What I write today is a combination of a question for my fellow man and a plea for help. This is a personal diary and will not be up to the awe inspiring quality of many diaries I read here on a daily basis. Nevertheless it's a diary I must write because it pertains to the one I love and her perceived worth, or lack thereof.
I begin with a question. What defines the worth of a person?
Is it the money they make? Is it the impact they have on the world? Is it the impact they have on an individual? Is it their ability to procreate and add additional members to society? Or is it simply beyond definition?
I ask this because it's a question my wife now asks me on a regular basis. What is she worth?
Why would she ask such a question? Because the world she lives in and the society she was raised in forces her to ask that question as she struggles with the circumstances of her current existence.
My wife is sick. Period. Has been for almost all of her life. The problem is that no one is really quite sure what she has. Chronic Fatigue Syndrome? Possibly. Chronic Epstein-Barr virus? On the list. Fibromyalgia? Definitely some of that. Allergies, sinusitis, the list goes on and on along with the numerous attempted diagnoses.
There is no definition for what she has. No doctor can really nail it down. The only thing we know is that it is an immune system dysfunction. The symptoms cover a wide range of possibilities and all potential paths that we can find have been followed. Even to the extent of psychological evaluation to see if "she's just a hypochondriac" as some simpletons like to believe. Those simpletons including some doctors who seem to blame the patient when she is female, has multiple symptoms and doesn't fit neatly into a pre-defined list of ailments. Don't get me started on the health insurance companies and the Social Security administration. They both do love their filing systems.
She has not been able to work in nearly 15 years. When last worked it was in a retail job that eventually ended in her termination because she couldn't maintain the schedule they required. She's still relatively young at 36 and incredibly intelligent, but she simply can't work because of her ailment. What makes it so difficult to find and retain work is the fact that she simply can't work any form a set schedule or be forced into deadlines. Both basically being primary aspects of every job of the planet.
She can't maintain the schedule because one day she may feel great and can tackle the world, but the next 3-4 she may not be able to get out of bed. Even on the days where she feels relatively good she may find that she can only work for an hour or two before her symptoms get the better of her. There aren't a whole lot of jobs out there for a person with no degree and no ability to maintain any form of work schedule. She can't even get up in the morning and say "Can I come in and work for 4 hours this afternoon?" because 2 hours later she may be unable to even get her shoes on.
Because of her inability to maintain any kind of consistent schedule she was unable to go to college despite the fact that she's incredibly intelligent and was an honor roll student in HS with very high ACT scores. So that puts her in an already challenged job market with no education, an inability to work a set schedule, and the inability to consistently provide work on a deadline based schedule. AKA...totally and hopelessly unemployed.
Now I ask you to think what that would do to you. It would be one thing if you were unfortunate enough to have a easily diagnosed/categorized disease that any doctor will recognize and the general populous understands and accepts. Try to survive with one that no one recognizes, no one accepts, no one understands, and no one is willing to help you with because the laziness of their minds forces them to just say that the problem is in the patient's head. We know from reading the stories how many veterans from the first Gulf War are treated when they speak of the symptoms some classify as Gulf War Syndrome. We know how it can impact the patient and the families when they are told over and over again that it's really just a mental problem and all the symptoms are just in your head. They too were stricken with something that was due to no fault of their own, yet the medical profession, the government they worked for and a large portion of society decided that because it couldn't be labeled easily, then it must be a mental issue. At lease those brave men and women can say they did something for their country. Though now it may not mean much as their country throws away as defective goods, at least they can say they had the bravery and patriotism to do what needed to be done.
Very few people understand the psychological implications of being put in a position like this. Most simply don't want to try, and society as a whole would rather just avoid acknowledgment of people like her (and them). It undercuts the belief that "you can do anything you set your mind to". It's easier to just ignore it because the thought of someone in her situation seems so hopeless...why would we want to think about that?
Well I do think about it. I think about it every day. I look at a brilliant woman in front of me who feels like the most worthless, helpless individual in the world because of the circumstance she finds herself in. There is no self worth in her any longer.
She can only watch as the bulk of our income is filtered through hospital and medical bills. She can only watch as I pay the bills each month and struggle to find ways to cover our basic needs. She can only watch as I, an uneducated IT worker, worries about the day when my job is "off-shored" to Mexico. She can only watch as the few friends she once had all fade away until she is left as she is now...with only her husband to care for her. She can only watch as her life becomes a perceived waste. A daily existence of solitude and worthlessness only interrupted by the few hours a day of attention she may receive from her husband. The psychological impact is obvious. A total and complete lack of self worth and a daily struggle to just continue the seemingly pointless task of just breathing.
In the capitalist society she was raised in and currently lives in she is considered a vagrant for all intent and purpose. No money. No ability to earn money. Not classified as disabled though because of a lack of specific categorization of her illness. No transportation. Nothing. Yet she knows she's no idiot. She has the potential in her mind to do something...but the outlet is seemingly non-existent.
We've tried every work from home program we can think of. (Most being a scam of some sort.) We've tried selling artwork, crafts, custom merchandise, you name it...anything to get a little but of money in to make her feel as if she's at least contributing something. We've sold a couple of shirts on the Internet over the last 5 years, and that's about it. Amounts so small that the vendors won't even issue a check for the pittance made. Nothing of substance and nothing that brings any kind of consistent income.
She tries to write when she can with the hope that it may bring something to her some day, but after 5 years with nothing to show, her hope is waning quickly. She's to the point where I can see it in her eyes. What is the point of it any more? What is the point of my continued existence?
So that's the essence of the situation and why I write today. My wife is essentially dying before my very eyes because she just can't see the point any longer. I know what she is capable of though and it tears me up. She could be an incredible research scientist or biologist because of her love of nature and a deep understanding of the sciences around it. (Her ability to digest terminology and pick up concepts just based on what she reads on the Internet boggles my mind.) But to get there she must find a way to get a degree that seems ridiculously out of reach. How can she even contemplate college when she can't even earn enough money to buy herself a book? Hell, a pen for that matter?
This all leads me to a final plea. Do you know of some sort of work she could do and at least make a little bit of money? Do you have paperwork or research work that you would like to get done, but don't have the time or the energy? Do you run a business and have a steady flow of work that needs to be done, but just piles up because you either don't have the time or it's so menial and boring that you can't bring yourself to do it and you'd hate to pawn it off on someone else? Do you have anything or know of any way that she could make some sort of small income in her situation?
I hate posting something like this here, but I do because this is a community that she lives in. She rarely if ever posts, but her stealth presence makes a significant impact in some of the participation lists on jotter's diaries. (What else does she have to look forward to other than the diaries she reads and recommends here?) Plus we've seen how so many lives are impacted for the better through this community...it just made sense to give this a shot.
If you know of something or someone that can help her situation, I ask that you post it in the comments or preferably send an email to "helpforher" at gmail dot com.
My apologies for this rambling mess of a diary, but I just had to do something to try and help her in some way. This was the only thing I haven't tried. I know our struggles still pale in comparison to what so many others go through every day. This country has soldiers dying every day in a war for one man's ego. Talk about feeling a lack of worth. Our situation is so comparatively petty when put up against what an American soldier and their family have to deal with today. Yet even so, I had to write this today.
I write this because as many of you have those you would do anything for, I too feel that way towards my wife. To see her as she is today is sometimes more than I can bare. Her existence is forever tied to mine and whatever I can do to make that existence more bearable for her is what I must do.
[EDIT: I'm completely blown away that such a diary made it to the rescue list. From the deepest depths of my heart I thank all of you for your kind words and advice. I just don't know what to say...this really is the greatest community I've ever had the honor of being a part of. Thank you all so much.]