Trying to live on a budget

September 10, 2007

Joel Akin

 A budget is when you have a limited amount of money. A budget is when you live inside of that amount. A budget is when you are given money as a stipend. It is meant to provide and provide even if the economy rises. This means if therapy goes up an average of 20 more dollars a month that isn't good. But what if the price of food also goes up? Add another ten dollars. Yet in the same period of time gasoline doubles. Add that to the monthly total. It now comes to an additional 30 dollars. That is just for therapy. So as a disabled person I now have to pay an additional sixty dollars a month for therapy. And that isn't the main cost it is the cost of living.

 Now the government did add an additional fifty a month but that covers everything. And since the prices on homes and on rent and on gas and on cost have living have doubled we who are AISH recipients are literally without cost or measure of increase.

Now as one who lives a long life but has a potential to die with the disease I have there is a discrepancy. It is called living. I have a problem with it called "How?"

 Now as one who presently lives with my parents there is the sick thought that one day they'll die and I might inherit a portion. But that could be thirty years from now. Hopefully never. And the fact is it doesn't answer the problem it only prolongs the choice. Do I, as a person on AISH, kill me by letting the government choose for me? If that makes any sense lets put it into perspective.

New rules seem to allow a fantastic new bounty. A person on AISH receives 1050 a month. As far as I know that is average. Some may receive more. I don't. I get that 1050 and it is sweet. I have it in my bank account and I can dare to try and balance my account the time it comes in. I look at each purchase and I ask "Why?" A few times I go out and eat but never spend over $20. Yet I feel guilty if I do it more the 2-3 times in a month. Yet I get hungry for choice. I get hungry and I get hungry. So choice is something beyond what Meals on Wheels brings and what life provides. My sister is a godsend and she makes some exotic meals.

Yet I go into this to provide you that life isn't horrible. I have money. It goes to the basics. Yet I have a truck and eventually it will pass on. AISH requires I sell it for all its worth. But if it takes $1000 to repair am I forced to do so in order to sell it for $1000? Or do I try and repair it to death? Now I have a problem where the engine light came on and am hoping its simply a sensor malfunction. But if its a gasket or if there are other problems more serious then I need help.

Yet here is where it gets bizarre. How? Again I am tired much of the day with dystonia. It is a malfunction of the brain and it causes me headache type pain. It is daily. It also causes uncontrollable spasms. I control them by purchasing various types of natural oils. That is where I could go broke because I would like to experiment. But I can't. I have to stick to doctor and pills which help other functions but none have ever helped the brain. And so I can't live life to the full let alone live.

Now if you think I'm planning on killing myself you are crazy. I love life. But my life is so filled with uncertainty I can't find a door.

 Now do I blame government with their rule? After all if I found a way to earn money I could get off AISH and live but not have medical support the provide. I guess that is okay but who wants the government to ignore someone who is  ill?

I think of it this way" The government is doing for the people who cannot do for themselves." But as one who is striving to find a way to earn money I can't. I can't see a way out. Not in the natural. In the spiritual I can. I have God and I have His promise I'll be cared for. And He gathers up those who are left. For He cares for them.

Yet who is it that will support me in the natural? It isn't wrong for the government to carry those who cannot lift their own head. But how do they survive who have mobility? How do they live? The handivan is there but who can wait on the handivans term when they have a specific appointment? If, as I have heard, you are herded and brought to your appointment as the handivan has time then that isn't help. The person who is able to drive should. Yet how can they afford a new vehicle? If, for example, the cost of a van is $50,000 and that is a cheap one then lets say the cost of improving it for a disabled person adds another 30,000 grand. That is 8 years of money from AISH. No person on AISH can afford that. Yet that isn't an outrageous price. It isn't out of most peoples league. Yet how can a person from AISH be seen as less? The answer is because they cannot earn. At least not in a normal way.

Now lets say I have a web site, and I do, but one that provides potential for income. It is something I've worked on since I became disabled. It is growing slowly month by month as I find time to work with it. It is potential and it is large potential. I have ideas no one else has. And those ideas could make me rich. Now you've heard it before but here is the gist. I am disabled. Some might say my mind is affected yet I still strive to work on things. And I still strive to work.

 I work on it in some form every week. And if I could get right with body I could work on it almost daily. But I can't because of my spasms. I can't sit normally. I have to lean back in a chair and put the keyboard in my lap. I can do it leaning forward but not as long before my body arches into a spasm which won't stop.

So I go into pain. Now here is issue I have with AISH in that they are allowed $400 a month in income. But the oddity of AISH isn't that part alone but it is what you entered into AISH with. If you were well off when you entered in you hit the jackpot. If you entered in poor you are out of luck.

 Now is that fair to those on AISH that some had homes in Arizona where they could spend the winter? I would like to do that. I would love to do that. I would live in Arizona or maybe Texas. And I would enjoy life because that is what I want to do. I want to enjoy life. I want to see the ocean. I want to see fruit trees that are exotic. I want to enjoy life and enjoy having life. And I want to know that people care.

Yet who reads this? Who finds this? Who goes out and says "I'll try to help someone today?" For even if I am allowed to go to Texas for almost six months I still have to come home and wait another six months for another six months. I don't have a way of driving. My truck is almost 17 years old. It is aging. It is giving me small problems. But it is aging. And if God keeps it together I don't mind but it no longer fits the bill for traveling. I need a van and it is high on my priority list. Only I want a van which has a couch which is comfortable. I want a small fridge. I want a cubicle where I can set up a small computer. I want solar panels to power things like the computer or a hookup which I can use. I want to be able to travel and lie back and enjoy life. I want to go to therapy and lie down even though they would allow me inside if I asked. I guess its the question of freedom. For in Texas I'd still need therapy but rare is the place that isn't now $60-75 dollars an hour. Some think massage is wrong but I don't. It is the only thing which helps me with the stiff muscles. I lock up after a few weeks without. I know. It starts up slowly and it grows. And it hurts. And I end up being miserable for months. I have to go to the chiropractor. I have this because of lack of money when the school of massage clinic closes down for holidays which seems to happen often.

 And I also don't like to travel when there is snow. And so that is part of me and my desire for a good van. One with good tires and good mileage. And people to stand by you and say "We'll help you." My family does. That is basically it beyond the government. But they are people who see me as needing to find my own way.

 And if I find my own way who then can help? That is why I pray and that is why I trust. That is why I ask God how do I end the dead end of AISH? AISH shouldn't be a dead end. It should be a shock and an absorber. First the shock is there to buff the person. If they are disabled they need people who fill out their forms. They need people to come and buff their problems down. They need people to support them in moving. They need people to support them in home selection. I went into things for awhile where I wanted independence. I tried to find a home but they were either too small or too high. In other words I find it difficult to climb stairs. One had three flights of stairs and no one to help me. My father wanted to come visit and I being sick had to aid him up. We were struggling to breathe by the time we got to the top floor. And if that is the best at the time imagine the situation now?

 And then there were places where the list of rules was longer then a prison sentence. And if that was bad you should have seen the rooms. Cold stone blocks that a motel rat would run away from. And it was run for the disabled but in case of fire down run just sit and pull out the burger because you are the bun.

And I know this is bad but who is there to help? Who cares for the disabled? We are 33,000 plus strong but we are weak. And as one who writes I could be called a voice but right now I am small. I see it from the inside. I see it as people who if you are disabled and independent don't have choice. You can't afford a home yet you should have the right to have one. There was a time when people cared for the disabled. Maybe not in our time but when men saw them as special. They were rare. They were able to see them as men or women who had a gift. For everyone is given a gift by God. It only takes time to develop it. I believe mine is ideas and writing and making websites. I love doing that but I also like photography. I need to use a tri-pod but I don't which is why quality isn't my gift right now. I also like to camp out and have done that as one of my life goals over the past year. I found it was possible. I purchased things month by month such as a tent I liked. It was wondrous even when I got slight stroke for not thinking of the sun beating onto me on the inside. I was sick for that but I want to go again and have found a few places I can afford. One is free but it is spooky in the mountains. The other is five bucks but it is the only place I go and both are out of touch of cellphone.

Yet these are small things which give me brief reprieve. I don't want brief I want full reprieve. I want a home where I can say "It is mine" and I want a library for my book collection. It is large and it is a treasure of a lifetime including things from before I grew sick.

 I want a place that is private and not surrounded by coldness or people who serve you a bowl of porridge for breakfast that is gray like mortar. If I had milk and if I had brown sugar and if I had perhaps water it might have been livable. But these were things not brought to me. I would have to add those things myself. So getting the basics is not a blessing. And if you say "That is all people need" then tell me who is out there to help?

I see this in society. I see it everywhere. I see that no one in society thinks of the people of AISH as deserving special treatment. There are no discounts in most places. True the library helps and that is a gift each year I take advantage of. I thank God for the music and books the library provides.

Yet there is also those businesses which do not give discounts. They have an idea people of AISH are rich are privileged. And if we are it is dreaming. We dream of what if and we dream of people who care. We are mostly those who survive on our wits. I had a friend on AISH. He suffered terribly with heart problems. Yet he went out and got a job as he had few supporters. He taught first aid classes and perhaps that is why he could show he knew the reason why people should know how to survive that way. But no one could find him a new heart in time so he died.

 And he was a friend to me but I lost touch when he moved. And it is that way because I used to love writing. But now I spend money for stamps only once a year when I buy one roll to try and last me the year. And if I see it as a bargain it is. I stopped writing my friends except via email because I can't afford the letter writing. Maybe I'm selfish and could send a Christmas card but that is the way I chose. To try and save every single penny and survive to purchase the few luxuries I have help with.

So the real question is one of people and God. We can spend our life hoping or we can write again and again. And if AISH is able to change then they will. It is up to people to complain and perhaps there are few of us who do. I know I've written in with ideas which were ignored. They never came to pass and several years have. And so if people could and would see the importance we provide to society maybe they would give us the time of day. But for now I remain. And remains is not the day of death but the remain of the heart. For it is the heart which goes on ticking.