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Cystic Fibrosis Cornerman

The story of my wife's fight with cystic fibrosis, lung transplant, and what I learned from it all.

Wear a Damn Mask…a poem

If you love your neighbor, I should not have to ask,
Cover that nose and that mouth with a mask.

You might think to say, ‘I’m not even sick’
Some symptoms don’t show, so don’t be a d*ck.

Whether you live in the north, or in the south,
You could have the COVID in your dirty mouth.

It’s bad for your breathing? That doesn’t make sense.
My wife wore one…her lungs only worked at 20 percent.

CF caused that, and then it got worse.
But that thin little cloth will put YOU in a hearse?

Some yell about freedom, and cry ‘Liberty!’
But infecting Americans ain’t patriotic to me.

If you care about people paying the rent,
Masks bump GDP by 5 percent.

“But they told us in March, masks were not needed.”
It’s in learning new things, where the dumb ones are weeded.

It stops spit from flying and spreading those germs.
No one wants nana feeding the worms.

It don’t matter your wealth, your status or class,
Don’t make weak excuses, put on a damn mask!

My Interview with Awesomegang

Tell us about yourself and how many books you have written.
I’m an engineer, a manager, a marketer, and a martial artist…and I suppose now, an author. This is my first book. I never had a desire to write a book until I was inspired by my wife’s struggle with cystic fibrosis and her journey to get a double lung transplant. I left my job to be by her side in the hospital for 6 months while she was on a ventilator and not expected to survive. I wrote this book to share with people the thoughts and beliefs that kept me strong through a battle on some many fronts.

What is the name of your latest book and what inspired it?
“Lessons from a CF Cornerman: 38 Lessons I Learned During my Wife’s Illness and Lung Transplant” was inspired by a lifetime in martial arts. I had always seen myself as a fighter until life had put me in the position where I could not fight that battle. The best thing I could do was to be in her corner and provide the best possible support for my wife as she fought to stay alive. Besides…if I used a literal description in the title it would have lost it’s pizzazz. Who wants to read “Lessons from a Hairbrusher” or “Pocketbook Holder” or “Leg-shaver”? My guess, maybe 11 people.

Do you have any unusual writing habits?
I actually wrote most of this book on my iPad while sitting in the hospital room with Rebecca. I did it because that was where I spent my day and I did not want to forget any details. I think it actually made the story much better because every event and emotion was fresh on my mind as I wrote the first draft. When I went back through it the first time I found myself getting caught up in emotion and even remembering things that I would have otherwise forgotten. It was extremely inefficient since I can actually type. Not to brag but I received an A- in “Keyboarding for personal use” back in high school. Perhaps I should have mentioned that along with my college degrees…

What authors, or books have influenced you?
I love non-fiction and I wanted to write a book that I would enjoy reading. I’ll read anything I feel I can learn from or that gets me thinking. I’ve read everything by Malcolm Gladwell and enjoyed the books “Freakonomics”, “Born a Crime”, and “The Language of God” which are probably the best examples. I also enjoy books by Tim Ferriss.

What are you working on now?
I am actually working on launching a speaking career. For years I’ve spoken at events for the cystic fibrosis foundation and now I believe that is the best way to get the message out and share what I’ve learned and documented in my book. I really enjoy interacting with people and having good discussions. After seeing what good caregivers and today’s amazing technology is capable of, I am filled with hope for the next generation. Children diagnosed with cystic fibrosis and a variety of other illnesses are in good hands. When my wife’s lungs stopped working (even with the help of a ventilator) they pumped all of her blood continuously through a machine that added oxygen and removed carbon dioxide. WHAT?!? She survived on this (ECMO) for over two weeks while we waited for donor lungs. Wow.

What is your best method or website when it comes to promoting your books?
For me, the oldest ways have worked the best…talking to people. Perhaps it’s because there are so many books out there, or because people don’t read as much, or maybe because they think our story might be depressing, but I’ve not found a way to promote interest better than engaging one-on-one. It’s good to have a website or Facebook page to send people to but I’ve found that without a little interaction, people are hesitant to pull the trigger. I understand this because a book is a time commitment and for me, I consider the value of my time much more valuable than the $20 it takes to buy a book.

Do you have any advice for new authors?
I’m not sure I’m the right one to speak on this. I guess what I would say is to do a little everyday and don’t get overwhelmed by the “to do” list. A colleague of mine from Guadalajara would always say “How do you eat an elephant?” The answer was “One bite at a time.” I will now apologize for voicing that terrible thought but it’s good advice.

What is the best advice you have ever heard?
Darnit, I just used my elephant advice. Okay, I’ll quote a lesson from my book “Lesson 4: Be thankful.” There is a slight possibility that I am not the FIRST person to say this but in the context of our journey I found it incredibly helpful. It resets you and forces a positive perspective. When Rebecca was in a chemically-induced coma and I was experiencing a rush of emotions…dread, sadness, empathy, regret…I stopped to recognize that all of our experiences over the past 17 years had led me there. We had great memories, a lot of success, and we had grown a lot together. There was nothing we could do about her health but I was thankful that I had the previous 17 years with her and I would not trade them for anything.

What are you reading now?

I’m reading “When to Rob a Bank” by the guys that did “Freakonomics.” They do an amazing job uncovering people’s true motivations and exposing our idiosyncrasies. I don’t always agree with their conclusions but they really make you think about why we do the things we do.

What’s next for you as a writer?

I enjoy blogging for the cystic fibrosis foundation and writing articles for caregiving organizations as well. It gives me the chance to share and highlight the lessons I’ve learned and get my message out. The comments also give me a chance to interact with other people with similar challenges and compare stories. One of the things that surprised me about writing the book was how much I enjoyed hearing people’s stories. Whether I write another book or not, I will continue to share lessons and encourage discussions.

If you were going to be stranded on a desert island and allowed to take 3 or 4 books with you what books would you bring?

1. “The Art of War” – I’ve never read it but I feel that on a desert island, I’d have time.
2. “Outliers” – I would want the motivation to use that time to get better at something. With potentially tens of thousands of hours available to me, I would want to take advantage of that time.
3. “The Language of God” – I would want that reminder that there was a higher power. I know I should say the bible here but I don’t think I would read it enough to justify it. Stop judging me, I’m the one stuck on the island!
4. “Ship building and Island Survival” If I could not find a single book that covered these topics well enough I’d sacrifice any of the other books. Above all, survive.

Rationalizing Bad News

When I was told that next week’s in-person VLC was cancelled I was incredibly disappointed. All year I look forward to seeing old friends, making new ones, and talking so much that I lose my voice sometime during day 2. This year I was honored to be asked to be a co-chair with Julie so I was looking forward to this VLC more than I ever have.

Despite that disappointment, I knew immediately that the leadership at the CFF had come to the right decision. In the back of my mind I had been worrying that I could potentially catch something and bring it home to Becca who (since she is post transplant) has a compromised immune system from her anti-rejection meds. I imagined all of the hand sanitizer I would use and even thought about getting a hotel for a night or two after returning just to keep her safe. I’m sure many of you had similar worries.

This community has one thing over so many others, resilience. From people who have gone through hell to get a transplant to parents that have lost their children, from the highs of a good day to the knot in your stomach from a decline…being able to hear bad news and continue fighting is was makes this community so incredible . Having the ability to put things into perspective quickly comes from practice and it’s hard to imagine a more ‘practiced’ group than this one.

When I did my TEDx talk, I spoke on realistic optimism. A big part is that there is no benefit from burying our heads in the sand. The fact that the CFF leadership took the time to think this through and make a tough but correct call is a reminder to me of why I volunteer.

So yes, we’re still going to have VLC, it’ll just be online. And though we may not meet up at the bar, feel free to friend me, send me a message, or shoot me an email (cfcornerman@gmail.com) because I’m always happy to connect with another member of the CF Family. And together we’re absolutely going to make CF stand for Cure Found.

 

Young People Joining Tomorrow’s Leaders

As the former chair and council member, our vision of our Tomorrow’s Leaders group is filled with people that start early, people that grab the baton and continue running toward a cure. This can help both the CF Foundation and the individuals that become members in so many different ways!

We will have new ideas as well as people to help implement them. We will make organizational connections with companies where these new members are employed that have a ton of different ways they can support us. We can utilize professional and personal networks to recruit additional members that may be interested in being involved. And finally, we can help those people learn how good it feels to put their time and energy into a good cause. That is something that they can take with them as they continue to grow and mature.

They say it isn’t what you know, it’s who you know. Being involved with a non-profit like Tomorrow’s Leaders will not only help them learn new skills, but it will introduce them to a larger network of truly phenomenal people. People in so many industries and such varied roles.

So, as we connect with more young people, let’s get them involved. If their interest is networking, we have so many interesting and accomplished people in our group. If they’re looking for leadership experience they can help plan one of our signature events, maybe lead the planning, or even join the council. And if they’re looking for a fun way to socialize with some great people we’ve got that too. Whatever their vision for themselves may be, we have a great story to tell why it aligns with our vision to not only grow Tomorrow’s Leaders, but to find a true cure for this disease.

Why I Volunteer

I would often ask my wife, should we fundraise and do a CF Foundation walk? She would often push it off until the next year because she just didn’t have the time and energy. I was content to wait since she was the one who suffered from CF. At the same time, SHE was the one who suffered from CF. It’s not surprising that she was not looking to add another thing to her full plate of working full time, traveling, and dealing with all her treatments. It wasn’t until after I was nominated to be a Milwaukee’s Finest candidate that I realized that she didn’t need to add anything else to her plate. This could be something I could do. Of course, in retrospect it seems kind of obvious but trust me, this was a real revelation for me.

During Finest, I saw first-hand all the great ideas and events that other candidates put on and I was inspired to come up with some creative ideas of my own. I planned a happy hour, organized a self-defense class, executed a letter writing campaign, and shared Rebecca’s story with friends that had no idea she even had CF. I personally raised over $10k and learned about the Foundation in the process. After that, all I wanted was to help further the cause. That new, sustained interest and dedication is exactly what the foundation needs to help us develop a cure.

A cure means so much to me personally as I’ve seen my wife struggle with this disease for years. 20 years ago it included a lot of time doing treatments, several illnesses, and an overall lack of energy. 10 years ago it involved managing supplemental oxygen while she slept and exercised as well as seemingly endless visits to the hospital for planned and unplanned appointments. 5 years ago it almost seemed too late as she went into respiratory failure on a ventilator and in a chemically induced coma.

I remember going in the hospital room and just sit there waiting for any sign of improvement. I was happy for the work I had done with the foundation and my only regret was that I had not started sooner. I wished we had more time to share Rebecca’s story when it was a success story. We could have spread awareness and involvement and made more of a difference.

But as she stayed on the ventilator for months, I remember thinking about other families that had gone through this or that might go through this in the future. And after Rebecca received a double lung transplant and survived, it was humbling and deeply impactful to hear the stories of those who did not make it out of the hospital. I continue to volunteer, not because of an expectation that it will help Rebecca. I volunteer because I want to make sure that the next generation does not have to go through what she did, or worse.

Projecting confidence

It seemed like all the alarms in the world were going off at the same time. Rebecca’s Oxygen levels were plummeting despite being on a ventilator and ECMO (a machine directly oxygenating her blood). The ICU nurse was visibly rattled and I could see she was tearing up as her shaky voice yelled for a doctor. I stood just out of the way with Becca’s mother and sister watching helplessly as they worked to save her life. This was the scene in early June 2015 on a particularly challenging day leading up to transplant.

I remember watching the attending physician come in with a completely calm demeaner and serious expression. He spoke clearly and succinctly. He instructed the perfusionist controlling the ECMO machine to change some settings. He then ordered the nurse to give her a blood transfusion. As the nurse rushed around getting this together she continued to raise her concerns but he firmly told her again to give her the transfusion and then explained that the hemoglobin that she would be receiving would help to carry the oxygen in her blood. He also explained that it was not dropping as so quickly that they couldn’t respond.

His presence was calming because he was calm. His clarity and directness showed his knowledge and experience while none of us questioned whether he was doing the right thing. In retrospect, there were several things that projected his confidence which in turn inspired our confidence in him. The first was his presence. It was informed by his posture, tone, and purposeful movement which made it clear that he was not going to run around and panic like others were doing. The second was a clear expertise since he was decisive and direct. The third was that he came across as oddly optimistic. Perhaps it was his experience but it seemed as if he wasn’t panicked because he believed that she would be ok if there was a proper response. We also wanted to believe that the outcome would be positive so watching his assessment of the situation reinforced that belief and drove near immediate alignment.

Fortunately, we don’t all need to step into life or death situations every day but I took with me those three characteristics that he showed in those moments. He’d immediately calmed our already emotionally exhausted group huddled in the corner with his presence, expertise, and optimism. And in every demonstration of confidence that I’ve noticed since, those three elements were always front and center.

Emotional Intelligence in Practice

“Not education. Not experience. Not knowledge or intellectual horsepower. None of these serve as an adequate predictor as to why one person succeeds and another doesn’t.” This statement from Patrick Lencioni is referring to the idea that emotional intelligence (EQ) is the greatest predictor of success. The term EQ is relatively new in the past 30 years but the concept isn’t. It is the idea that by being aware of your own emotions and those of other people, we can interact more effectively and drive the results we want.

I learned this concept at work, but gained a much better understanding in the years that followed. On its face, it isn’t a major revelation. For instance, when someone is worked up that may not be the best time to present your new groundbreaking idea. However, I truly learned to appreciate it during our time in the hospital. On days when Rebecca was feeling down, I learned to focus on all the positive supportive gifts and cards she had received and that I had placed around her hospital room. Though I might have wanted to give her a pep talk and get her doing more physical therapy to improve her health and chances for transplant, I learned that maybe it would more productive if we focused on her comfort and state of mind.

Emotional intelligence consists of personal and social competencies. Personal competencies are both self-awareness and self-management.  So as I looked at the situation of Rebecca in her hospital bed I had to recognize that I was desperate to see her health improve and my tendency was to promote any efforts to build up her strength. The two things I REALLY wanted her to do consisted primarily of eating and physical therapy.

Social competencies on the other hand involves social awareness and relationship management skills. Much of the time what she wanted was to be more comfortable and to get some rest. With that context and 17 years together, I was in a decent position to recognize not only when she was growing concerned with something, but what might comfort her at the time. So, if she was emotionally exhausted and I wanted her to do PT I might make a deal that I’d rub her feet while she took a nap but then later that she would so some of her standing exercises. This recognition was key to developing a solution she would agree to.

As much as I wanted to, I couldn’t constantly push her to do her exercises or negotiate for them in every situation. If I did that she would have begun to see me primarily as that person. I also couldn’t only rub her feet if she would to PT in return, then every interaction would begin to become transactional. That is why the relationship management piece in my mind is the trickiest. The way we made it work was to put each other first and focus on all elements of the relationship. I needed to try to improve her day, better understand what she was feeling and going through, and even help her sort out her scattered sedation-impacted memory.

In the end, it tied into the idea that each day mattered, whether in the hospital or outside of it. That we weren’t looking for Rebecca to get better so we could live our lives, we were living them right then and there. The hospital can be an emotional place so there is no better place to practice emotional intelligence then right there in your room. Of course, none of this is groundbreaking, it’s kind of common sense. But some people get so caught up in achieving a goal that they lose that connection with the people involved. The investment of others is what makes the most challenging goals possible and why it’s no surprise that EQ is such a powerful predictor of success.

How do you prepare for the unpredictable?

When Rebecca went into respiratory failure it was not a surprise and it was DEFINITELY a surprise. What I mean by that is that someone with cystic fibrosis that has a lung function in the 30-40 percentage range is at high risk however up until even a few days before this, we felt like she had more time. Though our assessment of the specific date was off, our understanding of what was to come was unfortunately not. So as much as we could have or maybe should have predicted this, it was unpredictable.

At 37 years old, Rebecca was on the older side of people with CF. Months before her decline we discussed her cutting back her hours at work so not to push herself too hard. The fact that we even had this conversation suggests that we knew there was a looming risk. Fortunately, since we knew this we gave more thought to preparing for an eventual outcome.

When given the option through her company to purchase an added insurance if she became unable to work, we gave it serious consideration. We decided to opt in to their disability insurance (DI) policy even though Rebecca was healthy when we signed up. We had no idea of the decline we could expect in the coming year.

Over the first weeks of her time in the coma, I don’t think I thought about it once. However, when I began to realize that I might need to leave my job, I was thankful that we had it. It didn’t solve our biggest problems but it was definitely a relief when I remembered we had it. And when we moved up to Pittsburgh for Rebecca’s transplant, I’d already had to leave my job. The income from her DI helped us pay for medical care, a mortgage in Cincinnati, and our rent in Pittsburgh.

I’ve realized that I don’t need to be perfect at predicting things but it’s worth taking the time to think through what is to come and what may possibly help us through. If we can do that then we might be more prepared than we realize.

On which date do you mention cystic fibrosis?

As the longtime spouse of someone with cystic fibrosis I try to share my experience with those earlier in their journey. One question that has come up repeatedly from young people with CF is the best time to tell someone about the disease. This is one of the hardest questions to answer but I’ll do my best to explain my logic.

The reason why this is such a challenging question is that I don’t know what scares people away. I only know my reasoning for making the decision that I made to date (and eventually marry) someone with such a devastating disease. Much of it boiled down to the fact that we don’t know what tomorrow brings. I’ve heard gut wrenching stories about people dying on their wedding day or other freak accidents occurring that nobody could have predicted. It’s almost egotistical to think that you know how and when things will end for yourself or anybody else. So, if I get hit by a train tomorrow, I want to feel like I lived life fully in my time leading up to it.

That leads me to the second lesson from Lessons from a CF Cornerman. “Sometimes you have to trust your instincts, take a risk, and not focus on the worst that could happen.” Since we don’t know what will happen, why assume the worst? There could be improved treatments, new surgeries, or even a cure. When I met Rebecca at 20 years old, the life expectancy was 30. When we were 36, it was 38. We’re now 42 and it’s in the early forties. This increase is due to improvements in care and treatment options that has been driven by so many dedicated doctors, scientists, and volunteers. We are closer to a cure than we have ever been. There are now CFTR modulators that can improve the lives of 90% of the CF population as well as the recently announced CF Foundation’s Path to a Cure which promises to bring us ever closer to curing this disease. There was no way of knowing any of this in 1998 when we met. I had to take the first step without knowing where the stairway would lead and I’m glad that I did.

And though I know how important every relationship can feel, if someone can’t handle it, it just might be better off if they left before things get bad. I spent so much time in the hospital with my wife and sometimes it is routine while other times it’s the furthest from that. If I couldn’t handle it and left my wife on her toughest day, there would have been nobody there to advocate for her. At the risk of sounding self-important, if I did that she may not still be alive. To me that is a powerful message about who you surround yourself with. So in my opinion, if someone can’t handle your particular issue or disease, you’re probably better off without them.

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