Thursday, March 26, 2015

I'm back!

I'm picking up this neglected blog to share how our journey has unfolded over the last several months. In case you don't know us personally, we've moved from the Pacific NW of the United States, to Saint Croix in the US Virgin Islands. Its something I had dreamed of doing when I was newly out of the hospital following my coma, but thought I might not actually accomplish.

I got engaged and sold my house in Vancouver, Washington. My fiance is English, living in Edinburgh, Scotland and we were really excited to spend a few months with him there, before returning to the States to apply for immigration to the UK.

Unfortunately, things (as per usual in my life) didn't exactly go as planned.

To say that our Summer 2014 road trip was a disaster, doesn't begin to cover it. I was so excited to finally have gotten out from under my house (which sold quickly but at a pretty low price.) I planned to drive cross country from the PNW to Virginia where my kids' grandfather was going to store some of our possessions. (Everything I owned at that point was reduced to the dimensions of a 12'x9' U-Haul trailer.) I wasn't sure how the move to Scotland would pan out, so this was a way to store our things without storage fees and then we'd have our belongings shipped to us in Scotland when we were ready.

Best laid plans:

The kids and I made it to Eastern Oregon before the problems started. As I was driving up the big pass into the Blue Mountains, on particularly steep hill, my Durango started to overheat. It was dark and my phone had no cell service. Of course. I made it to a turn out where a barrel of rainwater was sitting at the side of the road. (Clearly, I wasn't the first person to overheat on this hill.) In fact, there was a semi truck already there, the drivers sitting around while cooling off its engine. I gathered up my courage (being a single woman, in the dark with no communication is a little nerve wracking - especially when alone with my kids.) I went up to the drivers and they were really kind. They helped me with getting water into the engine of my truck and coached me on how to drive up these passes in a way that would reduce the likelihood of overheating again. I made it to LaGrande, Oregon and stopped for the night.

In the morning, we started up the hill out of LaGrande and almost immediately, the truck started to overheat again. So, we turned around and made it back to a hotel and called AAA. They referred us to a repair shop where it took five days to get the parts and the work done. FINALLY - we were on our way again. Or so we thought.

We traveled for several hours until we came up the hill into Evanston, Wyoming, without incident. We stayed the night and got back on the road first thing in the morning. But the Durango's radiator problems were not resolved and while driving through the heat of the summer in Wyoming, it began to overheat again. Several stops and refills with water later, we'd only gotten as far as Rawlings when it became clear, I wasn't getting any further down the road.

Wyoming is on my shit list. Not only did it kill my truck's engine, but they have proprietary phone systems that don't share networks with anyone who doesn't have the right carrier. I was still using my Cricket phone which was not on the friendly list, so I had no phone and no internet and no way of contacting AAA or anyone to help. We were well and truly stuck on the side of the road in BFE.

After some time, an RV with a horse trailer stopped just ahead of us (to wait for the rest of the people in their caravan.) I jumped on the chance and prayed for kind people. The folks in the RV took pity on us and took us as far as Laramie where I planned to rent a car or truck (or U-Haul truck... anything) but it happened to be the Cheyenne Frontier Days and literally every rental car within 100 miles was already rented.

The RV people offered to take us as far as Cheyenne, at which point I hopefully could call someone in Denver to come pick us up. My ex husband lives in Denver, so although its still a trek and I knew he'd be put out, at least we had a safe person somewhat close. However, the phone still couldn't communicate and even when I was able to reach him, my ex didn't comprehend what I was telling him: We'd been dropped off at a hotel in Cheyenne and had no way to get to Denver and the hotel (and every hotel in town) had absolutely no rooms. I was stuck with two kids and three backpacks and a suitcase and no transportation or lodging.

Finally, while sobbing quietly in the lobby, one of the receptionists found the number for a shuttle that (for $100) would take us to the Denver Airport. (Did I mention that my fiance was flying into Denver International Airport that afternoon? No? Well, he was. And his phone had died so he had no way to contact me or find out about my situation until he could find a plug.)

Several hours and many more little micro-obstacles later, we arrived at DIA and reconnected with my fiance.  It was a night that felt like nothing would ever go right, but eventually we managed to get a car rented and find one room in all of Denver that was available for the night. Unfortunately, I remembered just enough about Denver to get seriously lost but we finally ended up finding the right place.

The SAGA continued into the following week. I wish now that I'd have just bitten the money and gone for the expensive but simplest option of having my Durango and the trailer towed into Denver. But I didn't want to pay $2/mile for the trailer towing and figured I'd just rent a U-Haul truck and go pick up the trailer later. Except that then there was this horrible storm with flash floods on the road that I needed to take to go back to Rawlings, Wyoming and I abandoned the task in lieu of living through the week.

At one point, I looked at my fiance and said, "What if we just run away?" We discussed the options and decided to fly out to Scotland from Denver - skipping the remainder of the trip. (I made arrangements with friends who were willing to help deal with the truck, trailer and shipping) and bought tickets to Scotland. We had had enough and were ready to move on to the "good" part of the plan.

It was a wonderful couple of days, then. Finishing up details and seeing my ex (he got to spend time with the kids and he and I had a nice chance to reconnect after many years apart.) Happily, we got to the airport and went through all the security, boarded the plane to Glasgow (via Reykjavik.) It felt like we were finally on our way.

If only.

Tuesday, November 5, 2013

I have been fighting depression pretty hardcore. This time of the year makes me literally want to kill myself. Its dark. Its sad. I have kids who have an ideal image of Christmas/Yule and I have no money and feel pretty much entirely alone, so I can't even begin to give them their imagined holiday. 
In the last few weeks, I have been dealing with a growing, generalized sense of despair, intrusive thoughts and even resentment of those who would be hurt if I died. I have a sense of responsibility in staying alive that is both beneficial and annoying. I was swimming in this depression, feeling broken in my essence, but then... something shifted.
I had an epiphany while chatting with a friend of mine this evening. I'm not just depressed because my brain (and body) are broken. I'm sad because I'm actually grieving! My last few years of Novembers and Decembers have really sucked.

November 22, 2009, my dad died. It was the Sunday before Thanksgiving that year and two days after Ev's 3rd birthday. (This was just under two years after my stepmother died.) Thanksgiving & Christmas were really big for her and I would have always had somewhere to go for those holidays if they were still alive.

In 2006, when I was pregnant and recently divorced, we moved to this area to be near my maternal family. My mom was born fifteen minutes away from where I currently live, and was raised there. I probably have 100 first cousins within 30 minutes of where I live right now. I grew up going to Thanksgiving and Christmas dinners with them my whole childhood and know they all have several big family dinners around town, but I'm no longer welcome. My mom's family have completely turned their backs on me.

When I was literally two days out of the ICU, my aunt (my mom's sister) accused me of stealing my mom's social security retirement money and demanded I explain my whole financial situation to her. I refused and basically kicked her out of my room. Since then, they've not only simply avoided me, they have actively rejected me.

The first Christmas after my coma, they even told my mom that Christmas eve dinner was just for her generation. (Sometimes they did have get-togethers that were just siblings, so she didn't question it.) But when I asked her who was driving her to dinner, she answered that my cousin was picking her up. Turns out, it was the whole family. But, they deliberately lied to her so that I would not be invited. I tried to brush it off because I didn't want my mom to feel manipulated and betrayed, but she felt guilty and sad, regardless.
Not once, in the last two and a half years, when I've literally gone on Facebook and asked for assistance with FOOD - not once - have they been the ones who've helped.

Last Christmas, we were so poor. I was living on $405 a month in child support and $600 a month in food stamps, but everyone pretty much figured we were basically ok so we didn't have the outpouring of offers to help with Christmas we'd had the previous year. I didn't have the heart to ask again. The kids each got three small gifts and we didn't have food, so Christmas dinner consisted of eggs & bacon. I didn't even have bread for toast. I wanted to kill myself.

November and December are now 8 weeks of consistent reminders that my family has either died or actively rejected me. Eight weeks of not enough food. Of kids who have expectations of a great holiday filled with joy, gifts and treats. Of long, dark days without enough of anything. Of me constantly being reminded of all the ways I'm failing them. Failing myself. Failing at life.

No wonder I hate this time of year. No wonder I'm depressed! I'm not depressed because I'm dysfunctional. I'm depressed because this shit is fucking crappy! Its an APPROPRIATE response to this stimuli! Anyone would be depressed in my shoes. 
I needed to understand that this isn't just an unending bought of depression. I was just really, honestly sad and didn't acknowledge how hard it was. Now that I have realized that there is at least a big situational component, I'm not trapped in it, you know?

I can address the situation. Its not me drowning; its just... I've been knocked down, but I can recover just by feeling the sadness and injustice of it and then moving on with my life. Lots of unfair shit happens in life and it doesn't mean I am a broken person. 

My essence isn't broken.

But that's how I was feeling and it was hopeless. When I finally put together that its situational, I realized that a different situation will create different neuropathways in my brain and in a few years, it won't have the same association. Its something I can resolve.

So my goal for myself now is to work to renegotiate what this season means for me. To create new memories that will override the sad ones, even if it means letting go of expectations of how things "should" be. 

I wish my family were there for me, but they aren't, so I have to move along. I have to create a new family for myself and my kids. And I can. I can do this because I'm not broken.

Saturday, November 2, 2013

One of the most challenging parts of my life right now is living in poverty. I've been disabled for a couple of years now. Even before my big health crisis in June 2011, I was finding it difficult to show up every day to any of my commitments. My energy would wax and wane and I never knew ahead how I'd feel on a particular day. It made working a real issue when I was sometimes several hours late, or ended up calling in frequently to work because I was in too much pain or too fatigued to actually get up and dressed and out the door to work. Rheumatoid Arthritis is one of those illnesses where you never can judge what your day will be like. One day, I'll go-go-go and then, bed for three days. Pain, fatigue, mental fog are all frequent realities of my life. Because of this, my goals went from becoming a Certified Nurse Midwife, to a therapist, to hoping to to find some way to support myself, eventually landing in the world of unemployable.

Its a scary thing when you don't know how you're going to survive. Even worse when you have kids. In an effort to improve my condition, I started one of the RA medications that requires an IV every eight weeks. During that time, I suffered a series of urinary tract infections. Once, in June 2010, I was hospitalized with sepsis that occurred when a kidney infection turned into a blood infection. I was in the hospital for several days getting IV antibiotics and recovered but that was just the beginning. A few months went by where I had more UTIs and then the following spring, the kidney stones came. I had three kidney stones in three months. (Yes - they really are as bad as childbirth.) In June of 2011, I went in for a kidney stone that wouldn't budge. The urologist did tests and determined that I didn't have a UTI, although I felt like I did. I had a chills and an all over body ache that always accompanied my infections but my labs came back showing no immune response. There was, however, a kidney stone stuck about half way down the ureter and urine was backing up into my kidney.

The doctor determined the only choice at this point was to go in after the stone and place a stint to keep my ureters open while they recovered from the damage the stone did. (Kidney stones are tiny mineralized rocks that feel like BBs covered in razor blades. So,understandably, my ureters were pretty inflamed and angry.) The procedure is a simple one. Done under general anesthesia, it doesn't take long and is pretty much an outpatient procedure.

Everything went fine during the procedure and I was sent to the recovery room. My doctor came to check on me and was chatting with me when I started shaking. This is a common reaction to anesthesia, so they gave me some Demerol and expected my shaking to improve quickly. However, it got worse and continued to get worse in the minutes that followed. What happened next, shocked my doctor so hard that at one point, he called his wife and told her, "I think I just lost a patient."

I don't remember any of this. I didn't know about anything for over ten days when I finally awoke from a coma and learned how close I had come to dying. Apparently, while chatting with my doctor, following the Demerol, my blood pressure started to drop. And kept dropping. And kept dropping. Until there was nearly no blood pressure at all. They called a code blue and like on TV, the code team came crashing into my room and started doing all the things possible to keep me alive. My blood pressure had dropped so low that they were worried about brain damage. They slammed new IV lines into my veins and forced fluids into my blood vessels while a doctor (luckily for me a pulmonologist) intubated me. I had stopped breathing.

The code team rushed me into the ICU and continued forcing fluids into my body just trying to keep my blood pressure above the line that would cause brain damage without proper oxygenation. In the end, it took 33 liters of fluid before I started to stabilize. My family was contacted and told that I was likely not to survive and that they needed to come if they wanted to say goodbye.

My children were ages 4, 7 and 16 years old. Babies. And their mother was slipping away.

My friends and spiritual community joined my family at the ICU. In the middle of that first night, when everyone else was sleeping, my friends took over the chapel and cast a circle of witchcraft so strong, they pulled my soul from the brink and kept me anchored to this life. During that circle where my friends who had known me through thick and thin, through birth and triumph and challenges, they invoked the Gods and Goddesses and asked that they assist my blood pressure in rising to a safe level and to keep me connected to this body. This life. And it worked. My median blood pressure rose to five points above the number the doctors had said was necessary if I was going to survive as more than a vegetable.

I remained in a coma for ten days. During that time, I was stuck in a lucid dream where I was aware of sounds, feelings and experiences, including painful medical procedures, but had no idea where I was or why I couldn't wake up. I remember texting my friends, in my dreamstate, trying to get someone to help find me and tell me where my kids were. I couldn't find them and I was alone and didn't know why I couldn't get out. I was trapped and had no idea why. All I knew was that I couldn't find anyone and my body hurt.

To be continued.

Friday, November 1, 2013

Well, its the first day of NaBloPoMo (National Blog Posting Month) and I'm finally sitting down to write at 7pm. I'm thinking it better than midnight, though, right?

I'm Gwenhwyfar (pronounced like Guinevere.) Its a throwback to the old Welsh version of my given name, Jennifer. I'm planning to move to Scotland next year and I feel like I'm reinventing myself on so many levels; I wanted to signify these changes with renaming myself. I didn't, however, want to completely let go of the name my parents chose, so I have changed my name to the Celtic/Gaelic versions, added another middle name and completely changed my surname (Bell) in deference to my Scottish ancestors. The Belles of the Borders were a rowdy bunch. The border between England and Scotland was fraught with conflict and residents on both sides of the border were known for cattle thieving (reiving) and were even named in a huge colorful curse by the Archbishop of Glasgow in 1525. The text of the curse can be seen here.

In 2001, the curse was inscribed into a stone as an art piece on exhibit in Carlisle, Cumbria in England and has said to have brought bad luck to the residents of the town. 

 This blog post is the first in a series chronicling my journey through poverty, chronic illness, parenting and following my heart with a new love and preparations to move my younger kids and I to Scotland in 2015. As a survivor of many of the threats listed in the five hundred year old curse, its really been a challenge to stay alive and try to find happiness. Wish me luck.