Putting the "Ability" in Disability pt 2

see Putting the "Ability" in Disability pt 1 for the first part of this article that I wrote about this amazing individual.

I have been absolutely amazed by this young woman after our chance meeting in a doctor's office. At 21, Melody Gardot is disabled, after living 19 years free from disability. She has proven herself to be a fighter in the face of many issues: Insurance, Doctors, Brain Injury and Physical inabilities. And she has found a way to cope with that constant fight: music.

Jason: Last time I talked to you, I asked you what had happened to you, and you told me how you were in an accident. What is a day or a week like for you now living with disability?"

I would say it's much harder than living without one, but that’s just my opinion. Some people might argue it’s easier. After all, I don't work, I am no longer able to go to school, I don't drive and I don't do a good number of the chores I used to. You could argue I had a life of ease, but you would be dead wrong.

I don't do these things because I truly cannot. It's not a choice. Part of me would love to be independent, but it’s just not possible. I rely on others help for nearly everything, and when I am not reliant on people, I am reliant on devices such as my cane or a grabber device to reach things.

Let me give you an example. Did you ever even think about how keeping the vegetables in the bottom drawer could be a problem? No? Me neither. But in fact, everything in the house has had to be rearranged so I can reach it. I have dressers with nothing in the bottom two drawers. I need a chair in every room so I can sit down to catch my breath or get dressed. I have a hospital bed that adjusts so I can get in/out of it. All of these little things, as a person who is not disabled, you do not conceive.

I suppose the best answer to your question is that having to live as a disabled person after living without disability for so long, is one of the hardest challenges I have ever had to face. It’s not just about acceptance from others. It’s about acceptance from me. Part of me forgets I am disabled until I get hurt, or simply cannot do something. I'm still learning every day.

Jason: Wow, I can only imagine. So you have had to go through a lot without the influence of others. What about the people you deal with regularly, do they understand this?

I'm shaking my head reading this question. If you go to my website, www.melodygardot.com, and you wait a few seconds, you'll see one example of the way people have reacted. Let me go down the list so you grasp it more simply:

Insurance Company: Do not have a clue. In the beginning they took care of some things. But as my condition got more and more complicated I started to see how terrible things can be as a patient. I have been denied almost everything requested. I sent letter after letter with my mom helping me (I just couldn't do it alone), only to receive more letters stating they would not grant my request. Despite having prescriptions from doctors and proof of necessity, it came down to the fact that they did not want to pay. As a result, I have not received all the treatments or devices that help to decrease my pain and improve my daily life. So I am still just as disabled, facing issues that are nearly two years old.

octors: I at one point saw doctors 6 days a week. It’s been narrowed down to an average of 3 days per week. I now have doctors I trust and who respect me. They are experts in their respective fields which helps because even though I have been "diagnosed" my condition continues to evolve and change and issues arise that I don't know how to handle. I did not have doctors like this in the beginning however, so my suggestion to anyone going through this is to keep changing doctors until you find one who understands. I once had a doctor who made me wait 3 hours for an appointment. THREE HOURS. You know why I saw him? Because of Pain issues related to sitting. Sounds absurd and it took me three visits of excruciating pain to realize I was never going back. He still doesn’t understand why.

Family: Well, no not really. Some have understood, but I always get the question "when are you going to be better?" which is more rhetorical than saying are we there yet. I think they want to believe that the person I was is the person I am today, but that’s just not true. I am far less capable and far more expensive to take care of.

Friends: Somewhat similar to family, very few people understand or see the amount of effort it takes for me to just be here. What takes you 15 minutes, takes me 3 hours and half of that time I need assistance. People in general see very little of the efforts I make to be anywhere, and so disability becomes very deceiving. They can’t help but misinterpret what they see especially because half the time they choose not to look.

Jason: So if you’re saying its deceiving, what can't the average person see?

Well you will usually see that I have band aids on my hands somewhere. That’s because I burn myself daily because I cannot feel anything in my fingertips. I spend most of my time in one room because of the difficulty when walking on stairs. I have to keep things on tables because if they are on the floor I cannot pick them up. I require a special seat for any chair. I even have a specially designed seat for the car that was designed by a Team at Einstein Hospital. There is a special seat in my shower even. The list goes on. I have more devices than a Radio Shack. And I need all of them daily. But you would probably never see them.

Jason: Well, above all the things you find to be challenging you have made some wonderful music. Personally, I have never come across something so pure or emotional before. And I am praying the world embraces you, disability and all.

Thanks Jason. The music has been a great therapy for me. I recorded all those songs, as you know, while I was bedridden and unable to walk. I needed a way to push past my difficulties and the only thing that helped me was music. Even now, when I have something to say, I say it from behind a guitar for the most part.

My doctor was the one who suggested I play because he was concerned about my brain injury. The fact that I have memory problems is best described as such: your left and right brain need to be connected in order to operate and retrieve memories. For this to happen, bridges need to be in place. When I got hit all my bridges went out. So I don't retain any information am given. But, he said music could help to rebuild those bridges. So he insisted I start to play again, no matter how difficult it was.

I don't know much about anything, but all I do know is that for those 3 minutes, when I’m really singing and playing, I just get lost and it’s almost as if I don't have any pain. It's like for 3 minutes I’m free and I can transcend it all: the disability, the suffering, the constant struggle. If there was any greater freedom in the world I wouldn't know it.