks of life to connect with one another and to learn from one another. NAMI is an organization that provides a wealth of resources and information to so many. I would urge anybody who has any interest in mental illness to attend a NAMI national, or even state, convention.