"If we can send people to the moon, we can find a cure for paralysis"

I came across this blog post today. I thought others might find it interesting. Here are some memorable quotes:

"People living with spinal cord injuries are a silent minority," said Southard. "There are hundreds of thousands of us in this country, but there's no exact count anywhere. That's how invisible we are. We need to make our voices heard. We need people to understand how important a cure is and how close we are to finding it."

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"Only recently could I feel water again," said Southard. "I can't express what that feels like. I don't have the words to describe it. It has to be really cold water, but, still, I can feel it."

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"I haven't taken it off since the moment I put it on three months ago," said Qirici, whose younger brother suffered a spinal cord injury 16 years ago while doing gymnastics on the beach. "When someone you love suffers an injury like this, it ties you to all others who suffer the same. It brings you all into the same category."

Southard's mother Julie agrees with Qirici's sentiment that a special connection exists between those who understand a certain type of injury or illness.

"My bracelet - it's really a bond," said Julie Southard. "[When I see others wearing one] I feel like I'm joined in a quiet battle with other people who understand."

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It's crazy how that was all written back in 2005 (when I was about to graduate high school), and there has been little progress since then. People with SCI's really are a silent minority. Why has there not been much progress? Spinal cord injury isn't as glamorous as fighting for a cure for cancer or AIDS. However, it's something that affects our lives on a daily basis in literally everything we do. The chronic physical, psychological, and social pain that some experience often leads to depression and even suicide. It not only affects the injured, but everyone around them.

Do I dare also add that the "big money folks" are also slowing progression of finding a cure? Why would the gargantuan medical field (lobbyists, pharmaceutical companies, hospitals, supply companies, physicians, nurses, therapists, neuropsychologists, etc) want a cure when SO much money is being made by keeping us this way? Why teach a man to fish when they can keep coming back to you to buy more fish?

If you would like to purchase a bracelet to raise awareness and raise money for additional research in finding a cure, here's the link:

http://www.bumperstickermagnet.com/wristbands-cure-paralysis.html

Compensate

[This post is more of a personal one for myself. I wrote this a few nights ago when I was pretty riled up. Looking back, it doesn't really make much sense. It also sounds kinda wimpy. I apologize for that.]

After my accident, I never thought I would be anywhere close to “normal”. What I mean by that is that I never thought I’d be able to do things that other people were doing. I had so many things going for me pre-accident. That sounds cocky, but I think I can say that now because I am not that person anymore and I do not have that life.

Now, things are much more difficult. Aside from the obvious physical obstacles of doing certain things, it seems like there is much more to overcome than simply “not being able to walk”. Thankfully, I am getting stronger and stronger and doing things is becoming much easier. The biggest obstacle to face? The perceptions of other people.

People have a natural tendency to look down upon me—literally (because I am usually sitting while they are standing) and figuratively. As a person with a handicap, people consider my life to be handicapped. How can poor Hammad do things on his own? He can’t do that! He can’t be a doctor!

I could explain where this mentality comes from, but I’ll save that for a different post.

Basically, right now I am upset because I heard something that someone said about me. Having a handicap in one area forces me to work ten times harder than everyone else in order to compensate for this deficiency. This is something I had to realize several months ago. I was definitely “good enough” for people pre-accident. Post-accident, however, I became sub-par. Friends, parents, and people who I thought I would talk to for forever all started to treat me as if I was a low class, low intelligence, weak little boy.

What does this do to me? It forces me to work much harder than everyone I know to get past this. I may not be able to beat you in a race, but I will still work my butt off so I don’t turn into a fat slob. I may not be the best “catch”, but I will now work hard to be better than the rest of my class in medical school. It takes me longer to do certain things, but that just means I’ll have to not waste time in other situations. Life is now “life + 20 minutes”.

Promise

Amber: "Hammabhai, Hammabhai! Check this out. Promise me you'll do this when you start walking again. PROMISE ME!"

Me: "Yes, I promise."

Reality check

Right before MIST 2010, I had this reality check last Wednesday or Thursday. I found a CD of these pictures that my boss had taken. He visited the crash site and the junkyard. This is after they had to hammer out my corner of the car so they could pull me out, because the roof had totally crushed me. These images have been glued in my mind ever since. I saw these pictures for the first time last week. I don't think I'll ever forget them.

"What lies behind us and what lies before us are small matters compared to what lies within us." - Ralph Waldo Emerson

Grateful

While talking online with one of my friends, she accidentally typed incorrectly and said that she had “only started eating in college”. I caught the typo and seized the opportunity to poke fun at her, saying that she must have been on a feeding tube before then. She wasn't offended, but told me, “Ha ha, that's not funny. My cousin was on a feeding tube.” I shrugged it off and told her that I had been on a feeding tube as well. I thought it was another one of those instances when people tell me, “Yeah, I know exactly how it is, Hammad. I broke my leg and was on crutches for a few weeks and it sucked, too. I know exactly how you feel.”

What she said next took me by surprise. She told me how she never hung out with her cousin because he never left his house. My friend only hung out with his sister. Her cousin was bed-ridden his whole life. Slowly, his muscles deteriorated until eventually, he could not eat and had to be put on a feeding tube. At the young age of twenty-five, he passed away. As he was dying, he kept asking for his grandmother because he was very close to her. The next morning when his relatives went to his grandmother's house to inform her of his death, they saw that she had passed away as well. His mother and sister had spent their lives taking care of him—feeding him, turning him in bed, changing his diapers, etc. When he passed away, it was as if their baby had been taken from them.

I probably seemed pretty insensitive as I was responding to my friend telling this story, because I simply kept saying, “Oh, wow.” I honestly wasn't sure what to say and my mind was racing with different thoughts. I kept thinking about how blessed I am for everything that I have. I can get out of the house, I can eat amazing food, I can take care of myself, I can hang out with friends—these are just a few things that I am blessed with.

Hearing this story reminded me of something that my mom said to me once when I was much younger. Like I said in an earlier post, she has a way of saying things that make me think of things in a new light. From Urdu, the rough translation is, “When you look up, look down.” This means that when one looks at the people who have much more than us, we must also remember not to forget about the people who have much less than us. I am not completely void of thinking negative things. Occasionally, I think back to the things that I used to be able to do or I look around to people around me and wish that I was like them. But then I re-ground myself and remind myself that I am truly blessed. I am blessed to have survived the accident. I am blessed to have recovered so well from certain injuries. I also feel blessed that I have experienced things in my past that I cannot do now. I cannot hike through trails or play football with my friends, but instead of being depressed that I cannot perform these acts (like I was for a few months after my accident), I am grateful that at least I know what these things feel like. It is like the old saying that girls seem to love, “Is it better to love and have lost, or to have not loved at all?” Is it better to know what it feels like to experience life like everyone else and then lose certain things, or is it better to not experience these things at all so one doesn't know what they're missing out on? I'm still trying to answer this question for myself. All I know is that I'm blessed.

Will's video

My roommate in the hospital, Will Archibald, is an amazing guy. Even though I was only his roommate for a week, he had a lasting impression upon me, as he does with everyone. This is a video his friends made for an event at his college:

Article I read on price of health care

This is different than my previous posts, but I think it is still relevant.

It's about an article titled "Health care industry sick with medical waste"

As someone who has seen the patient side of health care and will hopefully see the physician side of health care (God willing), I found this interesting.

Here are some memorable quotes:

Consider this: For every dollar the nation spends on health care, 50 cents is wasted.

Wow. Crazy numbers. I have no words.

"The old belief that better care is more care, turns out it's just not true," James says. "The big problem. It costs you money. Most of these savings go back to insurers or the government, those windfall savings. We're nearly always financially punished every time we save money."

"Under a fee-for-service payment system the incentive is to do more. To generate more fees. And yes, the fundamental structure of payment today is based on paying for the unit of service. So we've had a lot of discussion around how to turn those incentives around and pay not based on volume but pay on value, quality and cost," he says.

I can definitely say that I was most likely given unneeded things (equipment, procedures, therapy) while in the hospital. I can also positively say that I (well, mostly my insurance) was charged unnecessarily. “More fees” were generated all the time. I really wish things could be turned around so payments can be attributed to “value, quality and cost”.

Experts say a higher price does not always mean better quality of care. It can pay to shop around for treatment services on your own; however, only a handful of states provide easy access to information on how much medical procedures cost

It may seem silly to “shop around” for healthcare... but if that's what is necessary, then go for it. It's quite sad that those involved in the huge health care field (physicians, nurses, therapists, hospitals, insurance companies, drug companies, equipment companies, etc.) take advantage of those who are ill/injured and actually need quality care. The patient does not come first; cost and convenience do.