For two weeks now, the internet is abuzz with various posts of celebrities and famous personalities challenging each other to dump ice over their heads to raise awareness for the ALS disease, commonly known as Lou Gehrig’s disease. It is a is a neurodegenerative disease which causes muscle weakness and atrophy throughout the body due to the degeneration of the upper and lower motor neuron. Celebrities like Oprah Winfrey, Michael Jordan, David Beckham, Bill Gates, Mark Zuckerberg and a lot more have accepted the challenge and have helped raise millions of dollars for the charity associated with this disorder. The trending activity has caught the attention of many but now that people are aware of this illness what’s next? Upon watching the videos, did you make a move to donate? Or are the videos uploaded for mere entertainment? I have read a blog post from a person living with a family member, who has ALS, and she’s right, you can never understand this unless you at least try to be in their shoes and feel their struggles. In my Facebook status I mentioned that ALS is almost similar to AVM. The good thing with ALS is it can be diagnosed early on and since its hereditary you have more or less an idea that eventually you might be affected. with AVM since the bleed comes as a surprise about 90% of the time the patient doesn’t know that he/she has the illness , so there is really nothing much you can do about it, more so if you die from it. A lot of avm cases were mind baffling to some families who had their sibling, parents cousins, aunts just drop dead, and in the autopsy they would eventually find out that its AVM. What am I getting at? In my own way I would like to raise awareness about AVM but no dumping of ice please. Walk in our shoes and understand what we go through each day. I smile at the idea that eventually one day people would stop judging and stop looking at us with mocking eyes and be more sympathetic. Also eventually I would like to rally influential people to make AVM be removed in the exclusions of health insurance companies. I mean how useless it must be to have an HMO but you can’t use it to pay for hospital expenses. Last year when my AVM burst I had to undergo craniotomy in a private hospital. I was in ICU for a good 10 days. My total hospital bill summed to almost P800, 000 and the HMO only covered P20, 000! I can imagine how difficult it must have been for my family to deal with that but God never abandoned us. He gifted us with generous people. Since the bleed I have not returned to work which means all of a sudden I don’t have an income to augment medicine, therapies and other stuff. My medicines amounts to P7000 a month while my therapies at aroundP10, 000 a month. Why is it that AVM is exclusion in HMO ruling? Well, because they said it’s congenital. Meaning, you are born with it. Yes, you may be born with it but it’s difficult to diagnose. As I have mentioned majority of the cases, the patient just die. So I don’t think it’s fair to exclude this illness from the insurance coverage.
Another thing, I would like to eventually have people specially in the corporate world work on improving employee benefits revolving in this situation, because sad to say there is nothing for us after the bleed. It’s like, forget you have a career you worked so hard for… like youre so indispensable. You can be easily wiped off from the face of the company you helped build.
Try to walk in our shoes, be like us, even for just 15 minutes of your time. Now after that let me know if it’s easy. Since my affected side is left, since the bleed I have not had the chance to move my arm and lift my leg. I have made a list of activities you can try out.
1. Try eating with only one hand. I still consider myself lucky because I can still eat because some AVM survivors took a year before they learned how to swallow again. It’s easy yes, but try eating fish or anything that requires peeling or anything that has bones
2. Wear rubber shoes and try to tie your shoelaces with one hand.
3. Try to wear a shirt with one arm just tucked on your side, you can’t lift itor wiggle your body through it.
4. Wear a bra using only one arm.
5. Lie on the bed stiffly for 2 hours. You cannot move to your side or even lie on your stomach.
6. Take a bath sitting on a chair, shampoo your hair using one hand scrub your body using only one hand. This is the most frustrating for me; I can’t scrub the right side of my body because my left arm just lies lifeless like dead meat.
7. Button your child’s polo with one hand (with the school service honking their horns at the gate of your house causing you to panic even more.
There are still more, but I guess as I add up tasks I become more aware that here I go again, I’m ranting again. I’m going back to an unhappy territory. So I think you get my point right? Imagine half part of your body is there but is not cooperating. I remember one patient in rehab said out of frustration. “papuputol ko na nga lang tong kamay ko wala naming silbi”. I know it will take a very long time before I could recover completely and it’s not 100%assured. And maybe by that time I’m already old, too old to go back to the job I left behind. But t I can do other stuff, I can build my own business. I can teach in a university. I will try to be productive. But for the mean time. I will try to raise awareness for AVM and document my progress one blog post at a time