Living with dysphagia: about how not being able to eat changed my life

*A little disclaimer: The story you will read below is a really honest portrait of how I live dysphagia. However, I am neither a doctor nor a therapist, so don’t take anything as medical advice… more like life’s advice! ;) (I apologize in advance for any medical term I get wrong! I tried to double check everything)

Those of you who know me know that six years ago I lost the ability to eat. Well, to eat through my mouth. For those of you who don’t know me (or don’t know me very well), let me explain: six years ago I underwent a complicated brain surgery which led to many sequels. One of them was a severe case of dysphagia, which is the medical term for the “difficulty or impossibility to swallow”. I don’t know if it was a result of the tumor I had, the surgery or the cardiorespiratory arrest I suffered a few days after the surgery, but that doesn’t matter anymore; the fact is that I can’t swallow. (I had no idea that one could lose the ability to swallow, but apparently there isn’t anything we can’t lose, which is why we have to make the most of everything we do have).

I imagine there are a lot of types of dysphagia, but in my case what happened is that my epiglottis stopped working. The epiglottis is a little “door” that we have in our throats which closes the trachea when we swallow, forcing whatever we are swallowing to go down the esophagus and into the stomach, protecting our airway and lungs. Because my “door” doesn’t work, anything I swallow goes straight to my airway, which basically means that if I ever decide to eat a doughnut, the sprinkles will end up right in in my lungs.

My speech & swallowing therapist in the neurorehabilitation center I attended was Lupita. Lupita was really close to me during the whole rehabilitation process and I worked with her really hard for months so that I could, as she said, leave the center eating a hamburger. A hamburger was the metaphorical horizon towards which we directed all our efforts, (and I say metaphorical because what I really wanted to eat first were some chalupas). Even if the “hamburger” never came, I am really thankful with Lupita for all the work we did together. As you can imagine, dysphagia has been really difficult to overcome and even to accept; it’s not so easy to go to a reunion with friends and be the only person who can’t enjoy a cracker with cheese. Fortunately, I have been able to slowly come to terms with dysphagia and make it a normal part of my life.

Because my recovery has been quite a journey, I’ve decided to share with you a little bit about what it has been for me to live with dysphagia. I say for me, because I am sure that there are many people with the same condition who live it in a completely different way. I think this subject is important to talk about because the first step towards accepting something is talking about it normally, and frankly I need to learn that there is nothing abnormal about me. It is also important because like dysphagia, there are many other disorders and diseases that affect many people and that are not talked about that much. We have to talk about them in order to understand that there is not a single definition of “normal”, and that there are a lot of realities different than our own.

Because there are a lot of common questions that people ask me about dysphagia, I decided to write this post as a FAQ list. First of all to make it easier to read, and second of all because I had always wanted to write a FAQ (#truestory).

1.- How do you eat?

I now eat through enteral feeding, which means I get all my food through a feeding tube. There are different types, mine is a gastrostomy feeding tube that connects directly to my stomach, through which I pass my food which is completely liquid. A few years ago I used a gravity feeding set to eat, which is a plastic bag that hangs from a post and connects to the gastrostomy tube. However, that was really problematic because I had to use it in my house, and that meant I had to accommodate every schedule in order to be home whenever I needed to eat. Imagine having to make your class schedule at college or choosing a time at the movies.

Fortunately, my mom is very wise and she developed a method which allows me to eat whenever I want wherever I am. Now I keep my food in small plastic bottles, similar to the kind you keep ketchup in. To pass my food from the bottles to the feeding tube, I use an asepto syringe as a funnel. The best part is that I can carry everything in a small lunchbox or bag so I can go wherever I want and even travel. (On 2014 I went to Boston for the DXB Conference, which was my first time traveling alone!). I used to carry everything inside a Chococat lunchbox, but now I use a cute one with green stripes that some friends gave to me for my birthday :)

2. How often do you eat?

The ideal is four times a day. Each time I take two bottles of about 300 ml or 10 oz.

4. What’s in your food? Is it something special?

Not really, it’s basically a mixture of all food groups. The normal recipe given to me by the nutriologist has: chicken, fruits, vegetables, bread, milk, honey and oil. Everything goes in the blender and is then strained so there aren’t any small pieces that can get stuck in the gastrostomy tube. Sometimes we substitute the chicken for tuna or another protein, and instead of bread we can use María cookies. Fruits and vegetables can also vary, which gives the food different coloring. Usually it’s like a cream color, but sometimes it’s orange or green. Now there’s a new variety in my “menu” which has beets in it, so it’s a pinkish color that can go from a “strawberry yoghurt pink” to a “Barney the dinosaur purple”. (It’s like the food you can see in the picture).

5. What does your food taste like?

Honestly I’ve never dared to try it because chicken, fruits, vegetables, bread, milk, honey and oil. It doesn’t exactly sound gourmet. But you can ask my boyfriend Miguel or his brother, they have already tried it and say it doesn’t taste bad. I know, it sounds like they’re really crazy for trying it, but don’t worry, it’s because they are both scouts, so they’re prepared for anything. (The truth is my boyfriend was a little bit braver than his brother because he tried it a long time ago and from a cup; his brother just tried it recently and he used only a small spoon, so… I’m just saying…)

6. Does it hurt when you pass your food?

No, it doesn’t. Sometimes there’s a little bit of irritation on my skin around where the tube is and that can hurt, but it’s nothing that a balm or in more extreme cases, a new gastrostomy tube can’t fix. Usually they change my gastrostomy about every eight months. (A little bit more or a little bit less).

7. Can you feel hunger?

Yes, as I mentioned earlier, the only thing that doesn’t work is my epiglottis, everything else works normally.

8. But you really can’t eat anything? Not even water?

Not even water. Because of what I told you about my epiglottis, anything I swallow goes to my lungs. It’s common to think that water or liquids are easier to swallow, but in my case they are much more dangerous. That’s because liquids slip easier, which means they go straight down through the trachea; as opposed to solids which take longer to go down, so you can get them out if you cough. Cough, I’ve learned, is very very important.

9. And don’t you crave the taste of food sometimes?

Yes, all the time. That’s why it has been so difficult to accept my swallowing disorder. It’s almost impossible to go through the world without finding anything related to food, especially in Mexico where we find any excuse to get together with family and friends, and food is a main part of our culture. In the case of the U.S, just think about T.V. commercials: it’s impossible to watch T.V. without finding some form of shrimp, rib or buffalo wing advertised. Of course, anywhere in the world there is the whole breakfast, lunch and dinner thing. You can’t escape!

However, I have a confession to make: it’s not that I don’t taste anything, it’s just that I don’t swallow anything I taste. It must have been at the end of 2009 or the beginning of 2010, when I had an appointment with the ear nose and throat doctor who checked my swallowing progress. After the usual studies he did, I told him that I really liked to cook, but that an important part of cooking is trying the food you make, so I asked him if I could try a little bit of food and then spit it out. His answer was a definitive no because, as he said it, it could be very dangerous if anything accidentally went to the lung. That answer broke my heart and after that I went a long time without trying absolutely any food. I was literally living a flavorless life. I don’t recommend it.

After some time I met Claudia, who was my speech and swallowing therapist in Puebla (where I live). She was the one that changed my perspective about my swallowing disorder. When Claudia met me I lived running away from food: I would stay in my bedroom at dinner or lunch time instead of sitting at the table with my family, when there was a family reunion we arrived after everyone was done eating and even then, they had to put any food away so I wouldn’t see or smell it. Now I’m even embarrassed remembering those things, but bear with me, they were dark times. Claudia was the first person who told me: you have to sit at the table with everybody. I think everyone else was scared to tell me because they didn’t know how I would handle it, but I’m glad someone talked to me about it, because sharing the table with loved ones (weather it be eating or just talking) is one of the richest experiences in life. (It’s not without reason that the ritual Jesus left us was sharing bread and wine with our friends).

Another thing Claudia told me was that there wasn’t anything wrong with trying a little bit of food now and then because I am not a small child or a person with dementia, (who can also suffer a swallowing disorder). I am lucky enough to understand all of the risks of swallowing food, and to have the necessary motor and sensibility skills to better prevent and control those risks. So now I try food sometimes and I’m not left with the craving. I don’t do it all the time and I don’t try everything; I avoid liquid things like soups or sauces, for example. But little by little I have learned when I can try things and when I can’t, and how to control it when I do. I have learned to listen to my body and that makes me really happy.

Trying food was also a transition, because at first I was really embarrassed and only did it at home, but thanks to Miguel (who is also really wise and has taught me many things), I now try food anywhere and with a lot more people, so I’m not left without trying something I really like and I can “share the bread” with my friends and family, as well as the table. Miguel has taught me to love myself without reservations and to ignore anyone who has any objections with my “peculiarities”. And, honestly in all this years I haven’t encountered anyone like that. What my mom has always taught me is that the way people treat you depends on the attitude that you project.

10. Can you pour alcohol through your feeding tube?

Weather you believe it or not, that is one of the most common questions I get asked, everyone seems to have a strange fascination with getting me drunk. Well, there was so much pressure from my friends that I ended up asking my doctor if it would be OK to do it. Imagine the scene: we were in the OR because they were going to perform a gastrostomy procedure, surrounded by nurses and the anesthesiologist, when I asked him: Doctor, would it be OK if I poured alcohol through the gastrostomy tube?- I don’t think I need to tell you that the question was followed by a lot of laughter. The anesthesiologist jumped in to answer and said: well, a few shots never hurt anyone. So there you go, I can get some tequila in my system if I want to. The truth is that I’ve never tried it, but who knows, maybe some day I will; my friends are definitely not going to stop asking, and Miguel’s cousins aren’t either. I have even been jokingly chased with a shot of tequila on more that one occasion. (I hope it was jokingly).

As you can see, dysphagia is an issue that can sometimes be really difficult, or can even be cause for fun and laughter, but it has definitely lead me to learn many things about life. The night before my surgery in 2009, I remember my mom urging me to eat because the next day I wasn’t allowed to eat before the procedure, but i was so nervous I couldn’t eat anything. I only ate half a sandwich and some small chocolate chip cookies. To this day that memory makes me angry with myself, specially because I didn’t use to eat much anyway. I hate to admit that I was really special about what I ate, and sometimes I didn’t even finish my meals. It’s funny because now I like things that I didn’t use to like before and there are only a few things I don’t like to try. I love tasting a lot of different flavors!

When I think of all the times I didn’t eat something because of any little detail, I tell myself I should have enjoyed more when I was able to eat, I should have been thankful for all that I had. Today I can’t change the way I was in the past, but I can be thankful with what I have in the present. I hope after reading this you are reminded to be thankful for even the smallest details in your life, and specially to enjoy all the things you can feel through your senses: what you can smell, what you can listen, what you can feel, see and taste. May we never forget to savor life!

*I would specially like to thank Guadalupe Gómez Quiroz and Claudia Medina Navarro, who were my speech and swallowing therapists and who I have the fortune of calling my friends. Both of them had a very important role in my recovery and as far as I’m concerned, they are the best in the field.