RIVER CROSSING Second Wind

By Craig Howard Current Contributing Editor

Mariah Hanley was in her third year of law school at the University of Washington when her cystic fibrosis presented another steep challenge.

Hanley was accustomed to the physical hurdles that accompany the rare genetic condition – the persistent coughing, the lung and digestive setbacks, hospitalizations and fluid buildup in an array of ducts, tubes and passageways. This time, however, a severe bacterial infection called M. Abscessus – a cousin of the organisms that cause tuberculosis and leprosy – had shown up, causing those close to Hanley, like her mother Addy Hatch, to express elevated concern.

“We were in the hospital room and it was really the only time, I remember saying, ‘How are you going to do this?’” Hatch recalls. “Mariah just looked at me and said, ‘We’ll see.’”

For the next six months, Hanley lugged around two I.V. pumps with saline delivered through a port in her chest. She tackled the rigors of law school with the same resilience that carried her through a slew of achievements at Central Valley High School and Seattle University, approaching each uphill battle with uncommon determination and focus.

“She’s never looked for scapegoats or excuses,” Hatch said. “Mariah is really someone to be admired.”

For Hanley, who went on to earn her law degree while forging the start of her career at Northwest Justice Project, the journey has been more matter-of-fact than unmanageable.

“I’ve never really thought it was that impressive,” she said. “It’s more like, ‘Here’s what I’m going to do and if it’s hard, I’ll figure it out.’ It didn’t define me but I also didn’t hide it. I just never used it as a crutch.”

These days, Hanley is working to help others navigate paths to stability as a manager in the Office of Military and Veteran Legal Assistance through the Washington State Attorney General’s Office in Seattle. It’s a role that has been an ideal fit for someone who knows a thing or two about accessing support and advocacy. Hanley became an assistant attorney general after working as a staff attorney with the Northwest Justice Project where she completed an internship while at UW.

“I love my work,” Hanley said. “I’m working with a group of people who have a lot of different issues and I can work on how those issues fit together.”

Hanley’s road to becoming an attorney began at Summit School in Spokane Valley and continued at CV where she was a selfdescribed “debate kid” and highachieving Running Start student.

Her trademark resolve was often apparent whether she was plowing through debate tournaments with nebulizer nearby or the time at Summit when she and a group of students went to a local swimming pool and Hanley fell short diving for an object on her first try.

“The teacher told her it was OK, that she didn’t need to go again,” Hatch said. “But Hanley kept trying until she got it.”

Hanley began following cystic fibrosis research advancements as an undergrad in college but always remained cautiously and pragmatically optimistic. At one point, she mapped out a multiyear career break in anticipation of a potential lung transplant. When she was first diagnosed, the life expectancy for those with CF was around 31 years, although Hatch recalls the information being “outdated.”

Only about 30,000 people in the U.S. have CF with a total of 70,000 diagnoses worldwide according to the Cystic Fibrosis Foundation.

“I remember reading articles that said in five years there will be a cure for CF,” Hanley said. “Early in college, they came up with modular treatments for CF at a cellular level, which meant they were figuring it out.”

Hanley points to her mom and late father, Tim, who passed in February 2022, as pillars throughout her life. A younger brother, Patrick, who does not have CF, has also been a reliable source of support.

“My parents did everything they could during law school and after law school to help me do what I needed to do,” Hanley said. “The circle of support with family, classmates, teachers and colleagues has helped me see things as solvable. I never had to feel self-conscious about it. I’m just incredibly grateful for everyone.”

When reports emerged several

Continued from page 2 years ago about a new medication called Trikafta that may have lifealtering effects for CF patients, Hanley vigorously pursued the chance to be part of the trial project.

“They don’t tell you if you’re on the drug or the placebo,” Hanley said. “Within five or six hours, I noticed a difference, coughing up mucus. Within 10 hours, I felt I was definitely on the med.”

By October 2019, the FDA had approved Trikafta. Hanley said the difference has been nothing short of dramatic. Her lung function increased substantially on the medication and continued to improve.

“I’ve had way more energy and I’m not coughing like I used to,” she said. “It’s been a huge life adjustment.”

The transition has meant increased independence for Hanley in the form of international travel and experiences not imagined before like climbing each step of the Arc de Triomphe in Paris and scaling a glacier in Iceland. Trips to Brussels and London have also been highlights.

While Hanley still deals with challenges related to her condition, the sky that once had a tenuous limit now appears wide open.

“It’s been overwhelming,” she said.

Q: When do you first remember wanting to be a lawyer and why?

A: I first remember wanting to be a lawyer in middle school. I was involved in the Summit School court, an alternative dispute resolution program for the middle school students and enjoyed advocating for other students and working with the other members of the court to make decisions when we served as judges. I had always been very logical and I liked to read. It seemed like being a lawyer put those two things together while also allowing me to help people- something else I enjoyed.

Q: How have you found a balance between not letting cystic fibrosis get in our way but also being mindful to take precautions that would make sure you stayed as healthy as possible?

A: This is still a balance I work on and I’m not always successful. I’m pretty in tune with how I’m feeling on a day to day basis, which helps with this a lot, but I’ve also been known to ignore how I’m feeling when I don’t want to take a break, which does not help. Working from home has been a huge help; it makes every part of my daily routine easier and I get more sleep. I’m back at the office now two days a week, but the three days a week I’m at home are great for getting just that little bit of extra sleep in the mornings. Figuring this out is probably something I’ll continue to do my entire life.

Q: What are some of your earliest memories of how your condition was impacting your daily life?

A: I nebulize every morning and every night. That gave my parents and I, and my grandparents and I, a lot of time to sit and read together, and that’s one of my earliest memories. I think that’s really where my love of reading started. As I got older, I would read to myself. So many of the books we have in our basement have stains on the pages from where my nebulizer medication dripped onto them. I still read while I nebulize today, morning and evening, I have uninterrupted time to read a book (and get nebulizer medication on the page!) or my Kindle.

Q: In what ways were your parents a source of support and encouragement as you were growing up?

A: I don’t know what I would have done without the support of my parents, my grandparents and my entire extended family. After I moved to Seattle for college, there were so many times when my dad would drop everything and drive over to pick me up from the ER or stay at my apartment and make food while I was in the hospital. My mom would come over and trade off with him when I was very sick. My parents were active in the CF community in Spokane from the time I was very young and I saw what advocacy looked like. They taught me how to advocate for myself, while always respecting my wishes about how I wanted to present myself in the CF community.

Q: Do you have some favorite memories of your time at Central Valley High School?

A: I was part of the debate team my entire four years at CV and those are my favorite memories. I took debate fall semester of my freshman year of high school. The friends I made in that class were my friends throughout high school. I still keep in touch with several of them today.

Q: Where did you find the resilience to get through college and law school while battling the effects of your condition?

A: I just took it week by week or, sometimes, day by day. I looked at each thing that came up as a problem to solve and worked with all of the supportive people I had in place to figure out how to solve it. My family, the doctors and nurses at Seattle Children’s Hospital and University of Washington Medical Center, Seattle University professors and administration, University of Washington School of Law officials and professors and so many internship supervisors – every one of them played a role in helping me face each problem, figure it out and move forward.

Q: How did working at Northwest Justice Project as an intern and later a staff attorney influence your formative years in the field of law?

A: Northwest Justice Project (NJP) is filled with courageous, creative advocates who care deeply about ensuring that every individual in Washington can access justice, regardless of their financial circumstances. Being surrounded by these advocates, many of whom have practiced for decades, taught me the importance of practicing with compassion for yourself, your colleagues, and, most of all, your community and your clients. I learned thousands of things, but two stand out: I learned how to lead others from the supervisors that led me with empathy and respect, and I learned how to center the community I am serving with every decision I make. Washington has an exceptional civil legal aid network, and NJP is just one agency. I was honored to be part of it.

Q: What advice would you give to young people dealing with the effects of cystic fibrosis or other chronic conditions?

A: I got this from John Green’s “The Fault in Our Stars” – “This is just a thing, Hazel. It’s a thing we can live with.” With disabilities, there are a lot of “things.” New diagnoses, new medications, new doctors, new surprises. And some of them are going to be lifechanging. But for me, it’s easier when I can think of each piece of new information as “just a thing.” I’ve dealt with lots of “things” before and I’m living with a lot of them still. I know you have too. You can do it.

Q: What have been some of the most rewarding aspects of working on behalf of veterans in your current role?

A: I have an incredible team at the Office of Military and Veteran Legal Assistance and the most rewarding aspect of my work is when we come together to solve a problem or do something that will make a difference in the lives of Washington’s military and veteran community. We recently relaunched our online intake form to make it easier to use. We had been working on it together for several months, so to see it finally go live was rewarding for all of us. We could finally see what we’d been working on come to life, available for anyone who needs it.

Q: Finally, how have the breakthroughs in treating cystic fibrosis impacted your life?

A: I’m on the new cystic fibrosis medication, Trikafta. My life has changed so much on this medication. I’ve gone from having pain when I breathe every day to only having pain when I’m sick. My lung function has gone up almost 30 percent. I can walk for 5 or 6 miles. I climbed a glacier in Iceland in January 2020. I took all 300-plus steps to the top of the Arc de Triomphe in August 2019. My world is so much more open now than it was before Trikafta. I wish it was available to everyone with CF, but it doesn’t work for everyone yet.

The maps provided depict where citizens have reported Vehicle Thefts, Burglaries, Malicious Mischief and Thefts. The Spokane Valley Police Department and the Spokane County Sheriff’s office analyze this data to determine high crime areas and where to allocate resources. Citizens who have been a victim of crime are encouraged to call 911, if the crime is in progress, or Crime Check at 4562233, if not in progress, to report a crime.

Current news soures

The weather in the Northwest has finally warmed up and outdoor grilling has begun in many homes throughout Washington State. Barbeque-related fires may cause significant property damage and burn injuries. According to the National Fire Protection Association, on average 10,600 home fires are started each year and 19,700 patients are sent to hospital emergency rooms because of injuries involving grills.

Last year in Washington State, cooking fires that include open grills totaled 2,121 with a total loss of over 10 million dollars. The State Fire Marshal’s Office advises residents to take steps to make this a safe barbeque season.

With the fire extinguisher at proximity, you can take quick actions if anything goes wrong. You can use the grill in the backyard or while you are camping far away without anything to worry about.

Always set the gas grill away from the house, tent, and anything flammable so that accidents can’t do much damage to your property. It is common to have problems or little accidents while using a gas grill. Many users and experts with experience highly recommend people to maintain a distance for the safest grilling.

One thing most people don’t do is the regular cleaning of the gas grill, which results in rusty parts. As a result, you can have accidents anytime, which won’t be the fault of the gas line or the cylinder. So, clean every time after cooking a meal using your gas grill so that you can know which part has become bad and change immediately.

Always keep checking the gas lines so that you can notice potential leaks and take action accordingly. Gas leaks can easily be detected by smell or hearing hissing sound around the cylinder or gas pipe. If you smell gas, turn off the line immediately and take necessary actions to repair the leak and prevent significant accidents.

We know that parties without decoration are something that rarely happens, and you should not make any decorations near the gas grill. The temperature of the gas grills can rise very high, which can fire up certain decorative pieces causing significant accidents and hurt the members.

As we cook food with different methods and recipes, it is often to fire up the food, or the flames can sometimes rise higher. So, you can keep a spray bottle full of water beside the cooking area and make sure that you can calm it down if the flame tries to go out of control.

While cooking on a gas grill, you must not leave the thing unattended for a long time to participate in the fun activities though it is very tempting. Either the chef or someone else must keep an eye on the cooking platform to notice anything unusual and take actions before it becomes too late to control.

This is an obvious point and should be considered as common sense rather than a tip. A gas grill or charcoal grill, no matter what kind of grill it is, you should not use it indoors without proper ventilation. Even if you make sure of proper ventilation, you should not cook inside your house due to several reasons. Always grill food outside and maintain the points mentioned above for having a fun time without worries.

For more information, contact the State Fire Marshal’s Office at (360) 596-3929.