September 11, 2008, and my life since cfids...
Hard to believe it has been 7 years since that terrible day.I was living in California with my roomie of many years - before CFIDS (or at least before it hit BIGTIME - just Fibromyalgia - from which I joyfully had LOOONG remissions - and short mild flares - dr called it Mild - didn't seem mild then - but Oh what I wouldn't do to trade these days for then. I was healthy. I had lost the 100 lbs weight gain that came with my first flare of Fibromyalgia - I was still able to go out dancing with friends and work ful time and work the renaissance faires as well).Woke up on my own ( I never got up on my own!) in a panic and ran to the TV and turned it on - I pick up "vibes" very easily - and I guess i "heard" the pain - I knew something tragic had happened - just not what.Called my roomie to come out - we sat and watched the TV reports horrified. Unable to take it all in. Stumbled through the day in a haze of prayer and shock. Not much work happened that day - even my Senior Pastor sat glued to the small TV someone had left as a donation. I sat glued to the Computer till hte day ended.Got home to find my roomie going thru lists of all the names of those supposed to have been in the buildings and plane looking for friend's names. I didn't know anyone there - yet.One year later - I was in Mexico, living with a host family while studying spanish in La Paz, Mexico. One of my classmates was from NYC, her boyfriend escaped the blasts - but she didn't know for a week. She lost may friends. Was living in Mexico to heal and figure out who she was post 9-11.All of us tried to support her - finally we all went to the expat bar on the beach - asked them to sacrifice the game on english tv and let us watch coverrage of the remembrances - the only place in town that had satelite.Watched and cried and drank to her lost friends, watched as some of them were highlighted and their storties told. Seeing pictures and hearing details from familiy and friends made the situation more real. Prayed for the lost, known and unknown.At sunset we walked the few feet to the beach, I had scrounged up some candle stubs from my host family and our school's owner and a lighter, a couple other Americans joined us at the beach as we each lit a candle. I was priveledged to lead the group in a prayer and time of rememberance. Today I sit in my living room - In another state - in another life. My mom (who I moved in with after returniong from Mexico as her landlord sold her place and I had promised years ago to live with her when the day came. She and my brother had found a home in the same neighborhood that the rest of the family lives in - I never saw it til I moved in. I did see it the day I was at home between Mexico and a trip to Connecticut before I went back to work (sabbaticals rock) - I hated it (I hate change!) It was a mess. But When I finally moved in - it had been painted and gussied up - it became a dream home. Big yard, able to have dogs and cats and birds, grow a big flippin garden - it had fig and avocado trees and passionfruit. Big shade trees, pine and sycamore, and a canal at the back of the property. AND a small studio in the back - my jewelry studio - and a massive drive through RV garage with a built in workshop that became my glass and metal shop. It was just blocks from my nieces and nephews and they came over all the time. It was in the neighborhood where all the kids I went to High School had lived and many still did. Close to all my California friends. still close to work, but not too close! I had discovered my art - my passion and love for glass had come out in fusing and lampework, and silver clay work. My best sisterfriend and I started a business and were happily selling jewelry and art glass and teaching metal clay classes.It was during the time living there that my mom was diagnosed with agressive breast cancer. Our whole family was planning on leaving for China in 2 weeks - the trip of a lifetime! The doc said go for it. It was an amazing trip! The 3 kids were both old enough to appreciate the trip and young enough to want to be with parents, auntie and grandma. Mom's chemo started immediately on our return. Mastectomy and reconstructive surgery were 8 months later. All successful! praise God! I was still working my job of 13 years making great salary and working full time plus. But blessed to have a flexible schedule to help mom out, cook and drive her around and care for her during recovery. . During mom's year and a half of treatment and recovery things were getting very rough - very stressful at church/work (some sick people waited till things were most difficult at home to begin to cause problems at church... Grr ) After her surgery and recovery I had the flu and my mom too - hers became pneumonia and she was hospitalized. Came back to work to find that a "small mutiny" had been taking place in my absense. A Very Clever Few people who knew how to manipulate played the board and Sr. Pastor like music. Rumors and secrecy had everyone believeing things that no one bothered to check - People who should have seen through it fell for it and beliving they were helping, informed me that I was going to be asked to resign by the board the next night. At first I belived it - why would they lie - my Sr colleague met with me to strategise the best way to deal with the situation so I got the best severance package. Something was fishy, though - I called the Board chair - one ofg my best friends - he knew nothing. So then I called the rest of the board members and - Surprise! no one knew anything. Being no dummy and being trained in family systems and conflict analysis and management - I got to the bottom of everything. - it was better than a book or TV show - very Soap opera like. Very Very Clever. And oh so sick and twisted.I was able to bring the "secret group's" actions to light. Everyone who mattered to me knew. They knew we knew. THe majority of teh congregation remained clueless, tho.I could have stayed. Part of me wanted to stay and see these people's power taken from them and their deception exposed, so that they couln't cause anyone else the same kind of problems in the future. But I figured that perhaps this was God rapping me on the head and telling me it was time to listen up and move on. It was time after all - but I was comfortable at church and home. And at the top of the glass ceiling in my job. Well - this certainly got my attention. Sometimes God has to speak very loudly for me to listen. Oh ! I must remember to tell the tale of the Telling Tattoo - all a part of this story. Called the Bishop (we don't call them that - but same difference) of the pacific southwest when the trouble first began just to keep him apprised. He was concerned as there were no "good" positions coming up in our area in the near future. Then he called me back and said he had a very unusual proposal.A church that fit my dream outline, and who needed someone able to deal in family systems and conflict - it was however as far from Southern California as one could get and still be in the Pacific Southwest region...Yep - Hawaii. Only part time. small pay. But i felt that this was IT.Wow! So the flu and pneumonia had struck and resoved and back at work battling said mutineers and praying about whether or not I should go to Hawaii. Italked to my family and they all having prayerfully considered it felt it was a true calling as well. the final answer came when my mom offered to come with me - her pension and SS would carry us through the first months til I was established and could get a second job. (I had a parsonage so houseing was provided) we worked out a budget - bare bones, but do-able.So I flew to Hawaii and met the congregation, interviewed and preached and was offered the job. It was February - I would begin in July. That left me 5 months to finish up and prepare my miinistry leaders for takeover and solo flight , pack my household and figure the whole moving overseas, say goodbye to friends and family. Packing! Yikes! hard work. I was excited to go. Also filled with a terrible sense of loss at leaving my family and friends of 46 years. The stress of the past couple years and the flu I'd had in the fall - well - the whole situation took it's toll. I had been feeling tired - well duh! but more tired than ever before. I had earned my second sabbatical by then & had been planning to take 3 months just to kick back and work on glass - but that was before the Mutiny and New Opportunity had been presented. In this situation, I couldn't, in good concioence take the whole sabbatical,as one promises to be there at least one year afterward. I did however take 6 weeks off.I had to. ( I shoulda demanded the 3 months, they would have given it - they knew I'd been wronged and wouldn't have ben leaving the job otherwise - I have to learn to stand up for myself - be more demanding, when it is deserved.) I had ended up less and less able to stay awake - falling asleep at the desk, short of breath and fluey all the time. Had to take 6 weeks of sabbatical just to rest. Slept the whole time. Finally, suspecting there was something very wrong going on, and having lived with Fibro for so many years, and having kept up with the research, I went to Dr Holtorf in Torrance CA. Dum Dum Duuuuummmmm.Enter CFIDS et al.or diagnosis thereof.And here I am. Have been in Hawaii a year and a half. Just now getting a second job. Still not sure I can carry it off. I had to take a week vacation this week to rest up, cause I've been in one huge flare for months and months.Took all morning this morning filling out the forms needed to be hired by the Dept of Education (gonna teach ESL and Citizenship at the local adult school). Granted there were a big bundle of forms - it was amazingly difficult - and I have to wonder how many mistakes I made - and I have to laugh knowing that people who don't have fatigue and neurological fog issues must wonder how it could take 3 hours to fill out the same information over and over, and make a few phone calls. I forgot what month it was. I'd been writing 08-11-08 all morning.In the last couple pages I finally wrote 9-11-08 and remembered the day. God bless those whose lives were forever changed.God bless us all, as well - as we cope with the challenges of CFS, Fibro and all the other party crashers in our bodies.Life is challenging. Always changing. Nothing new about that.Time to start moving beyond survival and move toward wholeness - with or without the disease. I will take inspiration from those of you who are living with CFIDS - really living. Gonna do what it takes to set up my studio.Gonna see the doc about the weight that came back with the CFIDS.Gonna go outside when I can, rest when I need to and be out and educational about these "invisible" diseases.Well - gotta go pick up dr's reports and deliver the job paperwork. Then back to my vacation pastime - watching all of the previous seasons of Lost - we're about to start season 3. I figure since I live so close to the film site (Saw "Hurley" at Macy's last week and ate at the shrimp shack where the cast and crew ate the day before... Might as well know the show.
Replies
Yeah this CFIDS is a kicker isn\'t it ? lol
Life is always changing wether it is good or bad but what doens\'t kill us will makes us stronger ...I truly belive in that
some days i so want to scream and shout because of this but I get it out and over with and I\'m done for a nother little while.
I have had several friends say \"well WHY did this happen to you\" i look at them and say \"why not?\" I am no mroe special than the next person..but I have it and I have to deal with it unfortunately
I love \"Lost\" watch it all the time :)..enjoyyyy
hugggssss Deb
That is cool about \"Lost\" and all the church politics, I feel for you hun, it happened to my son just last week. He could have stayed but it would have torn the church apart. It happened to me in two different governmental jobs.
Just remember \"we are not of this world..\"
Love and hugs,
Linda