The Kindness of Strangers

And God  
said "Let there be heat..."


Well,not exactly God,it was actually Wendy  from the gas company...but I cried anyway.


A little back story...

We're poor.We juggle and struggle with keeping the  bills paid,and this summer they turned the gas off,major annoyance, but the air conditioning was more important,so we heated water on the stove and struggled on.

And then the electric company got crazy...but that's another story..suffice it to say we couldn't manage the money to get the gas turned back on.

And the calendar pages kept turning,and the season changing.We were getting to the time of year when heat is important,and still we struggled.

I have made myself sick stressing about it.If I don't pay the electric bill and eat ramen,I can still only come up wit about two thirds of the money to get it turned back on.

Then on Monday I got a notification that some had used the PayPal button on my blog...and it was the final third of the amount.

Now,someone I had never met had us on their heart,and it was the amount that made it possible to turn the gas back on.

The  appointment was made.As the week went on it ho

got colder every day.

The appointment window was 12-2,and by the time the lovely Wendy got here it ,1:50,I was stressed to the max. True story...just as she got here IT STARTED SNOWING!!

Thirty minutes later,the lovely Wendy said "Let there be heat..." And there was,and I cried.

One problem down!!

Of course,nothing is easy,and naturally something else went wrong this week.The 5 year old Chromebook laptop finally died yesterday.The electric bill didn't get paid,the grocery budget no longer exists.

But those are miracles for another day. As my son would say,remind the universe we have PayPal.

But for today,we continue to be blessed by the kindness of strangers and We Have Heat!!

Peace and Blessings,
EB

Into The Darkness

I hate to whine,but I am not a fan of winter. The time change this past weekend has thrown me off.Now 5:00 in the afternoon feels like the middle of the night. 

 I think it is just a stressful time of year. We have entered the 'holiday' season. Since time began, humans have had celebrations during the winter season, and for good reason. When the winter is upon us, we sometimes need to be reminded that it will not always be dark and the light will return.

So here we are, just a couple of weeks from Thanksgiving, and we are already starting to see people running around getting stressed out and being rude and unkind to each other. It is not easy to remain calm when someone is rude, but if we are to reclaim civility and peace for our society, we have to start by reclaiming it in our own lives.

The holidays are hard for us sometimes, in that the reality often doesn't match up with our expectations. We want so much to create either the holidays of our memory or the holidays of Norman Rockwell's imagination. For those of us who don't have halcyon memories to draw on, we think we will make up for it by making sure our loved ones do. For those of us with great memories we compete with trying to accomplish all of those things in a different time. And so we are worn out, frazzled, frustrated.

I think the first place to start to reclaim some peace and tranquility at this time of year is to acknowledge that the Norman Rockwell holiday was a figment of Rockwell's imagination. I love Rockwell's work, but honestly those illustrations were just that- illustrations. Yes, I am sure that there are families and celebrations that look like that, but I am also sure that there are families that don't. So I think we have to allow ourselves to relax and to create what works for us. No more 'keeping up with the Joneses'!

Now my maiden name was Jones, so I have always found the thought of 'keeping up with the Joneses' absurd. Believe me, we weren't worth keeping up with. Holiday dinners at our house were fraught with difficulty.When all of the siblings and their families got together there were bound to be arguments, fights, and just general mayhem. I don't remember a time when everyone was speaking to each other, there was always some point of contention somewhere. One of the memories I laugh at was the year Thanksgiving dinner was at the home of one of my brothers instead of my parents. That brothers wife did not care for me (her loss) and she very cleverly made that known! I happen to have food allergies,in particular coconut and walnuts. On that table there was not one dish that did not include coconut or walnuts. NOT ONE! From the salads to the stuffing to the gravy, some form of coconut or walnut had been included in every recipe. Then she whined because I excused myself from the table without eating anything. My brother yelled at me that I was disrespecting his wife, and as I left the room my family started arguing. Just another family gathering at the Joneses!

So, as we start the countdown to the end of the year, my advice is to relax. All you can do is all you can do. Perhaps it is time to simplify anyway. As we encounter rude people who are stressing out, smile, perhaps say a little prayer that they will be blessed, and remain calm. That guy that just cut you off on the freeway, ask God to bless his life and keep him safe. That cranky neighbor, ask God to pour out blessing on her. That frazzled cashier, thank her for working hard and wish her a blessed day. Whatever you do, do not repay rudeness with rudeness. You only make yourself unhappy when you do that, and the truth is rude people are unhappy people, no need to add to their numbers.

Do yourself  a favor. Relax,enjoy. Do someone else a favor. Visit someone who doesn't get visitors very often.There are a lot of folks who are struggling--believe me, I know. As much as financial help is necessary--and appreciated--human contact is also a struggle.

This time of year is a natural time for remembering, the winter season is a time for reflection and renewal. Today, with the solstice upon us, we are reminded that there is a reason why most cultures, from our prehistoric ancestors until the present time have holy days and ceremonies at this time of year. The nights are long, and life has slowed down as the earth sleeps and rests for the growing that will come. We as human beings have always seemed to be more spiritual at this time of year. We have time to reflect, and time to share the stories of our lives and the lives of those who have come before us.We have time to be social, and so we honor this season with ritual, tradition, and ceremony.We have time to tell our stories.

As you go through this season, no matter your traditions, I hope that you will find time to share someone's stories. Take a few minutes to connect with a friend who is grieving, or an older relative, and just give them to opportunity to remember.If they cry, all that is needed is your hand on theirs. If they laugh, your laughter will naturally come to mingle.It may be the greatest gift they receive this year.
Peaceand Blessings,

EB


P.S. I dislike doing this but there is a paypal button over there,just in case. I told a friend once who was embarassed about asking forhelp that if wedon'tmakeour needs known how does anyone ever know wehaveneeds.The William and I are struggling,and just as embarassed I am pointing out the button.We are continually blessed.

 

November is RSD/CRPS awareness month

Awareness months seem commonplace these days, and so it can be easy to ignore them. Then of course, something hits home with you in a personal way, and you feel the need to be part of the awareness. As the parent of a young man with autism, I have written about autism awareness. This month, I am writing as a person with RSD.

What is RSD/CRPS you ask? Well, according to the National Organization of Rare Disorders "Reflex sympathetic dystrophy syndrome (RSDS), also known as complex regional pain syndrome(CRPS), is a rare disorder of the sympathetic nervous system that is characterized by chronic, severe pain. The sympathetic nervous system is that part of the autonomic nervous system that regulates involuntary functions of the body such as increasing heart rate, constricting blood vessels, and increasing blood pressure. Excessive or abnormal responses of portions of the sympathetic nervous system are thought to be responsible for the pain associated with reflex sympathetic dystrophy syndrome."

Now, this post is not to seek sympathy, but to increase awareness. So many live with what are sometimes called invisible diseases. It can be difficult for those who love us to come to terms with the fact that we are in pain. My late husband hated my pain more than I did. He felt completely helpless, not an easy thing for a loving spouse to feel. The first few years-I experienced my first symptoms in 2001 on our honeymoon-I felt a lot of guilt. Yes, guilt. It isn't easy knowing that family times and plans depend on how Mom is feeling that day.

It took a year before I found the doctors I rely on. Rare disorders are like that. Most doctors have limited knowledge of the disorder and even less knowledge of how to deal with it. I was misdiagnosed by several doctors. Really unfortunate because if diagnosed early there is a chance to stop the progression. I was progressed into phase 3 of 4 before I found the right doctors.Still, I was not finished with unknowing medical professionals. After I found my wonderful neurologist, who not only knew what was wrong with me, but knew how to help me, I had to change my primary care  physician. The one I had been using quite simply looked at the diagnosis from the neurologist and told me there was no such thing as RSD and that I was imagining it.

Now, RSD has been in the medical literature for 150 years. The name has changed through the years, in fact the name has changed since I developed it in 2001, but it has been written about since the Civil War. So, you can imagine how disheartening it was for a physician I trusted to look me in the eye and tell me I was imagining the most excruciating pain known to exist. He simply refused to continue treating me if I persisted in seeing my neurologist for treatment of the RSD. For me, this is underscores why  we need to have an RSD/CRPS awareness month.Even doctors need to be educated.

Twenty five years ago when I first started seeking answers for what was different about my son, it became obvious that educating people was going to be part of the equation. I had never met anyone dealing with autism, and so I found myself researching and studying so that I could educate family, friends, even the doctors and educators we were dealing with. Fast forward,and I am find the same need to educate when it comes to RSD. Luckily, we now have more avenues open to research, share information and connect with others doing the same thing. All too often when you are dealing with something you can feel isolated, as if you are the only person in the world who has to go through what you are going through. In this day of social networks and awareness months it is so good to know that there are others out there who understand.

While no two people have exactly the same experiences, it is always helpful to know that you are not alone. This disorder is not easy to live with. There is no cure, and as horrific as enduring the physical pain can be, the psychological and spiritual pain can be even worse. It is not easy being in pain, being treated badly by the medical establishment,misunderstood by friends and family, needing large doses of narcotics just to get through the day. It will wear you out. It isn't even easy to describe the pain you are feeling.OK, imagine that someone has set your nervous system on fire, is applying a cattle prod and attempting to shred the flesh from your bones with a giant meat fork, all at the same time. I told you it was hard to describe the pain that an RSD patient endures. NOW multiply what you imagine that might feel like by about 10,000.You might be getting an idea of the severity of the pain. Honestly, that is the best picture I can give you. Now imagine that the pain that is constant at about a 6-7 out of 10 can be spiked up to about a 12 out of 10 (I am not exaggerating) simply because the fabric of the skirt you are wearing was touched by a puff of wind. The pain colors every moment of your life. Every breath you take. Am I enjoying a sunset on my deck? What if the wind comes up, what if the fabric in this skirt is scratchy, what if I simply breathe deep and the pain flares? You have to think about these things,and learn to deal with them.

Of course, RSD is not the only disease/disorder that involves chronic pain, there are way too many. It just happens to be one of the diseases I have. There are an estimated 5 million people worldwide suffering from RSD.The reason I talk about RSD is so that other people can be encouraged to talk about what they are dealing with. It is my small way of saying that you can learn to manage your pain, and perhaps even to manage to have a life in spite of it.

You can learn to manage the pain with medication, good doctors, and with the meditation and breathing that you use for so many things.Some days you might be stuck in poor pitiful me mode, and that is OK.Life is hard and pain just multiplies the hard some days.

BUT, you are not alone.Even people who can't imagine the pain can sharetheir energies with  you...but you have to share your story so they will know you need them.

Peace and Blessings,

EB


p.s. I dislike doing this but there is a paypal button over there, just in case. I told a friend who was embarrassed about asking for help that if we don't make our needs known how does anyone ever know we have needs.Right now our needs include getting the gas turned back on. So, just as embarrassed, I am pointing out the button. Blessings.

Trying to remember to dance

It is more important than  ever to remind remind myself of this. I seem to have become very fragile lately.

Or maybe more people are just being rude and hateful out loud.

Not sure which it is,maye it is both, or maybe I am just thin skinned in my  old age. 

Now I am no stranger to being criticized, heck I do after all call my blog The Fat Lady Thinks, and before I was the Fat Lady I was The Fat Girl.We didn't have social media back then, in middle school they had to make do with slam books.

What is a slam book? Well,back when dinosaurs roamed the earth and I was in middle school the ones who thought they were the cool kids took a spiral notebook and passed it around, everyone adding an insult for the intended recipient.Once the pages were full of the kind of venom you find on social media these days the notebook would be slipped under the door of your locker, and you could read all about how ugly you were and how you didn't deserve to live in the same world as the cool kids.The technology has changed but the intent is still there. Make yourself feel superior by bullying and humiliating someone who fits your description of "other".

So,I have been aware of the ugly all of my life.But, honestly never let it hurt my feelings before,and lately it seems my feelings are fragile.How did that happen?

Maybe it is because the ugly seems to be more pervasive these days.People who wouldn't have dreamed of saying bigoted,or racist,or just downright mean things out loud now make signs and  rally together to attack others.  

Some days I think I must have fallen asleep and awakened in a different universe--or maybe I am just getting old and fragile.But everything just feels wrong most days lately.

My last blogpost was about someone using my circumstances to shame me, and the fact that I had to work through the feelings that it sadly brought up in me. So,naturally someone felt the need to reinforce some of those feelings a few days later. Damn people, knock it off.

I have no answers. I have no idea how we got back to the place where it is acceptable to be racist or sexist or ableist or homophobic. It felt for a while like we had moved past that ugly part of our cultural heritage. 

It is wrong.It has always been wrong.But, unfortunately, even people I care for and consider friends have become open about these types of feelings. Seemingly lovely people seem to be reveling in the fact that others aren't as deserving as they are.

Those who in time gone by would kill a man because of the color of his skin or his religion or  sexuality are still around. They are still killing people they may be doing it more slowly, taking away healthcare, or food benefits, but they are still killing people.

And honestly, most of us know this is wrong,we just don't know how to fix it.

There is no shame in being poor, or a different race or religion or sexuality. 

There has to be a way to stop this.I wish I knew how, because I am starting to feel beat down by all of this.

I am poor, my son and I are disabled, we have to rely on the kindness of others.The kind people outnumber the hateful people...so why are the hateful people so loud in my head?

It is possible to go through life without demonizing and  marginalizing others. It is possible, well, I used to think it was.

I have no answers. I just know I am feeling fragile, and wish I didn't.

So, like to woman in the illustration I must try remember when I danced.

It is hard when you are struggling with the day to day stresses of life sometimes to remember that you still have something to give back to the world, no matter how many people try to tell you you don't. It is all too easy to get wrapped in the struggles and forget that you weren't always old and poor and in pain. That your son wasn't always sick. That your bills were paid and you were the one who was able to help others.That  you lived in a country that was moving toward diversity not away from it.

It is all too easy too forget that even though life isn't what someone else considers acceptable it is still your life and you  matter.

So, I can't say I wont get my feelings hurt.

I will continue to worry and stress about the problems--mine and the world--like being out of money too soon this month.

But for today I am going to do my best to remember a time in my life when I danced.That while I can't dance any more that I still matter.

Me and lots of other folks.

I can be extremely stressed and extremely blessed at the same time.

I am multifaceted that way.


Peace and Blessings,
EB

p.s. there is a paypal button over there,just in case you feel led.My son and I are struggling, and there is no shame in admitting that.

Memo to my stalkery troll

Dear troll,


You came onto a message board over the weekend and I am embarrassed to say that your hateful hurtful attack on me managed to take up space in my head for a couple of days.I advised that it was not necessary to respond to you, and the conversation went forward. But then,in the wee hours as I tossed and turned you were in my head,and I felt shame over the situation you used to mock my developmentally disabled invalid son and our situation.

How embarrassing that I let you get in my head. You were not original in your cruel taunt, and yet were emblematic of the troublesome aspects of society that seek to punish those less fortunate or marginalized communities in our culture. You are merely symptomatic of a prevalent narrative that unfortunate circumstances or differences in beliefs or culture make some of us less worthy than you. 

You are not in the majority. Yes, you are part of a loud minority that is having some success right now in taking our culture down to its lowest common lack of humanity,but you really are outnumbered.

You have managed to elect some politicians that are playing to the basest hatreds among us which brings us to what you tried to shame me with.
Yes, I am in the embarrassing situation of living in a red state where the social safety net has been seriously eroded and I have used and may have to use again the gofundme platform. to help keep my son and I from falling even farther down the rabbit hole that leads to homelessness. I am unfortunately not alone,thousands and thousands of people are forced to use sources like gofundme to keep access to some basic needs such as healthcare, a roof over their head, and food on the table.

It is actually a bit of a paradox that you would choose to mock my son and I because we are in the position of needing help.Your politicians have done your bidding, and the social safety net is broken so like so many others we have been helped by caring friends and strangers.Are you so convinced that some people are so less than worthy that having made it impossible to find resources you begrudge them even  the support of others. That is just pure meanness.

Are you still reading...I bet you are,because you seemed to know a few details of my life, you must pay attention to me.

I let you get in my head, and I am feeling foolish about that. But, there is a stigma attached to being poor in this country. 

Not that it makes a difference to you, mostly just to remind myself that I have nothing to be ashamed of let me give you a quick summary of how I got here.

I have had a good life. A fair share of obstacles, a bigger share of blessings. I worked my way through college. Had a couple of successful careers and have been fortunate in many things.

I was a single mother of a special needs child who met and married a wonderful man.We worked hard and bought a house in the suburbs and were enjoying our little slice of the American Dream on our lower middle class rung of the ladder.You should appreciate this, we worked separate shifts so that one of us was always available for our son. No use of outside resources.
Life was good, one or two glitches like me developing a rare neurological disorder,but we worked hard and had good health care, so we moved forward with our hopes and dreams.

And Then life changed. In the blink of an eye.

My husband was killed by a drunk driver.So my son and I moved forward on our own again.

Then I fell at work and broke my shoulder. Surgery to fix that,but the night before I was scheduled to return to work I fell in my kitchen and broke my leg.During the rehab my neurological disorder worsened and I ended up in this wheelchair and couldn't go back to work.

We lost our house that my husband had been so proud of to foreclosure. So my son and I moved forward in an apartment.

But then my son got sick. Really really sick and we are now making the choices to juggle. Do we eat or does he get the medical supplies that medicaid won't cover.Do we get behind on the utilities to buy groceries. Choices that poor people all over our country are forced to make, and many like us live in places with broken safety nets and have to depend on help from others.

This is a humbling place to be in life, and still someone like you chooses to mock us. Are we just not dying quick enough for you.

So, yes you got in my head, and I should know better. Because even though I am struggling and behind on the bills, I have something you obviously lack in your place of privilege. I have worth and empathy and compassion.

One of my favorite authors said... 

"Empathy is really the opposite of spiritual meanness. It's the capacity to understand that every war is both won and lost. And that someone else's pain is as meaningful as your own."~~Barbara Kingsolver

Empathy goes many directions. When we lose the ability to empathize, we not only lose the ability to understand and share when people are having hard times, we lose the ability to be joyful when they are being blessed. And I think that, leads to what Barbara Kingsolver describes as spiritual meanness.

I am so sorry I let you get in my head. I know better. But, at least it gave me the opportunity to remember that I am blessed.

Yes, I may have to use gofundme again,but since I am fairly certain you are not the type to help anyone you deem less than, you really can refrain from mocking me for it. It is an uncomfortable place to be,but not nearly as uncomfortable as needing to anonymously lash out at someone.

So, even though I advised others to not respond to you, I am responding to the feelings in me.They kept me tossing and turning for a night or two, and they shouldn't have. 

I have used gofundme, there is a paypal button over there, and that is just where I am in life.

Peace and Blessings,

EB

Hello October

Dear October, please realize that September was just a meanie that hung around way too long and kicked our butts and we would like you to be especially nice to make up for it.



October? already? How did that happen? the end of summer. Good. Summer has been a bitch lately. In fact, it would not hurt my feelings if we just struck August and September from the calendar. They are hard months, the last couple of years.


September was hard,the computer is not working well,so I haven't been able to keep up with friends--I haven't been able to get onto facebook or blogspot,or any pages that required a password. Parts of the keyboard stopped working,and most of my passwords use letters from that side of the keyboard. But I have finally managed to make new passwords--and am actually pleased to note that many pages make that a difficult process--and for the first time ever am letting the computer keep the passwords for me.Typing is slow,I have to copy and paste some letters and numbers.Sigh...it is always something.



September was another month I ran out of money and had to tell my son we couldn't buy groceries because he needed medical supplies. But, he's a trouper, this is how that kind of conversation goes...



Me: It's hard the last week of the months some months. Sometimes it seems like it takes a while for the universe to provide.



Son: Did you tell the universe we have paypal?



Hey, you can get through anything when your kid makes you smile! We call these snippets of conversation Williamisms.



Being poor is hard work sometimes. No matter what anyone tells you (and I try to not pay attention) poor folks are not living like kings. We are managing as best we can, and we are scared to death most weeks that there will be an emergency. When something breaks, we learn to live without it. When the computer that is your lifeline to the outside world is on its last leg you hold your breath every day. Because that is what poor people do. We just tighten our belts until there is no more space for new notches.



But, it's OK, because there are far more important things in life than things and there are always reasons to smile.



So, even though we all struggle, there are always moments to share. The important things in life are always available. A son with a quick wit is everything.



So, bring it on October. Even if we have to choose whether to buy groceries or pay bills, even if we have to lay hands on the computer and pray it keeps going, we will always be able to find something to make us smile.



"The only way to get through life is to laugh your way through it.You either have to laugh or cry. I prefer to laugh. Crying gives me a headache."~~Marjorie Pay Hinckley.



So, C'mon October! I am ready, I will greet you with a laugh and a smile.Be nice, because September just needs to leave, it's not nearly as lovely as you are.





Peace and Blessings,

EB




p.s. I dislike doing this but there is a paypal button over there, just in case. I told a friend who was embarrassed about asking for help that if we don't make our needs known how does anyone ever know we have needs. So, just as embarrassed, I am pointing out the button. Blessings.

Alway Say I Love You

Today is a hard day for me. I went to bed on August 22 married to  a great husband and father, and woke up on August 23 his widow. The grieving process seems to be taking me a very long time-but as my therapist says it takes as long as it takes. Part of the problem is that so much else has gone wrong in my life since my husband was killed, but that is a subject for other days.

Today, I will grieve, but I will also know that I am surrounded by the love and caring and support of family and friends and even a few strangers. Today, in the midst of my grief I will temper the sadness with remembering the good, sharing the blessings.One of the most difficult parts of being a widow, is that there is no one to talk to in the middle of the night. Mr. Bill and used to talk to each other for hours at a time. We were very much blessed by being very much in love, but we also genuinely liked each other.

One of the things that made our marriage good was that we talked to each other. If I were giving advice to those getting married it would be to set aside time every day-no matter how busy or hectic your life can get-to talk to each other.Talk about your life, talk about your dreams, talk about the weather-but talk to each other.The other advice I would give is never end a conversation without saying I love you.

Now, I know that sounds a bit contrived, but Mr. Bill and I never regretted making it a rule for our life. Believe me, many,many minor disagreements were settled with just those 3 words. Major disagreements brought into focus, routine conversations made sweeter.It was such a habit for us, that if a phone conversation ended without it being said, we immediately called back.It was a habit that we extended to our conversations with our son-much to his chagrin sometimes. But, hey, isn't it a parents job to make their teenage son squirm?

But doesn't constantly saying I love you trivialize the sentiment? Doesn't it change the 3 most important words in the language into something less meaningful when it simply becomes a habit? My answer is HOW? How can you ever make love not meaningful. I grew up in a home where the words I love you didn't exist, and when I finally found love I knew never to take it for granted. Never. I remember the first I knew what love truly was, and the overwhelming sensation that enveloped me. Not something I would ever be able to take for granted. That was one of the reasons Mr. Bill and I made it a habit to always say I love you, we knew that love was so important that we must never take it for granted.

On that August 22nd, Mr. Bill had started a new job, and we worked different schedules that day. He called me from his new job on every break. That was another one of our habits, we called each other on our breaks. That night, I was at home,and he called me on his breaks and lunch. The last time we spoke was about 11:00 pm. He told me he would be working until about 2:00am, and for me to not wait up. "Take your medicine and go to bed," he said, "you'll  wake up when I get home.I love you." My answer was "OK, wake me up so I can hear about your new job. I love you." I took my medicine and went to bed.

My husband coming home from work wasn't what woke me in the early hours of August 23rd. A Highway Patrolman knocking on  our door to inform me that my husband had been killed by a drunk driver on his way home from that new job is what woke me.While I will never forget that moment when I opened the door and what that highway Patrolman said to me, the more important thing is I will never, NEVER forget that the very last words my husband heard from me,and that I heard from my husband were I LOVE YOU.

Always tell those you love that you love them. Never let a conversation end without reinforcing that.Life can change in the blink of an eye, and if you didn't say it you may not have another opportunity. Make it a habit, make it meaningful, never ever take love for granted.

Always say I love you.

Peace and Blessings,

EB




P.S. I dislike doing this but there is a paypal button over there,just in case. I told a friend once who was embarrassed about asking for help that if we don't make our needs known how does anyone ever know we have needs.The William and I are struggling,and just as embarrassed I am pointing out the button.We are continually blessed.