In this column, you will get to know a thoughtful and curious person who has a vast variety of interests. He seems to make the most of his time learning about things that pique his interest. While learning about his own health, he tries to be aware of how to treat what might be coming around the bend. It seems to me (Andrea) that he approaches his health in thoughtful ways and shares how you might be able to take a page out of his book. But what impressed me most, initially, was his interest in CF advocacy regarding health insurance–not just for his own gain but to benefit others who have CF and to educate local statewide lawmakers. I hope you all can take away some new ideas to better care for yourselves. Meet Jonathan Miller, our latest star (who also happens to know a lot about astronomy!). Spotlight, please!

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What made you such a vocal advocate for healthcare for people with CF?
It was a combination of many things, but mostly because I benefited so much from the Affordable Care Act. My experiences with our healthcare laws were nothing like what I heard from so many different politicians. So I wanted to share my experience in hopes of educating others about how our laws protect me in so many ways, and what would happen to me and others if they were to be changed for the worse.

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How did you get started?
My advocacy started with a simple e-mail sent to one of my U.S. Senators. I was then invited to attend a meeting to share my story and, from there, quickly started getting more offers from different politicians and media outlets to do all kinds of speeches, articles, presentations, even a podcast. I always said yes when asked, no matter how large or small the platform. If I could help shape one person’s mind about how they think about healthcare, I wanted to do it. As CF patients, I believe it is our responsibility to let our lawmakers know who we are and what our needs are when it comes to healthcare. Obviously, there is only so much any of us can do at the federal level, but all of us should be in touch with our local representatives at the state level. They influence a lot of healthcare policy, especially when it comes to Medicaid. If they don’t know who you are, you aren’t being considered when it comes time to vote!

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How important is it for people to be involved, if they can, in their healthcare choices?
Because so few people actually understand how health insurance works, it leaves them vulnerable to misinformation. I think everyone should take the time to learn the basics – premiums, co-pays, deductibles – these are important terms to know that will help anyone better understand their coverage. For patients with CF, unfortunately, I think all of us need to know a lot more than the basics. Because healthcare policies change every year, it’s important to know all the treatments that you need and how they get covered. If you don’t know these details, you could end up with a plan that does not cover everything you need or is too expensive. The best way to learn is to ask questions and take advantage of the resources that are available to you, especially CF Legal (www.sufianpassamano.com) and Compass (CFF).

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Did you see your health improve on disability?
I used to work full time at a university as a program director for fundraising programs. I went on disability because I physically could not work anymore. I was getting exacerbations much too frequently and symptoms were more aggressive. I was very nervous about going on disability, at first. I was worried about the unknown, and working and earning a living was very important to me. However, being on disability gave me the time I needed to properly take care of myself.

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How did you improve your health?
The most important thing I learned, since becoming disabled, is how to distinguish my symptoms and figure out what’s causing them. Because my time was no longer consumed with work, I found myself noticing far more of the subtle things my body was doing. I am now much better at sensing the different types of airway obstruction in my lungs and sinuses. For many years I thought that my health was random, that sickness and exacerbations were always arbitrary and just a part of my health. The biggest change in my understanding these last few years has been finding that my condition is shockingly consistent. While I do get sick quite a bit, I’ve learned that, for me, almost no symptom comes without an identifiable cause. As symptoms begin to show, I can start to troubleshoot and identify the reason. Often it’s simply an environmental change – air quality, allergies, contaminated respiratory equipment, changing air purifier filters etc., which requires a simple change. Once I’ve figured out the likely cause and made appropriate changes, a lot of times I can recover with the right balance of rest, exercise, water, ibuprofen, increased albuterol treatments and airways clearance, and changing my exposure to anything that might be causing my symptoms.

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Tracking and treating my symptoms this way takes a lot of work and it’s important to not become obsessive. To strike the right balance, I try to be very diligent when symptoms present themselves but more hands off when things are normal. Of course, there are limits to how much one can do without medical intervention, so it’s always important to stay mindful of those limits and work with your doctors to chart your best path forward. Sometimes I have to be reminded of that, too!

What tricks can you share for others to track their symptoms?

I think it’s important for everyone to establish what their health goals are. Once you have those, you can start to figure out what changes you need to make in order to reach them. You can identify patterns, you can start to find causes and continue to make adjustments as you go.

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When I am recovering from an exacerbation, I look for small signs of improvement each day. Are my pulse oximetry numbers a little bit better? Is my energy level a little higher? Can I do a little more exercise today than yesterday? As long as these things are improving, then I know I’m on the right track.

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What is important to you in life?
One of the unexpected great things about going on disability was that it left me with much more free time. For perhaps the first time in my life, I felt free to answer a simple question – “What do I WANT to do?” Having this freedom revealed a lot about myself and what I value. One of the things I decided to finally spend more time on was astronomy and stargazing. I quickly found myself enjoying learning and found an appetite for other science subjects as well.

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A lot of the things I learned about science didn’t just change the way I viewed the physical world, but also my understanding of CF. As I learned some basics about subjects like chemistry, and even just air, I started to better understand how my body interacts with the world around me. This expanded knowledge of air quality and how airborne pathogens spread gave me a lot more insight into preventing illness. Learning a bit more anatomy, especially of the lungs, really helped as well. It gave me new ways to think about how to take care of myself.

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What is your philosophy on living?
A life with CF has provided me with the bittersweet awareness of how short life is. It’s this awareness that often drives me to do all that I can, for as long as I can, and to try to properly value the opportunities that come my way. I care about living life in a way that encourages new experiences and growth, not just for myself but for others as well. It’s the times I’m doing the things I love, with the people I love doing them with, that always bring me the most joy and even moments of freedom from my disease.

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What do you enjoy doing?
I play a lot of sports, love playing music and writing songs. I’m a great dancer, when I’m well enough. I didn’t understand the true importance of hobbies until I became sicker. I have learned the value of having hobbies I can do at various levels of physical condition. Having things I can do even when I am sick and much less mobile really helps me get through those times.

When I am well, I also enjoy golf, disc golf, bowling, ballroom dancing, billiards and hiking.

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From whom do you get support?
I get support from a lot of different people. I rely on each family member and friend in different ways. I have also benefited tremendously from working with a therapist. I recommend that EVERYONE see a therapist at least every once in a while. It’s a tremendous opportunity if you are ready to be open and curious. If nothing else, it’s nice to have someone you can say literally anything to and get out your frustrations without fear of negatively impacting someone you care about. Most of my sessions I just vent! Through the great relationships I have, I don’t generally feel lonely, but I do live with a certain sense of isolation. I spend a lot of time with myself and my thoughts, and my experiences are so vastly different from all the other people in my life, I don’t have anyone I feel truly understands me. Like my support system, I find that different people understand different parts of me, and so I work hard to keep these people in my life and find time for fun with the people I care about.

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How do you handle hardships?
We, as CF patients, get a rare lens through which to witness the world. We experience a spectrum of lows and highs that most others never will. The skills and character of which I am most proud have been cultivated from the hardest, most stressful aspects of my life, and while I certainly wish many of these moments had never come, I’m sometimes surprised, even amazed, with how much I’ve been able to grow from them. I still work to avoid hardship, but when it must come, I try to welcome it and the lessons it will bring me. 

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Jonathan is 27 and has CF. He lives in Meriden, CT. You can find him all over New England – in the woods, on the golf course, in bowling alleys, under the night sky and sometimes on a dance floor. He loves sharing experiences and learning new things. He has drug-resistant Burkholderia cepacia and hopes there will be drugs that can treat these strains of bacteria some day. You can e-mail him at jonathanmiller163@yahoo.com. He will respond to any inquiries…eventually!