Why Handicapped Parking Spaces Matter… Even If I “Look” OK

To look at me, I probably don’t look ‘disabled’- or ‘that bad’.  I have all of my limbs, don’t use a cane because of vision issues, am not in a wheelchair all of the time (though I will have a wheelchair by the end of the month for longer distances), etc.  I don’t have contracted or withered limbs, use braces to support my legs, or any other visible disability.  And yet handicapped parking spaces make it possible for me to go to the store on my own. Period.

My disabilities include peripheral neuropathy (my right leg is deteriorating and both feet burn at times), autonomic neuropathy (if I stand up for a period of time my heart rate accelerates and my blood pressure drops, or if I get overheated, I pass out), degenerative disc disease (my spine is ‘collapsing’ from the discs deteriorating- lots of pain), degenerative joint disease (have had one knee replacement, should have had another, but leukemia got in the way, and both hips have bone spurs), and at times my chronic pain is really bad.  (Did I mention fibromyalgia?)  It’s always there, but some days are worse than others.  I’m a gimp.  Who might keel over if I’m not careful and prepared.  I am also very intolerant of temperatures over about 65 degrees for any length of time.

Having handicapped parking makes going out at all possible.  That along with my cooling vest.  Those two things (and soon the wheelchair) make it possible to be ‘normal’- or at least take a stab at doing normal things.   I already look weird from leftover chemotherapy side effects: my eyebrows never grew back right, and I’m much heavier than I was prior to cancer.  I keep my head shaved because of how my hair affects severe heat intolerance.  But having a closer parking space gives me some freedom on the days when I am able to leave home.  It’s a big deal !

When I see someone park in a handicapped parking place, but leave someone IN the car in that place, and walk in to the store with no indication of disability, I get annoyed.  Now there are a lot of disabilities where the person is able to move around relatively normally.  Some folks have handicapped parking for emotional disabilities.  Those are valid.  But I’ve heard people talk (or read) about using their friend/spouse/partner’s disability placard to get good parking.  That is illegal, and morally reprehensible to me. Then there are those with no placard or handicapped license plate at all.  On a day when I can leave home, those closer parking places are crucial !  They’re not just a convenience.  I can’t leave home just any old day.   Walking an extra 20 feet can be incredibly painful.  More pain can cause unstable blood pressure and heart rate, and that can lead to losing consciousness.

I know which stores I can go to and be safe, because of the proximity of the handicapped places (one hospital here has the handicapped places down a flight of stairs or a lengthy ramp… great planning; they do have valet parking until 5 p.m., so I have to schedule any tests prior to then).  I know how far I can walk before getting a grocery cart to hold on to.  I haven’t been to a mall in about ten years, except for once when I was waiting for a new battery to be installed in my car- I gimped to the food court for a soda while waiting, then gimped back.   I’m hoping the wheelchair will allow me to ‘chair walk’ (use my feet to propel myself as a form of exercise and general mobility) in the mall.  I’m not a huge fan of shopping, so it’s more of an issue of seeing other human beings and being more mobile. As it is now, I shop about once a month, and aside from my dad, I might not see other people for weeks. It’s been like this for 11 1/2 years.  I have joined a Bible study recently, which has been great.  It’s hard to walk from the parking lot  (with handicapped parking) to the room we use, but I’m getting there. It takes about 36-48 hours to recover.

But without handicapped parking, leaving home is not even an option for me and millions of others.   Staying as independent as possible is really important- not only to maintain whatever physical mobility is left or do ‘routine’ chores,  but to interact with others.  For those who need handicapped parking, it is not a convenience.  It’s a necessity.

It’s Been A Bad Few Months…

I’m so frustrated with the increase in limitations over the last few months, especially with my grandma not doing well (and wanting to see her).  I haven’t said a lot recently, but it’s not because things are better.  More things are falling apart.  My aunt called this morning to offer to come and get me to go see grandma (about 50 miles round-trip), and I can’t do it.  I hate this.  I really want to see her.  I had a cousin offer as well (and an uncle volunteered my aunt)- so several offers.  I feel SO badly for declining.  But it’s just not physically safe at this time.  :(

It kind of started with the reflux/GERD getting really bad.  I have had an endoscopy and barium swallow.  Those showed chronic gastritis and some esophageal spasms.  I still have two tests I need to get done (gastric emptying and pressure of esophageal spasms), but haven’t been able to because my spine/back and leg pain being too bad to get through the tests.  I had one test a few days ago (EMG) that showed peripheral sensory neuropathy, that is progressive.   What that means is that my limbs (mostly legs at this point) are subject to strange pain and sensations, or lack of sensation.  At some time, this will lead to not feeling my feet on the floor when walking.   That’s a safety issue.  I also drop a lot of stuff, and have more trouble opening jars, even when ‘unlocking’ the vacuum with an old fashioned bottle opener.  I’m sending for one of those gimp things for opening jars soon.

The pain in my legs has been a burning pain unlike anything I’ve ever felt.  Fortunately, it’s not constant, and mostly at night (which makes sleeping unpleasant, if not impossible). I wake up frequently to that ‘what IS that?’ until I can fully become aware that it’s the neuropathy pain.  Now, both feet are beginning to burn at night, though not every night.  It seems like it’s progressing fairly quickly.  My neurologist did the EMG (pins into legs with electricity run through them, to measure muscle and nerve responses; sounds bad- isn’t that big of a deal).  The MRI was horrifically painful, which normally isn’t the case.  I couldn’t finish the “with” contrast part, as the “without” contrast part took about 1.5 hours, and by the end of that, I was in tears.  I joke around during bone marrow biopsies- so I’m not a wimp. I was just in too much pain this time around.

Over the last several months, I’ve been having more trouble with my blood pressure and heart rate.  The first time I was really aware of my BP being low was at an oncology follow-up appointment when it was 80/50.  I’d been really tired- but I’m  disabled with autonomic dysfunction- I’m tired a lot anyway.  BUT, at that visit, my kidney  function was moderately impaired (at the levels it was at, it would have been considered Stage 3 out of 5, of chronic kidney disease).  Thankfully, with some additional fluids, I was able to get it to the vague acceptable range (normal levels are 90-100; the standard lab values only measure >60, or the specific numbers if <60).  I’d prefer to know the actual number no matter what they are.  Even 60 is stage 2.   But anyway, I dodged a bullet with that.

At that same oncology appointment, I noticed that my A1C had gone up, so got myself off to my endocrinologist to have my insulin adjusted.  With my 2016 Medicare part D drug plan, I will be able to get the “good” insulin, instead of the half-assed stuff I’ve been able to afford over the past 3 years.  Insulin is ridiculously expensive- yet until next year, Medicare has been more wiling to pay for dialysis, amputations, blindness, heart attacks, and strokes before making good, up-to-date insulin a realistic possibility.

My blood pressure meds, which paradoxically maintain my blood pressure (or are supposed to) have been adjusted three times since this summer.  I’ve noticed some orthostatic intolerance on several occasions, but once the meds were adjusted, things would get better for a while.  But it seems that no matter what the dose,  after a couple of weeks, I get symptomatic again.  When driving to my dad’s friend’s house for dinner one night, I started getting lightheaded; that is a bad situation in the car.  I got home OK, but it shook me up. I’m being referred to a cardiologist/electrophysiologist for ANOTHER work-up on this.   I’ve looked up the name of the guy I’m being referred to- and he’s a specialist in heart rhythm and orthostatic issues… perfect for what is (and has been) going on.

I need to see my pain doc, now that there are some answers as to what type of pain is going on.   All pain isn’t  equal.  What is going on is more neuropathic pain, as well as the pain from degenerating discs in my spine (neck to tail).  I’m not sure what is going to be done about that. I don’t like the spine injections.  They aren’t painful, but just don’t last all that long.  I’m not a big fan of being on “routine” pain meds, either (instead of just “as needed”), but I may have to suck it up and just take them.

So, there’s my internal med doc (primary doc), gastroenterologist, oncologist (just follow-up at this point), endocrinologist, neurologist, pain doc, and cardiologist (to come).  Seven doctors in about four months.  I loathe adding doctors to an already complicated mess, but at least until things stabilize, I just have to see them.  Fortunately, my pulmonologist (sleep apnea), plastic surgeon (scalp cysts), and dermatologist (psoriasis) get a break for now.

But the timing on any of this is horrible.  My grandma is dying (as in actively).  I want to see her, and don’t feel it’s safe to go 25 miles each way to see her.  It’s not because I don’t want to.  She was my best friend during those early years on disability when I knew nobody here (and had no access to Facebook or other online social connections and reconnections).  We’d talk about so many things and laugh about stuff in the past.  We’d also reminisce about my mom (who died in 2003).  She’s almost 101 years old, and has been the glue holding our family together.  All get-togethers and gatherings centered around her.   I have called her care-taker who tells her I called, and that I love her.   I know she knows that I do, but it’s still hard not to be able to go down and hold her hand one last time.

Frustration and Unpredictability of Dysautonomia

I’m supposed to be over at my dad’s  friend’s home, eating tacos with them.  I’d looked forward to it since getting the invitation this morning.  I took a shower (not a simple task when temperature changes are risky) and got my extra ice vest inserts packed into the insulated bag, and the ‘full’ ice vest ready to go.   I got in the car, and headed over there.  By the time I got to the first stop sign, I could already feel things changing.  I hoped that some cool air, and ‘thigh squeezes’ would change my heart rate and blood pressure (I couldn’t measure it in the car while driving, obviously, but anybody with dysautonomia knows when it’s changing).   No such luck.

I got to her street, and since I wasn’t feeling any better, decided it was better to circle around and go home.   I’ve had a mental plan for years for what to do if I get symptomatic in the car.   The air conditioner (which is usually on anyway), talking to myself, thigh squeezes, and knowing where the side streets are in case I need to pull out of traffic are at the top of the list.  There is no scarier place to have symptoms than when I’m in the car, driving.  If I have symptoms before leaving home, obviously I don’t drive- but tonight, it hit kind of fast. Fortunately, I do have enough warning before I pass out to safely pull over, but  I feel badly for being such an unpredictable guest.

During the last few months, I’ve had a lot of stuff going on that has made the dysautonomia (POTS and some neurocardiogenic syncope- not quite to the point of syncope) labile.  I’ve had a scare with my kidneys (that turned out to be just a scare, so dodged a bullet there).  I’ve had to change the dose of my primary dysautonomia beta blocker to HALF of what it was a few months ago- my blood pressure got low enough to cause the decrease in kidney blood flow and change my lab values, which is not a good thing.  I’ve had a lot of neck and lower back pain that has required some tests that didn’t show anything new (degenerative disc disease, and some bulging discs in my neck).  I still have another  test in a couple of weeks (EMG- needles in my thighs with electricity pulsed through them; I’ve had it before- it’s no big deal; nerve damage is already known- just have to see how fast it’s changing).  My right thigh is visibly shrinking in a weird, not normal way (like maybe if I were losing weight…. then both thighs should ‘shrink’ the same).  Diabetic neuropathy is getting worse with burning leg/thigh pain, as is gastric reflux.   The reflux issue has some other tests pending as well, but the ones that have been done show esophageal spasms as well as chronic gastritis.  Toast is my friend. The diabetic nerve pain is a burning like I’ve never felt before.  I have been awakened by it, and it feels like what I’d imagine if someone put some type of accelerant on the outer part of my entire right thigh, and lit it on fire- yet when I touch it, it’s numb.   I guess it shouldn’t be a surprise that the dysautonomia is going through some “out of whackness”.   A lot of other stuff is out of whack.

I hate these fluctuations and changes in the status quo.   I get used to one way of my “normal” and how to adjust my life accordingly, and then something else happens.  The whole thing gets weird again, and it’s another ‘normal’ to get used to.  I don’t like being undependable.   I’ve always been punctual and if I said I’d be somewhere, I showed up (aside from the dysautonomia and disability stuff that ended my working career as an RN). My dad is used to my 50-50 chance of showing up.  Not everybody knows this about me, and I feel bad when I bail out.

The shower could have made things less stable.   I have horrible heat intolerance, and showers can be a problem.  I generally don’t take a shower and go somewhere in the same day- I need some time for things to get back to ‘normal’ after being exposed to the warm/hot water (I like hot showers… my blood vessels don’t).   I didn’t feel bad after getting out of the shower (a bit winded, which is ‘normal’, but nothing weird).  I allowed time to rest (about an hour), so thought that would be enough.  Guess not. :(

Anyway, my head still feels a bit loopy when I stand up.   I just got done with a plate of food my dad’s friend sent over- which tasted really good, and had some salty stuff which probably helped.  I just feel bad that I couldn’t be over there with them, as we’ve had fun the other times we got together.

I’m SO Sick of Pink Cancer Ribbons… Hear Me Out, Please !!

We’re all pretty well aware of cancer.  The pink ribbons are really marketing tools- and that’s fine.  But it really chaps my hide to see the pink ones so prominently.  Like it’s the “most important” cancer… what about prostate, lung, thyroid, pancreatic, liver, bone, colon, testicular, brain, pediatric, blood, skin, and other cancers?  Any cell in the body can become cancerous.   We need PLAID ribbons.  (The rainbow has been taken).  Let everybody have equal showing in the cancer awareness campaigns.  I’d wear a ribbon that represented all cancer struggles.

I don’t have anything “against” breast cancer (my mom had bilateral mastectomies, along with lung and brain metastasis).  But what about all of the other folks out there?  Just last year, my cousin Kathy died after a 10 month hellish fight with neuroendocrine colon cancer, my dad’s friend Marilyn died after a 9 month horrible battle with ovarian cancer, and my uncle Lee died from esophageal cancer just weeks after diagnosis.  In the past, my biological father (Phil) died from brain cancer (metastasized from his kidney, dead at age 49; we never met because of cancer), a cousin’s wife (Pat) had kidney cancer that went to her liver (was also in her bladder), my dad  (adoptive guy I grew up with from the time I was 10 days old) had thyroid cancer 3 years ago, two cousins’ wives had blood cancers , I’ve had leukemia, another cousin’s husband  had prostate cancer, another aunt with breast cancer,  another one who had to deal with knowing she had genetic predisposition to breast cancer,  and there are many other relatives that I’m forgetting (or can’t remember the actual site) that matter.   Then there are the friends – several with stage 4 cancers (lung, colon, and colon going to lung and liver) who are still fighting or have done well .  And some who lost that fight.  They all deserve to be recognized for their battles.  I’m just one person who knows this many people who have or had cancer.  I’m not naming the ones who are still alive.

I have been an RN for 30 years.  While I’m disabled now, I took care of a LOT of cancer patients (mostly on a surgical floor- and we also did ‘end of life’ palliative care; we couldn’t fix them, just ease their last weeks and days).  Four stand out.  One was a Holocaust survivor with terminal colon cancer (the sweetest lady, who had more than her share of hell on earth).  Then there was the 40 year old construction worker who had just had a melanoma removed (still had sutures) when he started having headaches.  After 3 trips to the ER, they did a CT scan of his brain, and found multiple sites. He was admitted (I was the admitting nurse), and found that he had lung, bone, and liver metastasis as well…. he lived for a month. I pronounced him dead and watched the funeral home take him away.  There was the lady who had just had a baby and was having trouble breast feeding; ends up that stage 4 breast cancer was blocking her milk ducts.  She’d never see that baby grow up.  There was the lady with pancreatic cancer, who was ‘Big Bird yellow’ and looked like someone had strapped a basketball to her belly because of fluid accumulation; she had a miserable last few weeks.  There were dozens, if not hundreds, besides those four that I took care of (mostly as a charge nurse- so not direct care in some cases).   When I worked neuro, as a direct bedside care nurse, there were a LOT of brain tumor patients.  The malignant ones never ended well.  Glioblastoma multiformae (GBM) – stage 4 = grim prognosis.  The tumor has ‘tendrils’ that bore into the surrounding brain tissue to never be fully removable.  Though stage 4 in some sites is more and more treatable- much more than when I was still working- it is still generally felt that stage 4 means that is what the person will die from.  But there are never any accurate timelines; more people are living longer WITH  stage 4 cancer than ever before.

Then there are  the two little relatives of a friend of mine, just a couple of years ago-Cole and Sadie (nephew and niece) – diagnosed within weeks of each other, who both died… an 11 year old and 8 year old.  One had the same type of leukemia I had, and went to the ER on the Sunday after Thanksgiving, not feeling well since the day before; he went into a coma on the helicopter transport to a larger hospital, and was gone the next morning.  Never saw it coming.  No symptoms that were red flags.   The 8 year old survived less than a year after a diagnosis of  GBM Stage 4… St. Jude’s did what they could… but glios are notoriously tough to treat.  Then there were the kids when I was a kid- one who had brain cancer when I was in 3rd grade (he was in 4th grade- his name was Mark), a friend’s 8 year old ‘big’  brother (I was in first grade when he died- I still remember hearing about him dying.  His name was Thor.)…  Facebook is full of kids with cancer.  I can’t handle that type of grief, even if I don’t know them… what their families and friends go through is just heartbreaking.  I’ve heard parents make that guttural, primal  scream of that ultimate loss when I worked pediatrics (our PICU was connected by a narrow hall, and those sounds travelled).  The pain they feel is palpable.

I had acute promyelocytic leukemia- the most lethal leukemia if not treated (many folks diagnosed at autopsy after some type of ‘bleed’ or hemorrhage ), and the best outcome if treated- per  my oncologist.  The average survival without treatment after onset is ONE month.   I was very lucky (or more like God was looking out for me).  I had no specific symptoms- I’m disabled with a bunch of diagnoses, so I never feel “good”.  I just happened to get my annual lab work for my diabetes, and it showed a BAD ‘complete blood count’ (CBC).  Like really bad.  It took 2 weeks to get an appointment with the oncologist, and he scheduled a bone marrow biopsy for the next week.  That was 3 1/2 weeks of my month ( I didn’t know that then).  The weekend before that, I felt bad. I went to the ER, and stayed for 6 weeks, starting induction chemo.  I then had 50 dose (2 25-dose cycles of Monday-Friday for 5 weeks x 2 cycles) of ARSENIC (Trisenox- look it up ;) ).  Then another year of maintenance chemo.  My body has never been the same.  No eyebrows or eyelashes aren’t that big of a deal- but the increasing neuropathy and weird weight gain has been rough.

So, I’m not cold or indifferent to cancer.   I’m just tired of the boobs getting the press above the others.  This month, the NFL will have their players in pink shoes and other accessories (they look ridiculous).  Go figure… the boobs win out as to who gets their public support.   It’s kind of a kick in the face for those with other cancer struggles, wins, and losses.  They are ALL important.  All of the survivors and lost fighters are important.  They all deserve some undeniable recognition.  If someone sees an orange ribbon (leukemia) or yellow ribbon (pediatric cancer), do they know what those are for?   So, I suggest plaid.  Get everybody in there.  Weave them all together, since so many cancers spread.  Maybe finish them with the color of the cancer a specific person has.  But acknowledge them all.  They all matter.  Nobody struggles more than anyone else.  Everybody needs funding for research.

I will very rarely ‘share’ Facebook posts about any cancer.   I feel for those struggling with it, and for those who have lost family and friends to cancer.  It’s not because I don’t care.  It’s because I’m sick of SO many being affected.  And only the pink ribbons being ‘iconic’. Everybody with cancer matters, and deserves to have money funded into research for their type of cancer… not just the boobs.

Does It Ever End?

I’m sure the dysautonomics out there will totally ‘get’ this.   Even as an RN for 30 years (the last 11 on disability, but I keep my license active to deal with myself !), I’m constantly learning about things I never bothered with much before.  It all ‘worked’, so no need to pay attention to some stuff.  Like the low blood pressure issues.  I’ve pretty much lived by the motto that if it doesn’t cause symptoms, don’t focus on it.  Well, that’s not a good philosophy.    I found out that my blood pressure had been low enough for long enough to decrease blood flow through my kidneys, leaving abnormal renal function tests.   I’d had a few ‘foggy’ episodes that correlate with hypotension, but I’ve got dysautonomia !  I always have some vital sign parameter that is off kilter.   Anyway, some medication changes have helped, which is a huge relief.  Dialysis has always been something I would seriously have to consider if I did it or not… and if not, that means life would be short.  If I could do the nighttime dialysis at home, I’d do that.  But going out three days a week, every week, indefinitely…. uh, no.   Especially when it’s 20 below zero windchill.  Fortunately, the last set of tests were better- so a definite scare, but not a disaster.

For the last few months, I’ve also had horrific right thing burning pain at night.  I only lasted through the “without” contrast MRI (lying on my back ‘in the tube’ had me in tears…. I’ve joked during bone marrow biopsies.  The MRI pain was worse; I’ve had many MRIs in the past, and they are no big deal… I left this one in tears).  The burning comes and goes- so it’s not like it’s every night, which is good.  My right thigh is also visibly ‘shrinking’.  So, with the pain and atrophy, I’m scheduled for another EMG in a few weeks.  It scares me that I won’t be fully ambulatory for as long as I’d hoped for…  I’ve been walking more, the further out from chemo I get.  I hope it’s enough to keep me vertical and independent.

I’ve also been having some GI tests done because my GERD/reflux has been bad.   The endoscopy just showed chronic gastritis, so nothing that’s going to kill me.  That’s good :)   I’m postponing two tests at this point until the leg thing gets taken care of, since the gastric emptying test requires me to be on my back for FOUR HOURS.   Not likely to happen at this point.  Nausea is pretty much a routine symptom.   I’m not sure that swallowing the manometry thingie would work all that well.  I also need a break from some of this stuff.

In the middle of all of this, my dog needed to have a toe amputated.   It has been about a  5 week ordeal, with trying antibiotics in case the swelling was an infection, then the surgery and sutures in for two weeks.  Now, she’s getting back to normal, and will go for a much-needed haircut at a good salon this week. The toe issues started (maybe coincidence ) after going to a chain store groomer. They lied on the ‘report’ that the nails had been done… they had not.  I have little tolerance for lying.   Anyway, she’s going to be OK.

I haven’t written a lot lately.  I’m tired.

To The Lead Voter in The Parole Board, Voting About the Guy Who Raped Me

Dear Sir,

I think this is the third time I’ve sent in protests to the parole of Carl E. Chambers, who raped and sodomized me for roughly 6 hours on January 10, 1987.  It was a lovely Saturday morning in Austin, TX that quickly grew to be a matter of survival, and the ultimate nightmare.  I’ll get to what he did to  me in a minute- both during the attack and the longterm effects.   But first to Chamber’s character and history on parole.   I’m writing because I’m not sure how long I’ll be able to keep it together during the phone interview.  It might be a bit scattered.

Chamber’s first known (adult) conviction per the Parole Division Adjustment Statement I received, and how I understand it,    was in Illinois in December 1976 (for forgery)… his 5 year probation was revoked due to a burglary charge.  He got 1-3 years for that, but let out on parole.  Then, he was convicted of kidnapping, and released on parole in 1985.  He was then convicted of Aggravated Assault with a Deadly Weapon (I believe this was the screwdriver to the neck of a woman at a bus stop in Austin, TX), for which he got 3 years- but was paroled 8 months later, in 12/1986…. Thirty-nine days later, he lied to get me to pick up his infant nephew (a regular babysitting job) under the ruse of his brother-in-law being in an accident, and someone needed to watch the baby.   I loved that little guy, so I immediately went.   I was very naive, and knew nothing of his sociopathic or criminal  history, other than his sister telling me that that last charge was a situation where he’d been in the wrong place at the wrong time (he probably lied to her as well- she was only 19 years old).  I didn’t know what it all meant.  His sister (the baby’s mom) told me he’d been a problem as a juvenile, and the ‘black sheep’ of the family… he’s never coexisted normally in society.

With the last parole violation (domestic violence), he pled no contest… he seems to be unable to function in a world he’s never really been a part of since December of 1976.  At least 4 parole approvals, during which time he became exponentially more violent. He agreed to a 60 year sentence during a bizarre change of plea mid-trial during the trial for what he did to me.  He AGREED to a 60 year sentence.  I understand mandatory release, but why send this type of “human” back out into the public unless it’s absolutely required by law?  His track record is that of progressive violence.  He’s not safe in public.  He also moved to an unknown location while on intensive monitoring in the past.  As a sex offender, he was around his step grandsons (maybe he only has to avoid the demographic group he’s violated- just seemed weird) who were given scripted things to write for the last parole protest.  His wife married him while in prison for what he did to me- she is not a safe or reliable resource for not helping him leave the area he is supposed to be in, if they are still married.  Seriously- someone marrying a convicted rapist? He must have spun some tale for her…. her letter protesting his parole revocation screams of bad judgment and poor self esteem, if she thinks Chambers is suitable spouse material….

That Saturday morning in January 1987changed my life forever.  Yes, it’s been 28 years since he spent six hours continuously beating, raping, and sodomizing me with his penis, his fists, and a wine cooler bottle that had ragged tin foil around the top.  The force he used tore uterine ligaments.  The pain was so intense that all I could do was hold on to the coffee table leg, and focus my attention to the pain in my hand, so I could keep from screaming during the assault on my internal organs. He told me he’d kill me if I made noise.  I saw blood halfway between his wrists and elbows, on both of his arms, from “manipulating” my vaginal area.

About 11-12 weeks after the attack, I woke up with horrible abdominal cramping, and what I assume was a fetus dropped into the toilet.  I’d been a nurse long enough to remember what the photos of the pre-born look like from my obstetrics class.  I saw the side of the placenta that attached to my uterus- not the baby (who would have looked like a baby by that time).  I was so relieved to not have to carry his spawn… and yet it was a baby, and the only one I’d ever carry…. I still have a lot of conflicting pain about that.  How could I ever have made that child feel wanted, and even if I’d given it up for adoption,and  he/she found me later, what kind of pain would that cause the child to know that he/she was the product of a violent rape by a career criminal , and essentially unwanted?   I am not a fan of abortion- but I thought about it.   In the end, God was merciful enough to end that pregnancy.

I’d always wanted a house full of kids, and a loving husband.  It had been a dream for a long time. I was known as “the babysitter” during junior high and high school. I spent 11 years in the church nursery, for both Sunday services as well as the Wednesday dinner service.  I wanted my own babies.   I was a virgin when Chambers violated me, and nobody has touched me sexually since that day.  Check that out…. I’m a 51 year old virgin, minus the rape.   The thought of someone getting that close is repulsive to me.  I have male friends and family that I see fairly rarely that I’m able to hug, and it’s OK,. but  I never have been able to be intimate.  That dream of a family and kids was over.   I’ve missed a LOT of normal live events because of the rape.  Sometimes I feel rather defective because of that.

As I get older, I realize how much I miss having a family of my own.  I only have my dad (who is nearly 83 years old, so not sure if he’s going to be around for 20 more years, or ????), and a biological mom who is several thousand miles away.  There are some assorted, beloved cousins in other states.  When my dad is gone, I will be alone here, and can’t help but wonder what my life would be like had I not be so viciously attacked.  There are very few friends nearby, and they all have lives.  There is no other person who has really shared my life as long as my dad has (I was adopted at 10 days old).   I’d always imagined a husband and four or five kids.  But that dream died when the experience of being so violated changed my perspective and ability to trust.  And being “handled” isn’t something I can deal with.  Who would want to marry someone who freaks out at being touched in a normal type of relationship?  I couldn’t tolerate any prolonged physical closeness, or the awareness of someone else in my home- like when I was sleeping at night.

My parents and coworkers had a lot to deal with after I was attacked.  It never is just about the specific victim… the collateral damage goes on for several groups of people.  My mom was hurt deeply (she died in 2003, or I’m sure she would have sent in a letter).  My dad has read my police statement, per his request.  NO dad should have to read those things about his only “child”.   My coworkers had to deal with my inability to focus, and general “not me”.   I was asked to leave that job 2 weeks before the trial.
I still have hypervigilence.  I’m still untrusting of most people (never really know someone).  I still have vivid memories that bring me to tears.  I still remember the positions he put me in, all over the apartment, that cold winter morning.  I remember being an object.  Each time I send in parole protest letters, it starts it all over again, and yet I feel a responsibility to fight to keep him contained.  If the person who was attacked before me had done that, I wouldn’t be writing this.  My jaw is still ‘weak’ when I open and close my mouth (it literally cracks).  I still feel the scar in my mouth where my teeth went through my lower lip when he slugged me in the jaw.  I’m still triggered when I hear about something in the news, or even in a movie.  My perspective about a lot of things is different now.

These are the ‘simple’ reasons I don’t want Chambers let out.  Emotionally, it’s much more complicated.  He will hurt someone else- it’s his pattern.  I don’t wish him ill will… but I do feel a need to do what I can to protect others from him.

Thank you for your time.

The Survivor/VIctim of TDCJ# 00453210
His 60 year sentence is also a life altering sentence for me.

The More I’m on Social Media…

…the more I don’t much like people.  I don’t mean the people I actually know (though I’ve pruned the herd on Facebook recently- I mean really… who needs to be ‘friends’ with someone they have had no relationship with other than passing glances 30 years ago at church?  I keep ‘friends’ limited to folks that I have something in common with besides some mutual friend).  I’ve booted some nice people, who just have nothing in common with me, other than some superficial acquaintance-ness in high school.

I LOVE Facebook for keeping in touch with family and friends who I actually know, and who add something positive to my life.  The updated photos, blurbs about what they are up to, the chance to wish them well during good and bad things in their life, etc…. that is what I want to keep in contact about.  NOT some fringe association with someone who is negative, or has an ego larger than their zip code.

The folks who really drive me up the wall are the negative posters.   Those who find all they can about some situation or person that is negative- even if nothing of the sort is part of the actual article.  Some of this is on Facebook, and some is in the comments of articles elsewhere online.  They can’t see something positive in anything.  IF someone handed them $1M in actual cash, they’d whine about the serial numbers on the bills.  I don’t get it.   Their lives must be so miserable that to spread their nastiness is the only way they can feel better about themselves.  Pretty pathetic- and not something I want to bother with.   That last part is hard, since I do like to interact... (online is my primary source of human interaction)… it’s just gotten to the point of anticipating that there will always be jerks, and the nice folks get lost in the shuffle of bitterness.   IF someone posts a photo of a baby wearing sunglasses, some bonehead will want to alert child protective services, as the sunglasses could break into pieces that could puncture the kid’s eye…. all from a photo, and a staged one at that.  Geez- lighten up, and enjoy the cute kid !!

Why is it so hard to look for the positive?  I’m not exactly sitting here without challenges.  I’m disabled, and essentially homebound- and yet I’m so thankful that I’m still able to live independently, with a functioning mind, ability to read, crazy dog, nice TV, safe apartment, etc.  I could dwell on the negative things that have gone on in my life, but what would that accomplish?  I’m in pain every day.  I’m diabetic. My spine is deteriorating. Blah, blah, blah… but I’m here, and find joy in the simple things.   Do I miss my life before things went south?  Yep.  But things can ALWAYS be worse.  When I worked on a neurology/neurosurgery floor, and later a head injury rehab center, I saw some seriously messed up people.  Many would never function independently again.  Others would eventually die from complications from their disorders, diseases,  or injuries.  THAT is sad.

I also don’t understand the self-righteous outrage about things that are irrelevant to the person being so negative.  Who cares what someone else does?  If there is no obligation or mandate that I do what I don’t like, why does it matter if someone else does?  I can’t live any life but mine.

I’m a Christian, and constantly hear about how ‘stupid’ Christians are.   Well, I don’t find atheism to be logical based on my beliefs, but who am I to tell someone that they are of subpar intelligence because of that?  Just over a difference of beliefs or opinion?  Why?  Why make it an attack?  I’m not demanding that someone believe what I do.  How are my personal beliefs of anybody else’s concern?   Am I only supposed to express what someone ELSE finds acceptable?  Does the First Amendment only apply to certain folks (a list that changes daily)?

It’s so hard to be a part of anything where the participants are so hellbent on being cruel and condescending.  Why would I want to believe or listen to someone who hears one thing, and makes a snap judgement about me, and is always negative?  Or interact with someone who can only see things through their own limited knowledge about who or what they think I am?

Now Facebook has settings, that I can’t change, that ‘force’ me to weed through posts made by and to my friends.  People I don’t even know have their stuff on my newsfeed.  If anyone ‘likes’ or comments on something or someone else’s page, I have to see it.  That means if I like or comment, my friends are stuck with it on their page.  How is that supposed to be pleasant?  I want to keep up with people I know- not their friends who I’ve never heard of.  Getting specific personal messages on my newsfeed from my friends’ friends that were posted to them specifically seems intrusive.  The messages weren’t directed to me- why should my friends’ personal interactions be on my page?

“Old fashioned e-mail” is looking better.   And I’m so glad I have a dog to interact with.  She might not talk much, but she’s always positive ;)