From the Lab Rat's Desk - December 01, 2008
Tuesday, 2. December 2008, 00:36:26
I've been on this road of neural death with diagnosis attached for about eight years. Granted a few years beyond the typical prognosis, and I should be happy about that, but it can be a mighty grim path to travel. Of late, it has not been lost on me that I make this journey solo, without a "significant other", "life partner" etc.
In this society that is a great disadvantage. Add to that some other disadvantages such as being and immigrant with no well established extended family. There is no pension of nest egg built before becoming unemployable, I was in my mid forties the nest was just emptying out and I was embarking on those years one typically uses to build that security for later. Along with my unemployment went the long term disability, pensions etc. Although dutifully paid somehow it was not there when I needed it. Had doctors been a little more willing to attach a diagnosis I might have had some eligibility, but it took them too many years. The only other sources for services are faith based charities and I am not a card carrying member of a parish or church, nor should I have to be to be cared for when I need it. Yet the government underwrites the faith based charities where you sing for your supper, including those where first you stand in line along the street for a few hours for your tray. There is lots of food but few are allowed to hand it out, charity is heavily regulated.
The safety net insists you use up all savings and holdings before you have the eligibility to be on "welfare" and unless you are first on welfare, disability applications are not taken. I was unemployed for several years before my application was accepted and two appeals before it finally went through and I was destitute. From that point in life there are few ways to recover your standard of living.
On my own I could not afford to rent anything other than a room, an "SRO", which means no security, no privacy and most of them are very scary places with no accessibility for persons with wheelchairs and other needs,. My son, who is also disabled shares and small one bedroom apartment with me, he has the bedroom, I sleep in the living room, this we can just afford. This way we both live a marginal but private, secure and dignified life. However we are tied by need to each other, if either of us were to leave the other would be unable to afford the apartment, it is a pretty scary world if you are disabled and single.
As world finances are in turmoil you can't help but be fearful that the first cuts will be made to services, not corporate bailouts. Anything less than what we have now will put us on the street. You wouldn't do it to a dog. Horrible choices - if you can call them choices are always put before you, accept and apartment but lose the dog and kick your disabled kid to the curb. I was shocked they would even consider that a choice.
What I have learned is that what one social worker said to me many years ago "you're still attractive why not find a man and get married before you lose your looks". I was disgusted, basically I should consider my only means of certain survival is to find a man, any man, or woman, and live out of his/her pocket. Take some abuse if need to, love isn't necessary, just would be nice if they liked us and treated us kindly. Wow, we've come a long way as women haven't we? Not far from the poorhouses of the Dickens's novels I read in my youth. As it is my survival depends on my son sharing the apartment. I am at all times at the mercy of someone else. The notion that there is a safety net is bogus. I am not safe, far from it.
Horrifyingly I continue to deteriorate and I don't know how long I can manage, continue like this. As it is now all my time is spent either sitting in a chair trying to keep busy with the few abilities I have left, or hygiene and housekeeping to very basic level. No more cooking of full meals, it is heat and eat now. I have simplified my wardrobe so I can quickly wash in a sink and let dry fold and put in a drawer - no ironing, no complicated fasteners. My one great joy is taking out the dog once a day.
Everyday I agonize that there is noway I can still even hope to make some income. I have tried, but stories didn't find publishers, only a few paintings were sold, and I no longer have any energies left to do promotions. Friends are all gone, some keep in touch but at most I see a friend once in 6 months. I cannot remember my last hug, ir was about a month ago. I am human, I ache for human contact. I am often upset by my deterioration but have no one to speak with about it. No one holds my hand, no one gives me a hug.
I try to feel good that at least I am not dragging a husband into this depressing scenario, cold comfort. Again I find myself living in a world where the only way to feel safe and cared for is to be coupled up with someone who feels committed to stay, and preferably has an income and insurance as well. If there really was a safety net this would not be the case. If i had my own income I might be able to purchase the services of a live in or out companion. I think with a little help I could still do some writing, painting and if fortunate find a market for it as well and have something to leave my kids.
Where did it all go so terribly wrong? Being and immigrant is the wrong thing to be, I cannot draw on what my parents and grandparents had built up back home. My marriage went to bits and I found a very sexist world still existed. A world where doctors would speak to your spouse as though you were not even in the room, but without a spouse no useful information was imparted not were your complaints given the same weight as when expressed through the spouse. We have not come a long way as women, not at all. Not being a member of a wealthy or at least charitable church puts me with less resources to draw on.
I find it offensive I should buy into a faith for the sole purpose of a better standard of living, it is repugnant. I learned during the early years that Catholic for the most part was not considered "Christian", and if I were to mention having first been raised Buddhist, well, there were many suddenly refusing to break bread with me among my "Christian" friends. Worse still was the realization that much of these resources were funded by our tax dollars, and to me faith should not be attached to faith.
Also I found that some diseases are better than others, and mine did not fit with any of the big organised disease charities. The one small organization which finally accepted me as a member, the BC Ataxia Association, still grumbles that mine is only a "sort of" ataxia unlike the inherited versions. Even the on-line support group which was set up for the disease which I was diagnosed with found my trials of unorthodox treatments so offensive as to attack me for it until I left. I was brought to tears with all those attack emails, and on top of it many of the member of that group suffered from very different diseases than mine. I stuck with my unorthodox treatments and at least I am still alive, beyond my prognosis.
Really though, should someone struggling as hard as I am have to suffer so many indignities, often at the hands of those supposed care for me and all those in my position. There are days I feel guilty for being a single immigrant with no nest egg or portfolio, unwilling to kick dog and son to the curb and live in some roach infested SRO until the desire to live is good and dead, then with my power of attorney in the hands of a government run nursing home I will quietly be given just a little too much morphine. That is the thought that does make me cry, quite often lately.
I need only a little help and encouragement, like a potted plant needs fertiliser, sunliight and water, and so does every person finding themselves in this position because I am certainly not alone, there are persons everywhere in this predicament, we don't all have in home carers, many struggle on their own. If my hands fail utterly and cannot type, my voice falls silent, no one will type for me. People wither without human contact, you don't get many hugs in my position. Even family stays away because seeing me so different from what I once was is "too depressing". Of course their lives are busy, and visiting me is not convenient.
I can scream "but it isn't fair", and I think I would be right, but fairness does not live in this world. Women most especially were fighting wrongly for equality when instead they should have fought with all members of the human race for fairness no matter the gender, ability, race or faith. I cannot be equal when I cannot do what you can, but I should be able to tap into fair treatment as you can. Winter allows for more thoughts on the passage of time, and it raises my fear level, one hopes to end life in a better world than the one we were born into.
We should at least laugh when we can.
In this society that is a great disadvantage. Add to that some other disadvantages such as being and immigrant with no well established extended family. There is no pension of nest egg built before becoming unemployable, I was in my mid forties the nest was just emptying out and I was embarking on those years one typically uses to build that security for later. Along with my unemployment went the long term disability, pensions etc. Although dutifully paid somehow it was not there when I needed it. Had doctors been a little more willing to attach a diagnosis I might have had some eligibility, but it took them too many years. The only other sources for services are faith based charities and I am not a card carrying member of a parish or church, nor should I have to be to be cared for when I need it. Yet the government underwrites the faith based charities where you sing for your supper, including those where first you stand in line along the street for a few hours for your tray. There is lots of food but few are allowed to hand it out, charity is heavily regulated.
The safety net insists you use up all savings and holdings before you have the eligibility to be on "welfare" and unless you are first on welfare, disability applications are not taken. I was unemployed for several years before my application was accepted and two appeals before it finally went through and I was destitute. From that point in life there are few ways to recover your standard of living.
On my own I could not afford to rent anything other than a room, an "SRO", which means no security, no privacy and most of them are very scary places with no accessibility for persons with wheelchairs and other needs,. My son, who is also disabled shares and small one bedroom apartment with me, he has the bedroom, I sleep in the living room, this we can just afford. This way we both live a marginal but private, secure and dignified life. However we are tied by need to each other, if either of us were to leave the other would be unable to afford the apartment, it is a pretty scary world if you are disabled and single.
As world finances are in turmoil you can't help but be fearful that the first cuts will be made to services, not corporate bailouts. Anything less than what we have now will put us on the street. You wouldn't do it to a dog. Horrible choices - if you can call them choices are always put before you, accept and apartment but lose the dog and kick your disabled kid to the curb. I was shocked they would even consider that a choice.
What I have learned is that what one social worker said to me many years ago "you're still attractive why not find a man and get married before you lose your looks". I was disgusted, basically I should consider my only means of certain survival is to find a man, any man, or woman, and live out of his/her pocket. Take some abuse if need to, love isn't necessary, just would be nice if they liked us and treated us kindly. Wow, we've come a long way as women haven't we? Not far from the poorhouses of the Dickens's novels I read in my youth. As it is my survival depends on my son sharing the apartment. I am at all times at the mercy of someone else. The notion that there is a safety net is bogus. I am not safe, far from it.
Horrifyingly I continue to deteriorate and I don't know how long I can manage, continue like this. As it is now all my time is spent either sitting in a chair trying to keep busy with the few abilities I have left, or hygiene and housekeeping to very basic level. No more cooking of full meals, it is heat and eat now. I have simplified my wardrobe so I can quickly wash in a sink and let dry fold and put in a drawer - no ironing, no complicated fasteners. My one great joy is taking out the dog once a day.
Everyday I agonize that there is noway I can still even hope to make some income. I have tried, but stories didn't find publishers, only a few paintings were sold, and I no longer have any energies left to do promotions. Friends are all gone, some keep in touch but at most I see a friend once in 6 months. I cannot remember my last hug, ir was about a month ago. I am human, I ache for human contact. I am often upset by my deterioration but have no one to speak with about it. No one holds my hand, no one gives me a hug.
I try to feel good that at least I am not dragging a husband into this depressing scenario, cold comfort. Again I find myself living in a world where the only way to feel safe and cared for is to be coupled up with someone who feels committed to stay, and preferably has an income and insurance as well. If there really was a safety net this would not be the case. If i had my own income I might be able to purchase the services of a live in or out companion. I think with a little help I could still do some writing, painting and if fortunate find a market for it as well and have something to leave my kids.
Where did it all go so terribly wrong? Being and immigrant is the wrong thing to be, I cannot draw on what my parents and grandparents had built up back home. My marriage went to bits and I found a very sexist world still existed. A world where doctors would speak to your spouse as though you were not even in the room, but without a spouse no useful information was imparted not were your complaints given the same weight as when expressed through the spouse. We have not come a long way as women, not at all. Not being a member of a wealthy or at least charitable church puts me with less resources to draw on.
I find it offensive I should buy into a faith for the sole purpose of a better standard of living, it is repugnant. I learned during the early years that Catholic for the most part was not considered "Christian", and if I were to mention having first been raised Buddhist, well, there were many suddenly refusing to break bread with me among my "Christian" friends. Worse still was the realization that much of these resources were funded by our tax dollars, and to me faith should not be attached to faith.
Also I found that some diseases are better than others, and mine did not fit with any of the big organised disease charities. The one small organization which finally accepted me as a member, the BC Ataxia Association, still grumbles that mine is only a "sort of" ataxia unlike the inherited versions. Even the on-line support group which was set up for the disease which I was diagnosed with found my trials of unorthodox treatments so offensive as to attack me for it until I left. I was brought to tears with all those attack emails, and on top of it many of the member of that group suffered from very different diseases than mine. I stuck with my unorthodox treatments and at least I am still alive, beyond my prognosis.
Really though, should someone struggling as hard as I am have to suffer so many indignities, often at the hands of those supposed care for me and all those in my position. There are days I feel guilty for being a single immigrant with no nest egg or portfolio, unwilling to kick dog and son to the curb and live in some roach infested SRO until the desire to live is good and dead, then with my power of attorney in the hands of a government run nursing home I will quietly be given just a little too much morphine. That is the thought that does make me cry, quite often lately.
I need only a little help and encouragement, like a potted plant needs fertiliser, sunliight and water, and so does every person finding themselves in this position because I am certainly not alone, there are persons everywhere in this predicament, we don't all have in home carers, many struggle on their own. If my hands fail utterly and cannot type, my voice falls silent, no one will type for me. People wither without human contact, you don't get many hugs in my position. Even family stays away because seeing me so different from what I once was is "too depressing". Of course their lives are busy, and visiting me is not convenient.
I can scream "but it isn't fair", and I think I would be right, but fairness does not live in this world. Women most especially were fighting wrongly for equality when instead they should have fought with all members of the human race for fairness no matter the gender, ability, race or faith. I cannot be equal when I cannot do what you can, but I should be able to tap into fair treatment as you can. Winter allows for more thoughts on the passage of time, and it raises my fear level, one hopes to end life in a better world than the one we were born into.
We should at least laugh when we can.
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