I have been disabled for three (3) years. Why, then, do I still have nightmares over deadlines being missed?
I have been disabled for three (3) years. Why, then, do I still have nightmares over deadlines being missed?
I have a big mouth.
I think it goes without saying that I will call a spade a spade.
Yes, I will try and be diplomatic. Yes, I will keep my opinions to myself (it *is* possible, I have tried to do it upon occasion). But. There comes a time when one steps over the boundaries to do a sanity check with a friend struggling to keep it together.
My childhood friend, D, doesn’t deal well with Death. In her case, Death is always with a capital “D” because aging and end of life issues have become a boogey man in her life.
I try and talk to D a couple of times a year. I’d talk to her more often, however, it’s hard to get her on the phone with any regularity, so I’ll often leave voicemails or send emails and hear back weeks or months later.
D has been engaged to a guy since 1998. Very drama filled, but let’s just say that I thought it was a waste of time, and the intervening 20 years haven’t changed my mind.
The “brilliant” and “misunderstood” man hasn’t held a regular job in the intervening twenty (20) years. He’s been a perpetual student. He’s got a top government clearance, and yet worries about his ideas being stolen (one of his many reasons for why jobs don’t work out). Crazy? Probably. Let’s just say that he’s not my cup of tea, but it’s not my business because I’m not the one sleeping with him.
So, fast forward to this past weekend.
I get a call that my friend is cooling her heels at the hospital, waiting for the emergency room staff to tell her if her boyfriend is going to live or die. And, if he doesn’t die, what it’s going to take to help him live.
S, the boyfriend / fiancee, has had worsening health for the last twenty (20) years, and D has picked up more and more of the bills involved in his life, while not having the rights and privileges of a wife when the s*it hits the fan.
D spends most of her time at his house, helping to cover those bills and assisting in caring for his highly functional but mentally handicapped brother. D even footed the bill for a “Rainman” like lawsuit between S and his brother, T, over who was the best caregiver for the younger brother.
So, you can guess that I’m not a fan of S. I’m not a fan of one person sucking the other dry, and certainly not when it expands into other expenses that S should be fielding if he were truly the person he thinks he is in life.
So, almost 2 weeks have passed. S is home.
D is spending time at his bedside, sitting vigil, as S continues to not care for himself properly, and the medicines for heart failure can only do so much.
I got a call last night, very late, as D had returned to her own apartment and set off the fire alarms, and was waiting for the appropriate techs to show up to repair the heat sensing equipment as she’d bashed the wrong item trying to get the system to be silent after she’d burned some toast. (Yes, read that again. D goes from one drama to another, and there’s never any one thing that anyone can identify that she should have done differently, but there’s always something that puts any problem right up and over the top).
So, we’re talking, and I open my big mouth.
I think I’ve said before that I dated a wonderful man with COPD that I met on a dating website. Dale has since passed on, but I think of him often because it was one of the hardest things I’ve ever done – telling him that he could no longer be in my life because I couldn’t support the way he was handling his end of life issues and failing to take proper care of himself.
Yes, I’m opinionated. That’s why this blog is titled, “Boundaries”. I know I need to work on mine, as I suck at keeping my mouth shut.
D’s trying to stay awake until the repair tech gets there, and she begins to tell me that she’s given S an ultimatum about taking better care of himself, or she’s out of there. I cheered.
Yes, it was bad form, but I was thrilled that she was finally looking out for number 1 in their relationship vs. continuing to be ok with having her life swallowed whole for his madness and choices.
Anyway, I recounted my story, plus the Valerie Bertinelli story where she tells Eddie Vanhalen that she wants a divorce as she cannot love him while he smokes himself to death, despite knowing that he’s had multiple run ins with oral cancer. As Valerie and I both explain it, loving someone is a choice. And, the love you have for another can be killed by the choices that they make over which we have no control or influence.
In Valerie’s case, she wasn’t going to enable Eddie to ignore her real concerns about his lifestyle choices. She divorced Eddie and moved on while he was still alive, so that she could get used to being without him in her life while he was still available and refusing to compromise in a way that she needed in order for her love to be healthy for BOTH of them.
In my case, when Dale was unable to leave the hospital after and end of life COPD flare up because he lived off the grid and had no one at home to care for him, I agreed to help him get out of the hospital. I had some strong requirements that Dale promised to do, and when he failed to do what I needed, I kicked him to the curb.
It wan’t that I didn’t love Dale. It was that I was exhausted taking care of him in the six (6) weeks he lived in my home, and I was resentful of his deceitfulness and dependency, even though he’d assured me that he would get an apartment on the grid, he would arrange for the necessary home care, etc., etc., etc.
Dale made his situation worse, prior to his last exacerbation, by living off the grid and being unable or unwilling to turn on the generator when the solar power failed (it was Winter, and if we don’t get enough sunny weather, solar does need to be supplemented). Dale ended up in the hospital with pneumonia because he failed the basic test for taking care of himself; he put saving money ahead of realizing and accepting that he no longer had the necessary strength to live off the grid and run the generator when the weather demanded it.
Maybe Dale wanted to die and was found before that ending occurred. Whatever it was, once he moved in with me and was supposed to be recovering and getting back on his feet, I found him enjoying having the “little woman” taking care of him, and any effort he might have made to move into his own place conveniently fell by the wayside.
Instead of being honest about what he needed in life:
he moved in with me and began to suck the life out of me. Me, who is very determined to NOT be a burden to others, and who was clear that I would NOT be at his side at the end as I no longer had the stamina to be a caregiver.
I did that happily with my Mom, but my Mom also made everything very easy for me. She thought about what her caregivers might need, and I had four (4) other people helping me care for her (my Big Brother and his wife, and my Baby Sis and her husband).
So, to go back to the point of this story… I blew through the boundaries last night in talking to D about her situation with S. D has never been able to handle illness or end of life discussions, so I knew that taking care of him would be the thing that might end their relationship.
Since S won’t deal with what’s important to the both of them in preparing for his end of life (which is never known in advance, but which will come to us all in time), I figured that the drama would start again if she wasn’t able to draw a boundary line and keep it as S ignored the recommendations of his doctors and his physical therapists and nutritionists.
Hopefully, D will remain friends with me regardless of what she chooses to do about her life and where it overlaps that of S and his younger brother. I am glad, though, that I spoke up so that she is not alone in knowing that her thoughts, whatever she chooses to do, are all perfectly acceptable.
We’re all going to die, someday. But, embracing someone else’s slow demise does not have to figure in anyone’s life unless they choose to do so, and can handle the heart rending emotions involved in being a caregiver.
It’s not noble.
It’s not romatic.
It’s absolutely NOT pretty.
Being at someone’s side as they slowly decline is one of the toughest things that anyone can do for another person, and society should NEVER force someone into a role that they cannot handle.
The image above shows approximately 3 square miles, between Melrose and Wakefield Massachusetts, where I walked everywhere as a child.
The red anchor for Spring Street shows where I grew up, and the greenbelts to the West and South show the woods where I wandered unsupervised for hours, fishing, exploring and generally entertaining myself while staying out of trouble.
“Billy’s Famous Roast Beef” to the East side of the map shows part of Melrose, and Bay State Road where my material Grandparents lived.
To the South, the “Melrose Highlands” shows where I could walk to buy penny candy or buy a book with my weekly allowance.
I used to taboggan down hills beside the Greenwood Manor Nursing home in the Winter. I used to flip rocks and look for tadpoles alongside the pumping station in the Spring.
No matter the weather, I was out and walking.
We only had 3 channels on our TV, and its was boring to be indoors where I was often stuck when I was sick or recuperating from surgery. I was not a fan of the cold and damp, but anything was better than being trapped indoors if I was able to go outside.
So, while I’m no longer living in Massachusetts, I am trying to figure out the area where I live and how I can get outside during decent weather to ensure that I keep on moving and remain as healthy as possible.
I’ve signed up for some guided walking tours with local docents, and I’m hoping to explore more of the open space preserves, locally, on my own if I can’t find enough local walks with company that moves slowly enough along mostly-level lands for me to find it enjoyable.
While I cannot bring back my childhood, I am determined to find a way to do more walking from home (as I hate to drive when I’m tired, and not just because I could pose a threat to others when driving tired).
While my COPD does make it challenging for me to do a lot of physical things, I am hoping I retain enough of my common sense when tired to be able to walk safely and not have to worry about my physical vulnerability. I have a can of pepper spray with me when walking on my own, and I’m good about bringing my phone (and keeping track of whether or not I have a signal) when out wandering.
I covered some beautiful spots last week while the weather was good, and while I came home for a very long nap afterward, I am determined to explore more of the local haunts on my own if the weather remains decent. It’s a tough day when my number of steps are less than 1,000 – that’s absolutely no way to stay healthy !
Having checked out the Little Uvas Creek Park as part of the Open Space Preserve, I’m hoping to make it over to the Eucalyptus Rest Area (with what appear to be conveniently located fishing ponds) by heading out for some shorter walks over the next week or two and before this month is done.
I can’t believe how willing I was to end it all last Fall, my breathing was so very difficult and labored as the fires went on and on. But, I got better after we went to Jamaica for Christmas and the crud was baked out of my lungs, and I stayed better during our trip to the UK.
While still tiring very easily, the double dose of vitamin D3 is helping me to keep up my energy and keep moving despite being fatigued. I still nap almost every day, and have trouble sleeping at night due to pain in my liver and back, but I’m doing better about keeping my naps short so that I can try and keep my waking and sleeping hours “normal” so that I don’t lose pace with the real life around me.
I hate the end of the Summer when it becomes too cold to swim as Fall takes over, but it’s better than it being rainy. I have to be thankful that I am well enough to leave the house, and be grateful that I have some beautiful areas to explore.
Sara Bareilles is a fun, passive aggressive song writer whose catchy tunes just fit my sense of whimsy.
I need lots of catchy tunes when I go through life, as it’s way too easy to get lost in the day-to-day dramas of real life, or the intellectually challenging (and sometimes depressing) fictional tales of alternate realities. Just finished Charlaine Harris’s, “An Easy Death” and loved it. The paragraph which had me hooked and told me all I needed to know about the lead character, Lizbeth “Gunny” Rose, is quoted as follows:
Needless to say, the protagonist doesn’t die (as, where would the book series go from there?), but it’s worth checking out if you enjoy honorable, self-possessed, independant characters, regardless of their circumstances and horrible choices.
So, to get back to the point of this blog… I’m hearing the promos of the musical, “Waitress”, playing in San Francisco, and hoping it’s carried over for a longer run as I’m focused on paying for a cruise with the family next March, and need to keep my priorities in line in order to achieve my goal.
Every time I hear the chorus of this song, though, I really want to go enjoy that escapism for a couple of hours:
As I continue to struggle with my health (“Am I healthy enough to work?”, “Am I being entitled by accepting disability and not working?”, “Is it a good idea to go see the life coach again?”), etc., etc., etc., I find I don’t have a lot to say.
Too much grumpiness and introspection going on.
Too much anger over how this country is failing its citizens.
Thankfulness about being lucky enough to have the luxury of disabilty benefits.
Too much reality for watching the leader of our country bully and belittle everyone and everything not him, and feel that his barometer of taste is the only accolade anyone should care to seek or attain.
Life is a circle, and I accept the premise that we’ll keep going over the same old things as we slowly make progress as a civilization, with side steps and stall outs and reverses. I just hate being stuck in reverse mode as we peel back the fascade of publicly civilized behavior and a great many of us turn into the Romans cheering on the dismembering of others in the collesium. We’re ok with the status quo, so long as it isn’t us.
So heartbreaking, as I know we can do better.
I’m really struggling with people I like and respect being blind to the suffering of others.
I’m really struggling with these same long term friends of mine, people who would be adamantly against:
being ok with our country in this current moment. With a Commander in Chief who mocks, lies, and downright celebrates bad behavior.
The disconnect of their professed beliefs in contrast with their actions in supporting a madman and his cronies is disheartening. And disorienting. These friends have enough to eat, a roof over their heads, and are professing to doing God’s work here on earth, and yet they appear to also have a burning rage about their lives, and are standing behind the bully-in-chief, despite any line he crosses and any outrages he commits.
I sit in judgement. I admit it.
When I look at the picture above of this particular man and his sign, I wonder, “What defines kindness to him?” and, “What’s his agenda?”
He’s very clean. He’s appropriately clothed for the weather. Mentally, given the look on his face, there appears to be someone at home who is on top of his game and who may be a professional beggar, or be running a social experiment, or something else.
Given the Vera Bradley bag by his feet, and his clean sneakers, I know he doesn’t need my financial help and may be a social engineer, determined to challenge “The Man” by going his own way. His sign and persona are things he can change at will, chameleon-like, so any presumptions about his life are my own and may be belied by his personality.
But, I’m looking. I’m trying in my own small way to not do any harm by abusing people who are not abusing me.
As I’m watching others around him who appear to be struggling with mental health or substance abuse isssues, or both.
I have no answers and no rocks to throw, as I’m busy trying to keep my own mess together in the madness all around us.
Q1] How important is music in your life? Priceless. It colors my world and keeps me company in good times and bad.
Q2] What is most favourite type of music and what is your least favourite? Most favorite has to be poprock or musicals – anything one can sing to. Least favorite has to be instrumentals or classical, as I need the words. Melodies alone just don’t cut it for me.
Q3] Do you own a music collection or do you simply listen to whatever on whatever? You bet I do ! The best thing to ever happen after “Personics” (where you could send away for a list of songs to be put together into your own play list), was the creation of itunes and digital downloads. I had 1,675 songs or so, last time I checked my library.
Q4] Are you a singer, a hummer or a whistler? All of the above. I may struggle due to lack of oxygen for carrying a tune, but nothing but death will stop me from trying to belt out a tune when the mood hits.
PQ5] Show through links your five best songs? Only five (5)? That’s so tough ! It goes without saying that I’m skipping anything by Meatloaf or Jim Steinman, as SparksFromACombustibleMind covered that genre so well. Ditto my broadway musical preferences. I guess I’ll have to highlight the songs that either stopped me in my tracks and made me pay attention, or captured my imagination for whatever other reason… Here goes:
#1 – the first music video that changed my life – Bohemian Rhapsody. I remember watching WRKO on a snowy Saturday morning, enjoying the weeks’ hits countdown, when this one burst into my livingroom. 1975. My life was in turmoil, and Queen was the answer. It would be another few years until MTV premiered, but I was hooked on music videos instantly.
#2 – when I decided I didn’t want to be a bootlegger, and that stealing music was wrong – long before I understood why one could not replace a defective 8-track tape and why my once-again out-of-work father was upset at my wanting to return the tape for a replacement, frowning in my childish way at his trying to give me a birthday present I would like but which was broken and unable to be replaced as expected. The Partridge Family Christmas Album. 1971.
#3 – Bruce Springstein, when I began to see him as more than a connection to my big brother. “I’m on fire”. 1983.
#4 – The Eurythmics – “Here comes the rain again”. 1984.
#5 – Billy Joel – “River of Dreams”. 1993. His life was breaking up, and mine was in turmoil. Again. He’s got so many incredible story songs, but this is the one I never tire of.
Q6] Have you ever been to an outdoor concert? Absolutely. Whether it’s music or comedy, there’s always time to find money for an outdoor concert on a warm Summer’s night. Last year was Darius Rucker, of “Hootie and the Blowfish” fame. This year was Gabriel Iglesias (although you may not count him, since he’s a comedian). My big concert this year was P!nk, but that was indoors due to her preference to add aerialist activities to her shows, which require scaffolds and ceiling connectors.
PQ7] Do you ever go out to listen to music live? When was the last time you went to a concert/gig? 2-5 times a year, depending on the budget, I’ll go to a live concert. While most of my favorite music is impromptu, in a pub setting, I’m really, REALLY picky about cover bands, and prefer Irish Pubs as they aren’t doing top 40’s hits and specialize in timeless ballads and rousing tunes that get the audience singing and participating.
I went to a couple of ceildh’s and cabarets in June that were exactly what I’d hoped for. Otherwise, I’m hoping to be able to catch up with James Taylor when he does a short run in Las Vegas in April 2019. I’d love to see him with Bonnie Raitt, but it doesn’t look like they’ll be near me anytime soon.
Q8] Do you sometimes feel like dancing when you hear music? Under what circumstances do you dance? No stamina to dance, but I’ve been known to forget myself and let loose a boogie wiggle or two while working around the house on necessary chores, or when stuck in traffic. Music just makes me happy and want to move.
Q9] When do you listen to music? Whenever I’m doing stationary chores. Cutting back the trees when working on the yard, or up on a ladder trying to paint the interior of my tin can home… There is never a bad time for music.
Q10] If you answered yes to Questions 6 & 7 – who did you go and see? Music is a big part of my life. So, starting with Harry Chapin and Helen Reddy in 1974 or so on Cap Cod, I’ve been to so very many – Seals & Crofts; Daryl Hall & John Oats; Air Supply; Rick Springfield; Queen; Bruce Springsteen; Tom Petty & The Heartbreakers; Billy Joel; Elton John; Donny & Marie; etc., etc, etc. Most of my current jaunts to Las Vegas include a rock concert, a cirque du soleil show or a comedy concert. I’m lucky enough to have a relative over there, giving me the excuse to visit somewhat frequently.
Q11] Is there a song that makes you emotional? So very many. “One Day More” from Les Miserables, or “I dreamed a dream”. Or, even, “More Than Words” from one hit wonders, Extreme, or “Let the day begin” by Santa Cruz band, The Call. “Heaven can Wait” by Jim Steinman and Meatloaf gets me in the feels. Every time.
PQ12] Do you feel that you have a special connection with some types of music? Which types? Rock and roll. I really enjoy the balladeers, the hard rock rhythms, and the ones which include orchestrations. If you can get my blood pounding, or engage my heart or my sense of whimsy, I’m all in.
Q13] Have you ever tried singing in a karaoke bar? What was the experience like? Nope. Can’t stand the attention of a crowd focused on just me (vs. being part of a singing crowd), and I’m grateful work “team building” events never forced me to have to try.
Q14] Do you listen to music when writing? If so which? No. If I’m writing, I’m in my head and tuning everything out, so it’s a waste. Music for me is for more mindless tasks like painting or making jewelry, vs. trying to compete with the pictures in my head that words and music always create.
PQ15] Have you even gone to see a musical? What was it, provide link please. Ok, this is going to be a long, long list. I love musicals. Mom began taking me as a child, so I’ve seen most if not lots and lots.
01 – Godspell
02 – Pippin
03 – Sting in Three Penny Opera
05 – Man of La Mancha with Sheena Easton and Richard Kiley
06 – Pirates of Penzance with Peter Noon, Linda Ronstadt and Jim Belushi
07 – Les Miserables
09 – Wicked
10 – The Lion King
11 – Chicago
12 – Cats
13 – Bat out of Hell
I’m sure there’s more, but I’ve seen some of these more than once, too.
Q16] Do you know the lyrics to all the songs you like? Mostly.
Q17] When you are listening to music – are you listening just to the music itself or the lyrics too? All of it. Not really fond of instrumentals as my mind wanders. I prefer words, to give me pictures and to sing along.
Q18] Do you listen to music when you go cycling/jogging or when you’re working out at the gym? [or any other physical activity] Nope. Doesn’t feel safe. If I’m walking, I’m listening to nature and hoping not to be mugged. (Yes, even here in rural fahm country, fear is just part of my reality. Especially with so many people struggling to survive and falling through the cracks to become homeless).
Q19] Many operas are in French, Italian or German. If you listen to opera, do you understand the libretto (text) or are you happy to get the gist (main idea)?
Hate it. I used to sing Gregorian chants and German love songs in the school chorale group, so the music would grow on me over time, but I prefer to feel the honest emotion which comes from understanding the words involved.
PQ20] Are you deleting any questions, if so which ones? Nope. Not as far as I’m aware of, anyway.
Q21] Do you enjoy watching music videos? What sort of music videos do you enjoy most? I miss my MTV and I wish there was still a rock / popular music channel ! For me, the videos have to tell a story (which has become very rare since MTV and VH-1 stopped their mostly music formats). Unless I think of old favorite songs (like this writing exercise provoked), the last new video I loved was Wrecking Ball. Yes, I’m a closet Miley fan, even if I think she’s nuttier than a fruitcake.
Oh, wait, wait, wait… I think Weird Al caught my attention more recently than that:
Ok, that’s it. Great music memories, but this has got to be my most-linked posting, ever. Enjoy !
With the earthquake and tsunami in Palu, Indonesia, the timing is perfect to underscore the need for Community Emergency Response Training (CERT or CERTS for short).
As you can guess, the insurance company and my lawyer are against most anything and everything I choose to do, including attending community-wide training during October (the annual Natural Disaster Preparedness Month). But, I’m doing it anyway.
Why? Because of my normal, you’re-not-the-boss-of-me reactive attitude. And my upbringing as a girl scout. And the fact that I’m not dead, yet, and hope not to become dead by anything that is otherwise preventable or which may be offset by being prepared.
Does my attitude make me stronger, retarding my COPD and breathing difficulties? Hardly.
Does my attitude mean that I can in any way actually help myself or others in the event of a disaster? Nope.
Does my wish to be prepared mean that my efforts are worthwhile? Ha, ha, hahhhhh, ha, hah !
Defiance is just built into my very arthritic spine.
Stubbornness is built into my backbone.
It’s just how I’m made.
Once the weeping, wailing and drama is done, I get over myself and deal with the realities and aggravations of living despite any pain or hassle. Am I fast? Nope. Will I profess to be a leader? Nope. What I will be is someone who believes that any participation and help I can provide is better for me and anyone around me, vs. sitting and waiting to be rescued.
I am so not a fan of damsels in distress. Never mind joining their ranks as my COPD worsens.
So, I tell you all that to tell you this – regardless of how much I try my best to participate – the reality is that I’m not hurting anyone by trying my best to keep my attitude in check and my physical abilities the best possible.
I was very entertained by last night’s class, where they instructed us to blow into the glove, twist the base to ensure the fingers inflate fully (proving there are no punctures and that they are safe to wear), and then don the gloves.
I had to laugh over the fact that I don’t / can’t blow up a balloon, just as the young lady is shown in the picture, never mind inflate a glove fully before putting it on.
Look at the pictures of Palu again. Two guys are in a motorcycle helmet. Nobody’s wearing gloves. One guy is barefoot, and most everyone else is in flipflops.
This is where the rubber hits the road in terms of reality vs. preparation.
*If* I survive a disaster, that’s a real situation.
If I’m lucky, I’ll be as healthy as I am now, and not injured or trapped, and my preparations to survive a disaster will do me and my neighbors some good.
If I’m dead or injured, maybe someone can use my supplies and prepatory materials to help someone else.
The lawyer and the insurance company want me to sit down and do nothing so long as I’m collecting matching salary / long term disability benefits. When did it become wrong to discriminate against handicapped people, which is what I’ve been found to be, yet ok to try and hamstring their every waking hour with stress about losing their insurance benefits because they aren’t dead yet and are still trying to participate in life?
I have zero answers, but I live in earthquake country and am continuing my efforts to try and remain independent and healthy despite my very real birth defects and related handicapps.
The insurance company and its restrictions be damned. I refuse to lie down, waiting to die.