Jared Formalejo

@jaredformalejo | contributor
I'm a severe Hemophilia B patient with a complex partial seizure disorder with an advocacy to spread bleeding and brain disorder awareness. I'm also a passionate parent who would like to share reflections and insights about parenting with a disability.

Why and How I Cook With a Seizure Disorder

As a person with a disability, 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 occasional mix of Middle Eastern. But this is not an essay on what to cook. 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. This is why I try to minimize them as much as possible. I’m pretty stubborn, but I personally find it necessary to pursue these things for my mental health. Why— I do it for my family. As a person with a disability, 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 my 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 person with a disability, 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 the possibility to cook, it’s 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 a 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 is quite slim. But being able to do these activities or passions allows me to cooperate with my illness and see it as a companion, rather than a nemesis. How— 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 learning how to work around and with your illness in creative ways. I try to be mindful of my seizure 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 most likely have a seizure within the day. I minimize the use of dangerous tools. The kitchen is one of the more dangerous rooms 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 rather 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 on multiple levels. One, it keeps you safe; two, you’re able to share and apply your knowledge and skills to others; 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 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 person with a disability is not challenging limitations. It’s the ability to learn to live and co-exist with limitations that’s truly inspiring. It’s an image of peace, acceptance, and transcendence — not struggle, pain, and resistance.

Community Voices

Teaching Self Reliance to My Child Early with Intention

I’ve played multiple roles across my life. I’ve been son, student, PWD and advocate. Above all are my roles as father and spouse. My family plays a key role in my life. They’re my source of inspiration, strength and they’re the reason I’m here now. I can only imagine a more desolate, lonely life without them. My wife’s central to why I’ve been learning how to be independent for years now. And I intend to pass this down to my daughter by teaching her self-reliance and how to life a life with wonder, empathy and compassion.

I was coddled as a child—and it’s simple to understand why. I have severe hemophilia and I currently suffer from a seizure disorder. Being born unlike others, I was shielded from the terrors of life in exchange for a convenient life in an inconvenient situation. The fact that life’s too troublesome already for a PWD is why they should be trained early on. She deserves to have a life that she knows how to navigate, with a headstrong spirit and a soft heart. And I don’t intend to pass down the curse of ignorance to her so young.

Being a burden to others has always haunted me. It’s not just because I’m disabled but also because I have difficulty fending for myself. I support self-love but with a disability inconveniencing others, self-hate frequently seems like the more convenient option. I’ll never be enough for my daughter—what father is? But I can’t help but feel disadvantaged. I don’t want to repeat the history I have with my own family. I’ve always felt shame for being the family’s curse or black sheep. And I refuse to pass that along to my wife and daughter. Which is why early on, I want my daughter to have the experience needed to explore the world without daddy having to hold her hand.

I’m not doing this to relieve myself of the responsibilities of parenthood. In fact, it’s excruciatingly painful for me to have to let go of my little girl. However tragic, it’s an essential expression of unconditional love. I don’t want to burden her and hold her back. I don’t want to be that Filipino parent who reduces their child to an insurance plan. I intend to learn to be self-reliant as well so my family need not worry about me anymore.

I only hope the example I set will be enough for her to pursue self-reliance as well. And I sincerely hope that having a disabled father softens her heart for others facing adversity. She’ll grow with a perspective unlike others and I’d like to stay optimistic that she’ll have a kind soul because of it.

We’re pretty tough as parents. Many parents might think we’re harsh on our daughter. Some even said that we’re OA—Over-Acting or overdoing it—but she needs it. She’s two going into three and already we urge her to do things on her own. She dresses up all by herself, and she’s completely potty-trained. She also cleans up after herself and she knows when to ask for help—which is quite infrequent. It’s funny to watch a kid go to the bathroom, asks you to step out and closes the door behind her—yet fail to wash her own butt after she does number 2.

She’s very self-assured and independent and I hope it stays that way. Sometimes, I worry we might actually be too harsh; though it’s gladdening to still hear her call out “daddy!” and still demand snuggles at night. She actually has her own bed, but I’d still ocassionally wake up and see her tucked right beside me. These tiny days of unconditional love run by fast and it’s great to savour them. She’ll eventually grow up, have a mind of her own and set out for the world. We only hope we remain consistent so she can be that kind, confident soul we hope her to be.

We all have to let go. I don’t want my daughter to need me, I don’t want to hold her back and I don’t want her to feel obligated to take care of me. I know I’ve done my job well if at the end of the day, she and I can let each other go and she can tell me “Daddy, thank you for raising me. Be confident and know that I’ll be okay.” as I bid her farewell as she moves on lives her life.