Learning to manage a complex medical condition like asthma is hard for adults – it can be frustrating and scary for children. But they can and should learn to manage it from the very beginning.
Why? Because knowledge does more to control fear than anything else. But also because ultimately even children MUST be capable of doing everything in their power to monitor and address any problems with their breathing. Not being able to do so can be fatal.
A few weeks ago, one of my doctors laughed at my answer to a question he asked about one of my medications. “Do you know what I like about you?” he said. “You actually know all the medications you are on, how long you’ve been on most of them, when and why they were prescribed. And you can tell me! And you have so many – there are four pages of them here – and so many conditions.
“I have patients who cannot remember the name of the single medication they are on. The single one.”
“You owe your appreciation to a doctor in San Antonio named Cesar Termulo, Sr.” He’s the one who taught me how to manage my asthma and be resilient in the process, using a method we called the Checkbook.
Learning to live with asthma
I’d had another very bad spring, with major attacks and more than two weeks in the hospital plus long stretches at home. It had become obvious to my parents and the doctors treating me in the hospital that I needed more help than my pediatrician could provide. And it was 1968. Some advances in treating asthma had been made, but not many. And not effective enough in my case.
There weren’t many specialists who were interested in taking on someone so young. Or who had such a severe form of asthma. Luckily my mother knew a number of physicians professionally. One of them had recently brought on a young internist, Dr. Termulo, whose extra training in pulmonology in medical school in Ann Arbor, Michigan would make a big difference for me. He agreed, provisionally, to take me on, but wanted to meet me first.
At our first appointment, he caught me off-guard when he asked my mother to wait outside so he could talk to me alone. Like other 12-year-olds, I was convinced I was a fully qualified adult who just happened to be trapped temporarily in a younger body. And having my mother! accompany me on every doctor’s visit like a little kid was just proof that they didn’t respect my maturity. (You’re right – I was NOT fun to raise!)
Dr. Termulo asked me some fairly standard questions about my asthma and my most recent hospitalization, listened to my lungs, and then he said, “What do you want?”
“What do you mean?”
“What do you want? Do you want to be treated like a little kid, and we tell you what to do and how to do it, and where and when. Or do you want to be in charge?”
“What do you mean ‘be in charge?'” I was naturally suspicious. No grown-up had made anything like this overture before. There had to be a catch.
“You will be in charge of figuring out how your lungs are working every day, whether you are starting to get sick, or if you are fine. I’ll teach you how to tell, but then you will be in charge of telling me using medical terms, what’s wrong, and how bad it is. And I’ll teach you how to know when you need to start certain medicines, or when you need to get help. When you need to get to the nurse’s office at school, or to call your mom, or to come here – or to go to the hospital.”
“But I’ll be the one?”
“Yes.”
“And Mom doesn’t come in here all the time?”
“No. I still have to tell her about important things, like if we change your medicines, or if you have to go to the hospital.”
“Okay.”
“Okay?”
“Okay.”
And that’s how it began.
A real partner in my healthcare
I began to learn, not only how to listen to the subtle, and occasionally harsh, messages of my body, but what it was like to have a physician become a partner in my healthcare. To have him teach me what I needed to know. He made me more confident I could do what I needed to do, that I was capable of getting through even a difficult time.
What Dr. Termulo really was teaching me was resiliency. A confidence that you can survive even the worst experiences.
That confidence certainly wasn’t gained easily, for me or my parents. I’m not even sure Dr. Termulo wasn’t faking his confidence in my ability to get it right sometimes.
But ya fake it till ya make it, right?
Listening to my body
Dr. Termulo taught me how to monitor my breathing and overall health signs each day (before things like peak flow meters could be found in every asthmatic’s home). When I first woke up, I’d do a sort of check-in, starting at the top of my body.
Did I sleep well, or was I really tired, as if I hadn’t slept at all? Wake up coughing a lot during the night? Did my chest feel tight or as if an elephant were sitting on my chest? No. Good. Wheezing? No. Sneezing, eyes or skin itching? Oops, allergies are acting up.
Perhaps most valuable, Dr. Termulo developed a way for me to think about the different triggers for my asthma attacks. He taught me how to make an educated guess as to whether I could get through the day with extra antihistamines, if I was coming down with an infection and needed to stay home, or if I was already starting an attack.
The health checkbook
My parents were determined that I grow up with practical personal financial skills (this was before the Fair Credit Act of 1973), so I received a small clothing allowance each month and had my own checking account. Each month I had to reconcile my bank statement, and plan for major purchases, like new shoes or a winter coat. The same basic principles applied by Dr. Termulo to my “health account.”
He said, “Bodies function a lot like a checking account in a bank.”
Some people are wealthy and start with a large balance in the account as well as regular deposits, and virtually no withdrawals. Others were very poor, with lots of withdrawals and not enough in deposits, so they were always overdrawn – and ill.
Some were like me. I had a safe home, healthy food, and good medical care, everything else I needed, so I started with a solid, but not large, deposit.
Deposits and Withdrawals
Daily deposits came from things like my allergy shots, medications like antihistamines. By removing as many triggers as possible (no carpets or smokers around), getting vaccinations and being careful not to get overtired, I hopefully could keep my balance teetering on the positive side.
But I also had a lot of withdrawals from all my triggers – all my allergies to foods, pollen, mold, dust, pet dander, smoke, fumes from cleaners or fragrances. While we could do a lot about controlling my triggers at home, we couldn’t do anything about the ones at school – lack of air conditioning in the older buildings, dusty auditorium, sick students spreading germs. Exercise would sometimes cause me to start wheezing. Infections almost always became asthma.
If it was winter and mountain cedar was releasing its clouds of mace-shaped pollen into the winds, I would have a very large withdrawal before I even woke up in the morning. If I had PE outside that day – and the coach refused to accept my medical excuse (they would do that sometimes, believing that asthma was ‘merely a way to get out of class’) – I would usually be ill before the end of the class.
Or perhaps it was October, so ragweed pollen was bad, but not severe. (A withdrawal.) But I had also been spending a lot of time in the dusty school auditorium for an English class (withdrawal), and not sleeping well because of congestion that was getting worse (triple withdrawal).
Let’s say I wanted to go to the Saturday night football game with my friends and then to a party. (One big and one moderate withdrawal.) I would be seriously overdrawn – meaning in all likelihood I would develop asthma before the football game was even finished and might have to go straight to the ER, not even going home first.
conceptualizing stressors, triggers
The Checkbook gave me a way to understand the stressors and the triggers.
Did it mean I didn’t sometimes still go to the football game? Of course I did. And still sometimes ended up being taken home (or once rushed to the ER) by friends, who usually handled it quite calmly, although I’m sure it scared the hell out of them.
I was a normal teenager, who wanted to be with her friends, doing normal teenage things. My parents tried to allow me some leeway to make decisions, even knowing that getting sick on Friday or Saturday might mean missing some school the next week. If there were exams scheduled for those days, they took precedence. So I’d be taking a short-term early gain against a longer-term long-lasting loss.
Rebelling against chronic illness
Everyone with a chronic illness at some point or another rebels against the strictures. It’s hard to know that everyone around seems to be free from limitations, medications, doctors, hospitals, tests … while you …
And I think teenagers with chronic illnesses just amplify their normal teen rebellion by fighting against the disease’s chains. Think teen rebellion times 50. (Mea culpa! Sorry, Mom.)
Which is to say, there were times when I am certain Dr. Termulo wanted to strangle me at least as much as my parents did. But he controlled himself. As did they.
If I got sick and it was worse because I had been reckless, Dr. Termulo had a way of looking at me, and sort of shaking his head. But then he’d focus on treating me. I would feel even more the fool (which was a pretty effective way to keep me from repeating whatever it was I’d done).
I didn’t realize it at the time, but Dr. Termulo was also helping me to learn that I could survive having an attack without my mother around. Like most kids then, my mother was the one who took me to medical appointments, took care of me when I was sick. For a number of years, she even gave me my allergy shots. And countless times she was the one who raced me to the hospital. She’d been my first defender against asthma. Now I had to learn to fight on my own.
But the three of them ultimately made it possible for me to believe I could work and travel abroad, the way I’d always dreamed. My parents and Dr. Termulo always made me believe I could fly. So I did!
Links
I was looking for some resources for a friend with a sick child and found some great ones online. I wish they’d been available for my parents. The messages in these are also applicable to people of all ages, really – so don’t dismiss them just because you are an adult. There might be something helpful. And if you find something else, please post the link in the comments section to share!
The first is a powerful first-person account by the mother of a young woman with a chronic illness. It’s touching, frightening, sobering and very very accurate. Read it! https://healthcareinamerica.us/being-real-about-chronic-illness-a-message-for-parents-who-are-caregivers-5526dea281f
The second is the flip side – what it’s like to be the parent and be the one with the chronic illness. Another one that is important. If you are lucky enough to be healthy, maybe it will encourage you to be kind and helpful to a parent with a chronic illness that you know. https://www.psychologytoday.com/us/blog/chronically-me/201901/parenting-chronic-illness
The third is from the University of Michigan Medicine’s Your Child Development & Behavior Resources, a guide to information and support for parents. It’s a thorough and helpful breakdown by age that provides useful tips for children from infants to young adults and including parents and the family unit. http://www.med.umich.edu/yourchild/topics/chronic.htm
