As a PWD, I try to busy myself with hobbies and passions. With hemophilia, my most daring passion is to pursue peak physical fitness. For my seizure disorder, I also chase after a skill that many might consider taboo—cooking. I love food and I love eating—it’s always been an important part of my life. All the relevant male figures in my life are proficient cooks, and I wanted to follow suit. And it gladdens me to know that my family believes I have a talent for it.
I usually dive into Japanese, Italian, Chinese and Thai cuisines—with the ocassional mix of Middle Eastern. But this is not an essay on what to cook. More, this is my primer on how I do it despite possibly losing consciousness any time of the day—God-forbid while holding a hot stove or a knife. I understand the risks of cooking, and it would be highly foolish of me to disregard all the risks involved. Which is why as much as possible I try to minimize them. I’m pretty stubborn, but I personally find it necessary to pursue these things for my mental health.
I do it for my family. As a PWD, I often feel like I need to do more than what’s expected for my family. I feel like I have to do it to make up whenever I drag them down with illness. I’ve already developed a reputation in my household as an able cook. So I simply owned it and made nourishing dishes for my family. It also helps me feel that I’m of service to others.
I do it for my mental health. Cooking has become a relaxing escape for me from the struggles of everyday life. To be able to do something I enjoy, and create things that are beneficial eases my mental health. It gives me inner peace. I find it hard to feel productive, especially due to my illnesses. And preparing meals makes me feel that I’m of use.
It helps me feel empowered. As a PWD, it’s a powerful emotion to feel productive and capable. Being able to work around and beyond your capabilities reassures one that even if they may seem “incomplete”, they can still have a semblance of “completeness”. Cooking a meal may sound simple, or even shallow for some, but for a person who is supposedly denied of the possibility to cook, it’s a encouraging to be able to pursue it.
It gives my life more meaning. Being able to pursue cooking even with a seizure disorder helps me learn a valuable lesson when it comes to living with disability. So far, it’s taught me how to live with my illness instead of against it. Given that I possess complex medical conditions, the possibility of recovering are quite slim. But being able to do these activities or passions allow me to cooperate with my illness and see it as a companion, rather than a nemesis.
I don’t go it alone. I’m lucky in this aspect that I’m with my wife and we have a nanny for our baby. I don’t ever want to risk cooking alone since seizures are unpredictable. Having a companion guarantees that someone will be able to help you out of a dangerous, potentially deadline situation.
I have a plan ready in case of the worst. Make a list of the things you need to keep in mind and implement as you go. Think things through, from how you will organize the workspace down to how you will prepare your ingredients. Is the area safe in case you have an attack? Is there a chair you can possibly sit at the onset of your aura? Aside from having a recipe on-hand, minimize the risk of accidents by planning ahead and learn how to work around and with your illness in creative ways.
I try to be mindful of my seizure’s triggers and aura. It’s absolutely essential for anyone with a seizure disorder to be familiar with the nature of their attacks. In my case, my seizures are caused by emotional stress. And a common aura—the feeling you have before a seizure actually happens—is a feeling of dejá vu. I try to avoid cooking when I’m in distress or when I have uneasy feelings or strange visions. These are signs that I’ll mostly likely suffer from a seizure within the day.
I minimize the use of the dangerous tools. The kitchen is one of the more dangerous room in the house. Why wouldn’t it be? It’s a room with knives, heated pots and pans and fire. Knowing that it’s dangerous, minimize the use of the things that make it so. I ask my companion to slice, chop or dice vegetables and meats for me and I’m not hands-on with a stove. Again, the key is minimizing risk and managing the situation to work for you.
I try to be a manager/supervisor than a chef. Similar to how a head chef works in a restaurant, more often than not I don’t do the actual cooking. I do, however, manage my surroundings and instruct or advise my sous chef/s on what they have to do. I guide them on how they can make a meal turn out great. You may not be on the frontline, but you’re the one pulling the strings in the kitchen. It’s a healthier use of your skill in multiple level. One, it keeps you safe; two, you’re able to share and apply your knowledge and skills to other; three, you’re still able to pursue your passion; and lastly, you’re not simply productive, but you’re participating in the growth of other people.
It may not be the ideal for people wanting action, but that’s the point of respecting one’s limitations. You, otherwise, put yourself and others at risk if you try to work against your condition and place yourself in a tough spot. The most empowering thing you can do to express yourself as a PWD is not challenging limitations. It’s the ability to learn to live and co-exist with limitation that’s truly inspiring. It’s an image of peace, acceptance and transcendence—not struggle, pain and resistance.