I Just Need To Write…

It’s been a weird few weeks in a lot of ways, and I’ve been exhausted.  Today when I woke up, I got the message from one of my cousins that her dad (my late mother’s brother) had passed away.  He’d been sick for a relatively short period of time (well, that we know of- he hadn’t been to a doctor in almost 60 years), and was diagnosed with end stage esophageal cancer.  He was getting it treated, and long story short, they found him very early this morning just before his heart stopped.

I have so many emotions going through my mind.  First, I feel for my cousins, their spouses, and assorted grandkids and great-grandkids.  Their dad had never been easy to deal with, but he was the only dad/in-law/grandfather on that side that they’d known.  It’s a loss, regardless of how close they’d been, or what he’d been like to them over the years.  There is no chance for  additional healing at this point, with him directly.  They can only fish through their own memories and pain, and figure out how to remember him over the long run.  It might be easier to deal with anger now, but there will still be some degree of the type of pain that comes from a little kid who lost their daddy- even if it comes out sideways. The only dad they knew is gone.

I feel sad for my uncle, that he created his world in the way that he did.  He and my mom were siblings.  My mom also had multiple sites of cancer, and while she beat it, the radiation to her brain left her demented for the last 10 years of her life.  She wasn’t mean or unkind (most of the time), but before her cancer, when I was a kid, she  was hard to ‘read’ – and that was very hard as a kid to figure out. I didn’t know if she liked me, and sometimes she was unkind (though I don’t think she always meant it to be that way), and it took until my 30s to figure out that it had nothing to do with me… she was wounded in some ways that I knew about, and undoubtedly in ways I had no clue about.  Their mom was orphaned at age 6, and she had her issues with attachment (that she talked to me about- not just me speculating), which didn’t help with being a mom to her four kids- though her issues were more with ‘omission’ than ‘commission’…she was afraid to lose more people, and didn’t want to get too close.  She turned 100 years old two days ago… and today she will find out that she’s outlived a second ‘child’.

It’s sad that my uncle  pushed people away by bullying them (that was when he was being kind).  And at other times, he was very generous in hosting family reunions that were no easy or inexpensive tasks.  There were a lot of us roaming, eating, and talking through a full weekend.  Sure, some of it was to show off his home (which is very nice), but he didn’t have to do it.   I ended contact with him when he lied about a conversation that was deeply hurtful, and he called me ‘human debris’, and said he was ashamed to be my uncle.  Fine.  No more relationship.  End of story; I won’t stay through that sort of thing  (and that was a drop in the bucket compared to being raised by him),  though I did e-mail him when I found out about his illness to let him know I’d be praying for him, and if he had any questions I could help with as an RN, I was available.  I’m not sure if he answered back, or someone else did, but I got a reply.   I know I can feel OK in that I reached out.  But I’m still really sad that he died.  Mostly because he left so much unfinished business with his kids and surviving siblings.  I feel so badly for them.  None of them ever did anything to warrant the way he treated them.

In general, to folks who have pushed people away by being abusive jerks, fix it before your time is up (which could be anytime, we are never guaranteed a tomorrow).  Understand that your interactions mean something, and leave lasting impressions and scars.  The world isn’t all about you, but how you either add to it, or make things worse for others.  For those who are afraid to lose someone, so you keep people at an arm’s distance, know that you also have an impact on those around you, especially if you have kids.

For those who have been hurt by someone close, especially as a kid, know that it wasn’t about you.  It was the one who caused pain who had the problem.  You may have gotten the brunt of their character defects, but it  shows that they are damaged- it would have been anyone there at the same time if it wasn’t you.  Yeah, it hurts, is maddening, and feels very personal… but for someone who is incapable of functional, healthy relationships, it’s all they can pull off in life, and that is pathetic.  I’m not saying to not feel what you feel… I’m saying it’s not about you.   I had to figure that out before I moved back to my home town to help take care of my mom.  IF I hadn’t figured that out, I’d still be living 1250 miles away (where I’d been for 17 years).  In the years I’ve been an RN (since 1985, though disabled in the last several years), I’ve seen a lot of families’ pain that really stemmed from the hurtful one not being able to give what the others needed.  There were some who were outright sociopaths, but most were situations where the damaged ones didn’t know any other ways to interact.  It was the best they could do, and/or had no clue on how they were hurting people.  Absolutely no insight about their impact on others. It was their normal.

My uncle is dead.  My cousins are having to deal with whatever ways they grieve.  My grandmother lost another child.  My surviving aunt and uncle lost a brother- another sibling.  But, I think saddest of all, the chance for reconciliation and building good memories is gone for all of them.  I’m still reeling from three very significant deaths this year in my family (on the other side), and while my relationship with this uncle was purposely estranged to not get any more of his crap, I still feel badly.  I remember him  when I was a kid, when we got together (and I’m guessing he was on his best behavior), and it was good.   His wife/my aunt (who passed away several years ago) was  a bright part of my life.  It’s hard to explain, but it’s kind of like him dying takes away more of her.

I’m rambling… just be decent to each other, and don’t let relationships erode because of ego or general apathy about how interactions can be so deeply scaring.  Reach out, and try to make things right.  Don’t be someone who others want to stay away from.  Know that at the end of the day, you didn’t do anything to hurt another person.  Especially family.  Truly be able to rest in peace whenever your time is up.

If my uncle were here, I’d say “I wish we’d had a better relationship during these last several years, but I’d never wish anything bad on you.  Nobody deserves to have a painful death, or to have to deal with cancer.  I just wish I knew what made you OK with treating people how you did.  I have a feeling I’d be more sympathetic than angry, since you and my mom came from the same family.  Regardless of anything else, you were still my uncle.” 

To my cousins, aunt, and uncle (grandma isn’t online)…. I’m SO sorry.  I’m sure his death hurts in a lot of ways.

Pain Management for the Non-addicted

Hydrocodone (Norco, Lortab, and Vicodin’s main ingredient) has been in the news a lot in the last few months.  People are dying from overdoses.  While that is very sad, it has created mayhem for those who take meds as directed.  Those who follow the rules are being ‘punished’ because of the actions of those who don’t (yes, I believe addiction is a disease, but there is a point in the beginning where using chemicals is a choice; genetics is said to load the gun, circumstance pulls the trigger, and the addict *at first* has their finger on the trigger… addiction doesn’t happen at literal gunpoint).

Hydrocodone has been moved from a schedule III to a schedule II.  That means that any refills must have a paper prescription- no getting phoned in refills.  Those with chronic pain must now go to the MD office and get the piece of paper to take to the pharmacy, then wait for the prescription to be filled, and then go back home.  That is ludicrous when someone hurts so much that leaving home for anything is painful.  My spine is collapsing, my discs are degrading, my thighs are shrinking from neuropathy, and I’ve got fibromyalgia.  I also have chronic headaches.  I’m in a lot of pain, more days than not. I don’t remember ‘pain-free’.   And now, I have to deal with the actions of people I have never met who have emotional issues that they use drugs I need to squelch.  Those people are now dictating my medical care.

Less than %6 of those who are prescribed opiates who TAKE THEM AS PRESCRIBED ever become addicted (Google it).  So, %94+ of those who need pain meds for chronic conditions are now subject to stricter rules because of those who use them for psychological reasons/pain.  I’ve had a prescription for one form of narcotic or another for almost 20 years.  I might take the meds for a few days and then take none for a couple of weeks.   I might take one pill on those days, or I might take two or three across the 24-hour period.  Depending on the type of pain I’m having, an extra gabapentin (seizure med also used in pain control) or even Excedrin will work better than the opiate.  Depending on the headache type, a triptan works much better than an opiate.  But on those days when narcotics are the only thing that will make it worth taking another breath so I can remind myself that it will ease up at some point, I shouldn’t have to pay for what an addict is doing.

Addicts are going to get their opiates (if that’s their drug of choice) no matter what.  I see this change in ‘rules’ driving more people to use herion or other illegally obtained drugs, and anticipate notable jumps in heroin deaths and overdoses over the next few years.  I already know of an entire medical group’s practice (for one entire hospital system here) that no longer allows primary care docs to prescribe pain meds because of this new change in the law (doctors already are monitored for how many prescriptions they write for narcotics, how many pills they give at a time, etc).  So the doc who knows the patient the best isn’t allowed to determine what is best for him/her.

My primary care doc  initially wasn’t comfortable in prescribing stronger  opiates when regular Vicodin (hydrocodone 5mg w/ acetaminophen 500mg) wasn’t working (after the discontinuation of Darvocet, which was effective), so I went to see a board certified pain management doctor.  Once I had a ‘system’ of what med to use when, she was then OK with prescribing, so I could have one doctor prescribing the vast majority of my prescriptions (my neurologist is the only other one), using one local pharmacy, and one mail-order pharmacy.

I have worked as a detox RN in a treatment center.  I ‘get’ that drug addiction is a disease.  I have a great deal of empathy for those who are in treatment and making positive changes in their lives.  But their inability to handle meds should not determine my medical care.  What someone else can’t control shouldn’t create issues for MY doctor when I am able to take meds as prescribed, and have for two decades (for chronic pain).  Acetaminophen (Tylenol) is the leading cause of liver failure in this country…. why isn’t that scheduled (or withdrawn from the market)?  Alcohol-related deaths can take out entire families at a time w/drunk driving- should we have licenses for buying booze?  Why are those with legitimate, documented medical disorders that cause pain made to ‘pay’ for those who don’t use the meds as directed?

My primary care doc and pain management doc (who I only see sporadically at this point) know me better than the DEA does.  My pharmacist can vouch for no hinky requests for refills.  I’ve never shown up in an ER asking for pain meds.  I don’t crave narcotics.  I don’t take larger doses, or more frequent doses than are prescribed.  I follow the rules.  And now, especially with winter approaching, I will have to go pick up a piece of paper (getting in and out of the car is painful in the summer, let alone the cold) which, until October 6,2014, was done by phone between pharmacy and the doc’s office.  I had to go every three months to be re-evaluated (which still stands), which isn’t a bad thing.  I don’t think pain meds should be thrown around as if they are insignificant… but  addiction isn’t my problem.  Pain is.  There is a huge difference.  I don’t even let myself get to the point of physical tolerance (when someone takes something as prescribed, and the body becomes used to it being there… withdrawal symptoms can happen if the med is abruptly stopped- and that is not the same as addiction).  There is a gross lack of awareness between addiction, dependence, abuse, and tolerance- and I think that applies to policy-makers as well.

No law is going to save people from themselves if they either don’t want to be saved, or don’t see that they have a problem.  They might not ‘get it’ on the first run through rehab or 12-step meetings… but those who keep at recovery will eventually get there, and be clean.

 

For those who are now in a position of not having a physician who will prescribe pain meds (whether from fear, ignorance, or restrictions from his/her employer- you may not know why they have changed their policies), here are some tips from an RN of nearly 30 years, who has taken care of addicts, chronic pain patients, and lives with chronic pain:

1.  See ONLY a board certified pain management doctor for pain control.  They often have ‘rules’ such as random drug screens, no dosage change over the phone, limits as to how many months before actually making an in-person appointment (vs. picking up the prescription from the desk), etc. Do NOT see a doc who asks how you will pay, writes a prescription, and has a line around the block…. Do. Not. Go. There.   :o

2.  Use only one pharmacy (two ONLY if you also get meds from a mail-order pharmacy for other chronic conditions).  Let your doctors know which pharmacy you use, and offer to get copies of records if they want them.  Pharmacies are bound by HIPAA (privacy laws), and might not be able to tell the doc asking what other docs have prescribed (if someone from the same practice is on call, they probably can, since they are acting on your regular doc’s behalf for you).

3.  Don’t dramatize pain.  Tell the doctor where the pain is, how bad it is, when it is better, when it is worse, what helps, and what makes it escalate.  You may have pain for the rest of your life- don’t wear out the extreme descriptions when you have 30-65 or more years to describe it.  Sometimes letting your doctor know what the pain keeps you from doing is helpful…. those pain scales are kind of useless for chronic pain.  But, if you tell your doctor that when it’s moderate, you have to postpone laundry, or if it’s moderately severe, you have to cancel appointments, that can give better information for chronic pain.  It’s way different than acute pain.

4.  Agree to get tests done to more clearly identify what is causing pain.  If you refuse to get diagnostic tests done, that can indicate that you know that nothing is going to show up.  Not all disorders show up on tests, but working with your doctor when they want more information via testing will go a long way.

5.  NEVER change doses or frequency without talking to the doctor who prescribed the pain meds (or any meds, for that matter), unless you have been given specific instructions.   There are some pain meds that have a very narrow window between effective dose and the dose that will cause you to stop breathing.

6.   Don’t ever forget the good parts of your life.  You are not defined by your pain or any other medical conditions.  You decide if you are happy or not.  You decide if you focus on nothing else.  I know that there are days (and sometimes weeks) when you really can’t focus on anything else for much of the time… but when you can, take advantage of those days and be thankful for your pets, family, friends, the ability  to still work (I’d give just about anything to still be working as an RN), your interests, etc.  Your attitude is completely in your control, even if nothing else seems to be.   ;)  <3

Triggered ER Memories…

I got a canned e-mail from my dad’s medical provider, asking for one of those Press-Ganey surveys to be filled out.   I don’t do those.   They’re a colossal waste of time, and the results are used ‘against’ nurses in ways that are demeaning of the job. They’re a popularity contest for healthcare. Nurses aren’t concierge staff… they’re there primarily to give medical care.  Not have to be subjected to some very fortunate person complaining about not getting coffee ‘sooner’, totally oblivious to the reason it was ‘late’ was that the nurse was doing CPR on someone two doors down.   Anyway, it got me all stirred up, and I wrote the following before seeing that it was a ‘no-reply’ e-mail.  Sneaky them :p

–I’m xxxxx’s DPOAH, and deal with all of his e-mail (I’m his daughter- and a disabled RN). He is pleased with his care w/Dr. Kxxx- no issues whatsoever. I go to some appointments with dad, and also have Dr. Kxxx as an oncologist- great folks in the office area, lab draw folks, and Dr. Kxxx himself. Couldn’t get much better.

As an RN (I still keep my license), I have a general loathing for Press-Ganey, since it doesn’t consider all factors in someone’s care (especially inpatient- like if someone complains about their coffee request being slow to be delivered, while the nurse is tending to someone who is either trying to die, or has coded somewhere down the hall). Totally bogus complaint in the GRAND SCHEME of things… our society is too much about “me”, and not about the entire picture.

IF there are issues, I have no problem contacting the hospital directly. It’s really none of Press-Ganey’s business in my opinion. If you can tell me why their butting in is so important, I’m teachable !

I do have some compliments regarding a couple of tests I had a week or two ago. I had a abdominal and pelvic CT w/contrast and a CXR. The nurse and techs in both departments were outstanding. Lisa and Shannon were in the CT department- both very personable, friendly, and gave great instructions. They had the perfect balance between respecting my knowledge as an RN since 1985, as well as informing me of what was going on (and what needed to happen since I’m on metformin- and getting a follow-up creatinine done 2 days later). Lynette was in x-ray, and came SO quickly to get me for the CXR- very professional as well, and also kind. They made the inconvenience of having to drag my ratty body away from home much less unpleasant. My overall experiences in the outpatient/testing departments have always been good- every last person has been pleasant and professional. I didn’t feel like they were trying to suck up, so that Press-Ganey would be happy… they were genuinely doing a nice job.

I have had my share of nightmares in the ER there…

I haven’t been to that ER in a several years- so this might be outdated (wanna be fair). My experiences there in the early to mid-2000s were horrific. I was considered a ‘frequent flyer’, though many times, someone else called 911 because I’d lost consciousness (I have dysautonomia and documented epilepsy among other things). I could give you a laundry list of abuses and negligence in that place. Maybe it’s better now- I hope so. When I got there because I had actually been awake enough to call for help, I was following my MD’s instructions for when to get help (my blood pressure would drop into the 50s systolically- and it wasn’t safe to NOT get help when just lying down wouldn’t do anything). I still was verbally demeaned- for following my doctor’s instructions.  It’s so important for those in the ER to know that just because THEY aren’t familiar with a diagnosis doesn’t mean that it’s automatically some psych disorder, and they don’t know everything about the person, just because they have some vague medical info on them.  I never asked for pain meds, never had a squadron of unruly family around (never had ANYONE around), never even asked for help to the bathroom- which was partly because the call-light was nowhere to be seen, etc. I was told I was a “wasted bed”, and that “seizure patients never follow up”; (I actually had monthly appointments with my doctor at that time because things were so unstable). It got so bad that I learned to put in my own small gauge NG tube and put in 1/2 strength Gatorade by gravity, to increase my fluids- and take my chances at home. My doc  wasn’t thrilled with that (but I know how to manage an NG safely)- yet she knew what had gone on in the ER from what another doc had told her (he was one of the few nice docs). It’s amazing what medical equipment was available on eBay back then.

On April 1, 2007, I was brought in (BP dropped again), and by the time I got there, with the jostling around, it was better, but I still didn’t feel right… I had had a few weeks of weird symptoms that weren’t quite my ‘normal’ weird. The doc on that night actually refused to examine me. He wouldn’t repeat the BP (meant pushing a button- and he didn’t even have to do that; a nurse was near the monitor). I continued to have odd symptoms after being sent home, and eventually had substernal chest pain radiating into my neck. On April 11, I called my doc’s office and was told to go to a different hospital,  and tell them about the chest pain; THEY would take care of me. Tests showed that  I had multiple chronic, sub-acute, and acute PEs in all three lobes of my right lung and R PA (pulmonary artery). I spent 17 days in the hospital getting regulated on warfarin. The chest pain was from my lung pushing into the apex of my heart. That ER doc’s personal ASSUMPTIONS  at St. Xxxx’s could have cost me my life. As it turned out, it was ‘just’ another blow to my feelings as a sub-human. I didn’t have the typical PE symptoms until the 11th (actually the night before- but I wanted to talk to my doc about what to do since going to St. Xxxx’s ER was just a set-up to be blown off and humiliated).  And the doc didn’t bother to see WHY I’d been there “too much” (his words) in the prior couple of weeks.

Being considered a psych case, I was sent home unable to walk one time- crawled into the cab, then crawled to my front door. Another time, I was put in a wheelchair van, and sent home- if I needed a wheelchair to go home, how was I supposed to manage at home. Alone. ?  One doc began to intubate me without checking to see if I was even awake (I was- I’d just regained consciousness, and saw him walk in the room- alone, no help for suctioning, no meds for a genuine intubation, no indication of what he was going to do)…. he knicked a tonsil going in, cutting it, and setting off my gag reflex- so then I was vomiting blood. A nurse came in, and he eventually pulled the laryngoscope out. He asked me if I’d OD’d (a common assumption- though no drug tests were ever positive), and I said no. He told me that’s all I had to say… he never asked me anything!  I didn’t know what he was going to do (he was behind my head- my eyes back there don’t work well). Then left the room. I was so embarrassed to have vomited- but I guess they call it a gag reflex for a reason.  That nurse was very kind as she helped me get cleaned up… she must have been new.

A nurse put a Foley in one time (I’d lost consciousness at a neighbor’s home, and she’d called 911… I’d had no presyncopal feeling -which I generally did- just awake one minute, and about 3 hours later waking up in the ER). The nurse blew up the catheter balloon up ON my internal sphincter. I said it hurt, and was trying to tell her it hurt WAY more than it should- and she turned around and walked out of the room. She just left.  Absolutely no acknowledgment of what I was saying, yet she was looking at me; she heard me, and saw me trying to move the catheter.  I managed to push it in far enough to actually be in my bladder.  It took 4 liters of fluid to get my systolic BP to hit 80…. I was sent to ICU, and just managed to avoid dopamine (which could have been a disaster for someone with dysautonomia).  I was admitted as an OD- yet NO drug screens  EVER showed any type of drugs.  Really?  Even with evidence, I was still some loathed OD patient?  My doc came to see me the next morning, and told me she’d see if she could enter a note to negate the OD diagnosis.

These are a few things that I will probably never forget… and the ER at St. Xxxx’s still scares me. I sent a few letters to the customer service person (whatever they’re called) at the time, and got the canned letter of ‘we strive for excellence in patient care’, blah, blah, blah. Nothing ever changed, because I was seen as a nut job. NO psych history, no drug abuse, no ODs, nothing psych related at all. Just judgmental nurses and docs who saw me too often for their liking. I (me, myself- no doctor) eventually figured out a medication interaction that was contributing to some of the BP issues (the dysautonomia won’t ever go away- but it helps to not have interactions messing with it). I also started going to another ER if I had stuff going on that required an ER (after the PEs, there were some other incidents of chest discomfort/SOB, as well as hematuria one time, requiring some IM vitamin K, and an overnight stay for a couple of tests and IV antibiotics for a UTI). I’m lucky I went there when I was having symptoms that were eventually diagnosed as AML- subtype M3 (APL). I was there for 6 weeks in isolation, induction chemo, and started 19 months of daily chemo of some type (except for ‘scheduled breaks’ and when I had shingles on my butt). I don’t have confidence that St. Xxxx ER docs would have bothered to check things out. And, I could have ended up like Jeannie Hayes- the WREX anchor who died 2 days after officially being diagnosed, after a brain bleed.

As an RN, I know that some patients are annoying, but that doesn’t mean that there isn’t some genuine medical issue going on as well. I did my best to not bother the ER staff. I did anything they asked of me while I was there. Most of the time, I didn’t make the call to be sent there, and when I did, it was because of my personal doc’s parameters. Nobody deserves to be treated like they’re a crazy HUMAN being, and waste of time. I think some of it is the age of many of the newer nurses, and the overall mentality that ‘work’ is a destination, not a verb. I don’t remember a single nasty tech, lab person, etc… it was always the docs and nurses…. very sad.  And even if I HAD been someone with some psychiatric issues, does that mean that subhuman care is justified?   People ask why those who do have mental health issues don’t get help… I can guess part of the reason.  The humiliation isn’t worth it. 

Anyway, I’m sure this is more than you wanted to hear. I don’t do Press-Ganey, since they don’t address issues I’ve had. They run a popularity contest, and I’m not interested in those.

Have an enjoyable week, and maybe remind the ER staff that they know nothing of the patients’ entire lives… they see a snapshot of a bad time. And regardless, they still don’t deserve to be belittled, or even physically injured because of their prejudice and assumptions.—-  (end of ‘note’)

ER staff gets very little information about a patient’s entire life- or even enough to make a true assessment (or judgement) about the person.  They see symptoms and test results, and whether or not they like the ‘diagnosis’ of patient who is before them.  It’s unprofessional and abusive to not treat someone with compassion.  If it was their family member being talked to in the same manner, they’d be outraged- yet they feel it’s OK to do it to strangers.   I realize that there are some amazing, compassionate emergency rooms out there, with incredibly kind and patient staff nurses and doctors.  I commend them.  They have to deal with whatever walks in the door- and that has to be difficult.

IF it becomes so easy to judge an entire person on a diagnosis (and be less than humane), it’s time to find a new job, or another area of medicine to work in… maybe the morgue.   ;)

Sometimes Being Homebound and Isolated is Really Hard

Considering what has gone on with three people who have been very important in my life this year (they died), I have to know that I’m very fortunate.  Two had battles with horrible cancers between 9 and 10 months long, and one had a sudden collapse with an aortic dissection, but lived two more days…. she had been over a few weeks earlier talking about limited time. Maybe she know something was up, or was just being realistic that at 89 years old, she wanted to get things in order.   We had a really nice visit that I’m so thankful for.  The one who had the 9 month battle with colon cancer is a cousin I had a lot of  phone and e-mail contact with during her horrific struggle.  The other was my dad’s lady friend from church;she and  his first cousin (with the aortic dissection) had services last week.  I wasn’t able to go to either, but did at least meet the lady friend’s family, who I’d heard about for years, and felt a need to pay respects to them; we’d all heard about each other for years. I couldn’t stay long, but at least I popped in after the service for a few minutes.  I will miss them especially during the holidays, but also in general, as they were either family, or just about, as she and dad were buddies for church dinners, going out with friends, etc.

Overall, I really do realize how fortunate I am, but I don’t have many perky days when all is sunny and wonderful. There are some times when I just get overwhelmed when I think about what I used to be like.  Other days, I do my best to get by, and I do still have a lot that I enjoy from home. I still get to help out family and friends with medical  questions/translations- and I’m very glad to do that.  It helps me feel useful in some way.  And I get rather nostalgic about the days when I was working 3 12-hour shifts a week as a charge nurse in some sort of facility (hospital, drug/alcohol rehab, adolescent psych), or the Monday-Friday desk jobs entering assessment data into the computer for Medicare reimbursement and/or care planning for skilled nursing facilities.  I also did some stints on neuro floors, head injury rehab, and pediatrics- so a greatly varied career that I miss.  A great thing about nursing, especially in Central, rural Texas between 1985 – 2002, is that when I’d get bored with something, I had no problem finding another job within days.  Sometimes the offers were waiting for me on my answering machine when I got home from the interview.  Being an ADN, and not having a 4-year degree was never an issue, either as a staff nurse, charge nurse, weekend supervisor (only RN in the building/facility), or department head.  I was lucky to graduate from nursing school in 1985 when we were expected to know how to do procedures and skills, or we didn’t graduate.

Then came disability in 2004.  I fought through 8 years (starting in Texas) of trying different medications to regulate the fainting and weird episodes where I turn beet red, then a bluish red, before becoming pale and cold like a corpse. For eight years, I muddled through, and even had several decent years after the neurologist down there wanted to try an off-label medication.  By the time I was told I was no longer OK to work (by my boss in IL in 2004), it crushed me.  My identity had always been as an RN.  I didn’t have a husband or kids, so no other roles.  My relationships were all with co-workers in Texas ( even though I’d moved back to Illinois, where I was basically thrown away- nobody returned calls, and one former coworker went out of her way to avoid me at the grocery store).  I’d gotten sick- I hadn’t embezzled anything !  I guess it’s a Yankee thing. :/

That started some very chaotic years of figuring out what meds would help with the worsening symptoms (fainting more often, with some injuries including a concussion, and torn meniscus on my right knee requiring a knee replacement, some very strange medication interactions that caused a small stroke, many blood clots in my right lung, and ultimately leukemia (AML, subtype 3, or APL) which required chemo that worsened the autonomic disorder with thigh atrophy and increased sensitivity to heat).  I was a ‘regular’ at one of the ERs early on, and they treated me like trash.  Had I not gone to a decent ER with the blood clots in my lungs, I likely would have died – they were numerous in all three lobes of my right lung and pulmonary artery, and in various acute, subacute, and chronic stages.  The apex of my heart had pressure against it from my lung pushing into it.  It was bad. I only went to the hospital because I thought I was having a heart attack.

I’ve been essentially homebound for ten years.  I’m not sure that many people really understand what that means when “friends” here (coworkers) disappeared as soon as I left the parking lot on my last day.  I do have my dad, and a couple of friends here- one in particular makes an effort to come over periodically, and has done a LOT of work helping me get things organized so that I can get “stuff” minimized around here. She has been incredibly helpful once we found each other again on FB a few years ago.  I have been invited to family holiday parties- which I can attend one of, after everyone eats, since hot food in close proximity to body heat of other people is a problem- so I go when I’m less likely to stick out as being totally weird.  I really like that family bunch, and I hope I don’t come across as not liking them.  I just can’t tolerate a room over 66 degrees.

There are days when I don’t hear another human voice other than my dad (who is 82 and healthy, so I’m very thankful for that). We try to do daily “attendance” checks with each other, and he is really a huge asset in my life for many reasons… he always has my back.  I know he will never give me bad advice.   I might not see another human more than once a week (again, dad) for a few weeks at a time.  The phone rarely rings… usually it’s dad, my birth mom, or a reminder for  a doctors’ appointment or test (this week it’s an abdominal/pelvic CT for some intense bloating likely related to the autonomic problem).  Facebook is my primary form of contact, and I’m incredibly grateful for that; prior to getting this laptop from my birth mom and cousin, I was even more alone… now I can at least keep up with people I’ve known for years, whether from work, family, or childhood.   I challenge anyone to unplug the phone, have nobody show up at their door, and not hear another live voice in person for days (and occasionally weeks) at a time. It takes getting used to- and even now, it’s still hard.

I miss seeing co-workers and patients.  I miss being able to just go out and do something social without having to deal with the logistics of cooling vest equipment, distance from home, how I’m going to get there, can I leave if I need to, etc.  There are no ‘going out to lunch’ days (who would I go with?).  My dad is the one I go places with on the days when I can go (and I know I’m the most undependable ‘date’ with frequent last minute cancellations because of symptoms of some sort).  He knows that when my cheeks turn a deep bluish-red that it’s time to go.  And he’s always willing to take me anywhere.

People don’t understand that I can’t unload the dishwasher and fold laundry in the same day, or I end up with spasms from the base of my skull to my lower back, and am useless for a day or two.  Chronic pain isn’t ‘seen’.  Fibromyalgia and degenerative disc disease are chronic and  the DDD, will get worse (degenerative is a clue)- so I pace what I do as much as possible.  I miss the days when I’d set my mind to doing something around my apartment, and not stop until it was done.  That’s long gone.  I ‘look OK’, so I’m not sure people understand that I really am doing the best I can.  I live independently (getting many things delivered to my apartment from Schwan’s- frozen foods, Amazon, and Walmart).  I go to the store about once a month… maybe twice if it’s a good week about halfway between disability checks.   I still want to do as much as I can myself, so I don’t lose any more muscle mass.  The initial chemo took up about 20 pounds of muscle, and then the neuropathy in my thighs took much more – while I gained weight on chemo (not easy for my head to deal with, or to get rid of the poundage).

I’ve written about the expenses of Medicare and medications not covered in other posts. Buying insulin from a part D plan guarantees that anyone on it will go into the dreaded ‘donut hole’ where meds are NOT covered by the Medicare drug plans.  Most diabetics are on several medications.  The donut hole is dangerous.   The ‘good’ insulin is upwards of $200 per vial….between the two types of insulin I use , if I got it from the part D company, that would be $600 a month just for that- minimum… Thank God for the  cheap stuff from Walmart; I’d be sunk without it.  I don’t understand why insulin (the better stuff ) – a drug that is absolutely necessary for many diabetics- is so  unattainable.   I worry about this sort of stuff…

But mostly, I miss the things that I used to take for granted… seeing coworkers, having daily contact with other humans, having a purpose that felt like ‘me’ (being an RN), and not having to plan for every contingency every time I leave the apartment, even if it’s only for an hour.   My short term memory and word-finding are still not back to normal after chemo.   Going to the store for fresh produce every week has been long gone.  I might figure out something with dad, to go with him a couple of times  a week to get fresh fruit and veggies.

I really do have a LOT to be thankful for.  I have survived a lot.  During my 55 year old cousin’s final weeks, she weakly asked why I was allowed to live and she wasn’t- not in a nasty way, but in a tone that just sounded like she was trying to make sense of things.   I don’t know.  I know I must have some reason to still be here.  I hope I can make a difference somehow.  The blog helps… I keep track of my stats, and more than 100 countries have hit more than 16, 000 times.  At least people know I’m still here… that and Facebook. And my dad and a couple of people I see every month or two.  That they take time out of their busy lives (and they are busy !!) means a lot.

I’ve got God, my dad, my birth mom, folks on FB, and my dog- who is my main companion and pretty good at it :)   So, even though I miss what my life was, I’m at least alive, and still able to live alone, and figure out how to get things I need.   I truly am thankful for that. I know that there are others out there who struggle a lot more.  I remember those people I used to take care of that were never going to live on their own again.  I don’t know where the dysautonomia, diabetes, degenerative disc disease, degenerative  joint disease, or lung scars from the clots are going to lead me… but I’m sure I’ll figure it out.  I always seem to land on my feet ;)

Dysautonomia Awareness Month…. I’m Very ‘Aware’ All Year, Every Year

OK.  October is Dysautonomia Awareness Month… With Breast Cancer Awareness Month at the same time, nobody will care about dysautonomia.  Men are more than likely behind the sanctity of boobs, so along with being a rare disorder that people really are NOT aware of, there is the whole ta ta thing that people go all pink for, and dysautonomia remains a mystery to most, if they ever hear about it at all.  Don’t get me wrong, I’m not ‘against’ cancer awareness, but who on the planet with a pulse and working brainstem isn’t aware of  breast cancer?  I’ve known and do know many women with breast cancer (including my mom, who died in 2003 after surviving multiple cancer sites for 17 years, dying from something unrelated). I understand that any cancer diagnosis is a nightmare (I’ve been there, with leukemia).  (And why is there no blue ribbon with balls on it for testicular cancer awareness? Ladies? ).   Anyway, dysautonomia is something that I’ve lived with for decades- probably longer than it was diagnosed.  It didn’t flatten me until 2004.  And most doctors are clueless.  The general population can’t even pronounce it.  Dis-auto-gnome-ee-ah.

Every morning, I wake up not knowing if I’ll be able to actually get out of bed and begin my day without my head spinning as my blood pressure tanks.  Will my peripheral vision begin to narrow, and will my hearing get muffled?  Or will I actually be able to get up and not have to lie down again?  When I get in the shower, will I get that ‘sweet spot’ in the temperature of the water where I get a nice hot shower, or will it be too hot, and once again start the process of passing out?  My heat intolerance isn’t about temperature preference or comfort, it’s about staying conscious.   My thermostat must stay around or below 64 degrees, or I start to have symptoms.  Fifty degrees is much better if I’m outside.  I wear a light snap-front sweatshirt, left open,  when it’s in the 40s.  If I leave home to go into another building where I have no control over the thermostat, I have to wear 5 pounds of cooling vest inserts.  To stay conscious.  I’ll start to ‘burn up’ for no good reason (and this is NOT hot flashes- I’ve had those, and they are totally different).  Or I’ll get so tired, that doing anything is overwhelming.

I ‘look OK’… aside from being overweight, and having very few eyebrows post chemo (which at this point has to be permanent), I look fine.  That’s all well and good- but it can also be very frustrating when trying to explain why I can’t do something.  I also have multiple ‘other’ medical and orthopedic problems (discs, knees, spine, epilepsy, diabetes, yadda, yadda, yadda…), so when I’m walking I look a bit gimpy, but the dysautonomia is totally invisible if I’m not lit up like a red stop light from severe flushing when the dysautonomia spells kick in.  My thigh muscles have atrophied (probably from diabetes and chemo), which looks weird, and makes walking quite tiresome.  But people really don’t ‘get’ the whole dysautonomia thing.

The autonomic nervous system controls involuntary body functions- blood pressure, heart rate, breathing, flushing, muscle/brain signals, etc.  There are many ways this can all go wrong.  Initially, I had problems with passing out, as well as my right pupil dilating.  Then my gait would get wonky, and eventually I’d keel over and sleep hard for hours.  Temperature dysregulation hadn’t shown up yet.  I was in Texas when this all started, and I did fairly well at first.  When it was first a ‘thing’, I was living in a house (with no central AC- just room units for at night) with a coworker to share expenses (perfect situation; we had opposite schedules, so it was basically like living alone).  My housemate would hear me hit the floor from her room at the other end of the house, and find me passed out on the wood floor.  I thought I was just ‘nervous’ after a recent hospitalization for eating disorders, but she said that there was nothing  ‘nervous’ about me that she’d seen, and she really thought I had some type of medical issue.  One  night I couldn’t get up off the floor like usual, and I agreed that she could call 911.  That started the whole testing process.

I was lucky that I had a neurologist who thought I had dysautonomia. She sent me to see an electrophysiologist (EKG specialist) in San Antonio, who ended up doing a tilt table test.  My blood pressure dropped to 44/16, and heart rate dropped into the 50s (heart rate should go up, and compensate for a low BP, though a BP that low isn’t usually associated with ‘coming back’).  I was put on the first of several meds, and sent home (driving myself 60 miles after nearly passing out).

I continued to have issues with work, but eventually meds were sorted out, and I was doing well enough to get my work done. Additional disorders were ruled out (MS, myasthenia gravis, pheochromocytoma, brain tumor, stroke, etc).   The nursing home I went to work at had some very accommodating supervisors, which made a huge difference in not being panicky when I felt something coming on (the prior place did a lot of ‘threatening’, and since I was the only RN on campus at a drug/alcohol detox center on weekends, I understood the need for a conscious employee :p – but I didn’t want to stop working; being a nurse is who I AM).  I had a mattress overlay in my office at the nursing home,  to put on the floor if I needed to lie down.  I also had a fan from home, as temperature had begun to be something I had to keep ‘moderate’.  If an episode hit, I lied down; when it was over, I finished my work.

Fast forward, and I’m back in Illinois in my hometown, trying to keep things together at work, and it just started falling more and  more apart. I was hauled out by ambulance 10-12 times in a month or so at another nursing home (office job), and it was clear that I wasn’t able to keep working. I’d left a pediatric hospital job since I was terrified I’d get dizzy/lightheaded when handling very tiny babies (or larger, heavy ones), and that just wasn’t something I was willing to risk (along with some other issues with the job itself).  I had to deal with a new neurologist on my insurance plan at the hospital, who seemed clueless.  Once on disability (and Medicare two years after that), I found a neurologist who did know about dysautonomia, as well as a internal medicine doc who was quite familiar with the disorder.  With multiple medications (roughly 25 pills/day on a good day; more if not- and 3-4 shots of insulin) and total control over my thermostat, I’m able to sit up for several hours, but  I have to get up every few minutes to avoid any ‘pooling’ of blood in my legs, or I’ll enter the ‘pre-syncope zone’ when I stand up.

Now, my ‘normal’ consists of having the air conditioner on when it’s 30 degrees Fahrenheit outside.  When there is snow piled up outside, my AC unit is the only one with space around it where the snow has melted from the heat generated by the AC.  I leave home about 2-3 times a month- monthly grocery shopping, a doctor’s appointment here and there, and maybe a short trip to the grocery store about half-way between disability checks, for milk and/or bread.  Everything has to be ‘paced’.  If I do laundry, I can’t unload the dishwasher.  If I take trash to the dumpster, I can’t vacuum in the same day.  And I struggle to maintain any muscle tone, to avoid getting worse… but the chemo I had to have to survive the leukemia has caused deterioration.  I guess there are tradeoffs with everything.  Nothing is taken for granted.

Being on Medicare has been a horrific eye-opener.  I used to do the assessments that determined reimbursement for Medicare patients at the nursing home I worked at in Texas.  I was superficially familiar with Medicare.  Then I was on it.  Medicare is expensive.  There is the part B (doctors’ office and equipment/supply part) monthly premium (about $110).  There is the supplement plan since Medicare doesn’t cover huge portions of hospitalizations and tests (so add another $325 per month).  The part D (prescription plan) is about $75 per month, and between over the counter medications I MUST have, as well as paying out of pocket for insulin, that adds about $125/month (I’ll get into insulin in another post).  SO if all goes well, $635/month goes out the door for medical expenses.   That pretty much ensures no out of pocket expenses for doctor’s office visits, tests, and (knock on wood) hospital costs.  When I was in for 6 weeks for leukemia in 2010, the bill was $300K…. nearly 1/3 of a million dollars.  I will make my last payment on what they didn’t write off this month.  Four and a  half years later.  That’s not included in the $635.

Dysautonomia can be mild or fatal.  With the chemo causing deterioration, and knowing what I was like beforehand, I don’t think I have the fatal type (Johnny Cash did).  I have the invisible, life-altering, disabling, survivable kind.  Some symptoms may be worse than others on different days.  I can have one cheek very hot, and flushed to almost a blue-red, while the other is cool and has normal coloring.  I can have blue fingernails, not from lack of oxygen, but because of constricted blood flow.   My heart rate has dropped into the 30’s for no good reason (that bought me 5 days on a cardiac floor with nurses who were very nervous about the epilepsy- padding the side rails and putting a bed alarm on my mattress that went off if I got up to go to the bathroom- and GADS, they panicked when I got up to walk in the halls for some type of activity one night…. how did they think I lived at home?  Alarmed, padded bed?).  Sometimes one arm is flushed and hot, and the other cool and pale.  I’ve looked ‘dead’ per one former supervisor, with breathing so shallow and extreme paleness, it scared her many times.  I live alone, so have had to learn what sets me off… sometimes it’s as simple as a ‘scare’ on a TV show that wasn’t expected.  But heat and pain are my main triggers.  I’m in constant, chronic pain- that’s harder to control than the temperature.

Some people have POTS (postural orthostatic tachycardic syndrome), which causes symptoms if someone is standing. At all.   Their heart rate goes out of control simply by being vertical. Lots of folks with that need wheelchairs for safety.  There is neurocardiogenic syncope- which is actually a simple faint, until it’s a pattern.  There is pure autonomic failure – where nothing works right most of the time.  Shy-Drager syndrome is one of those total failure syndromes, and even saliva production is involved.  Dysautonomia isn’t one thing.  It’s a combination of symptoms that are generated by an abnormality of the autonomic nervous system.  Some are relatively minor, and others require feeding tubes, and other external measures to make it survivable.  More people have dysautonomia than are diagnosed, per research estimates. It can affect any age group or gender, though females tend to be diagnosed more often.  It can be seen as a conversion disorder or other emotionally based problem, which causes improper diagnoses, and completely inappropriate medications.  I encourage anyone who finds their symptoms listed in the informational links to talk to their doctor.  There isn’t a cure, but it’s generally not fatal, and can be treated.  Getting used to the new normal is the hardest part, as is not being understood.

See the following for more information:

www.ndrf.org 

www.dysautonomiainternational.org

www.dinet.org

 

 

 

 

Honoring Abusive Parents… Does God Want Us To Throw Ourselves Under Their Toxic Bus?

I pray that God gives me wisdom especially as I write this post…

I’m very fortunate to have a dad who has my back, is fun to be around, and with whom I can talk about anything.  Having a relationship with him as an adult has been a lot of fun.    If/when he gets upset about something, he says what he says, and it’s over.  He doesn’t hold grudges, and generally forgets he was ever upset.  He doesn’t hold my emotions hostage. He doesn’t guilt me into anything.  I do often feel badly that I can’t spend more time doing things away from home, due to the dysautonomia, but he understands that I will do things when I can- and we enjoy those times.  Even when I was a kid, he never did anything that wasn’t in my best interest.  I didn’t always like discipline, but it was swift, to the point, and never left a feeling of shame.

My mom wasn’t so pleasant when I was growing up.  She wasn’t really ‘mean’, but she was broken. There were some things that were done that were most decidedly unpleasant, and if I had kids, I would not have repeated them.  But mostly she was broken.  She had some intense losses (two newborn sons, two years apart, just three years before adopting me). She was terrified of doing something wrong, and of losing me, so some of her ability to ‘attach’ or bond was damaged.  It wasn’t personal, though as a child, it felt that way.

It wasn’t until my mid 30s that I figured out that all of that was her ‘stuff’.  It wasn’t about me- even though it had a huge impact on me. Her mom was orphaned at the age of six, and had her own issues with attachment (she discussed this with me several times), and she deliberately didn’t allow for much closeness, so I wonder if my mom had any frame of reference for how to parent.  No kid comes with instructions, and not all parents have much insight into their own ‘stuff’.  I do know my mom loved me, and she did many things with and for me… but verbally, there wasn’t much clue that she liked me.   Basically, she did the best she could, with her own ‘stuff’ coloring her emotions and interactions.  I gained a lot of compassion and love for her, by understanding that whatever was going on wasn’t about me.

Being a Christian, it can be very frustrating and confusing to deal with abusive/neglectful/hurtful parents when so much is said about honoring one’s parents.  But does that include overtly abusive parents?  From what I’ve found, the answer is both yes and no…  We aren’t expected to obey demands that go against what God’s Will is for us (He doesn’t want us to be continuously damaged and tormented).  But there is a difference between our expectations as children and that of the adult child/parent relationship.   If a parent is acting within God’s expectations of a solid, loving parent, there probably isn’t an issue about honor, respect, and love.  But for the parent who isn’t able to understand that demeaning, demanding, and destroying their children’s emotions, and the relationship in general, I don’t believe things are so clear.   That abusiveness isn’t from God’s instructions on how to parent (Ephesians 6:2).

Here are links that help with Bible verses, regarding abusive parents, and adult children (remember, that these apply to the abusers as well as anyone who is a parent):

http://www.luke173ministries.org/537996

http://bible.knowing-jesus.com/topics/Abusive-Parents

http://www.gotquestions.org/honor-abusive-parents.html

Looking at the word ‘honor’, here is what Merriam-Webster has to say :

1. respect that is given to someone who is admired

2. good reputation; good quality or character as judged by other people.

3.  high moral standards of behavior

There’s nothing about throwing ourselves under the toxic family bus.

 

www.merriam-webster.com/dictionary/honor 

When there is a toxic relationship, we can’t control what the other person does.  We can only manage our own  responses and behaviors, and decide how honorable we want to be.   God will take care of the ultimate judgement on hurtful parents.  I don’t think we’re expected to put ourselves in harms way with abusive parents.  I do think we can protect ourselves, even via distance and refusing to participate in an abusive parents’ tirades and ongoing unrealistic demands, and outright lies.   Illness and stress are not excuses for abuse.  Even those with dementia are given boundaries.  Those with sound minds are entirely accountable.  If they have such severe reactions to something, they need a professional to help them- not unload in unhealthy ways on their family.

But what CAN we do?  We can focus on our own relationship with Christ. It’s hard to have a full-on relationship with our Lord when we are being torn down by an earthy parent.  We need to give that relationship to God.  We can forgive.  Forgiveness doesn’t mean condoning someone’s behavior- but it is an act of obedience to God.  It’s a freeing up of mental space for more positive content. It relates to our relationship with God… much more so than with humans  (Matthew 7 is good for this). We can show compassion without being subjected to continued and repeated abuse.  Sometimes people have to be loved from a distance.  Sometimes we have to just do what we can, and let the abuser stew in their own anger.

If a parent is not showing the love of God to their own kids,  there is something wrong with the parent (intentional or otherwise).  I’m not saying they have to be perfect, that’s impossible- but (if they claim to be a Christian) they should be compassionate, loving, forgiving, not demanding, not haughty, etc (I Corinthians 13).  LOVE isn’t rude, not self-seeking, isn’t easily angered, keeps no records of wrongs, isn’t proud, is kind, and is patient…  Parents are supposed to show their children those qualities.   And adult children can demonstrate these TO an abusive parent, but still not be subjected to 24/7 abuse.  Interactions can be brief, but still show love as God describes it (sometimes less is more).  Sometimes the honorable part has to be how we interact- not how we hope they interact with us.  My mom ended up with dementia before I was able to see her as someone who needed compassion; there was no reciprocation- but that was OK; I’d fixed my own perspective when I figured out it wasn’t really about me.  Not all abusive parents fit into that category, but we can decide how we want to be viewed in how we interact… we decide OUR legacy- not that of the parent.  The parent will have to answer to God one day, as will we- and He knows our hearts.  He knows about the hurt and damage done to the tender hearts we had as kids… and He can give us strength and wisdom to do what’s right as adults.

The ones who abuse are the ones with the problem, and in my opinion, it’s more of a spiritual and unresolved emotional issues that can’t be fixed until the person has some reason to change, and make amends.  It’s not about the kids (adult or otherwise).  It causes damage in the relationship, but it’s not ‘personal’. All anyone can do in an adult child/parent relationship is show the parent some healthy boundaries,  pray for them, and  be kind without being a victim again.  Sometimes distance is needed because the situation is so toxic.  I don’t think that goes against the Bible.  I don’t think we’re supposed to be slaves or sacrifices for the  abuser.  We’re to be ambassadors for Christ- with unbroken spirits.  And I don’t think that guilt and shame are ever part of a healthy relationship.

Our ultimate responsibility is to God, and following what He wants for us (Jeremiah 29:11)…. if an earthly parent isn’t following that same concept, they are not honor-able.

 

 

More Family Illness, and It’s Complicated

In the past year, we’ve lost a cousin in my age range and her mother, and last week my dad’s lady friend from his Sunday School class.  Actually, two were in the last few weeks (the visitations and funeral for two of them are this coming weekend).  Now, an uncle has been diagnosed with advanced cancer, and while things are still uncertain about his treatment recommendations and prognosis, it doesn’t sound all that great.  I still hope that there is something that the docs can offer him.

The first three people I described were wonderful, kind, beloved, compassionate parts of the family- whether actual family or ‘just’ a close friend.   The latter is not seen as a kind, compassionate person.  Yet I feel horrible that he is having to face all of this.  His wife died from cancer a few years ago (she was very much loved).  My cousins and their families are also having to deal with this.  I’ve only found out what a jerk he can be in the last 8 years or so.  I didn’t have to grow up with him.  I did have his older sister as a mother, and while she wasn’t known for being nasty, she wasn’t the same as a mom as how her students described her as a teacher (she taught for many years).  She was cold and distant at home.  As a kid, that’s all I understood.  I didn’t understand why I couldn’t have the warm, caring teacher as my mom.

I had to get to a place where I could try and see some reason for why my mom was the way she was.  I knew she loved me; that was never in question.  I didn’t, however, know if she liked me.  I knew that feeling from the time I was two years old. She wasn’t always nice to me.  I felt like I was in the way.  But as I got older, I got so tired of being resentful, that  I had to try and see her from an adult perspective, not a hurt kid, and make some attempt to understand her.  And when I did, I found out how broken she was. She had had two newborns who died within the first two weeks of life (two different pregnancies) just three years before adopting me.  She was terrified of losing me.  The attachment issues were from a place of pain, not because of anything to do with me. It would have been any kid…   Figuring that out released me from so much pain and resentment.  Her brokenness hurt me, but it had nothing to do with me.  That wasn’t the only issue, but it made sense regarding how she parented.  She wasn’t intentionally cold and distant… she was scared.  And she did ‘do’ a lot of things for me… I just never felt much of an emotional connection.   It’s really hard to explain.  She wasn’t a bad person by any means… she just didn’t know how to deal with her pain, and bond with a  new baby at the same time, with no frame of reference about how it’s ‘supposed to be done’…  nobody talked about feelings back then.

My mom’s and uncle’s  mother had been orphaned by the age of six- first her mother when she was less than four years old, and a couple of years later, her father died.  She had attachment issues (that she has discussed with me several times) because of that trauma (she was packed off to a new country with only one of her three brothers).  She told me she didn’t like to get close to people, though she always came across as ‘connected’ with my cousins and me, from what I can remember- but then I wasn’t raised by her either.  She was also ‘broken’.  And doing the best she could.  She couldn’t pass along what she didn’t have.

They do the best they can with what they have to work with, and sometimes that isn’t enough.  It just isn’t enough sometimes – but it’s all they have.

If I had any contact with my uncle, I’d want to  let him know how sorry I am that he’s going through all of this.  That wouldn’t excuse him from any of the emotional pain he’s caused, or the horrible things he’s said to/about me.  But if I stay bitter, that just hurts me.  I forgave him ages ago (that’s between me and God, not the uncle), but we have no basis for a continued relationship.  He hasn’t been a part of my life since he called me “human debris”, and said he was “ashamed to be my uncle” (fine, buddy, it’s done- you’re off the hook) after fabricating a nasty story about me that didn’t happen.  He’s a horrible bully, and is known for that character defect.  But he’s also facing some really rough stuff right now, and while I don’t want him in my life, I also don’t want to ignore the emotional torment he’s in right now.  I owe him nothing, but I owe it to myself to not be unkind in return.  I won’t like myself much if I respond that way- and I might not have a lot of time to let him know that I do care that he’s going through so much.

It’s  confusing in my head .   I don’t like this family member, and yet I can’t imagine how scared he is (and he’s still family).  He’s run off a lot of people, and it’s got to feel pretty lonely- especially compared to the way I’ve seen the other three who have been lost this year be surrounded by friends, family, co-workers, and loved ones to the point where  limits were placed on visiting/calls at times.  I don’t wish facing the end of life essentially alone (or at least not liked much) on anyone.   Yeah, people make their choices about how they treat people, and there are consequences with that.  Their ‘targets’  can only take so much crap before they have to cut ties to have their own lives not be toxic.

But I have to make my choices about how I respond, especially with something so serious.  I don’t want to have regrets in five years about how I responded.  I’ve given a message to a cousin who will relay it to him, offering my sadness at what he’s going through, and genuinely praying that whatever results from this, he doesn’t suffer (not my exact words, but the message is there).  If I could box his ears, I’d beg him to make some attempt to let his kids, and anyone else he’s hurt over the years, know whatever it is that he needs to take accountability for, and whatever amends he’s capable of.  It might not be what anybody needs, but it might be all he is able to offer.  Sometimes, that has to be enough… someone who is broken can’t give more than they have.  It hurts, but it’s not personal.