REAL TALK: PWD in the city

Yes, this is a rant post.

Being stuck in traffic never really annoys me in terms of time wasted. I’m usually triggered by what I observe in the metro. From the motorists’ inability to follow traffic rules to the trash scattered everywhere, it’s a dismal sight. When I have a better vantage point, I have a tendency to look at how accessible the infrastructure is for persons with disabilities (PWDs).

There are laws, mind you. LAWS. Actual laws that are meant to make our nation an accessible nation with proper facilities for PWDs.

For example, there’s BP 344:
“AN ACT TO ENHANCE THE MOBILITY OF DISABLED PERSONS
BY REQUIRING CERTAIN BUILDINGS, INSTITUTIONS, ESTABLISHMENTS AND PUBLIC UTILITIES TO INSTALL FACILITIES AND OTHER DEVICES.”

There’s a load of provisions mandating that structures, both private and public, must have barrier-free walkways, ramps, railing, audio-visual aids, etc. Basically, it’s written right there in some official publication that all the necessary fixtures and modifications to make the city accessible MUST be part of the design.

What is a law without consequence?

I see smooth sidewalks but no ramps or slopes in between the gaps of the gated houses in New Manila. PWDs are forced to walk on the street anyway (as I do when I’m on 1st Street for example).

I see vehicles parked on the street, blocking access ramps. PWDs will have to move around it or spend time and energy.

I see elevators and escalators that are not operating in the train stations. What is that? For the sake of compliance? Bullshit. Try climbing 40 steps with one leg and then ask a person if they’re happy.

I’m reminded of the times that I had to commute and how much of a health hazard the environment was. The struggle, the pain, the stress, the frustration of all the things that I wish our country had.

When we don’t have access, we lose opportunities. When we don’t have options for transportation, we lose our mobility. There is an unrealized potential of the PWD population who are stuck at home or struggling to get anywhere, and that is a loss for us all. ♦

Chronic Pain: Sometimes a Challenge, Always a Problem

It’s a Friday and I had the chance to leave the office early. I was done with my work anyway. You would probably think, “Wow, I have extra time to do something today!” and maybe be productive in some other way. Not the case, unfortunately.

I asked my mom to pick me up earlier because my right foot was hurting like hell. There’s something called a “hammer toe” deformity. Here’s what it looks like:

Photo from ePainAssist.com

That’s just my right foot. Leftie has what you call “hallux valgus”:

Photo from ePainAssist.com

As much as I’d love to wear moccasins or ballet flats, I just can’t anymore. Footwear started to become a challenge when I was around 12. The toe deformities were just starting to form, and I would complain about callouses or sore bunions even though they weren’t that prominent. When the toe joints started rotating, it was very painful. They would hurt even though I wasn’t wearing shoes. This progressed over the years and my choices of footwear were reduced. I have never worn heels or boots. Basically any kind of shoe that needs my toes to bend in order to slip into just could not happen. Shopping was a constant challenge and sometimes, even embarrassing. Imaging making people get all those boxes of shoes, only to find that none of them work on you. I hate shoe shopping as much as wearing shoes.

So, that’s the challenge: finding shoes that work. The problem is wearing the shoes that I usually have to settle for. I wear a shoe because it fits, because I managed to slip my feet into them, because I need to wear them. Whether it was for school, a party, and eventually for work, I had to. In high school, I wore loafers and Mary Janes. Sometimes, I had a good pair of flats and sneakers for P.E. classes. If only those shoe designs and brands stayed in the market… I would have to shop again when it was time for college. At this point, the deformities have progressed again.

Day in and day out, it took a lot of strength and coffee to get up every day, to dress up and look human enough to walk the halls of university while every step felt like a dislocation in the making. I never wanted to draw attention, so I tried very hard to look okay and lessen my limping. After all, I had my goal of graduating. Four years of hell for a “better life” after? I’ll get through it, I thought.

I was wrong though. Four years wasn’t even the beginning of hell.

On graduation day, I wore custom-made t-strap pumps to comply with the dress code of closed black shoes with heels. There was more pressure to look nice too because I had to deliver a speech. Right before we entered the venue, we stood outside the building, sweating under our togas, and melting our faces off for almost an hour. I was surrounded by lovely people I knew so they kept me distracted for the time being. In between chats, I felt my hips and ankles hurting. When it was time to walk in, I learned that there would be stairs along our parade route into the auditorium. Great. Keep smiling. It’s our big day. Smile. Wave. Greet your mentors. Keep your shit together. Just a few more steps until I can park my ass into a seat. Certain words come out when you’re in pain. Excusez-moi.

I happened to be the chosen one for the valedictory address. Up until my time to speak, I was moving my toes and ankles around in my new shoes. They were so sore that they tingled every couple of minutes with this pain that radiated up my knees. On my big moment, all I could think of was getting through the speech so I wouldn’t embarrass my family and the school while feeling like my lower extremities were being stabbed by tiny knives. I got through it, thank goodness.

People with disabilities (PWDs) often have problems complying with institutional standards, even with something as simple as a dress code. Out of respect, I chose to comply. I could have asked for consideration to wear something else, but I never felt comfortable with making grand requests for accommodation. I chose to comply because I knew that I could comply, although painful. At least, I thought, on the outside I looked like everyone else in uniform and that gave me a bit of confidence to walk in and out of school everyday. Truly, I did appreciate everything the university did to ease my ordeal. They gave me alternative activities so I wouldn’t have to travel far or outside of school. They even gave me a special pass to exempt me from wearing the uniform on certain days when we had to dress corporate for presentations. I needed this because I cannot change my clothes unassisted.

In the workplace, disability and chronic pain can be barriers to productivity.  When I got my first job, I was fortunate to have found a company that recognizes the needs of PWDs. It was a desk job with flexible work hours. The dress code was casual so I wore sandals every day. The best part: the office was only 15 minutes away. At least in some ways, the dress code took away some of my suffering and I was left with manageable neck and shoulder pain. By the way, physical therapy was covered by HMO. See? Manageable. Less pain meant more concentration.

I will once again say that I have no advice on how to get through the pain. I can’t tell anyone how to do it because each person’s pain is different. We cope the way WE CAN and the way WE WANT to. How we cope and find solutions to the pain problem is perhaps the most exhausting part of life with disability.  I try to think (and hope) that there will always be a solution. ♦

 

If I can stop one heart from breaking,
I shall not live in vain;
If I can ease one life the aching,
Or cool one pain,
Or help one fainting robin
Unto his nest again,
I shall not live in vain.

– Emily Dickinson

The Night I Grew Up

In November 2018, my friend Ella was in Manila to visit her sick grandmother. After four years in Qatar, I was dying to see her. She invited me to dinner in Bonifacio Global City (BGC) on a Pay Day Friday night.

My mother and grandmother picked me up from the office around 3:30pm and we headed to EDSA, which was its usual tragic, slow-moving, congested state. We dragged on for an hour from Quezon City to Makati. Off all places to get stuck in traffic, it was McKinley road. Of course we had no idea on how bad it was over there during rush hour. We dragged on for another hour. As we neared the restaurant where my mother was to drop me off, she started feeling nauseous. She felt so terrible that she had to pull over at McDonald’s on 7th Avenue. Mother threw up twice and complained of a headache and vertigo. I went inside McDonald’s to ask for some water and ice. The manager, Lei, offered to help. She called Lifeline for us. It took almost 15 minutes for the emergency team to arrive due to heavy traffic. They checked mother for signs of stroke and other things. Since she couldn’t drive at all, we had to take her to St. Luke’s hospital. I tried to stay calm. I tried to think that it was just stress from the long drive. I tried to not think about the fact that I could lose all my savings in one day if she had to be confined here. I had HMO but I couldn’t use it for my mother. Lastly, how the hell do we get home from here?

They ran some blood tests and told us to wait for the results. All I could do was stay with my mother, watch her look awful, and feel so goddamn helpless. Grandmother told me to get some dinner for the meantime, but I didn’t feel hungry at all. I didn’t even feel tired. Isn’t it amazing how a situation like this can dull your physiological processes? I went out anyway. I guess I needed to take a walk, I thought.

I had always been amazed at how BGC looks especially in the evening. It’s totally different from Quezon City. Sidewalks are unobstructed and accessible for wheelchairs. People follow traffic rules and could cross the streets safely. I walked about two blocks away from the hospital and found the Bonifacio Stop Over. There were a lot of dining options there but I had no appetite for anything. I just settled on The Coffee Bean since it had seating. Toast and black coffee, things I normally enjoy, I couldn’t taste that night. I sat there, chewing, thinking about everything that happened earlier, and what could possibly happen. Is my mother terribly ill? Would she need surgery? Therapy? Could I afford it? If she should die, who would take over as my caregiver? Could I go back to work after all this? It scared the hell out of me.

The coffee had gone cold and I managed to finish the toast with a little butter on it. I had to go back to St. Luke’s. As I walked, the fear was sinking in, and a part of me wished that a car would spiral out of control and hit me. “Woman fatally injured by traffic accident” the headline would say. Unlikely but preferred at the moment. With the physical disability that comes with rheumatoid arthritis, I have become so dependent on my mother’s care that I never thought about my welfare in the event that I would lose her. My grandmother has five other children who could easily take over my mother’s caregiving duties. She has a pension and allowances from her children. They got her back. Who has mine?

The blood tests came out negative and the doctor said that mother could go home. While I was out, I learned that Grandmother called my brother Edward and one of her sons to come and pick us up. It was my god father, Tito Tante. He arrived with my cousin Geo who was there to drive us home too. Grandmother settled the bill, which wasn’t much, thankfully, and we left. Tito Tante got our car parked at the McDonald’s on 5th Avenue. I rode with him on the way back to Quezon City while mom, Edward, and Grandmother went with Geo. As usual, Tito Tante was the person who could talk sense into me and help calm me down.

We got home past midnight. Once I hit the pillows, all the pain and tiredness set in. Worst night ever.

That Saturday morning, mother felt sick again. This time we had to get her into a hospital. She stayed there for two days on intravenous fluids since she couldn’t hold down any solid food. For two days, I didn’t bathe or eat properly. For two days, I truly felt disabled. I was tired, nutritionally starved, and my hygiene suffered with it. This time I felt all that and it sucked.

Sunday afternoon, the doctor said that mother could go home the next day. She received some visitors and I think that it lifted her spirit. She seemed to be feeling better. The next day was also Ella’s return to Qatar. Mother told me to go and see her off. Edward spent Sunday night watching over Mother so I could go and meet Ella.

I headed to Ortigas where she was staying. It was wonderful to see Ella again and to my surprise, Victoria and Bryan with their first son! Ennah was there too. For a few hours, we caught up like old times. Before I went home, Ella surprised me with an early Christmas present: a smartphone!

In some ways, someone did have my back. Ella, though living far away, whom I haven’t seen in years, gave me something to help me rely less on my mother. A beautiful new phone that could hold the latest apps and allow me to have my own Grab account. I no longer ask my mother to drive me to far places. She can’t anymore as we would eventually learn that her condition turned out to be tinnitus. She cannot do heavy work, get stressed, and eat certain foods. Occasionally something would trigger vertigo and vomiting so she would have to rest for a day. She is now on medication and monitoring her diet. 

My mother is a caregiver to both me and Grandmother. Her life has been devoted to us. She didn’t have the chance to build a career. Caring for people is a physical, emotional, and economic challenge. Even when I thought that she didn’t need to do much for me compared to my Grandmother, her being sick for a few days took a toll on my wellbeing.

I took a leave Monday to settle Mother’s discharge matters. Edward and I split the hospital bill with ease. I knew that this could happen again since Mother was aging and now chronically ill. I decided to get her life insurance and build an investment fund for future medical needs. Edward and I agreed that we will absolutely NOT resolve to borrowing money for emergencies. We will not incur any debt. We will be financially secure.

After that night in BGC, I saw the true value of having a job and an education. Without these, I would remain completely disabled and my future left uncertain. I go to work everyday grateful for what I have and what I continue to receive. Every month, I feel richer and a little more hopeful as I watch my savings grow. There are still times that I feel anxious about the payments due for Mother’s insurance, but knowing how I am working towards assuring that her needs will be covered makes it a little easier.

Living on Chinese Lumpia and Yakult

I can’t believe it has been a year since I started working. 

In one year, I have paid for my own things and learned a lot in the process of saving my resources. From my earnings, which isn’t much, I have learned a lot about grocery shopping. My choices are mostly defined by the prices, secondary is my brand preference, third comes my need for the item.

At this point, I realized that there’s a lot I don’t need nor want any longer.

Food is one thing. I can go with very little food. It’s not like I can eat anything I want anyway. Just give me a banana and I’m good to go.

Some nights I have to buy dinner. My go-to place is The Little Store on Gilmore. I get Chinese lumpia (meat free!) for P100. That’s about two cups of veggies packed into a roll. I get my fiber without spiking my blood sugar. There’s a lady staff member, Leslie, who knows exactly how I like my lumpia. NO GARLIC. I go easy on the sauce of course. This place is also where I get almond milk cheaper than at the major supermarkets.

On my weekly stops at the pharmacy, I also get a pack of Yakult. It feels more like preserving part of my childhood more than my daily intake of probiotics. My gut stays healthy (as it claims to help with) and I get to be a child for a moment, enjoying a tiny bottle of happiness.

I wrote this post because I had lumpia again.  Not that I mind. ♦

Business Terms Make My Head Hurt

I just spent a few minutes reading about real estate investment trusts, exchange-traded funds, market volatility, and all kinds of securities. It was a bad idea to just cram information from Investopedia all in one sitting. I need some water and a Tylenol now.

It’s because of my job. I’ve been working as an indexer. Not any close to my preferred profession, but it’s better than nothing while we wait for our big move to the province. Every day I read, analyze, index. Read. Analyze. Index. Mundane as hell, but I go home smarter, although  overwhelmed with all the knowledge.

Sometimes I get to work on business articles and personal finance advice. I like reading about personal finance because it’s just what I need. I’m a taxpayer now. “Adulting” as you would say nowadays. I don’t complain or dread about the “real world” that older adults scare/inform me about. In fact, I wish to know.

This job made me experience the economic empowerment that I hoped for. I can buy my own medicine and healthy pantry staples. I can even pay for my own Grab rides. The nice thing about my list of needs is that it has a set of fixed prices for every item. Unless inflation kicks in or something, the cost of everything I need is easily computed per month.

That’s just at a personal spending level. I want to know how to properly handle my finances. I already know how to save, then I eventually learned how to manage my budget. Now I’m thinking long term. What to do with money, how to manage properties and assets, how to invest, and if I ever make it, a retirement plan. I believe we need to know these things no matter how much we earn.

As I write this, I am reminded of my grandfather. He taught me something about wants and needs. Relating to World War II when the Japanese invaded the Philippines, my grandfather and his family lived on scarce resources. He said that when he looked back, he survived without any luxuries. The principle of saving applied to anything that was useful at the time. People also had to find ways to amuse themselves, and my grandfather told me he would play card games or smoke cigars if they had any. He concluded, “If you can live without it, then you don’t need it.”

I agree, Lolo. I don’t have much, but I’m still living… in spite of this headache.

Hey, Slim!

 

Yes, I’m skinny but it is not a choice.

Ever since I lost weight, I feel like a great load has been lifted off my joints, particularly on my knees. It’s also a lot easier to get in and out of my clothes. Sometimes I still struggle with my slacks, but on good days I can manage to wear them when I have to. As strange as it sounds, the end goal of losing weight was actually to spare myself the hassle of struggling with clothing. I look like this as a result of a drastic lifestyle change that came with rheumatoid arthritis. When I think about it, I look like this not because of the conventional weight loss methods that people are familiar with.

I do not work out regularly. I used to though and certainly miss the benefits of it aside from weight loss. I miss the feeling of having a good sweat and to feel my heart pumping. Just to feel like I actually have a heart is wonderful. I also slept better back then. Now I manage my weight by doing house chores and grocery shopping. I walk every chance I get as long as my feet don’t hurt.

I do not starve myself. The starving is inevitable. It just happens sometimes. With all my body’s picky-ness and reluctance to digest gluten-containing, processed, fried foods, I’m usually left with little to no options for a meal. My mom takes great care in making my lunch for work days, making sure that it is low-fat and oil-free. Nowadays I’m more excited about being at the office because I know I won’t starve. At home, my meals are never certain. I would usually make green smoothies for dinner if I could find fresh spinach or kale. There are nights (like tonight) when the family settles for a delivery. Tonight is Pizza Hut night so that means no dinner for me. I’m used to it and I have developed a preference for not eating dinner. I don’t like having any extra carbs to keep me up especially when I have work the following day.

I am not vegan. I wish I was! The plant-based diet is the best diet for RA patients and I say this based on experience. My diet is mostly plant-based, but I still have the occasional Dilly bar from Dairy Queen or a slice of cake. Cheat days are the kind of days that make me feel normal, when I don’t have to fret about what I’m eating. Maybe I can’t be vegan after all because I can’t bear the thought of parting with Dairy Queen.

I Saw My Grandfather Again

This time I remembered he was dead.

Two nights ago, I had a dream about being picked up in a silver vehicle. Where I was or why I was being picked up, I did not know. The driver was my grandfather who had passed away seven years ago.

Whenever I dream about him, I never remember that he is actually dead. The dreams look like memories or as if he was still around, and he always looks the same, like James Stewart in Vertigo (1958). Not exactly like Jimmy, but mainly because of the same gray hair and tall stature that I first remember my grandfather having when I first met him.

That is how he looked like.

I seemed to be standing on a curb on a quiet street. It was a cloudy day and quite chilly too. I don’t remember if it resembled any actual place I’ve been too, but I do remember that there wasn’t a soul in sight. My grandfather pulled up to the curb and greeted me. I thanked for picking me up. On the way to somewhere (which I also couldn’t recall), I spotted an abandoned carousel on what looked like a cul-de-sac. It was a large carousel covered in vines. My grandfather said that there was no one there. I wanted to go see it but I figured it wouldn’t be safe. In the back of my mind, I thought of my father who was also dead.

The carousel reminded me of my father because of his favorite musical film Carousel (1956) with Gordon MacRae and Shirley Jones. To be brief, Carousel is a story about a tough and troubled carousel barker named Billy Bigelow. He dies, leaving behind his wife Julie and his daughter Louise. In heaven, he learns that everyone is allowed to return to earth for one day. He picks up a star to give to Louise, who is having some troubles of her own. Billy’s one day back on earth gives him a moment to be a father (although poorly executed) and makes him realize how much he truly loved Julie.

Imagine my father as Billy and me as Louise. That movie has sentimental value to us and it was just what he said he would do when the time comes. He said he would come back and give me a star.

My father isn’t there, I thought.

We drove past the abandoned carousel. I continued to wonder where he was. Moments later, that’s when I realized that in this particular dream, I was dead too.