A conversation with Kathy Luciano
For the past month or so, I’ve been thinking a lot about agoraphobia. Agoraphobia, a fear of being in crowds, on public transit, or in places that are hard to escape from, affects between 0.5 and 1 per cent of Canadians. For Broadview, I had the opportunity to write about how agoraphobia rates are on the rise due to the COVID-19 pandemic.
What I didn’t have the opportunity to write about is the personal connection I have to agoraphobia. My grandmother, Kathy Luciano (affectionately referred to as GK, short for Grandma Kath, by her friends and family), had long overcome her agoraphobia through exposure therapy and counselling by the time I first met her at around two years old (when my mother began dating her son). But, as I got older, and suffered from my own anxiety and mental health issues, GK opened up to me about her experiences with the mental illness. It was a little surprising to find out my former travel agent grandmother, who now lives between Toronto, Canada, and Exuma, Bahamas, once had trouble leaving her home.
I spoke to my GK about her struggles with agoraphobia, how she overcame it, and the advice she has for others who are suffering. Our condensed and edited interview is below.
Tell me about when you first started experiencing agoraphobia?
Kathy Luciano (GK): I knew that would be the first question. I probably had it as a kid but didn’t recognize it. It was around 16 or 17 when I took my full-blown attack. I was working. It scared me so bad I didn’t go back to work for two weeks. I couldn’t breathe. I was dizzy. I thought I was passing out. My boss had to drive me home. And that was the start.
Can you tell me about what agoraphobia felt like for you? Once it settled in and it was a regular problem you were contending with, what symptoms did you experience and what did it feel like when you were experiencing those symptoms?
GK: After that initial attack is when it started. I wasn’t comfortable going out. I could get out—it was coming back. It was always coming back that it hit me the worst. I could never get home quick enough. I don’t know how to explain it to you, Miranda.
I cancelled a lot of things. Friends would be doing things and I just wouldn’t go. I wasn’t able to go because I was afraid of having an attack.
Then I got married at 18 and I became very sheltered. It became worse than when I was a teenager. I used to sit on the steps at [my neighbour], Mary’s, a lot and that was my life. Even to walk down to Kingston Road, I could have an attack between home and down there.
It was odd. I didn’t have a real tough time leaving—it was the coming back. I’d want back and my legs couldn’t carry me fast enough to get into that house.
Can you describe what an attack felt like?
My heart would be beating a thousand miles an hour. I would get short of breath—like a panic attack. When I finally went to the doctor, they started to prescribe Valium to stop these attacks.
When your Dad was little and I had to go to school when something was going on, I had to stand by the exit. Everywhere I went, I knew where the exits were. When I would get that feeling, everything would be closing in on me. I’d have to get out.
…I had several really good jobs and ended up walking out because I would take these panic attacks and couldn’t go back to work. I worked at the Bank of Nova Scotia in their payroll department. I lasted maybe three weeks. I couldn’t go back. It would come over me and that would be it. I’d be overwhelmed. I’d get on the GoTrain to go to work and I couldn’t do it. It was awful. Man, I wish I would’ve stayed at that job. I would have had a good pension.
Did being prescribed Valium help at all?
It would help, yes, but it wasn’t a solution, that’s for sure, because the attacks got more frequent.
Interesting. And how long did you suffer these attacks for?
From when I was 16 to when I was 32.
And the older you were, the worse they got?
Oh, yeah. I was basically housebound. I started to go to a psychiatrist and he put me into group therapy. None of that really worked for me because it was with people who were suicidal—I didn’t have those thoughts.
It was a piece I read in the paper. The lady’s last name was Warr. She had written this article on agoraphobia and when I read it, I started to cry because it was exactly what I was feeling. I got ahold of her and she directed me to a doctor in Scarborough—Dr. Chang, he’s a behavioural therapist, I guess. He’s the one who gave me my freedom.
Can you tell me about your time with Dr. Chang? How you were able to overcome agoraphobia with his help?
It started off, first, by talking. I guess he’s got to get to know you.
His office was across from a Sears outlet store. Before I would come for my appointment, I had to go over into the Sears. Even if I just went inside the doors and stood there for ten minutes and then came out. Slowly, I had to start shopping or looking around.
I would go into Woolco and the lights would make me have a panic attack to get out of there. We started, step-by-step, going through all the stuff that scared me. He met me at Centenary Hospital and took me up and down on the elevator… Elevators don’t bother me anymore. He helped me with that.
…It all boils down to your childhood. I understood when it was over why it happened. I was a young kid. I had an alcoholic father who used to terrorize us. Not every day—he was a binge drinker. I was filled with fear as a little kid. I would run to my friend’s house and that was my safe house. It was the coming back home when I would be scared. I wouldn’t know what was happening in the house. You see? There’s the coming back [symptom].
It makes a lot of sense.
Yeah. That all started from a young kid. I don’t have any recollection of my young childhood, I would say, maybe until I’m about eight years old. And there was a lot of running to the neighbour’s. He used to beat my Mom. That’s where the fear came in. I was a scared little kid. Probably, I was scared from very young but I don’t remember it.
We used to stay at my Grandma’s a lot but I didn’t know why. The thing that broke the spell for me, was when I actually had to say the words to the doctor about my guilt: As a ten-year-old child, when my Dad died, and [I said] in my mind: Good. [Talking about] that broke the spell.
See, I wouldn’t talk about my Dad when I started going to therapy. You’re supposed to love your father. You’re supposed to respect your father. I didn’t have those feelings. That makes a little kid guilty. So that’s what it ended up being. I lived pretty sheltered with my Mom. She was pretty protective because of all this crap and that reinforces your fears.
Dr. Chang went out of his way. That’s what he did. I was living in Uxbridge and he would make a special trip up, even after I was over agoraphobia. He would come to the travel agency and we would go out for coffee. I wasn’t even his patient at that time it was just, “How are you doing?” I think he maybe gave me reassurance that no one else gave me. I trusted him.
It sounds like he was a very dedicated doctor. At least in my experience, not many of my counsellors followed up with me after. I want to keep focusing on Dr. Chan for a moment. I want to talk about the decade in which you received help for your agoraphobia. I want you to talk to me about what mental health attitudes were like for people who were looking for mental health help back then.
You wouldn’t tell anybody that you were going for help. Grampa Joe once said to me, “Don’t you tell anyone what you’re doing. I don’t want them knowing I’m married to a mental case.” That was the attitude.
And what decade was that in?
That would have been in the 1960’s. Late 60’s and early 70s. Mental illness—it put a label on you. Not like today. When somebody tells you that they’re going for treatment or going for counselling for something, you say, “Oh, that’s good. I hope you do well.” They wouldn’t have said that to you back then.
I want to go back to this because it such an interesting thing: when you finally did overcome your agoraphobia, you chose to work in travel, which I think is just about the furthest thing away from being afraid to leave the house. Can you talk to me about how you got into travel and what that was like? Especially coming from agoraphobia?
We had moved to Uxbridge and I was working for a fuel oil company. The man there, his name was Harry. He travelled a great deal. He said to me, “You know, travel’s the best thing. You should take a trip.” I just didn’t know if I could do that. Grampa Joe would not travel. He didn’t want to go anywhere. Linda, [my best friend], had started to travel with her husband—they had been a few places. Harry had just come back from a trip to the Bahamas and told me about this resort. He said to me, “You should really go. You and your friend go even if Joe doesn’t want to.”
And that’s how I ended up on my first trip. I can remember getting on the airplane and looking down the skinny aisle. I stopped and Linda looked at me. I said, “I don’t know if I can do this.” But I’ve never looked back. I can go down that skinny aisle and not have any fear.
With that first trip to Bahamas—were you already working in travel?
No. I was going to Centennial College to become a title searcher for a lawyer’s office. When we were booking that trip to the Bahamas, I went into Stonehouse Travel in Stouffville, [Ontario,] to pick up a brochure. It was about two weeks later; Linda and I had decided that was the resort we were going to go to.
I went in there to book it and he said, “You’re the lady from Uxbridge.
I said, “Yes.”
He said, “You know, I’ve thought a lot about you.
I’m thinking, what’s he talking about?
He said, “How would you like to work here?”
I said, “I’ve never thought about working in travel.”
And that’s how it started. I quit the course at Centennial and went to work for Jed. Can you imagine? It was random, right off the street like it was supposed to be.
Wow. And you would go on to work in travel for years and years after that.
And go on to travel many places as well, which is kind of amazing when you think about you used to have trouble walking the few blocks from Sandown Avenue to the Kingston Road.
Yep. Do you remember I couldn’t drive over bridges?
That was another thing. I had more than one little quirk. I could not drive over a bridge so I could tell you how to get anywhere without going over a bridge. I kept that even when I was able to travel. This bridge thing was still there.
When we left Uxbridge and went to Scarborough in an apartment, I had to go over a bridge. I couldn’t drive on the edge [of the road] where you could look over. I would go in the middle lane. Now I don’t even think about it.
If you do something enough times, you can get used to it. That’s what Dr. Chang used to tell me. The first time is hard. The second time is not quite as hard and you progress like that. I beat that one.
I’m wondering if you have any advice for people who might be suffering from agoraphobia?
I would say get a friend, tell the friend how you feel, and have them go [out] with you. It’s almost like you need a safety net or you feel you do. To do something on your own would be really hard. I can remember all of that.
Even when I got the criticism from Grampa Joe, he was my safe person. That was the person that would have to go. I used to go down to do grocery shopping. If they didn’t get me through the checkout quick enough, because I would feel these attacks coming, I would have to leave my groceries in a buggy and get someone to call him to come and get me. He was my safe person even though he was the most negative to me.
I’m very grateful you got the help you needed and lived a full and exciting life.
Got past that didn’t I?
You sure did. Anything to add?
Anybody that is going through that situation, right now, it’s got to be real bad. They can isolate in the house but what are they going to do when the doors open again? They’re going to go right back to square one.
It was only reading that article in the paper [that got me out of it]. I tell you one thing, if Mary Warr is still alive, and you ever get to interview her. You tell her, your grandmother thanks her so much. If it wasn’t for her article. It was her article that saved me. And her taking an interest to find me a doctor. See? I guess publicizing this stuff does help. I’m sure I’m not the only one who read the article and got something out of it.
Following my conversation with GK, I looked up Mary Warr. Warr herself suffered from agoraphobia as a girl into young womanhood. In Toronto in 1975, Warr founded the Freedom from Fear Foundation, a nonprofit helping those who suffer from anxiety, panic, and agoraphobia disorders. She practiced as a therapist and counsellor, operated the Personal Growth Centre, a treatment and learning facility in Calgary, Alberta, and self-published several books about overcoming health issues. Though likely long-retired by now, I was able to send a note to Warr’s Facebook thanking her for everything she’d done for GK.
This issue: Social context of agoraphobia in women
In 1874, Karl Friedrich Otto Westphal, a German psychiatrist, described a series of patients who suffered from panic attacks in squares, empty streets, on bridges, and in crowds; anticipatory anxiety; and a fear of incapacitation. He coined the term “agoraphobic” from the Greek word, “agora,” meaning marketplace and “phobia,” meaning “fear.” Not a single one of the patients was female, likely due to the fact that, in the 19th century, few women would have been allowed in public spaces unaccompanied.
Today, prevalence rates of agoraphobia are higher in women than in men. While discussion and treatment of mental illness is often rooted in the biological, a growing number of researchers and doctors point to social contexts in which illnesses emerge to find clues for holistic treatment. For example, during a Compassionate Inquiry workshop I attended in October 2020, Gabor Maté pointed out a study that demonstrates that the more episodes of racism an American Black woman experiences, the higher the chances she’ll suffer from asthma. In that same vein, increased rates of agoraphobia in women may have to do with centuries of Western indoctrination that a woman’s place was in the home.
In Safe at Home: Agoraphobia and the Discourse on Women’s Place, a 2011 thesis paper by Suzie Siegel for the University of South Florida, Siegel eloquently points out why agoraphobia, in some women, may be an orderly reaction to a disordered society:
“Today, women who panic in public places are diagnosed as abnormal and dysfunctional. They may be. But their psychological disorder – agoraphobia – cannot be separated from the social order… Men have beaten women for staying out too late, they have raped women caught alone, they have refused to hire women or paid them less than men, they have harassed women in the workplace, they have looked down upon the women of the streets, they have ridiculed women who did not know their place, they have shut them out of politics, and so on. …To some degree, I suggest [agoraphobia] is a rational response in a world that punishes women more than men for their public behaviour.”
The Agoraphobia Workbook: A Comprehensive Program to End Your Fear of Symptom Attacks
By: C. Alec Pollard and Elke Zuercher-White
The Agoraphobia Workbook is a comprehensive guide to understanding and overcoming agoraphobia. The book offers practical tools to anyone hoping to better manage specific fears and symptoms. It takes readers through exposure and desensitization exercises and includes tips on managing setbacks, avoiding relapses, and finding help and support.
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Great piece Miranda. Thank God I read that article so many years ago. I hope someone reads this and realizes they are not alone and gets help so they can " be free". GK