Alexis Dow talks living with cystic fibrosis, a hard childhood and the importance of kindness.
Today our society is flooded with self-help literature, podcasts and ted talks that stress the importance of thankfulness, especially during hard times. However, when push comes to shove, we find that it’s hard to notice the diamonds in the rough. Some of us spend our whole lives trying to develop a grateful mindset.
For Alexis Dow, maintaining an attitude of gratitude in times of hardship is not a foreign concept. At the age of nine months, Dow was diagnosed with cystic fibrosis.
According to the Cystic Fibrosis Foundation’s official site, “cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time.”
Dow’s daily life looks different from those not carrying CF. Dow said she’s takes over twenty different medications, and switches back and forth monthly, on top of doing daily treatments.
“I have to do four treatments a day, count that [time] up throughout the week, that’s a lot of time.” Dow said. “[I’m] doing treatments all day long. There are breaks in between treatments. Treatments are 20-50 minutes. It depends on you. If you feel like you need to do longer, then do longer. It’s about being responsible.”
Dow said the most challenging aspect of living with cystic fibrosis is constantly feeling ‘on-edge,’ and the restrictions involved with that. During high school, Dow had to remain six feet away from students carrying CF.
“It’s difficult because I would like to go to concerts and go to the places that my friends are going but, I know realistically, that’s just really not for me,” Dow said. “This is partially because of the fear of being around other people with cystic fibrosis. You can’t be within six feet because you could have the same mutation. We all have different genotypes; but, we all have different germs, which means it can be detrimental or most of the time-deadly.”
In addition to living with CF, Dow said she struggled with an unstable home-life up until she moved out at 18 years old. Her mother was absent-physically, emotionally and mentally and facilitated a deadly environment.
“My mom treated me and my illness like a burden and would’ve rather raised 30 cats as her children [instead of] her one sick child,” Dow said. “The house was full of mold growing all over the basement and bathroom. The bathtub was sinking in and eventually will eat through into the basement because of the deterioration. There is cat hair, pee, poop, puke and 12 liter boxes in every single room around the house.”
Dow said that if asked, her mother would still claim that there was no issue with the quality of her household and ignored its impact on Dow’s health.
“[My mom] coached me on the drive to my clinic for my quarterly appointments every single time on what to say and how to answer questions when the doctor would ask how my PFT (lung function) would drop 50 percent within only two to three months and how many cats we had. I had to say we had five, when there were 30 cats plus two dogs,” Dow said. “She refuses to take ownership in the fact that living at her house took years off of my lifespan and caused detrimental, irreversible damage to my already-deteriorating organs.”
In spite of her low health quality as a child, Dow’s lung functioning is currently at 89%. This is due to the drastic change in her living environment.
“I’ve noticed a difference, obviously. I live in an apartment where there are no animals or anything [unhealthy]. I think if you eliminate a lot of things out of your life, you can be really healthy. It just takes awhile to get there. Especially if you don’t have help from family, or you don’t have a lot of support. It’s difficult. It has taken me two years [to improve my health] but, it’s a process,” Dow said.
In addition to leaving behind a toxic environment, Dow said it is important to practice other healthy habits to maintain her mental health.
“I take care of my mental health while dealing with my constant state of alertness because of my CF by going to counseling every two weeks and keeping close contact with my social worker at my CF clinic. I remain positive and verbalize my needs or frustrations,” Dow said. “If neither counselor or social worker is available at the time, I color, journal, or keep my time distracted in a healthy way.”
Since she realizes she’s not the only one who experiences hardship, Dow said she likes to be empathetic to what other people are going through.
“My number one piece of advice is to be kind. There’s always somebody going through something,” Dow said. “Cystic fibrosis is already hard enough for your mental health and then to add on cruel people, it’s just sick.”
Overall, Dow said she maintains a positive outlook and refuses to put an expiration date on her life.
“I am grateful that they are making so many medical advancements and my medications are always changing. It is possible to live, maybe not a normal life; but, you can still live your life and be happy that you’re on this planet.”
Very nicely written, Kenzie.