I have an illness that continues to progress into deterioration. From its common type, remit-relapse, I was diagnosed with Secondary Progressive Multiple Sclerosis (MS) in 2020. One of my main symptoms was vision loss. I’m used to having blurry eyes. It comes with MS as I have optic neuritis, the acute inflammatory demyelinating disorder of the optic nerve.
The doctors did a series of tests to see what was causing my transient blindness and sudden loss of peripheral vision. They crossed out eye stroke after I took the carotid artery duplex scan and 2D echo. I’m using medical jargon for a reason, so bear with me. I have my reasons. The reason they checked out stroke is that a second stroke can recur. I suffered from a stroke when I was 17.
My brain MRI showed white matter but not new lesions typically associated with MS progression. When I was diagnosed at the age of 15, I had lesions. They did a spinal MRI and they confirmed it still was MS. My blood still showed significant biomarkers of the disease, and they ruled out other chronic diseases similar to it.
The biggest proof for them that I was worsening was my eyesight or the gradual loss of it. Imagine yourself sitting in your room when suddenly, your left eye can’t see anything anymore. Then try to think of the scenario when suddenly, you can’t see with both eyes anymore.
The fear is unreal and anything I’ve never experienced. Never mind the pain, the migraine everyone can see in the MRI machine or the EEG abnormalities. I was losing my eyesight, and it made me insane. I can live without my ability to walk. I’ve been paralyzed three times before. But my eyesight? When the results came out and showed more than 25 percent vision loss, I felt a different type of desperation. For the first time since my diagnosis, I asked if I could be treated for my disease, whatever its toll on my body. The doctors told me about Rituximab, my only choice after Beta-Interferon, which isn’t available. Since Rituximab is extremely expensive, it costs P100,000 per vial; we decided to go to a public hospital.
I was admitted to the Baguio General Hospital. My main doctor wasn’t there so he passed me to someone. There were red flags I ignored. When I asked if I could leave since he wasn’t there, this doctor said I should sign the waiver so they won’t be involved in anything should something happen to me when I leave. That was guilt-tripping.
Her name was Golden, but she was one of the most rotten creatures I’ve encountered. On a Wednesday in February, I was set to be infused at 9 a.m. An hour later, she arrived, looking annoyed. Then she came back at 11 a.m. and said the words that will forever be etched in my memory, “You don’t deserve to be treated. Your situation does not warrant the medication.”
I forgot I was in the Neurology ward and cried in anger. She looked annoyed and left. Instead of writing MS in my medical record, she wrote bipolar mania and how I was mentally disturbed. I do have bipolar mania, but I know it doesn’t cause blindness or paralysis.
For people who don’t know how the medical system works, they’d say: “What’s wrong with that?” My mental disease was weaponized against me in a obvious situation wherein my chronic illness was taking a toll on me. I was crying for help and I was told I did not deserve treatment. Did she explain to me why? No.
My records are forever broken if someone looks at them. They’d see the point of view of a doctor, not what happened or the pain of the patient left to suffer from medical malpractice. Do you even call it malpractice, or is it called intentional denial of someone’s right to be treated?
I had to go through physical therapy again, but there’s no money well to keep grabbing money from. I went to a public hospital for affordable healthcare but I was denied that and it destroyed my life. Now I understand why people would rather go to debt than go to a public hospital. Because of people like her and the ones who just let it be.
I am writing this for persons with disability. I hope you learn a lesson from my suffering. I promised myself I would never let anyone decide what I deserved. It is your right to be treated. The medical society we have is ablest, and people like the rotten doctor are prevalent and are in a position of power that cannot be challenged.
As I write this, I look at the eyedrops they gave me, and it reminds me of the five-digit medicine prescription I have to buy to keep breathing. Money runs out and as I prepare for the inevitable, I hope and pray that someday, no one will ever experience this. That there will never be a power-centric medical system. And that one day, there will never be a reason to cry for help. (MIRANIEVA BUEN)
April 19, 2024
