Once again I saw another human at the end of their rope because a friend, loved one, co-worker or any other allegedly sentient being on the planet did a number on them about their fibromyalgia.
The stories are always the same… “you’re an attention seeker”, “you’re lazy and trying to get out of _____”, “it’s not really *a thing*, it’s just lazy doctors who want to dump people in a pile when they don’t want to find out what’s *really* wrong with you – or – there’s nothing wrong with you, everyone feels that way from time to time.”
Speaking on behalf of our brothers and sisters, here and across the globe. Our pain and symptoms are very real, regardless if you “buy it” or not. We do not need you to be patronizing, to offer us lip service, telling us what *you think* we want to hear, or have you be downright defiant and dismissive of what we are going through by claiming it to be “all in your head”, or that it’s a “b*llsh*t excuse the doctors use when they don’t know what’s wrong. To some degree. that last one is correct.
Doctors used to write off symptoms that they could not find the root cause, lumping them in a pile named fibromyalgia. As a result, what’s happened is that someone finally noticed similarities in all of the patients’ symptoms in that pile. After that, they started recognizing that this is a real, somewhat treatable, currently incurable disease/condition. It is unknown as to whether the cause of the symptoms are in the nerves or if it is in an area of the brain sending wrong signals which cause our symptoms or environmental sources. I’m inclined to believe it is the latter two, but I don’t know any more than anyone else.
Why are some people allergic to something and some else, even in their own family sometimes, are able to binge on. I was born with several health problems including a severe intolerance to lactose and in those days (no old jokes please) there weren’t the options that there are now. My sister came along 5 years later, spent 3-4 days a week in the hospital under an oxygen tent. Once they were afraid that her heart could wind up damaged from all the epinephrine they were giving her, they finally agreed to allergy testing.
Out of the 204 things that she was tested for, thankfully she was *only* allergic to… 196 of them. Only… sheesh. And guess what, none of ours overlapped and still haven’t. I have spinal diseases, she had cancer, She’s allergic to morphine and it doesn’t even work for me. The list of differences goes on an on. The same is true for fibro, we’re all alike, and we’re all different.
I read somewhere that fibro can be caused by a traumatic experience where you got hurt. For me that makes total sense, that’s when mine reared its ugly head, but you could put 200 people in a room and only perhaps 7% of us would be able to point to it as when fibro walked into our lives like a person you can’t stand who now won’t leave your house.
Personally, I think we’re all f*cked to some degree because we are all members of what I refer to as the Pop-Tart generation. So many things were not on the landscape until the 60’s with the ‘fortified with vitamins and minerals”, why did it need to be fortified in the first place? Pop-Tarts were fortified with 5 vitamins when they started and now it’s 16 and calcium and fiber? Why was Tang nutritionally better than orange juice? Cold cereal was introduced, prior to this it was oatmeal, Cream-of-Wheat or grits, and we all know what the ingredient list looks like on the side of the box of cereal. We started running public water to more families, fluoridated of course. Our bodies have been beaten like a bad boxer with no end in sight.
We need acceptance, acknowledgment, better treatment, and a hope for a cure. Empathy and the willingness to take us our word for it won’t cost you a thing; much like manners, this is free to use and available 24/7 if you choose.
“You never really understand a person until you consider things from his point of view” ~ Harper Lee, American Author
I was beside myself today when I saw a news story today about a lawmaker in Hawaii and his “remedy” for solving the homeless situation. If you haven’t seen the story, here it is. I had to say my piece, so here it is. Do with it what you will.
**WARNING** This post is a bit graphic and not of my usual lighter fare. It is my story just the same and I feel the need to tell it.
For those of you who were alive, aware and observant back in the late 80’s-early 90’s, please bear with me as I rehash some not so pleasant American history. For those of you who weren’t, here’s what happened. Due to an economic crisis (not discussing the politics of it, just discussing the issue), there was homelessness explosion, the likes of which had not been seen in this country since the Great Depression.
People were not only living in shelters (which didn’t accommodate the suddenly increased homeless population) but they were also living on the streets, in doorways, in parks, in their cars (if they still had one), living under bridges, just to name a few. Much more so than there is now, however the homeless population in this country has greatly increased in the past few years and is not showing a decline anytime soon unfortunately.
Americans also lacked a lot of empathy for the folks that found themselves as part of this booming demographic. Imagine any negative expletive you can think of and it was probably not only said to homeless people, but also by homeless people who were overwhelmed and consumed by their dilemma. Nothing like being kicked when you’re down.
I was acutely aware of this situation because for a brief time, I was one of them.
My husband hit me; when I left he threatened to stalk and kill me. I didn’t know where to go that he wouldn’t be able to find me nor did I want to put any friends or family in harms way. A male friend was leaving for Colorado and offered to take me along with him if I was willing to drive. I had a car, he didn’t. It was a knee-jerk plan, but it was all I had and I was trying to stay safe.
We moved in with his Brother, who was stationed at Fort Carson, along with his Sister-in-law and their two young children, just off post. My friend (a mechanic) couldn’t find work and I could only find a part time job as a waitress. We were selling off what we could to help out as best as we could. Then the landlord threatened to evict everyone including their kids (20 months & 9 months old) if we didn’t leave since we weren’t on the lease. We left immediately.
After that we would visit sparingly; just long enough to take showers or do a load of laundry. We went to apply for food stamps and was told we couldn’t get benefits without a mailing address (I put down my license plate number). We were asked many questions and I was told that we looked “too clean” to be living in a car, so we would have to wait for emergency assistance. I was going out that day looking for a second job, that’s why I looked so clean.
When your worldly “wealth” is contained in a car, a tent, a backpack or a shopping cart… well, I can tell you, it’s not anyone’s idea of a good time. I now found myself living with (and being the sole support) of a guy I was really wanting to distance myself from and living in my car in the mountains of Colorado in the beginning of November. I will say the view was breathtaking but the cold was unlike anything I’d ever experienced. I had taken what I could grab and left most of it behind to get away from my husband, and now I’d sold most of what was left. There was no money to buy food most days, forget camping equipment. The snow was starting to fall and it was cold. We were driving into town to clean up at the gas station.
We were visiting his family one evening trying to warm up when we saw something on the news about the local shelter filling up because of the cold. We went back to the car and up into the mountains. The next day we headed straight for a coffee shop to find the yellow pages so we could find out where it was.
We got to the shelter in the evening after I finished my shift… just before lock down. No admittance after 9 pm without a pass. It was a warehouse divided in two; one side for women and families, the other side for single men. No stalls in the restrooms, just a row of toilets and showers that were open and across from the door, much like the showers in gym class. Some of the men would stand outside the bathroom door trying to see what they could.
On the nights that I wasn’t working, we all hung out in the common room. We played cards, mostly spades, although there were a couple of Canasta tables set up and one pinochle table set up for the old timers. There was a very gifted tattoo artist that would offer his services for cash or cigarettes; he had a homemade tattoo gun and used the oil rag from his car to wipe the blood away as he worked. We watched the news every night and saw stories of homeless people on the streets being beaten up for sport and some that had even been set on fire. These stories were becoming more and more frequent as time went on. While we weren’t in the best situation, we were thankful that we hadn’t dealt with that.
From time to time, someone would come around with a truck and talk of work in Texas or Oklahoma. They would load guys up in a truck and take them for a “guaranteed” week’s work for $300 plus room and board and a return trip back. We would never see those guys again. We would speculate if they moved on, stayed there working or if they had suffered some horrible fate. We tried not to think about that.
We became a bit of a family, most of us at least, and we looked out for each other. Tried to at least. There was a couple there with a daughter about 6. I remember originally thinking that the man was her father; it turned out that he was her husband. He had suffered a stroke and it aged him terribly and left him incapable of working. She had always been a housewife and after his stroke, the medical bills left them in financial ruin. They were waiting to get Social Security disability, but you have to be off work for a year before you can even apply. She had few skills but managed to get a job a McDonald’s. She liked it well enough and everyone took turns keeping an eye on her husband and daughter for her when she was at work. She didn’t come back one night even though she had a pass. We found out two days later that while she was walking home from work she had been jumped – beaten, raped and robbed. They got her paycheck and her wallet so she was unidentifiable. It wasn’t until she was finally able to talk to detectives that they were able to alert her husband and daughter. A church put them up in an apartment while she healed and they were finally able to get assistance since they were out of the shelter.
The shelter falsely reported to the state that they were serving “three hots & a cot”, meaning three hot meals and a bed for the night. Instead it was cold cereal & coffee for breakfast, no lunch, and dinner was epicurean delights like cheese sandwiches, tuna sandwiches, cottage cheese or spam salad sandwiches (yes it was gross, even if you like spam). A large can of peanut butter and another large can of grape jelly sat out at all times, along with loaves of stale bread, for those who needed to pack lunches or those who couldn’t (or wouldn’t) eat what was being served.
There was a soup kitchen that served lunch until they ran out of food, so you had to line up early. It wasn’t the most tasty, but it was food. Some days, we just had bread & butter and coffee because the “soup” was inedible. My last meal ever at the soup kitchen was cream of corned beef, lima bean and elbow macaroni soup. It’s a meal that will burn in my memory till I die.
On the few nights that I worked past curfew, I had to have a pass ahead of time to be admitted by the security guard after hours or I would have had to sleep in my car. A few of the guards were a bit “hands on” with the women, so we tried to pair up as much as we could to keep from getting cornered alone.
Due to the false reports to the state about meals provided, if you lived in the shelter you could not receive food stamps. As a result, many people chose to live outdoors.. mostly under bridges, just so they could eat decent food. I was later approached, along with several others, to submit depositions regarding the conditions. From my understanding, there were numerous charges that resulted.
At the time that this all took place I was 20 years old. I averaged about 140 pounds in my normal life prior to this “adventure” and was fairly athletic. I first moved into the shelter in late November. I steadily lost weight and in January caught pneumonia. In the midst of all this, I met a fairly descent guy who vowed to take care of me and get me back to my family. When I walked into my parents home in late February I was feeling much better and had put some weight back on. I was 93 pounds. I should mention that I’m 5’7″.
I’m not asking for sympathy or empathy. I offer my story as insight. A window into a world that you may be unfamiliar with. Some have fared better, many have fared much worse. While this wasn’t a great experience, it was an amazing teacher. It was also a gift of honesty that most people are never rewarded with. I knew with all my heart that my friends liked me just for me, not because of what I could do for them or what they could get from me. I had nothing other than friendship to give and that’s all they could offer in return. To this day I smile when I think of those few months for that very gift. There are people that go a lifetime and never experience the honesty of the relationships I enjoyed. I consider myself blessed.
Remember that mine is not an exception to the rule… there are no rules when it comes to being homeless. It doesn’t matter how you get there, just that you’re there and it’s so hard to come back from it.
Fast forward to today. It was only a few short months ago when the governor of Hawaii came up with the offer for one way plane tickets to the mainland to deport the homeless from his state. Today the story becomes exponentially heartless with the story I referred to at the beginning of this post. It highlights a lawmaker whose answer to remedying the homeless population is by taking away their shopping carts. Let me say that again… taking away their shopping carts. Those that can be returned to stores are being returned and those that can’t he’s smashing with a sledgehammer.
I’ll let you have a minute. I know I needed one.
Hawaii, if you’re unfamiliar, has low unemployment yet high poverty and homelessness. Take a lookhere to get a taste of Hawaii’s homeless problem. I assure you, it’s only paradise for the tourists. Most people are working two and three jobs, just to live paycheck to paycheck due to the high cost of living. I was blessed to visit there in 2004 and the number of homeless people sleeping on the beaches was heart breaking. At that time of our visit, the cost of a gallon of milk or a loaf of bread was $5.00. Everything is shipped over from the mainland and the costs are astronomical.
I was one of nine people in our party and we rented a house for the week to save costs over hotels and so that we could cook our meals rather than eating out constantly. The first night we arrived we went to the grocery store and bought enough supplies for dinner that night, breakfast the next morning and a case of beer. The total came to $180. The next day my daughter and I drove to the other side of the island. We found the “poor areas” and did our shopping there. I purchased food for the remainder of the week. What was left at the end of the week we took to the beach to feed the homeless living there.
How is vandalism, much less the targeted vandalism of a group that are already so down on their luck going to eradicate their situation? How does this solve anything? And what kind of message is this guy sending? That it’s okay to take from those who have almost nothing left??
Now I know that there are many people that have given homeless people a “bad reputation”. Sure there are the scam artists and swindlers out there, but those types of people reside in all levels of society… even on Wall Street.
I ask you to take a moment of pause to think of what you would do if you found yourself in a similar situation. Human beings still deserve dignity, respect, kindness and caring. Help if you can, and if you can’t, just being kind about it and aware helps. I hope that everyone reading this can either help those that need it or get the help you may need… especially approaching this holiday season. Teach your children compassion instead of condemnation and empathy rather than contempt.
Lastly, regardless of your political views or affiliations please pass the message on that our fellow man should not be treated this way. We’re in this together after all.