According to the CDC’s most recent statistics, over a third of America’s adults — about 80 million men and women — qualify as obese. In general, those fitting in this category are putting their health in danger. But the most extreme cases are clinically defined as morbidly obese: people carrying more than 100 pounds of extra weight, and at immediate risk for serious health problems. As obesity has become increasingly common, so too have surgical interventions designed to fight it — specifically, procedures like gastric bypass surgery and duodenal switch surgery, both of which partially involve reducing the size of the stomach to help the patient in his or her weight-loss goals.
Maxwell Ivey, a 49-year-old from Texas, has a unique perspective on these problems. After losing his vision due to a degenerative condition, he ballooned to almost 600 pounds, and then, following duodenal switch surgery, slimmed down to 250. He spoke with Science of Us about what it’s like to undergo such a radical transformation, all without being able to see your own body.
How much did you weigh when you were at your heaviest?
I was never a little guy — I’m six-foot-four and I was 300 pounds in high school. But I got well over 500 pounds. Right before the surgery, which was about three years ago, I was 512 pounds. But my brother has a picture of me from a bit earlier and he says I look closer to 600 pounds. I had to lose 80 pounds before they could actually do the operation.
You don’t know for sure how big you were?
I couldn’t even see my body in the mirror. I couldn’t compare myself to other people.
When I was about 4 I was running into stuff and stumbling more than the other kids. I was diagnosed with retinitis pigmentosa, which meant that I would slowly lose my eyesight. They knew it would get progressively worse but they didn’t know how fast. I had a big loss of vision when I was about 12 or 13. These days I really only have light perception. I consider myself blind. Many people don’t like that word but I’d rather call it what it is.
My glasses kept getting thicker and it wasn’t until I was about 14 that a doctor explained it to me. I had to get large-print books and use a video magnifier. A mobility specialist taught me how to use a white cane and how to cross the street. I learned Braille. These days I do everything with speech recognition.
How did you feel about your body as a young man? Were you teased?
Pretty bad — names like Max Factor, Maxi Pads, Maxwell House, Max Truck. In middle school some kids told me to sit at the end of a seesaw. They wanted to see how many of them it took to get on the other end and lift me up. It was a trick, but it wasn’t funny. I was lucky, though, because back then the taunting stopped when I wasn’t at school. It’s not as if we had the internet. I mean, they could physically follow you home but that didn’t happen. I was a late starter when it came to girls. I lost my virginity when I was 24 years old. Blind people often come to sex later because they don’t have the visual reference.
How did you know you’d put on weight?
I went by the chart in the doctor’s office. But you know, even if I could see really clearly I probably would have thought I was just fine because most of my family was way overweight. But you know you’re going in the wrong direction when your jeans don’t fit or when it came to buy school clothes and you had to get a much larger size than you did the year before. When people gave me exercise equipment for my birthday, I got the message. It’s not like there are many places you can weigh someone you know to be well over 300 pounds. Even the scales out front of Walmart wouldn’t take me.
How do you think you gained so much? Was food your vice?
I’m from two groups who have trouble with obesity. People in the carnival industry, and the blind.
My dad used to say: “Look at photo of our family — I defy you to find someone who doesn’t have a fork in their mouth.” We don’t drink, do drugs, drive fast cars, or chase wild women, but we will eat. I ate more than I should have, at every meal. When I was working I would eat hot dogs and popcorn. My family believed that the best way to show love was through food. Lunches were big. Dinners were bigger. There was always a dessert, if not two. When you grow up in a family where you need to lift heavy objects, there’s an incentive to grow up big and strong. As I grew older, food could be comforting. It could be a reward. It’s one of the most accepted vices out there. And when you travel you don’t sleep as much as you should, your hours are erratic, you spend a lot of time sitting or standing. You aren’t getting vitamins. You’re just eating poorly and not getting any exercise.
So, you were born into a carnival family?
My family operated amusement park rides: everything from inflatable castles and merry-go-rounds to Ferris wheels, bumper cars, the King Comet, roller coasters, a Merry Mixer (she’s like the redheaded stepchild of the Sizzler). The original Sizzler has fluorescent lights. It would make you look away, it was so bright, so much more spectacular than anything on the midway at the time. It transformed the whole industry. It was the first real ride that was built for appearance as much as substance.
My uncle had one of the first Sizzlers. When they first drove it out onto the midway they woke all us kids up to come see it. It was such an event. That was the last big ride that I could see before my eyesight got bad. When my grandfather died his sons inherited the business and my grandmother loaned my dad the money to buy a moonwalk and a mechanical pony-cart ride.
What was your role at the carnival?
I generally worked the duck pond, or I helped out in one of the food booths. At first we had to draw the numbers on the bottom of the ducks real big, and when my eyesight got worse we used Braille. My parents put me next to someone, so I had help if anybody tried to steal. My grandmother owned a cotton-candy kiosk. She sold popcorn, peanuts, and snow cones, and she gave me light tasks to do. I quickly realized that the whole point was to keep me occupied so nobody had to worry about me.
When my father passed away, my mother, brother, and I took over. Eventually, we weren’t able to make the insurance payments. We went out of business, and started working with my uncle’s carnival. That wasn’t any fun because we had competed for bookings for years. I had to borrow money from my mom to buy stock. That’s when I started to put on more and more weight.
Can you describe what it’s like to move around with such a large body, or the amount of time it took to do simple things like put on your shoes, or go to the bathroom?
I couldn’t put on my shoes and socks without sitting on the bed or somewhere where I could turn to the side and put my foot and leg up on the surface. My shoes were always untied. Unless I was on a really big toilet I would have to lean so far forward to wipe my butt that sometimes I’d get material on the seat. I switched to disposable wipes so I could clean the toilet as well as my butt. I guess that’s a weight, vision, and male thing (but at least I can blame my eyesight!).
A totally blind man standing up to urinate is not always a recipe for success. In 1987 I went in for a small surgery and they gave me a urinal, which I’ve used ever since. Since I have lost the weight I have much better aim. I get closer to the target and I stand up taller. I know some men wouldn’t use a portable urinal because they think it’s not masculine. But it seems like such a small thing to do to avoid arguing with the people I share a bathroom with. I’m six-foot-four, so I have always slouched and tried to hide my size. I tend to drop my head. My shoulders have rolled forward over the years.
Do you think there was an element to it where you were trying to make your body as small as possible to blend in when you were in public places?
That’s probably part of it, but furniture will force you to make yourself small. When I went on planes I always had to have an extender seat belt and they would seat me behind the bulk containers because there’s more space. When I was working in an office I went to a store and looked through 20 or 30 seats but I never found one that would accommodate me. I was so tall and so big.
How’d you judge whether furniture could take your weight?
If you ever go somewhere with someone really big, even if they can see, pay attention to the host — I guarantee they tell them where to sit. They don’t want you to break their furniture, and that’s fair because there’s nothing fun about ending up on your ass on the floor. When I was still about 370 pounds I sat down on a brand-new recliner and the lever came off in my hand. That’s the kind of thing you want to avoid when you’re a guest in someone’s house.
Have you always lived with your family?
When I was 24 I went to Arkansas to train for a call-center job doing collections for the IRS. I had a degree in political science but I’d been unsuccessful getting into law school. I’ll be honest, I wanted to do anything to avoid going back to the carnival. I wondered how I would be seen if I spent all this time getting this degree and then just ended up right back where I started. We all worry about what people will think of us. But being in the department that was responsible for collecting outstanding balances was not the best place for me. I was dealing with people who had received threatening letters. Calls often began with “You’re throwing me out on the street.”
I dreaded going. We had a computer with a speech, but my colleagues didn’t understand how much concentration it took for me to listen to a computer talk in one ear about how much someone owed and so on and the person talk in the other. I wouldn’t take breaks or go for lunch. I had three callers tell me they were going to commit suicide. The only thing I regret is not taking my sick days and holiday pay before I left.
I came back to the carnival. I lived with my parents and my brother in a trailer and slept on the floor.
Because there was no room for you … ?
When you don’t drive and you’re working in a traveling business, unless you find a wife or a girlfriend it’s hard to justify keeping a second house just to have your own space. Sleeping on the floor isn’t as bad as sleeping in a truck. When you’re working as a family toward something you really care about you’ll put yourself out. Would I want to do it again? No. My father died in 2003, and we all moved to my aunt’s house.
After my father’s death I was physically messed up and clinically depressed. Very little mattered. If my family hadn’t convinced me to see a doctor I don’t think I’d be alive. Later, I found out that depression’s also a symptom of sleep apnea, which I didn’t know I had until just before my operation. But the death of my dad was awful. We were so close. I lost a parent, a best friend, and a business partner in one go.
I remember someone once telling me, it doesn’t matter how old you are when your parents die — you feel like you are 5 years old …
He went to the doctor and three months later we had the funeral. They think he had some form of lung cancer. He did construction work between carnival seasons so he was exposed to asbestos. He kept begging to come home, but he just wasn’t well enough. He finally convinced the doctors and he was there just long enough to set up a bed. It was about a day. I think he willed himself to die in his house trailer.
The tipping point came when we were staying in a motel and at some point in the night I stopped breathing, from the sleep apnea. I wet the bed and I voided my bowels. I almost got thrown out of a motel for soiling the sheets and the mattress cover. My family was so worried. Then my mom noticed that the skin on my legs was real tight and discolored. I couldn’t ignore it anymore. Who knows what would have happened if I hadn’t started to try and improve things? It’s no fun when you’re dependent on someone else to clean up your soiled sheets. I was a grown man too scared to go to sleep because of the displeasure of other people knowing I messed the bed.
I went on blood-pressure medication and was referred to a specialist. They also told me they suspected I had a severe case of sleep apnea, which I’d probably had since I was a teenager. They confirmed it with a sleep study, which was actually kind of fun. I had my own television, a great big bed to myself. I didn’t even have to share with the dog. It was like being in a fancy motel.
I was told I had to lose weight. I figured I’d eat healthier and exercise and make some progress. But, a year later, I hadn’t. My cholesterol and blood pressure were high. The doctor suggested that I consider the surgery, and I had it done three years ago, on October 2, 2012.
What was the operation like?
I had what’s called a duodenal switch, a newer procedure. They take less of the stomach than they do in the stomach sleeve or gastric bypass, but they also take out part of the small intestine so you are left with a little more stomach. The doctor was real nice — he explained everything they were going to do and then they knock you out. Following the surgery I had a very strict diet. No seeds or nuts, lettuce or broccoli — anything hard to digest. Before the operation I thought there’s no way I’d lose cravings or my appetite, but now I can eat 15 or 20 chips and roll the bag up. I feel full earlier than I usually would. It used to be nothing to eat two big cans of chunky soup and want more. Now I have a problem eating half. I’m down to about 250 pounds, my ideal weight. I’ve been at my current weight for at least a year. I think I’m good for life now, but 90 grams of protein is not easy to consume each day. And I have the added complication because I can’t see. For exercise I have a stationary bike; I call it “the bike that doesn’t go anywhere.” I also have a treadmill. I exercise for 30 minutes each day.
What diet do you stick to?
I start with decaffeinated coffee and then two eggs cooked in vegetable oil with one piece of toast. No bacon. No sausage. No grits. I snack on Greek yogurt or peanuts and a high-protein salad for lunch. No soda. The main thing is that I’m eating a lot less, probably a quarter what I ate before.
How did your life change after the surgery?
The last few years at the carnival I’d show up but I had no interest in what I was doing. I could have been making $1,000 a week, and I wouldn’t have wanted to be there. Before the surgery, I had decided to start my own website — now it’s the fist thing I think about when I wake up in the morning and the last thing I think about when I go to bed at night. I look forward to checking my email; there could be someone looking for a piece of equipment and I am always learning something new. The first time I wrote a string of HTML was a great feeling. I also started a blog. I learned how to edit my website and pages and I learned about themes. Then I was told I had to go on social media; each has a different quirk when it comes to using a screen reader but it was a huge thing for my self-esteem. The little accomplishments every day were great and then when you sell something that’s a real buzz.
What’s a typical day like for you?
I read a lot, listen to old-time radio shows, watch TV and movies, and sometimes play on the internet. I have two websites, so I work quite a bit. One is for selling amusement-park equipment, and then I have another where I try to help people with their problems. Sometimes I stretch out on my bed, sometimes I do it on my sofa listening to TV.
Can you understand the plot?
I just listen and during certain scenes ask people what’s going on. I’m a CBS fan — we watch Law & Order: SVU, but I wish they would stop changing the cast around. I have a digital book reader and I download audiobooks. My player is about half biography and personal development and half mystery-thriller science fiction. I’m not ashamed to admit I read a lot of romance novels.
Has your weight, or your eyesight, impacted your sex life?
I have never seen a naked woman, and I have never seen sex. My sex life exists as much as it can for a man who doesn’t have a partner. I have a healthy appetite for it and an ability to envision and fantasize. I do realize that for men sex is visual so I think I would be a much better partner and would enjoy it more if I could see it.
How so …
Let’s just say that I have yet to have the carried-away sex that they talk about in the movies. I’m still waiting for that one time where you don’t worry about it, you just do it. I would like to have that rip-your-clothes-off experience at least once. The woman I lost my virginity to was visually impaired as well but at least she’d had sex before. It was still difficult figuring out what to do and when. Who knows what would have happened if at least one of us hadn’t done it before.
What was that relationship like?
We met when I was training for the IRS job. It lasted until we both moved to different cities, maybe two months. That was the most serious relationship I’ve ever had. My weight was an issue — it’s difficult when neither person can see. It was probably the fourth or fifth weekend that we spent together before I felt like I knew what I was doing — where we were both satisfied.
What was it like the first time? Were you scared?
It was mostly just figuring out how you do it. I lost much of my vision around the time that I would have wanted to look at girls. So, I have never seen pornography. I was challenged in terms of not having visual references.
Were you able to achieve penetration? Did she have to take the initiative?
She didn’t have to go that far but she did have to put the condom on. And we discovered I’m one of these people who requires a lot of foreplay to achieve a successful result …
It’s interesting because there’s that pervasive truism that men are more visually stimulated than women, but because you can’t see you require more fantasy and role-play …
That’s not a stereotype! One of my favorite authors is Tom Sullivan. He’s convinced that men who are blind before the age of puberty have a harder time sexually in relationships. After reading him, I don’t think of it as being that big of a deal anymore. I am blind. I was obese. Combine that with my CPAP machine (a breathing mask for my sleep apnea) and it’s a wonder I had sex at all. Since you can’t see your partner you really have to get into visualizing them. I’m probably guilty of thinking about other people when I’m having sex. I have images from books, from the audio descriptions of movies. There’s only so much you can figure out from exploring someone with your hands. Your ability to appreciate people in a tactile manner is your least developed sense.
What attracts you to a woman?
I look for a girl with a good voice and a good perfume. But voice is the most important. If they talk or laugh in an annoying fashion it gets in my head and I can’t hear a world they say. I like Australian, New Zealand, British, Spanish, Russian — basically any middle- to lower-register accents. I don’t like New York or New Jersey accents. I don’t care for Sarah Palin’s voice, so if she’s representative of Alaskan accents I don’t care for that. I understand the woman who played the nanny [on The Nanny] is supposed to be physically attractive but if I had to listen to her voice for 30 minutes I would have to leave her. I’m okay with Minnesota accents.
What was it like, though, when you first thought of yourself in different terms: When you realized, wow, I have a new body …
I can’t see myself, so accepting I’m a different person was more internal. Most people can look in the mirror and go, “Damn, I’m in the best shape of my life.” My realization started when friends pushed me to take new photos to upload as my social-media profile picture. People started saying I looked handsome, sexy, or even hot.
But what about the physical feeling, you must feel lighter …
On one hand, I have trouble estimating distances in rooms I’ve been in before. My brother used to joke that my GPS needed reprogramming. But I do much better with stairs and ramps. My balance has improved so much. I can get up on the examination table at the doctor’s office more seamlessly, and I can tell they aren’t as nervous about me doing it without injuring myself. Now that I don’t have so much padding I find it hard to find a seat that my butt likes. I won’t say it’s bony but it can get uncomfortable after long periods of time. I have an easier time getting in and out of our pickup, and best of all, not only can I click the seat belt shut but I can do it without having it stretched tight on me. I used to ride around with it just slung over my shoulder so the cops wouldn’t know.
I used to wear size 62 pants or XXXXL tall shirts. Now I wear XXL tall and size 40 jeans. Earlier this year I bought new shoes and they were a size smaller. My mom thinks it’s because my feet aren’t carrying so much weight anymore.
The fact that you achieved the massive weight loss is just as important as the physical transformation?
That’s exactly it. I went through the process, did all the work, and accomplished the goal. In order for the surgery to be successful I had to lose weight first, and I did. I invested over half a year getting ready and then I invested two years getting to my ideal weight. Gastric surgery is a marathon — it’s not a quick fix. And you have to change everything about your lifestyle. I don’t think that somebody could have the surgery, lose the weight, and keep it off without transforming, internally.
Changing your lifestyle is so hard, for anybody.
Especially when you have obstacles like a shortage of money, blindness, and extreme obesity.
Since your family has been such a huge part of your life I was curious to know if you want to have a family of your own?
I’m nearly 50 so at this point it might be too late for me. I make a decent uncle, but I don’t know how good a father I’d be. But I just finished a book by that guy with no arms and no legs — he has a wife and children now so I guess it’s possible for anybody.
Do you ever feel lonely?
I’m on eHarmony and Plenty of Fish and there are some sites I can’t use because they aren’t easy to use with a screen reader. So if you know anyone who might be interested in a six-foot-four totally blind man who makes his living helping people sell amusement-park equipment, I’m your guy. I can do my work anywhere. As long as they got the internet, we’ll be okay.
When I have dates with women I meet online they show up once, but never twice. I have no way of knowing if it’s what I look like, or if it’s my personality.
So, yes, I would like to have a partner but I’m no longer desperate. I’ve spent enough of my life wondering if I was good enough — now I am at a point where women who look at my photograph tell me I look good. So, if it happens, it happens, but I’m not going to settle and take the first one who comes along. My criteria used to be a sweet voice and sweet smell, but now I think I deserve more than that. I probably need to leave the apartment for more than grocery shopping and doctor’s appointments. I need to get out in the world.
What are you looking for?
Think about my equipment sales. It doesn’t matter how good your listing is, it has to reach somebody who wants that specific item. It’s like I’m selling a Ferris wheel. The ads are out there, it’s just the people who want to buy it haven’t seen it yet.
And of course, even though I have a good opinion of myself, I know my income is erratic and that’s not an easy sell. It would probably be better if I had a real job. And I think women assume that I’m only looking for tall women, which isn’t really my thing because my first serious girlfriend was four-foot-ten. I’m not afraid to go to the bottom shelf, if there’s a reason to go there.
It must have taken so much energy and courage to make a change given that you were so large, and that you are blind. What do you think gave you the strength?
I was raised with the drive to change things. Maybe I just didn’t see it for a while. I always used to go with my dad when he was making trips because he wanted someone with him. We had an attitude, when we got in the truck, it was us against the world. One time we made it back with a 30-by-30 inflatable castle. Everybody asked: “How did you do that!?” My dad just said we didn’t have a choice.
Comparing your self-esteem to the period before you had your surgery — especially when your weight ballooned — how has it changed?
I’m much more open to possibilities. When I was a kid all I ever wanted to do was be in the carnival. Then I started a website that all changed it. As I have gotten physically healthier and developed my mental and emotional state, my first instinct isn’t always “no.” Recently a woman who coaches people on body image told me I’d won a free hour session with her. I told her to give my hour to someone else. I’m happy with my body.