Not 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, TodaysCatholics.com, or from my blog, http:brendaanneckels.wordpress.com, 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 and 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.
Disappear 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
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.
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.
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.
That 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, TodaysCatholics.com 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 GoFundme.com/7z4pkz8 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…
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.