The night is my time to come alive. My family is home, safe, and asleep in their beds. The sound of Rogers snoring brings a peaceful feeling knowing he is here with me. In a way it makes me feel ‘normal’. [whatever normal is] I do not feel useless in the night. There is no reason to get up and go. Being in my bed, blogging, playing games, requires no walking.
The daytime brings feelings of emptiness. There are so many things I want to be doing, so many things I want to accomplish. Those things must be forgotten now and a new story has to be written. I miss being able to work outside of the home. I loved working, being around people, the excitement of it all. But again, a new story must be written. How do we write that story?
I once had a chair, a chair that brought me back to life. It empowered me. I went through all the training for the chair. My insurance paid for the months of training, but then denied me the chair. So my father made it possible for me to purchase the chair. I cannot tell you how full of joy I was when he told me we would get the chair. My insurance company [Pacificare] called it a luxury item and therefore they would not pay. The chair is/was called the iBot. It could go into a 4 wheel drive mode so I could get up curbs and thresholds. It could rise to 6′ on two wheels using a gyro system. I was able to reach things again, go to peoples home and actually get in the door. But, it was a luxury.
Then after everything, within one week we got a notice saying they would no longer be offering the iBot. The cost was too high [26,000] and insurance companies would not pay so it was not cost effective for them. They would offer 3 years warranty but after that you are on your own. We chose to return the chair as if something went wrong the cost to fix it would not be worth it for us. A certain part costs 5000.00 and that is not covered after 18 months.
I remember going to Sam’s club and feeling so empowered. I went up in the two wheel function and was tall again. Instead being looked at and asked what happened, people stopped to ask about the chair. Not to pity me. The chair gave me my independence, my life back.
I remember the day the rep came to take the chair back and return the money. It felt like I was being told I had MS all over again. My independence was leaving through the front door. I tried to smile and make it ok, but the tears slowly fell from my eyes. This chair, considered a luxury by the insurance company, gave me back hope. I could reach things in my house again, I could get a glass on my own, cook on the stove w/o burning my arm. Now it was gone. As he drove away with my chair, a part of me went as well.
In Walmart yesterday an item I needed was on the top shelf. My first thought was the iBot. I was so embarrassed that I could not reach it. Luckily an adorable associate came back to the aisle for me and got it down. I thanked her and rolled away with tears welling up in my eyes. Independence lost!
We ended up using the money to purchase a handicapped accessible van. We did need one, so there is the positive. But, I miss that tiny bit of freedom I got back. Even if it was only for a short time. I miss my iBot!
I still get angry at their comment that it is a luxury chair. Is it a luxury to go up a curb? Is it a luxury to be able to reach things? Is it a luxury to have a chair that can get you on grass so you are able to see your child play soccer? Is it a luxury to have a true quality of life? I truly wonder how these people would feel about it if someone they loved needed one. Bet they would get it paid for.
The iBot would have been my new story of independence. But now that story must be re-written as well. So, tell me, how do we write that story. I truly need to know.
On a lighter note… if you know any millionaires that have money to spare and are looking for a cause, look no further! Here I am!! 😛
Blessings and Peace!
UPDATE! OK, so my hubbies snoring is now like razor blades going through my brain!! Where is an iron skillet!! If I have to roll him over one more time it will off the bed!! rofl