Friends. Today, my message is simple. Your quality of life matters.
Quality of life is integral to physical health
Inevitably, you will face trials that require quality of life sacrifices for survival. “Sacrifice” is a carefully chosen word, in the way one might sacrifice a legion to win a battle. It isn’t an easy decision, and it shouldn’t be. Our treatment is strategic, every move counts in our war, especially the painful moves.
We were born child soldiers but, yes, we are also human and did not enter this fight voluntarily. We must nourish our souls because high morale is as important as any other asset.
How do we fight if we’ve lost the will to fight? What charges us without goals to charge toward? These motivators do not exist without a high quality of life; without living outside of our disease.
My battle plan follows:
Cultivate social networks
Chop toxic relationships from your life. It hurts, short-term, but you won’t regret it in a stage where every microgram of energy counts. CF leaches you — don’t allow things within your control to do so as well. You can’t control the person, but you can control your connection. It may require, yes, sacrifice.
Be cautious with romantic relationships, but know they can serve as mighty motivation. My determination through end-stage CF was to stay by the side of my then-girlfriend. We amicably split a year ago, but our friendship persists. Have the maturity to accept the end of relationships to maintain motivational altitude.
Oh, also, remove negative social media personalities from your feed.
Stand up for yourself
Question doctors’ decisions. You have the right to reject treatment, though there may be consequences. For your safety, do not stop treatment without them knowing. Understand the differences between noncompliance and practicing bodily rights.
Remind doctors of your quality of life, which often is not their priority. You do not have to pretend mental illness is a “symptom” rather than a disease. You do not have to accept deafness from ototoxicity as being “worth the antibiotic advantage.” You do not have to accept the minimization of side effects rather than prevention.
Your doctors are essential, and they know medicine better than you. But this is your body. Your body. They are providers, not dictators, so have the boldness to say no in select situations. If you disagree too often, seek a different specialist.
Have fun in your fight
Your life is serious. Too serious. Don’t like your boring suburb? Move. I moved to the Santa Cruz beach town when people said only dreamers go there — broke artists, surfers, and skaters. I’m here now, and I’m dreaming lots. It’s healthy and wonderful. Spend money to treat yourself, if you can afford it. I’m sipping $4.50 coffee, and it makes me feel good. Hipster jokes welcomed.
Surf with Mauli Ola Foundation. Pursue a grant from the Cystic Fibrosis Lifestyle Foundation. Sit surrounded by inspiring nature while you do therapies. Come up with treatment games, like drinking games. I regularly dance and sing in public — I don’t care that I suck at dancing and singing because I’m having fun. Laugh as much as you can; watching comedies served as my best airway clearance solution. Explore as many creative hobbies as you can until you find a passion.
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Somehow, my move has been slightly controversial in my social circles (y’all are weird) and people have been wondering why I’d move so far out of the way of my life in San Jose. I sit on this rock, writing, with the salty breeze licking my face. Awaiting sunset. And I ain’t wondering.
Pros and cons and pros and cons
Be a list master. Lots of pros and cons lists. Lots of them. Unless lists make you anxious. Then … don’t.
In high school, I was deeply depressed. I engaged in, um, street art. The rebellion gave me adrenaline, which smashed waves of depression. (Don’t do anything illegal. That’s bad.)
In college, I hurt and I vomited, and my food tasted like dust. I used medical marijuana under the direction of my doctors and against the advice of older peers. They did not understand, and their non-understanding was contagious back then. It took extreme suffering for me to “get it.”
I haven’t done street art or marijuana in years, but they pulled me through to today. I am grateful.
Screw mental health stigmas
Our tough act hurts us when it blooms into pride unaccepting of help. That hurts you — so reject that attitude. Sprint to a therapist, a psychiatrist, a school counselor. Run for help and don’t pause until you get it. Above all, I need you to take care of yourself. Promise?
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.