Alliah Czarielle Guerra

@alliah-czarielle-guerra | contributor
Alliah Czarielle, or Cza for short, is quite familiar with blood disorders, being a proud partner to a person with both hemophilia B and epilepsy (complex partial seizures), and the daughter of a three-time lymphoma fighter. Prior to graduating college, she wrote her undergraduate thesis on how online platforms similar to The Mighty might help chronically ill youths in her home country, the Philippines. She dreams of a world where chronically ill individuals are able to enjoy true equality alongside so-called "normal" folks, and people with mental conditions are given fair opportunities. As a teenager, she also suffered from anorexia, and to this day she continues to live with an undiagnosed anxiety disorder.
Community Voices

Cancer is Not a Death Sentence.

One thing I’ve learned from my mom: #Cancer is not a death sentence.

Hospital bills may be steep, and each day clouded with uncertainty. Holidays are even worse. There are no doctors around; no so-called medical “experts” certified by a respected institution present to assuage fears which may inexplicably crop up at odd instances. Yet such is the nature of this “disease,” so treacherous, even the medical community appears ill-equipped to control it.

Yet if there’s one thing the whole experience is teaching us — it’s the value of staying still; of being in the present moment, and extricating ourselves from our worries.

All our worries and fears will just be there — they are a normal part of life. But if there’s anything bigger than our worries — it’s trust. Trust in those who know better. Trust in other people. Trust in the unknown. Faith in something greater that may lift our anxieties and replace our worries with laughter and smiles.

Despite the way popular media and discourse present cancer as a death sentence; I can see how cancer actually brought our family together.

I see my mother’s siblings efforts to be there for her. They may not be perfect — who is? I don’t claim to be the perfect daughter either — I get tired, my attention span is low, I know nothing of hospital procedures, and much of the time I just miss home and wish these hospital days would be over.

But at least we’re all trying.

I’m also thankful for these moments because I know that here, my mother is being cared for.

I’ve had conversations with family members that I would never have thought of having before — and they’ve brought me more peace than I could ever imagine.

We’ve started talking about life, principles, values, and the world — conversations I love having.

People are smiling more, telling more jokes, all working together so my mom would have a miracle.

Maybe these people are part of my mom’s miracle — adding more to her life with every smile. And it shows! When more people are around, she smiles more, and tells lots of jokes. The pain she feels almost 24/7, that causes her to toss and turn in bed several times an hour, goes away in a split second. She’s also begun to sit up, even for just a few seconds at a time.

She believes her miracle will come along. She tells us she’ll be on a wheelchair soon, moving around, exploring the world. I’d love to believe she will, too. Putting my faith in this would mean I believe so, and that means I believe in her too. And she needs me to do so.

Though we may come from different walks of life, and follow different paths — we’re all here now, doing our best to unite for our beloved Matriarch — mother figure and big sister to all.

And for that, I am already thankful.

Loving Someone With a Disability Doesn't Make Me a Hero

I’m a partner to a person with disability. That automatically makes me a carer. Why? Because I have a responsibility to my partner, to ensure he always stays in good health. I respect his family, and their efforts to keep him strong and well during all those years I wasn’t around for him yet – a good 80 percent of his life so far. I don’t feel forced or obliged to do so. I do it because I care for his well-being too. Occasionally, when I mention it to other people – what I do, the times I’ve had to put his needs before my own – I get the sense they think it’s heroic. Just short of saintly, even. Some people would say it’s a choice they personally wouldn’t make, because they either don’t possess that strength of spirit, or they claim to be “only human.” But here’s the thing: I’m just as human as everybody else. I don’t think I’m made of stronger stuff compared to other people out there. I mess up; I make mistakes. I do things that aren’t good for my own health (like sleeping late/too little, worrying too much, or eating food that isn’t good for me) and may sometimes make choices that aren’t good for my partner or myself. I’m selfish sometimes. If it boiled down to my partner’s needs versus my own, I’d ultimately give in to him – but sometimes, I admit I put up a fight. Being thought of as saintly or heroic makes me feel like I can’t do any of that. Like the only choices I can make are the “good” choices, regardless of how I feel or what my own needs are at a particular moment. I’m a person with anxiety, and tendencies towards depression, who’s had to battle eating disorders in the past. I get minor panic attacks triggered by certain thoughts or moments. I get “mental overload” sometimes, which makes me lose focus in the here and now, and as a result I’ve done such things asramming the back of our car into another parked vehicle as well as driving it onto the sidewalk. When people think of me as the “able” one and the one who needs to be stronger, I sometimes can’t help but feel stripped of my right to just be human. I can’t help but fear my anxiety might get in the way of being a “good” carer for my partner. I fear I won’t be “good enough,” and my insecurities and fears feed right into that. I can’t complain – not even when I so badly need to express how I feel – especially if the situation has been created by my partner’s condition. People tell me I have no choice but to accept it unconditionally, or else we will be stuck in an unhealthy relationship dynamic filled with unmet expectations and passive aggressive thoughts towards one another. In a way, they are right — unconditional acceptance is the key to contentment in our relationship – but please give me some leeway to get there at my own pace. I can’t always be understanding, giving or selfless. But for somebody I love, and to whom I’ve pledged my life, I can certainly do my best to be the very best version of myself. I’m a carer. But above and beyond that, I am human.

What My Partner's Hemophilia Taught Us About Pain

My partner Jared is in pain. His hand has been bleeding for the past week. No, he didn’t cut himself. The skin on his hand didn’t suddenly pop open and start gushing out blood at random (sorry for the graphic mental image). Yes, this was a random injury. He didn’t do anything to exert force on, or using, his hand, but it happened. He literally just woke up with his hand in pain. It’s just one of the things that happen to people with hemophilia on a regular basis. It looks scary to most people. That’s understandable. It’s not every day you see a guy with a giant bruise in the palm of their hand. In fact, this whole week in the office, our coworkers had been telling him to go to the doctor. To which he would answer, “no need,” or “well, my dad’s a doctor.” True enough, his dad is a doctor with over 20 years of experience handling his own son’s condition. He may not be a hematologist (blood doctor), but after all those years of looking after Jared he already knows a great deal about managing hemophilia (and hemophilia-related injuries). When he saw the injury, he wondered where it might have come from — but he didn’t say anything about a transfusion. Usually Jared gets infusions of his missing clotting factor whenever he gets a bleed, but for this particular bleed, he didn’t need any (yet). A hand bleed may look grotesque, but it isn’t scary or life-threatening. But it sure is painful. It’s OK to Be In Pain Jared and I were talking yesterday (as we always do) and we discussed how it might be a good thing to expose children to pain from a very young age. I’m not just talking about kids with chronic illness — I actually mean all children. A lot of parents like to shield their kids from unpleasant experiences — and for a good reason. Very young minds may still not have the capacity to process hurtful experiences. Therefore, putting them through such experiences at a very early age may result in lifelong scars. However, one potentially harmful consequence of this is that kids end up viewing pain as the enemy. Though the parent’s original intention might have come out of sheer kindness and compassion, they become inadvertently conditioned to see pain as “bad” and to shirk away from it, or fear anything that may potentially cause pain. What they don’t realize is that pain doesn’t necessarily have to be bad all the time. Evolutionarily speaking, it may have been designed as a way for humans to avoid unpleasant or life-threatening situations. But pain does not automatically translate to “wrong,” or lead to a terrible outcome (or worse, death). Pain is a feeling. It’s a response to a series of cues that our bodies and minds are conditioned to interpret as “leading to a potentially undesirable outcome,” but there is still no guarantee that they will truly lead there. On the upside, pain can give us a hint as to which direction we ought to take, from where we are at present that’s causing us to feel this way. Pain can be a sign that we need to change what we’re doing (whether it means refraining from doing reckless things that can possibly result in injuries, or just taking a rest from stressful events because we might not realize how overworked we are). You can only ever feel pain for as long as you’re alive. Pain is OK — to the extent that it’s a sign you’re thriving. Follow our journey on Or Simply Cza. We want to hear your story. Become a Mighty contributor here.

Life Lessons From My Partner With Hemophilia

Recently my partner Jared got into an accident. We were supposedly on a week-long vacation from work, thanks to the ASEAN summit. The incident happened at the swimming pool of a hotel and resort we visited in Tanza, Cavite. It was only our second day there, out of the three days we planned on chilling, and just having fun. And have fun we did — at the swimming pool, which happened to have three slides. My cousins and I had tried these slides a few times in the past, and we always reached the other end just fine. That day there were young children and teenagers playing in the slides, so it looked especially safe. But midway through Jared’s slide down, he took a bad turn. He began sliding on his belly, feet-first. His teeth grazed concrete, and he emerged at the end with a bleeding lip. There was a lot of panic. The moment he screamed out to me that he was bleeding, alarm bells went off in my head. I knew it could not be good — considering he has hemophilia. A person with hemophilia would always have the chance of bleeding to death in the “perfect” conditions (and I use the word “perfect” ironically). That moment, I knew we might have come so close to being in the perfect situation. Something had to be done right away. I have to admit I was scared at first. I knew Jared had been in and out of hospital several times in his childhood, but during our three (going on four) years together thus far, he had never been hospitalized. This would be his first hospital stay in a very long time — and to think I was his only companion going there (apart from the hotel staff who were kind enough to bring us to the ER). In this post, I will explain what happened in as much detail as I can remember (in the flurry of events from the accident to his sudden confinement). But before you proceed, I request you, dear reader, to suspend judgment. You could say it was a foolish decision for him to go on the slide in the first place. Sure it was, but saying so wouldn’t be very considerate of him as a human being. Warning: People With Disabilities Are Human, Too Disability is more than a stick-figure guy in a wheelchair. If there’s one thing I’ve learned from interacting with other people with disabilities, learning about what makes them tick, about their dreams and desires in life — it’s that people with disabilities are human beings before anything else. They simply happen to have disabilities, and as a result their needs may be different from “normal” folks’. But that doesn’t make them any less human. Just like other human beings, people with disabilities have dreams! And most of the people with disabilities I’ve met share one very simple desire — to live normally, to be able to do the same things so-called “normal” people can do — to enjoy, to have fun, to make the most of life. And so this desire can lead people with disabilities to try pushing their limits — to see if they can still be safe doing certain things despite discouragement from others (even medical “experts”). Imagine being told all your life that you can’t do certain “fun” things because they’re unsafe. It’s not easy to understand that as a child. When you’re young, you want to belong, and being banned from doing enjoyable things with your peers goes against that. As a result, you feel isolated, when all you really want is acceptance. This feeling can last for a long time, even until you’re an adult. It’s not easy to accept the fact that you’re different. There will always be a voice inside your head telling you that you need to prove your worth (even if it’s not worth the trouble), otherwise other people won’t accept you. Granted, both Jared and I managed to learn a lesson from the incident that will surely stick with us for the rest of our lives. Safety always comes first — and from now on (at least for the two of us), no more pool slides. Tuesday (Nov. 14): The Day of the Accident and Overnight Hospital Stay When we arrived at the hospital, Jared’s lower lip was open and bleeding in two places (above and below). We thought he had lost a tooth, but in reality his front incisor got pushed back into the gum and skull (intrusion). As per doctor’s evaluation, Jared was admitted in the hospital for one night to receive surgery. He needed to get lip stitches to close the wound and stop the bleeding. Since his co-morbid condition (hemophilia) was critical, he had to be observed by an anesthesiologist, an oral surgeon, and an internist. Thankfully, he had managed to get a Factor 9 infusion (good for 48 hours) before we left for Tanza. This led to the following good consequences: 1. The surgery (suturing) pushed through without complications.2. He didn’t lose too much blood — there was bleeding, but it was easily controlled. The dentist then gave us two options for fixing his tooth. The conservative option: to pull his tooth back down and wait for it to embed into the skull again. However, his panoramic x-ray showed that the root of the tooth might already be damaged. This meant the tooth would eventually decay, and a root canal would be needed. On the other hand, we could just have the tooth pulled out altogether and replaced with a denture. Neither procedure could be done on the spot, though, as the dentist insisted on getting clearance from a hematologist — one such “complication” of his hemophilia. We decided to hold our decision until we were back in Manila so we could get advice from other medical professionals. Besides, it would be so much easier to postpone the complicated procedure to a time when factor would be easily obtainable. Jared is very much blessed to have doctors in the family — both his father and his older brother are a dermatologist and ENT-in-training, respectively. Thursday (Nov. 20): Toothless No More; Pseudo-Retainers On Wednesday evening we went back to metro Manila. It was around 8 p.m. when we arrived. We skipped three days of work after that: Thursday, Friday, and Monday. What we missed out due to Jared’s sudden hospitalization, we made up in days spent chilling at home. We managed to catch up on (and finish!) two TV series: “Transparent” and the latest “Riverdale” episodes we hadn’t seen yet. We spent almost all of Thursday seeing doctors and researching ways for his damaged tooth to stop being a problem. A trip to his regular dentists ultimately put a cap on our search when they suggested to pull down the intruded tooth and splint it against the surrounding teeth. The splint was just a thin wire bonded to his tooth, which looked a lot like my retainers! It would have to stay on for a few months. At the same time, we would have to observe if the tooth would change color — as this would signal a need for a root canal. The dental procedure turned out to be quick and easy, and virtually pain-free. Since these were Jared’s regular dentists, they knew about his condition, and were aware that Factor 9 would be available. As a result, there was no hesitance on their part to perform the procedure. We’re now in the process of recovery. It may take a few months before the splint can be taken out and his tooth (hopefully) returns to its normal state. Jared’s still on a soft diet. I still have flashbacks of the incident that make me shudder, but our focus has always been to move forward. Regardless of what challenges may come our way, it is but wise to keep moving forward. #HemoGirlfriend Says One of my major qualms about the present thrust of the conversation regarding people with disabilities is the lack of visibility of loved ones, especially partners. When people talk about the well-being of people with disabilities, only two people are normally involved in the conversation: 1) the person with a disability himself or herself, and 2) the parent and/or immediate family members. But people with disabilities can and do fall in love, and their partners also tend to take a considerable, if not equal, share in caring for them and making sure their needs are met. When something stressful happens to the person with a disability, the “normal” partner also gets stressed. He or she also bears the brunt of the incident. He or she must attend to the necessary paperwork, worry about fees and insurance, and keep watch on the other’s bedside — all while having to keep a level head (because historically speaking, nothing good ever comes from panicking). It’s surprising how easy it gets to be in the end, when you know it’s all over and both of you can rest assured all is well — when you love someone and can’t bear to lose them in the first place. Just as the person with a disability needs care, so do his or her “carers.” A little support can go a long way. Partners of people with disabilities need to have a strong support system as well, so they can continue to give quality support to their loved one whenever he or she might need it. A hospital would probably be the last place someone would have in mind if they wanted to go on a date. Most couples our age might be going to malls, hiking up mountains, or snapping Instagram-worthy photos at picturesque beaches. They might spend their vacations in bars with their friends, getting drunk ’til midnight. Maybe that works for them — good for them, then. But for us, things work a bit differently — and that’s OK. On good days, we still get to do the things regular couples do. We eat out, drive to the mall, and head to the office every day. It’s also added perk that we work at the same office, and our superiors are fine with the arrangement. We’re life partners to one another. But when a bad day strikes, sometimes the routine gets interrupted. Sometimes emotions go on strike as well. Nonetheless, it’s fine. It works for us — it works for me, too. I’m contented to know I’m loved, and that alone makes me happy. And doing things for another person — the process of attempting to understand a condition I will never fully get — is something I find truly meaningful. That’s got to be a valid choice in this world. Follow this journey on Or Simply Cza. We want to hear your story. Become a Mighty contributor here . Photos by contributor.