Not Dead Yet (The Brief Announcement of my most recent disappearance from the world.)

death_oldwoodcutNot Dead Yet    (The Not So Brief Announcement Of My Most Recent Disappearance From The World, And The Adventures That Occurred.)

By Brenda Ann Eckels, aMGC


Anytime I vanish from my online community,, or from my blog,, Twitter, Google+, or any other of the various social media channels I habit, for the first several days no one notices. Practically all the Facebook friends I have, whether I know then in real life or not, know that I am seriously disabled with multiple sclerosis and a host of other problems.

I always imagine then that it takes at least a week for anyone to sit up anvictorian_telephone1d say “Hey, where is that half nun writer with all the opinions that make Republicans shudder and the ability to throw out questions on Catholic life that start entire pages long discussions?” A few might, and do, then send me private messages, emails, or if they know it, call or text me.

soundthealarmDisappear for going on three weeks? Then things get serious. Distant family wonder whether to cash in life insurance policies, close friends decide to call hospitals, and finding I am not at any of the ones nearby, begin pelting me with private messages along the lines of “Where are you? Are you ok?”, and my boss at Convergent Streams adds “find Brenda” to his 22 item code green To Do list (his church, his wife Dana, and his kids get all the code yellow and code reds).

A few really, really close friends (consisting of those who were standing nearby, propping us up in the hurricane that hit our lives last year from August to October) basically make one last effort to get me on the phone, and then just show up.

And this time was not much different than the others. I not only got sick, I got hit with an extraordinary amount of unpacking and sorting of over 125 boxes that arrived from storage the same day my furniture from a wonderful charity called Operations Blessings did.

Soon, I was dragging my wheelchair from box to box, desperately trying to find the things one needs to live with like pots, pans, dishes, clothing, shoes, and bathroom towels. I have yet to find my measuring cups.

In between this unpacking, I discovered even more boxes packed in the most malicious manner by those who assaulted, harassed, and slandered me (and Brian and Jamie) last year. Each one of those was like a sucker punch to the gut, making me once again feel that queasy fear that if my mere possessions could be handled so roughly, what might happen if I unwittingly bumped into one of them at Walmart?

In some ways, the boxes Brian had packed were worse emotionally – every box carefully labeled, sometimes in 2 inch high letters on multiple sides, the contents inside swaddled like tiny babies in newspaper, cloth, bubble wrap. He was so sick…his thyroid goiter alone made him look like he had a spare tire under his neck, and so much else was wrong. The dichotomy of how the boxes he packed had been done with so much care and attention, where the others had been treated as if my precious things were nothing but rancid garbage brought me to tears or my knees in prayer or both many a night.

Then of course, there were the boxes, bags, and totes from what should have been the happiest day of our lives – our wedding day August 16, 2014.

So, you can imagine me, a year later, still waiting for explanations and apologies, trying to start over in a new apartment, sick, sore, exhausted, wheeling to an unlabeled box or tote, terrified of whether it would hold:

  • a happy memory,
  • more of items damaged beyond use,
  • or a memory of incredible pain

Pretty much everything you see here from mouth and tongue to bowel and bladder has something wrong with it. This is what my insides will look like if I fail to keep my weight, proteins, and other nutrients up and have to have a g-tube put in to eat ensure the rest of my life.

I was doing this mostly alone,  while at the same time barely able to eat from gastroperesis in my stomach, heartburn in my throat, and IBS symptoms in my intestine causing pain in my throat, stomach and colon. At times I was literally bent over double as pain from uterine break though bleeding escaping my broken and prolapsed uterus, and the vertigo and dizzy spells of MS were aggravated by the anemia I had been battling since March took their toll. The pain “cocktail” that would allow me, Cinderella like, to walk and lift and move for up to 48 hours (albeit with braces on many parts of my body) had the most awful symptoms when they wore off, leaving me a prisoner in the bathroom for hours.

Except for my case manager, my friend Niki, Niki and her husband Mike and whatever kids they could scrounge up, my adoptive parents Ma and Dad Johnson, or Brian, I was by and large alone.

A government glitch meant that my chronic health care had been caught in the bureaucratic machine. I have had a case manager, a weekly home care nurse, and from 10 to 17 hours a week of personal care attendants or LNA’s since 2006 until the final brutal threats, lies, and institutional assaults against us in October 2014 to help keep me as healthy and active as possible. When I lost those supports, I nearly lost my life more than once, and I have lost track of how many hospital trips I had in addition to the 2 ½ day stay in the cardiac unit.

For 7 years, I had all kinds of personal care, nursing, and professional help. I had a large circle of friends and my bio family was not yet emigrated to California.

This time, My bio family is mostly either in California or scattered to the wind, my finances are ruined, my health is in shambles, the supports are missing, and I don’t even have a reliable car.  

My case manager, though a separate agency from the chronic illness program, is amazing and drives me to appointments when I need to because I can’t afford the para transit van for wheelchair users for all of them. She has helped me sort boxes, take out trash, and keep at least some semblance of a schedule. But her caseload is huge.

There is no nurse, and while I try my best I frequently make mistakes trying to fill my complicated planners.

There are no aides to help relive some of the burden, or at least prompt me that it is time to eat, to cook for me, or to shower me. Except for Niki and Brian to help with showers and so on, it is just me. Brian tries his best to make sure I get a shower at least once a week.

So for day after day, I would drag myself out of bed, into the chair, and take my temp. If it was under 100 degrees, I checked how bad the bleeding was. As long as I was not soaking blood through a depends within 2 hours, I went to work.

I worked on unpacking, sorting, putting things away, and trying to make sure there was a path to the patio door. Every other place I had lived, your first floor bedroom window counted as your second egress in the case of fire. It was one of my worst mistakes that I hadn’t double checked, as the type of development I joined requires there be two doors available – and I had stacked a month’s worth of boxes in the way of door #2.

This is one of the official engagement photos, a glimpse of who Brian and I were before the final attacks against us in the week prior to and the day of August 16th.

This is one of the official engagement photos, a glimpse of who Brian and I were before the final attacks against us in the week prior to and the day of August 16th. At the time, I was suffering sleep deprivation and exhaustion, but was walking without a cane and was on a very moderate program for pain control. I also still could smile with an open mouth as I still had all my front teeth. One reason I avoid being photographed now.

The first bad night was when I opened a tote and found myself staring at the “I her Mr” and “I’m his Mrs” signs that had decorated our places at the head table. I cried there curled up in a ball on the floor for hours. I am not sure when, but somewhere after midnight I finally got the strength to get back in my chair and wheel into the bedroom, collapsing on the bed with Booker. I suddenly realized I had cried right through his dinner time. All I could offer him that night was peanut butter crackers I had in my nightstand. He seemed to understand, and curled up against my aching cold knees instead of at my feet.

Another bad night was when my temp was 99.9, my body alternating between freezing and sweats, and the blood soaked depends needing to be changed every 3 hours. The pain was indescribable. But the next day was an inspection of units. I kept cleaning, being too weak to unpack any boxes. (I passed by the way, although they had to shut off the water to part of the development for half a day.)

The best day was when I opened up a random box and discovered the Laura doll my mother had made for me when I was a child.  Originally, none of the wedding attendants were going to carry flowers.  Instead each was going to carry one of the 41 dolls in my collection, all of which had great personal meaning to me.  We had torn the cabin apart trying to find Laura, and had only found one of the dresses from her wardrobe.  I had thought she was lost forever.  Now she sits proudly on the quilt rack my Grandpa Watts made right over me as I sleep.

By October 1st I was covered in the yellow, green, and newer blue bruises from trying to walk and list, carry, unpack, move, hang things up, and all the rest of the parts of setting up an apartment entails.  I had suffered four borderline bowel impactions which I had to treat at home, alone.

This past Saturday, Mike and Niki had not only gotten my business phone working and my desk organized, Mike had fixed my speakers on my pc, and had gotten my backup drive running. He gave a great try to get one of the two printers I own working, but wasn’t able to. He did however help me move 5 big totes and boxes to my storage unit I rent in another town. Niki sat and unraveled and organized one entire large tote of wires, putting the useful ones together, and the tossing the broken ones.

Sunday night…maybe about 4:30pm, I was walking (against doctor’s orders) trying to lean on and push my wheelchair with a basket and bag of laundry to take and put in the washer in the laundry/mail room in another part of the building.

I never made it too the door. The fatigue hit me suddenly, along with a dizzy spell and another attack of uncontrollable burping, my knees buckled, and down to the floor I went. It surprised me, because I had slowed down enough I wasn’t having the breakthrough bleeding anymore, and a recent CBC had showed the anemia now under control. Why can’t I stand up? I wondered.


In addition to the things broken inside me, and the things wrong caused by MS, these areas have been in various levels of constant pain inside sometime in the early 1990’s. In 1995, after escaping a brutally violent first marriage, I was diagnosed with Fibromyalgia.

I didn’t even have my cell phone with me, and that same bureaucratic snafu that had some how held up my hone care had also held up my life alert button. I curled up on the cold floor of my entry hall and cried myself to sleep. Honestly, I think it was just exhaustion. The week before I had told my case manager “I can’t keep up this pace. You can only push a mule and work it so hard and it just collapses. I have trouble getting up, I fall asleep during the day if I sit down and don’t keep pushing and working. Is there are word on when my aides will get set up?”

Sunday night, when I finally awoke, I was able to drag the basket and bag off the wheel chair, and to wheel myself to bed. My bills for the month lay half finished on my desk. I felt like my entire body weighed three times what it really does.

I recognized that feeling. It is Fibromyalgia, the feeling you have just run a marathon, all your muscles feel overstretched, pressure points hurt, and you are fatigued beyond belief.

The bills I didn’t finish included the net 10 cell card, and overnight my service was shut off.

By Monday October 5th, Niki had come once, Brian had come with them the day we had the van, and Niki and Mike came this past weekend. Brian had come Monday to do housekeeping, laundry, and shower me, and had come Tuesday to help me get to an appointment. The place was looking more like a home, less like a dirty storage unit.  I was able each day someone came to rest in the wheelchair or the bed at least a little. However, my body was loudly crying “uncle.”

Brian went to call me in the morning, and when he got the message my phone was disconnected, he knew something had gone very very wrong. He was my Personal Care Support Professional, you know..  Even though he had lived with and managed disabilities since birth. His time as my PCSP was way back in our story, before his doctor had told him it was time to stop working part time and apply for SSDI in December 2011.

A_Knight_totherescueThat same morning, Brian decided to just drive down and find out what was going on. He found me, exhausted, still in bed, obviously having not had more than a wash up for days. He found stacks of laundry, piles of dishes, and boxes and totes with labels saying “needs to go in outside storage” “need to sort this” along with my planner with 10 other “To Do’s” while I could barely lift my head off the pillow.

Just like Mike and Niki had done Saturday, he was another of my knights in shining amour.  He cleaned and sorted, like they had done. He did laundry, and cooked me lunch, bringing it to me in bed. Just like Niki had two weeks earlier, he went through boxes and got the items sorted into what rooms they belonged in, and then wheeled me from room to room asking me where this went or that went. By the early evening he had helped me get dressed, and taken me to the credit union, and helped me get one more bill paid.

Also on Monday, Brian played with Booker, and made sure I got into bed early. Yesterday, Tuesday October 6, 2015, Brian helped me on and off the para transit van, on and off the bus, and after my doctor appointment, the reverse, making a 5 ½ hour day to a specialist much easier to manage. He got called away by an emergency, but left me with enough energy to do some light putting away for about 30 minutes before I got into bed to rest and write most of this entry.

None of the three during the times they were here were able to do much about my appetite. Ma and Dad ohnson somehow get me to eat more, but I had no way to get to them, or them to me the past two weeks.  The other help I have gotten from all of them and my case manager has been invaluable.

I tried to work on things today, after sleeping from exhaustion until 11:30am.  I took the Cinderella cocktail, strapped on my braces, and went to work.  I made lemon almond bran breakfast bars, which Booker loved.  Trying to lift the top of the hutch back on the base, about 2:30, my brace encased knee, and then my brace encased shoulder gave out, and I fell, hitting my shoulder in the process.

I am done.  While the floor is strewn with tools, the dishes are not all finished, and the floor never got mopped, I am bed bound now except for about 20 minutes tonight I made Booker dinner, and got myself a drink.  It is 4pm, and I am still in too much pain to sleep, but  it seems to be better.  I finished the edits to this post and added today’s events.  (I had written it yesterday.) I scheduled it to post overnight.

Will I finish everything the landlord wants done by Friday AM?

I doubt it.

I will try my best.

Brian is going to try to come back on Thursday afternoon.

A new agency with professional organizers is giving me a quote for services on Thursday, and might have some last minute tips.

In short I will do my best, and take what help I can get.

But I will not push so hard again that I start bleeding or I collapse.

Even if it costs me this place, which I like very much, I am going to start right now resting more, staying on bed rest as much as possible, and somehow it will have to be enough, because I have very little energy and ability to give.

I will be back on Facebook, Messenger, Google Plus, Good Reads, and all the social media channels I write for or run as soon as I can. But first I need a few more days for me to rest.

In the meantime, please say a prayer for me, and if you can contribute to my fundraiser at so I can get a smart-phone with a big screen to accommodate my MS related vision problems and also use the medical tracking apps that were on my now battery-less tablet.

Yes, I can still use the 4 year old heavy laptop to read email, but a lot of the medical tracking software is Android only, and Text messaging is getting quite hard on my eyes, especially since the handset I have has a 4″ cracked screen.

For those folks from family to Facebook friends who have sent messages,  thank you for caring ,for praying for me, my medical team and Case Manager, my volunteer caregivers Ma and Dad Johnson, Mike, Niki  & their family and school aged friends, and for Brian. I am very grateful for the messages and prayers, even if too exhausted to write back.

It is Wednesday 5pm. I have to sleep. This will post sometime this week, I hope, and let everyone know that although I suffer and battle…


To see more by this artist, click on the picture. (c)

I survive still. God is with us…

my favorite prayer being the Glory Be: 

Glory Be To The Father God, The Son Jesus, and the Holy Spirit. 

As it was from the beginning, is now, and ever shall be, world without end.


The Divine is in the air we breathe and the people in our lives.

The Divine is within us, and in the person of Jesus Christ, he is strong enough to carry our battered bodies when we can’t stand.

Take care,


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Phone Calls and Automobiles

Last Weekend In August, 2015


a call from a friend can make a cold bed rest day just so much better!

You know who you are, and yeah I can’t wait until we are both healthy enough to get together too!victorian_telephone1

On a sadder note, I think my indoor thermometer is broken. It says 70…but feels more like 50, except twice when I wheeled to the kitchen. Those two times it felt like it was 85 in there. I have checked the ovens, the burners, and yep, both are off.

Now trying to find thermometer. Did my coldness come from anemia and relief from menopausal hot flashes, or do I have an infection somewhere I don’t really have feeling and I have a fever? The joys of having multiple disabilities.

Hopefully it is nothing.These are the kind of things that occupy a mind of a home bound diasabled person as soon as the phone call is over.

And while I was glad to hear from that friend, I am praying earnestly for one I didn’t talk to today.

My best friend, who has been so sick, has now had a preexisting problem with his left foot become much worse, and who has a condition that makes it hard for his medicine to work, which makes his TBI so bad it’s not safe for him to cook, drive, make good decisions, or operate machinery.

Not that he has much issue with that as he, too, is holding a beat up car together with band aids and victorian_automobile2bubble gum.

So, prayed an entire St. Francis Peace Seed chaplet for him and his car, and going to try and fix his favorite Roman Dominican short rosary for him so he can have it to hold. He lives in a town with no mass transit, and spent all last winter home bound.

Prayed also for friends Joyce and Richard, who unless they take a bus or get a ride are home bound like I mostly am. Amazingly, I got to talk on the phone to them today also. To talk to two friends in one day is..well for me it is amazing.  Between MS and Anemia, I am not concious often enough.

So Joyce and I traded notes about the folks over there and the folks over here, and had a shorter, but very nice chat. Her husband, her, and I all miss the days we used to go shopping together, or take turns having potlucks at each others homes.

old fashioned automobile

old fashioned automobile

The friend who called me this morning is just barely hanging on to her car. My best friend’s car is falling apart. Joyce and her husband just made the mistake of being disabled and old. I don’t have a car, and doubt if I will ever be able to afford one now that it would need to be somewhat wheelchair friendly..

It gets worse. Those of us who are often home bound and who have home care aides shudder at what some of these hardworking medical professionals are driving because the pay is so low.

So many of us elderly, disabled, low income working folks, and single parents just can’t afford decent cars. Even those who can, often have to choose between gas to get to the job or the doctor and heat, lights, food.

How do you get to the doctor or the pharmacy when you are home bound? How do you get to the grocery store? Or your brother’s funeral two towns over?

How do you pay for repairs, or a car payment and insurance on a fixed income that hasn’t even been risen to cover the outrageous gouging by Kraft, Nabisco, and General Mills?  I still can’t believe that if your adjusted income after rent and taxes is even one penny over $973, you don’t qualify for food stamps.  With the typical car payment being close to $300, insurance being at least $100, heat and medical – what’s on earth is left to buy food with?

How do you afford a car payment for a reliable car, that as a home care worker you will spend at least 3 hours a day – not reimbursed – driving from client to client, when the pay is so low you can’t pay a payment, insurance, and gasoline?

Today was a good day in being able to talk on the phone with three friends, and to do some praying for my best friend even if I didn’t get to talk to him today.Open air Old Fashioned car

But even those good things come tinged with the realization that:

  1. before the cuts triggered by the Tea Party shutdowns,
  2. before the gas companies were allowed to charge outrageous prices in poor neighborhoods, while rich folks with fat checkbooks get special “club discounts” because they don’t have to check the balance each time they gas up,
  3. back before states started dismantling social safety nets, and
  4. before the 1% stopped hosting and going to gala fundraisers for homeless shelters and food banks,

We – all of us that talked today, and even my best fried….we all might have spent the day together in person, and had a BBQ. Chances are we would have bought charcoal and some chicken, maybe some BBQ sauce and contributed to the economic growth of our community.  We would have laughed and shared our sufferings, and we would have had a good healthy meal, eaten slowly and savored.

Lack of decent, affordable transportation robbed us today of our Pursuit of Happiness and our Freedom, and contributed to the continuation of the economic depression.

Things need to change.

woman_victorian_webBrenda The Writer

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Filed under disability, Family, Human Rights, Life After The New Depression, Mental Health, Multiple Sclerosis and other Neurological Diseases, politics, poverty, Religion and Faith

Who is the “US” you were talking about?

Hedge Fund Manager raises the price on a $13 pill to $750 overnight JUST FOR PROFITS.money_100s

What was that GOP? That having our medical care in the hands of WALL STREET would be good for “us”?

OH, you meant 20-something wunderkind stock and pharmaceutical market manipulators making big bucks! And the 1%-ers that invest in companies run by folks like this!

That’s the “US” you were talking about when you said it was good for Wall Street to run medical care!OldPhotoLadiesinLineGraphicsFairy1

Ummm, GOP, just letting you know, that the “US” who are the USA taxpayers are actually greater in number than the “US” 1%-ers and hedge fund managers and Wall Street scum. Especially the “US” who are female and tried of your old white men, a token female who is a failed and fired Executive, and token blacks and Latinos who have NOTHING in common with “us” as we struggle to balance budgets, raise kids, grow old, and stay alive on SSI or SSDI and what passes for a GOP “social safety net”.

pretend_liesYour misleading way of saying something is good for “us”….when what you really mean is the other “us” … that pretending to be oh so perfect… while you mean “us” as in your rich friends and your Wall Street scum…. Really, dear GOP, this may have something to do with why you keep losing the big elections…   ….. every four years.

Just sayin’….

Take care,

Brenda The Writer

My thanks to Andrew Pollack at the NY Times for writing the article and getting it past the editors. My thanks to the Health Care Reform Act which has at least some price controls in it already.  First order of business, make sure my congress-people know I want MORE price controls so scum like this get shut down. Thanks also to The Graphics Fairy.

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GoFundMe…& Teach Me About Widgets, Please?

Source: GoFundMe…& Teach Me About Widgets, Please?

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GoFundMe…& Teach Me About Widgets, Please?

So I wanted to post a footer with my GoFundMe campaign…

First try:

Oh that is just a badge….doesn’t say much…


Oh that’s a bit better…or not…

try again


Oh, I give up….widgets are complicated at 9pm after a long busy day.

Yes, I need a new smartphone.  I especially need a smartphone with a bigger screen, and enough power to run my medical apps.  But mostly this is the desperate attempt to get something that doesn’t give me ophthalmic migraines and doesn’t have a duct tape holding it together and a cracked screen.

There is simply no budget in your average SSDI check for “hey! I need bigger letters and a bigger keyboard!” after rent, utilities, and for me, transportation to and from the medical team, labs, counselors etc.  I found a 7″ Blu refurbished Android phone for $90…that is about $30 more than my entire monthly budget for food for me and Booker.  So faced with not eating, or begging….

…. I am begging.  A dollar or two, and you can help me stay connected, stay writing, and stay able to see the caller ID and text messages.  On the Go Fund Me page I also talk about just one app and how I use it to manage gastroperesis.gastro_explanation2

Praying this works….better than the footer on this blog which doesn’t work at all *sigh*. My tummy hurts from trying to understand widgets…..

Take care,


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Filed under disability, Multiple Sclerosis and other Neurological Diseases

Oh God, the Election….

The Election is still a year away, but already I am Farmhouse-Pig-tinyGraphicsFairysick of the piles of manure so high it keeps getting into my hip waders.

However every so often I get to read something and it actually turns out to be true, and I make a small realization about the entire thing.  Today was one of those days.

I caught this from an article about Jim Webb:

“Webb also cited reports that less than 400 families nationwide are responsible for almost half the money raised in the 2016 presidential campaign — an unprecedented concentration of political donors.”

You can read it here.

All I wanted to do at that moment was yell out

“HEY! YOU! yeah, you 400 families that want to buy our election, I’ll use a wonderful British term – PISS OFF”

And I found myself thinking “If a SuperPAC is listed even once for a candidate…yeah, not voting for that guy or gal.”

Oh my.  I’ve been a Democrat all my life, although I was never opposed to the other parties, and every so often would vote for someone who wasn’t wearing a pin with a blue donkey on it. 

Then of course, The Bushes came, wrecked our American way of life, destoyed thousands of lives, got a bunch of our soldiers killed for the amusement of Dick “Shoot ‘Em All” Cheney, and of course sold drugs to buy guns to topple other elected governments, and brought corruption on Wall Street right into our empty kitchens where once upon a time we had this stuff called healthy food.

I have tried for years to find one, just one GOP candidate who could possibly be considered good for our community or our country, and with the exception of some town fellows and the Log Cabin Republicans, such a thing was pretty hard to find.

That was when I became pretty firmly entrenched in Democrat life, and ….once upon a time…thought we’d….

I’m sorry, Hillary.

This has to end.

We have to elect people who are going to shut down these 400 richest families (see Waltons AND Koch, etc), make superpacs illegal again, and get rid of this notion that “corporations are people”.

Like any breakup, it hurt.  But, amazingly not as long as I had thought it would.  After all, I knew no sane voter in America wanted Bill Clinton anywhere near the White House, and she was taking so damn long to file those divorce papers!

But that wasn’t today’s big moment of realization.  No as I read more, I began to see the pattern developing even this early in the game.

No wonder Bernie and Webb are doing so well on one side, and Trump on the other…they don’t take SuperPac money….. he’s the only one using his own money, …. and GOP-ers don’t have, apparently, anyone else running who is refusing to take bribes….BANG! There it was! Realization!

The last time Republicans had only one choice a lot of them said no and voted Democrat. Well, That's Interesting!God I hope I am wrong about the GOP choices.  I am already suspect that Trump may have “drunk from the poisoned well” but no one noticed…It almost makes me feel bad for the average Republican who sits with his coffee wondering what the hell happened to his party.  Oh well, there are 5 Democrats, all those Republicans that didn’t get on FOX NEWS, Independents, and maybe even a Green party candidate.  No time to waste on what those poor Republicans are going to do, or mourning over the relationship that just didn’t work out with Hillary.  I have to go read up on who I want to watch this winter!   (Psst! Feel free to share my moment of realization about the election for today if you wish, but, hey give me the credit for opening up GIMP, ok?)

It’s going to be a long winter here in New Hampshire, I think, but at least there is plenty of manure to burn to keep warm….

Take care,


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Spring in my step – Day 3

Source: Spring in my step – Day 3

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Bedrest and Biblical Commentary

eroosevelt_horrorIt is miserable to be on bed-rest alone, probably one of the most miserable ways to be ill. But God finds ways to make it more bearable for me.

I was frustrated at first, because the appointments I had today were important, but by 7am, having been woken up by pain at 5, it was obvious I wasn’t going anywhere today. Considering I went out two days in a row, and both pretty long – over 4 hours, with more than one stop – I can’t say I wasn’t too surprised.

Back in bed now, having finished my late lunch of a turkey and American cheese (soy of course) sandwich.

I counted out what I had left of my package, and carefully wrapped up 3 slices of soy turkey lunch-meat for October and 4 slices for Thanksgiving. This month extra expenses mean I will eat from the pantry and freezer for the most part, although if things get too lean I can use the gift card a charity gave me. I am trying to save the $10 gift card for a grocery store so I can have a Thanksgiving meal worth inviting people over to.

I now get to turn over, rest the other hip and knee, let the other side of my abdomen get a break, take a nap.

This evening, however promises to be more interesting, as I have both a victorian_woman_reading1Time Magazine issue and a saved post from Not All Catholics Are Roman to read. The latter is just the kind of meaty, filling reading that can keep me from being too lonely.

One paragraph from the Roman’s midterm report on the synod they hare having with the other Vatican led churches, along with 6 pages of commentary and biblical references and interpretation by a fantastic theologian to go with it. By tonight, I am willing to bet there will be more commentary added, and us Catholics will be having our own little discussions, debates, and building more into the Midrash of Catholicism in our tiny little corner.

prayer_deskThese are such exciting times, with the Convergence movements, the various Fellowships and Synods among the denominations that make up Our Church. I am glad God has let me live to see the day that Orthodox, Roman, and Independent Catholics gather and share, discuss, talk, pray for each other and support each other.

Oh, there are still Roman Rad Trads who send the occasional death threat, and the not so occasional “you are going to hell” nonsense, but there are many, many more Romans and others who are changing and coming together in ways no one could have imagined even 3 years ago. It is humbling to see it happening in my tiny little corner, with such a little group of ad hoc volunteers to help me.

Yep, portioning out my 15 slices of lunch meat to last 4 months….it’s worth it.

Part of me can’t wait for the day we get to have them on Skype group video, and to have those videos re-broadcast on our YouTube channel at But the other part of me, in my pj’s and messy bed head hair, is happy those days aren’t here yet!

Take Care,


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Filed under Catholicism, Cooking, disability, Education, Fibromyalgia, Life After The New Depression, Mental Health, Mentoring, Multiple Sclerosis and other Neurological Diseases, Not All Catholics Are Roman, Religion and Faith

Breaking Up and Reconciling in Couples living with Mental Illness

Breaking Up and Reconciling in Couples living with Mental Illness

By Brenda Ann Eckels, aMGC (C)2015

(Note: Many details have been changed to protect the privacy of the friend I talked with today, and her family. -BAEB)

Divorces / Breakups with joint property are so time consuming when one partner is seriously impaired, and the other has a life and would like less interruptions from the other person’s drama in it. Of course I am talking about relationships that when both parties are stable, the couple is happy, in love, and doing the self care and other things to stay that way along with the couples things that make relationships stronger.Neighborhood_with_Various_Buildings

And when the impairment is untreated mental illness, the breakups can happen every month or every time they become especially unstable. Then of course, they get better, and the breakup is recognized as just a symptom of the illness.

I spent some time today (in between sewing and working on that dreaded task of my September budget) trying to help a friend who is going through this.

She is the stable one with the life that is getting better each day, and of course the first suggestion I had was that she seek a couples counselor experienced with how mental illness can make being a couple or a family harder. Turned out they already had one.

Yeah, having one or both partners suffer from mental illness

can make holding the relationship together harder.

SO can having one or both partners suffer from diabetes, a TBI, or cancer.

The thing that bugs me is THOSE families get all kinds of resources and supports, and friends and family all rally around them, pray for them, bring over casseroles, wear pink or whatever color is right ribbons,  and help them.

Have a husband who suffers from BiPolar and gets sick a lot?

Hardly any resources, almost no supports, and most often the friends sit there smugly and say:

“Well, maybecoupleinbartalking you should

just leave now.

You know, 

get away from all that drama.”

The families are even more help by adding things like:

  • woman_shhhhOh, uhhh, don’t talk about his treatments on Facebook. It brings up questions when the neighborhood wives have their cocktail parties.”
  • criticman1 “We really don’t want people to know that your wife had to spend 30 days in a psych ward because she got Postpartum Depression.

    I mean she had it before, so why was she trying to have another kid anyway? Shouldn’t she get her tubes tied if she has this mental thing?”

  • Post-traumatic-stress-disorder-via-Shutterstock“Look, we get it, her first wife was an asshole who beat her, and she has this PTSD thing.

     But really, can’t you just keep her at home so she isn’t having those

    flashback things in public?

and both groups have the all time favorite:

moses_jesusfreak“If he would just accept

Jesus Christ as

his personal savior,

he wouldn’t have this problem

with Depression.”

However, there are hundreds of couples and families in this country, where one or both man_woman_happyhave serious mental illness, that do maintain stable healthy relationships. So it is important to remember that the mere fact a person has a serious mental illness is not by itself mean the person can’t be in a happy, mutually beneficial long term or even lifetime relationship.

In my friend’s case, it is especially challenging this year because there are

  • joint assets,
  • an outstanding insurance claim from the hailstorm,
  • a home with a lot of memories, years of home improvements paid for by her,
  • a very loved stepchild,
  • her new job which takes her fairly far from the town they lived together in
  • an ex who is a domestic violence abuser (apparently making progress in therapy)
  • and one one side, family members who caused a lot of hurt and pain (a lot like the situation Brian and I went through with Female Relational Abuse).

I think she has made the right decision (promoted by her psych team and the couples counselor they see) that she not physically live with her partner until her partner is much more stable.  I have been through the chaos that can happen if an unstable partner decides you. are. out. and it is not pretty.  Sometimes it can be deadly, especially if the person has weapons.

It is, as she puts it, very hard to still be the one getting called to fix things, tend the gardens. It is even harder when she is there, she says, to see, all her years of hard labor as well as so much money now something she can’t enjoy the results of, and knows is at risk of being lost all together.brokenheart1

“I have a lovely place, and down the road it would be big enough for both of us.” She said “But, a home by the ocean it is not, and I had really expected to grow old on that porch looking out at the water.”

“I can’t afford to pay both payments, and my partner is so unstable right now, the money just vanishes. My partner is already a month behind now, using this month’s money to pay last month’s payment. Every month, more of the bills fall further behind, including the ones I am cosigner for.”

“And sometimes I am there and my partner is ok…acting fairly stable.  We might laugh, cook a meal together, but at any moment my partner can snap and become bellicose, shouting, and accusing me of being just like the ex.  I don’t even have to say or do anything, it is like a switch flips and suddenly my partner is another person.  It hurts, and if I can, I just leave.”

There was not a lot I could do except:

  • Let her talk, cry, and tell me about all the problems her partner is having
  • give her a referral to the Warm Line in her area, that she can call and just vent and talk with a trained peer support counselor
  • give her the web address for a nonprofit debt counseling service that might be able to at least get the collection calls stopped
  • Found an address for a state ombudsman/advocate program that might help her with making decisions
  • Promised to pray for the entire family.
  • Gave her the numbers for the mental health Peer Support Centers near her, and near her partner.
  • Reminded her that it couldn’t hurt to try again to get her partner’s family on board by sending them the NAMI Family To Family brochure.
  • Validateromantic-pink-rosesd her feelings that

    she still loves her partner very much,

    and feels that this latest “breakup” was

    solely because of the mental illness symptoms, addiction issues, and interference by the new circle of “friends” her partner was using substances with – just like most of the past “breakups” had been.

  • And last, I told her about a web site where she can talk to the stepchild somewhat privately. Turned out the stepchild already used it.

In the end, I felt like at least I did no harm and did some good. But they are like small Nerf ball bullets being shot at a raging tiger. I considered the battle she is living in with the one Brian and I have been dealing with for over two years. (You can read more about that at Brian & Brenda, Sittin In A Tree Blog

You know what final thought I had?

I think it would be a great idea if WRAP (Wellness Recovery Action Plans) could include a sort of pre-nup kind of agreement, written when both parties are stable, that lays out in advance if one of them has a mental health crisis and decides to “out”/”breakup”/etc it is laid out very clearly in a signed, notarized agreement as to who stays and who goes (if they live together), who gets what, what the therapy and medication compliance requirements are to consider a “breakup” initiated during a mental health crisis. It would be so helpful to couples to have a legal document the healthy partner can use to keep bills paid, lights on, and everyone fed.

Of course, first we have to get all 50 states to pass laws that would make a notarized WRAP Plan just as powerful a legal document as a Living Will or Physical Health Care Power of Attorney.  And we are a long way from that. But maybe someday, mental health consumers can have the same rights to such pre-planning as diabetics do.  It could make the ups and downs of relationships where one partner has a serious mental illness much easier to manage.

Take care,

woman_victorian_webBrenda The Writer

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Filed under disability, Education, Family, Human Rights, Mental Health, politics, poverty, Religion and Faith, Wedding

Home Improvement

So, gradually my new apartment is turning into something livable, as I race to be able to have it complete and ready for Booker and I to actually live like normal folks do in September sometime.  Fall_Home_Improvement

Along the way, my 65 year old adoptive Dad, who has two fake knees and is legally blind, and I have slowly been firing up the 30 year old pickup and getting as much out of storage as we feel we can reasonably handle unloading.  Most of the time, that means he is sitting down, handing me stuff, which I then wheel down to the apartment door and into the living room which is, right now, better known as “SHIPPING AND RECEIVING”.

Up until a week ago, I was also sometimes getting help from Brian, which with his back meant that I had to schlep even more of the stuff myself, but on the flip side he can see fairly well, especially if he actually wears his glasses, so I avoided the post by the door a lot more often when we teamed up.  Both men enjoyed laughing at my expense, and both cringed and offered to call 911 each time they heard a “thwack!”

Now however, Brian is out of commission, and his car isn’t doing to hot either.  So at this rate, roughly a 1/2 pickup truck load every two weeks or however long it takes us to recover, I figure we will have my 10×20 storage unit empty around….Easter?

Suffice to say, home decorating hasn’t been high on the list, but sometimes when you are on bed rest, scrap booking helps fill the time.

MyBarSign08252015So…the wall mural “Sassy Ladies” for my bar is hung up, although not finished yet as Brian has all the stencils for the lettering in the mutual scrapbook tool bag that floats between our houses.

Still, it is nice to see one little corner has a little of my personality in it.  Next up is my prayer table…well, once that part of the living room floor is cleared.

Back to bed….

woman_victorian_webBrenda The Writer

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Filed under disability, Family, Fibromyalgia, Home Improvement, Life After The New Depression, Multiple Sclerosis and other Neurological Diseases