Pondering Options Update

So, I finally got off my butt and hired a lawyer last week. For anyone that follows my drama, I was in a car accident a year ago, on August 1st 2019, which totaled my car and did permanent damage to my spine. Ugh.

I spent the last year or so trying to figure out how to manage the (new) pain without being on any kind of pain killers or anti-inflammatories on a regular basis, and in denial about the need to fight for my rights for reimbursement.

I’d previously broken or cracked a couple of the toes on my right foot, and during the accident (I was stopped at a light, my left foot on the clutch and my right foot on the brake), it did a number on my feet, my right hand and my back – all of which were lightly braced and in fixed positions as I was alert and simply waiting for the light to change and my drive to proceed as normal.

His car, #3 or the rear car in the accordion sandwich,
Her car, #1 in the accordion sandwich
My car, #2 or in the middle of the sandwich
My car, #2, side view – the bumper destroyed
Front bumper also pushed in, sandwiched in the #2 position, behind the new Tesla and rear ended by the 2011 Toyota

So, I tell you all this to say I walked away from the accident, after refusing to have an ambulance called (OMG, don’t notice me! Panic! I’m fine ! I’m fine ! Danger ! I must get away !).

I got through the necessary exchange of insurance info because the cops wouldn’t even come to take a report if we weren’t calling for EMTs, blah, blah, blah, and I functioned in complete denial as long as my adrenaline was up. After all, I was used to dealing with pain, and it took about an hour to get it through my thick skull that I was badly hurt and in a whole bunch of pain.

Driving Herself to her grooming appointment (she was in her carrier, with the carrier seat belted in place, and still Katie was tossed on her head with the carrier upended – thank heavens I’d strapped her down), I had her wonderful groomers give her the once-over as part of her spa treatment, to ensure she didn’t need vet care, and I drove myself on to the hospital.

I know. Crazily independent, but that’s just how I am.

Full x-ray, with no real damage found (I stood and wiggled for six (6)+ hours trying to alleviate the pain and avoid stiffening up while I waited for medical screening). Lying down on the x-ray table was impossible, but we managed to do some type of upright exams of my back, pelvis, head and neck.

At any rate, they sent me home with tylenol (I had to call a friend for help, because I was “FINE”, right? Luckily, she’d driven a stick shift so she and her husband came to save my bacon and drive me and my car home after my bravado failed me). I spent the next couple of days killing my kidneys downing anti-inflammatories, sitting in a chair for four (4) days, and waiting for the pain to go away.

While it lessened enough for me to function, six (6) weeks later I was still whining and aware of my body, and my doc agreed to order a spinal MRI to see if they could figure out what was going on.

The blue marks are where the twinges occur, the red marks are where I kink up and the actual damage is located and the spasms occur.

Sadly, the MRI showed it was permanent spine damage. Oh, joy !

My new sleeping position after about 2 hours of lying down and my back kinks up
Corner stretches for my chest and back
My new chest stretch when shopping and my back is killing me. Sheesh !

So, I went through physical therapy until the pain relief plateaued (and I was running out of money) and I couldn’t see any point in paying for physical therapy that I could do at home. Especially since the insurance company was refusing to reimburse me for my medical and transportation replacement expenses (about $2,000 at this point) until I was ready to settle.

Flash forward a year, and I now own enough exercise equipment to loosen my back and allow me to do things like my dry stacked paver project to create a raised-bed iris garden planter, but I am still in pain daily, with lying down / sleeping still being aggravating, and with twinges and spasms happening with regularity.

My first pandemic project

It wasn’t until I’d been in Las Vegas a couple of days, in pain and aggravated from walking my Aunt’s dogs, that I made the decision to engage a lawyer. The insurance company was refusing to accept my receipts and reimburse me as part of settling my damages claim, and I’d carried their refusal to cover my reasonable and documented out of pocket expenses for more than a year.

Max, almost 2 weeks after arrival in MA. Freshly groomed and doing great at 14.
Lola, freshly groomed and in her new MA home. Looking good at 5.

So, walking Lola and dealing with her leash-tugging and Bezerker-style antics any time someone dared to walk in her line of sight firmed up my determination to handle my ongoing pain and aggravation. No more Ms Nice Guy.

All that being said, though, I had to laugh at my wimpiness when compared to the reality of others injuries. This morning’s lyrics from one of my most favorite Springsteen songs, “Drive Fast, Fall Hard”, about getting on with life despite the aggravations reminds me that life is not without risks:

I got two pins in my ankle and a busted collarbone
A steel rod in my leg, but it walks me home

At nine, I climbed high into the boughs of our neighborhood’s tallest tree
I don’t remember the fear, just the breeze
Drive fast, fall hard,

I’ll keep you in my heart
Don’t worry about tomorrow, don’t mind the scars
Just drive fast, fall hard

At nineteen, I was the king of the dirt down at the Remington draw
I liked the pedal and I didn’t mind the wall
‘Midst the roar of the metal I never heard a sound

I was looking for anything, any kind of drug to lift me up off this ground Drive fast, fall hard, I’ll keep you in my heart
Don’t worry about tomorrow, don’t mind the scars
Just drive fast, fall hard

We met on the set of this B picture that she made
She liked her guys a little greasy and ‘neath her pay grade
We headed down to Baja in the desert, we made our stand of it
Figured maybe together we could get the broken pieces to fit Drive fast, fall hard, keep me in your heart

Don’t worry about tomorrow, don’t mind the scars
Just drive fast, fall hard
I’ll keep you in my heart
Don’t worry about tomorrow, don’t mind the scar
Just drive fast, fall hard

I got two pins in my ankle and a busted collarbone
A steel rod in my leg, but it walks me home

There’s just something in that phrase, “a steel rod in my leg, but it walks me home” that reminds me that this is endurable, whatever comes, and that whether or not I win any part of my lawsuit fight for reimbursement, I’ll be ok.

Because of my pre-existing conditions, I was trying to be decent and just move on with life if they’d make me whole. After a year+ of trying to be decent and being treated poorly, plus the reminder of how many things I avoid due to pain, we’ll see if being mean and hiring someone else to mediate a settlement works to resolve this problem. Fingers crossed.

Farewells

It seems weird to be someone’s resource on how we die, but that’s what I’ve apparently become while trying to live my life to its fullest ability despite dealing with a chronic series of comorbidities.

While my Auntie was having her issues and passing away over the last few weeks, a former work friend reached out to me as his significant other is losing her fight to live, and her doctors have given up on her.

He’s about 15 years her junior, and they’ve been together at least 25 years. They both had good careers and assets and homes, but for whatever reason they never married.

She had children from a prior marriage (that spouse wasn’t in the picture when I first met her as a receptionist for the company we both worked for, so I don’t know the backstory about her former life to know why they never married). That being said, though, they both live in her house, and his house is lived in by her son.

I got a call from R about a month ago, letting me know K was in the hospital, and he was lost without her. We talked for a bit, and I offered what verbal support I could, not realizing that K might not be long for this world.

I’ve been doing what I could to be supportive, and alerted some mutual friends that now was the time to call, if they were ever going to do so.

Fast forward to last week, and R let me know that K was coming home under hospice care, and we got into more detail about their living arrangements and the fact that he has ninety (90) days following her death to get out of her house.

His whole world has been K for at least the last 25 years. Her children are all grown and living on their own, yet her Will remains in place that each keeps what they came into the relationship with, so he’s not only mourning the pending loss of his lover, he’s also packing up all his stuff and putting it into storage.

While keeping busy and packing up is practical, it just seems doubly cruel that his whole life will be in an upheaval for an extended period of time while we wait to see what happens in terms of K’s health and his options.

As he said to me the night before she came home, “I’ve never had kids. I have no one. Every woman I was with either already had kids, didn’t want kids, or didn’t want more kids. I never expected to be this age and be alone. How do you handle being an orphan at this late an age?”

I reminded him of our friend, F, who is battling Alzheimers. All her friends pitch in to step in where family normally helps out. In life, there are no promises that your plans will work out as you anticipated. In life, there are no guarantees…

So, I have no answers, but I hope I left him feeling less alone and knowing that there are others of us in similar situations. I hope I let him know that friendships will be strengthened and new friendships made as his life evolves to accept the passing of his love. It’s not going to be the life he wanted or planned, but it will be ok. And, if it’s not, we keep on trying until we find a way to make our changed circumstances acceptable. Maybe even enjoyable. Either way, it’s going to be rough for awhile, but it will be ok if he will allow it to be ok.

Wishes and Hopes

I think I’ve been pretty clear that I have no expectations for the life after this one.

Raised Catholic, I’d like to believe in some form of Heaven, but even that is a hope and a wish. And a worry. I don’t KNOW what happens next. I cannot pretend to have faith or all the answers. I. Just. Don’t. Know. Nada.

But, I have memories. Mom sitting at the kitchen table, reading the newspaper, and enjoying a bed time drink. Mom and her sisters, sitting around the table playing Scrabble. So many memories of how to fill your time when alone with others.

Questions persist. Are the sisters merely putting up with each other? Are they a means to an end, like living together was an economic solution for Blanche, Rose, Dorothy and Sophia? Where’s Grandpa and Grandma if those three are together? Will I get to see Uncle Arthur and Great Grandpa again? Do we get to escape the folks we merely tolerated in life? Are we yolked together forever, reincarnated life after life until we find a way to evolve beyond petty grievances and disagreements?

Will our after-life be like the Thornton Wilder play, “Our Town”; somehow still interested in earthy affairs, yet slowly distancing each person from each other and daily concerns?

I have no answers, which is why I’m an agnostic, but I still wonder… and this segment from Corinthians, echoing from my early catechisms, still gives me pause as I try and understand what Paul was trying to communicate about what comes next:

When I was a child, I spoke as a child, I understood as a child, I thought as a child; but when I became a man, I put away childish things. 

For now we see in a mirror, darkly, but then face to face. Now I know in part, but then I shall know just as I also am known.

Still no answers when it comes to faith, but I do hope I will see my loved ones again. And that we don’t have to spend eternity merely putting up with each other until we find out what comes next, if anything.

Disrespect


I know I’m not in charge of my Aunt’s affairs… But.

I drafted an obit and sent it over on the 30th, two (2) days after she passed. I also sent over a favorite picture (her favorite) as soon as I located the original on Saturday, November 7th, after I’d returned home.

It is now 21 days after she passed away. Twenty-one (21) days. Still no obit. Seriously?!!

While I had posted on fb on the 29th, after a cousin started mourning, a fb posting is NOT a proper obit.

Baby Sis left Las Vegas last Thursday night, November 12th, and Auntie was supposed to be cremated yesterday in Las Vegas.

Checking the obituaries list for the mortuary, and she’s STILL not listed on even their website. Seriously ?!!

I realize that I have no faith-based reason for obsessing over her missing obituary. However, it strikes me as the height of disrespect for her chosen agents to not have completed even such a basic task. Writing an obit costs $0. Writing an obit should not be that difficult (and that’s BEFORE we note that I even provided a basic draft so that no one had to bestir themselves and hit the factual high points).

This disrespect can be excused as pandemic-caused, but it galls me to know the truth and see their failure to honor our Aunt’s final wishes.

Mixed Emotions. Mostly Angry.

Las Vegas Auntie (when she lived in Alaska and worked the oil pipeline slope).

I think I’ve made it pretty clear that I believe in euthanasia but am not a fan of suicide. I understand if someone is in a lot of pain and feels that there is no way out besides ending it all. But…

Auntie was successful in killing herself at the end of October.

It started with the usual phone calls / drama, and I was oblivious to the fact that she was in such an up mood because she’d decided to end it all. Again.

I had no idea that she’d adopted a third dog on October 26th, and that it had been taken away from her because she wasn’t caring for the two dogs she already had. She apparently had quite the temper tantrum that afternoon, which may have sealed her decision to off herself. Again.

Auntie had two (2) papillions, and neighbors were pitching in to care for the dogs (feeding and walking them daily), and she was failing to thrive for most of 2020 with multiple hospital runs for pneumonia or OD attempts. So, when she brought yet another dog home, to “rescue” it, her very good friend stepped in and took it away and had it rehomed by the vet who did the wellness check. Phew !

So, while I’m sad to say it was “the usual” for a suicide attempt, that’s what 2020 had become. I’d last seen her after my car accident in 2019 on August 1st, when she’d again OD’d and fallen and I was asked to go check on her and see if I could make her see sense.

It was a rough trip. It was about 10 days after I’d had my car totaled. I was in a rental (thankfully, another Kia Soul), but the back pain from my yet-to-be-diagnosed spine damage was killing me, but I tried my best. Not willing to deal with anyone else’s demands while in pain, I got my usual hotel room, checked on Auntie and the pups, and pretty much went on my way after the usual failure to get her to see reason, and after calling Adult Protective Services. Again.

Fronto temporal lobe damage is a type of dementia where one is high functioning, but various parts of your brain no longer operate as they should but, unlike Alzheimers, you may be able to hide your inabilities.

In Auntie’s case, when she was living with me in 2010 and 2011, she got the diagnosis and ran away. Exhausted, I had neither the time nor the funds to chase her, and left her to her own devices with the thought that Nevada’s Adult Protective Services would intervene if she was truly incapable of thriving. Ha !

I’d had her living with me. I’d controlled her meds. I’d proven that she could get better if she’d bother to get out of bed and simply try. Just try. Sadly, Auntie thought she was some lost relative of Janice Joplin, who wanted to go out in a big way and have a great party after she was gone. Death had become a fetish for her, and if she couldn’t have everything exactly the way she wanted it, then she wanted to die.

Sadly, Auntie wanted someone to fight with (her usual choice in life). Now that she was living with me, however, I was not that person. I would not be that person. When she ran away to Las Vegas, it was a relief, even when I went to check on her every 2-4 months to keep tabs on what was happening. I am a selfish person who needs peace and quiet in order to function myself, and if you want someone to fight with, you’ve come to the wrong household as I won’t fight. Just not healthy for me, and pointless in the long run as people are going to do what they are going to do.

So, fast forward nine (9) years, and Auntie is looking like she’d been through the wars. Bruised from all her falls. Constantly getting stitches because she’d take medications that she wasn’t supposed to be taking, or she’d take them in quantities that she wasn’t supposed to be consuming. And life went on. Yes, she had a mental health issue. However, she had weaponized her psychiatric care so that nothing could be done to protect her from herself. (I’ve written a lot about the challenge of this issue, especially when it comes to someone getting the necessary medical support and guardianship restrictions, while people with other forms of brain injuries are left to fend for themselves). Anyway…

Monday, the 26th, I had the feeling that I should call Auntie. Due to the Fronto Temporal Lobe damage, she was no longer able to read and comprehend what she was reading, but if she heard something, she could remember it fine and argue. So, the phone call went seemingly well, and I tried to keep it to before 5pm so that she wouldn’t be talking to me after she’d abused her medications and was 3 sheets to the wind.

It was a pretty good conversation. We talked about her wish to take a cruise among the Hawaiian islands, and I told her I’d happily go with her and make all the arrangements – AFTER the pandemic was under control. Auntie wasn’t happy with any kind of restrictions, and I was repeatedly telling her that my disability supplemental salary income was under attack and being whittled away by the insurance company. As long as I was in danger of losing my supplemental (which is critical to ensuring my own financial survival), I could not / should not travel to see her.

I’d successfully managed to avoid going to Las Vegas from February onward, citing my ongoing disability audit(s) and the pandemic, and while unhappy with my decision, she appeared to understand.

Not being able to commit to a new trip, though, really frustrated her. The talk became all about her estate and her affairs, and the fact that I didn’t need to worry about her final arrangements because she’d bought a book. “Ok, I’m dead. Now what?” Auntie was tickled by the conversation, and gave me a brief summary of her assets – forgetting that I was no longer in charge of her affairs. While I noted the information, I didn’t think anything of her devision to update me on her finances. Hopefully, I would not be called in to mediate should she pass away.

Sadly, I was oblivious to the fact that she planned to OD again that night. Auntie had called and talked to almost everyone about her affairs, and then OD’d. Again. Unsuccessfully. Again.

Auntie was under the care of Hospice (and that part is still pretty fuzzy), but they came in on Tuesday morning and realized that she’d tried to kill herself again, and they removed all the opiate medication from the house.

What’s most ridiculous, though, is the fact that Auntie was then dealing with a different branch of Hospice, who spent Tuesday afternoon ensuring that she had liquid morphine and lorazapam in the fridge. Drugs that she used to overdose on as soon as Hospice left that evening. OD’ing for the second day in a row.

On Wednesday morning, she was found OD’d yet still alive, and the 6x’s the approved dose she’d given herself of the liquid morphine ensured that her organs were shutting down and that she was finally being successful in accomplishing her goal. People were sitting and holding her hand while saying “good bye”, and it’s exactly what she wanted her last hours to be. Tears. Melodrama. Suffering among the people who had the misfortune to enable her.

So, I got a call from the Realtor / Friend, 85 years old and fighting every day to live despite her own blood cancer and health issues, begging me to come before it was too late.

Frustrated at the drama (as I didn’t want to be at Camille’s bedside), I couldn’t get Hospice to tell me what was really happening, how she’d gone from recovering / fine the day before, to being on her deathbed and “transitioning”. (Man, I hate that word. What a useless phrase if you can’t tell me that she’s dying now, next week or next month).

So, I alerted my Baby Sis and my Cousin T, wrapped up my own urgent needs for the day, and headed to Las Vegas. All the while, my phone is blowing up with calls as everyone is holding Auntie’s hand and crying over her while saying good bye.

I hate to be mean, but Auntie got the send off she wanted, with everyone upset, and she p*ssed me off. Royally. I am still angry with her for her choice. I am angry with her for not being well enough to care for her dogs and attend to their care before she departed this earth. I am angry with her for not being able to see that she had a great life – if only she could have gotten out of her own way and been able to see beyond the end of her nose.

The conversations over the last couple of days / weeks since she succeeded in killing herself have been rough. So much denial over Auntie’s situation, and people want my reassurance. Reassurance that I don’t have it in me to give as her departure was such a waste.

I knew she’d never get better lying in bed.

I knew the Fronto Temporal Lobe dementia made it impossible for her to be less narcissistic.

I knew all this, and yet I am still blazingly angry.

Mostly, though, I’m angry at myself for giving in to the pleas of her Realtor / Friend and being a voice of the family while trying to not overstep the boundaries (since I was no longer in charge of her estate or affairs, and it was unclear who was actually in charge), and yet I was the only family member available to be be there immediately after she died.

Don’t get me wrong – I believe in euthanasia. But I also believe in mental health care and being willing to explore all the reasons for one to end their life to challenge the decision and make sure there is not something more that one could do before departing this earth.

I know we’ll all go, eventually. If you’re going to kills yourself, though? Please take care of your animals. Please make sure your affairs are in order. You have a DUTY to yourself and your loved ones to clean up your own mess, if you can before departing this earthy plane. I know that’s an incredible set of expectations for someone with health issues, but there you have it. I’m angry. Pointlessly angry.

As it is, Baby Sis talked to me for the first time is over five (5) years, but is blaming me for things that I didn’t do, all while hurting over the fact that she never bothered to get out there and attend to Auntie before she was successful in ending her own suffering.

Auntie’s friends are in mourning, and looking to the family for guidance, and there is no one in charge because Auntie changed her paperwork and made it very difficult to help her in the short term.

Hopefully, Auntie will finally be cremated next Monday, the 16th, and then Baby Sis and Cousin T can concentrate on handling her affairs and arranging a celebration of her life in Alaska next Summer, or some future Summer when the pandemic is no longer making everything difficult.

For now, something like this will be her new home until ash scattering arrangements may be made. Oh, that celebration of life is going to be a very bumpy ride…

Drama

I have not been able to blog on this site since the upgrade. I do a lot of work on my tablet, and, unfortunately, the tablet doesn’t let me edit what I’ve written.

Lola and Max – lost without Auntie

So, I come to this site a few months after my last 3 drafts went nowhere.

Auntie has passed away. I ended up in Las Vegas despite my best efforts. Baby Sis is once again disrespecting me, and thinks the worst of me. And yet I’m the one who showed up, did the heavy lifting of taking care of her two (2) dogs until Baby Sis or Cousin T could manage to get onsite.

Yes, everyone had “reasonable” excuses as to why they could not do what Auntie had asked them to do after she was successful in finally killing herself.

But, I didn’t choose to interfere in anything.

Auntie’s paperwork was unclear about who was in charge, and the person I thought was in charge, the Realtor / Friend, asked for me to come out and represent the family in lieu of a definitive answer about what Auntie desired.

So, It’s now 16 days after the drama started. The dogs are in their new homes (Cousin T and her best friend each took one, as they both already had dogs in their households). Auntie isn’t being cremated until next Monday (long, long story), and I am safely back home and hearing all sorts of accusations about what I might have stolen (gotta love the neighbors for stirring the pot), and I have to be grateful that I’d already photocopied every room and mailed the videos to my sis and cousin so that they would know what they were getting into, and so that I had documented proof from the morning that I arrived that I took nothing. Nothing !

Heading for Boston

I spent $1,600 to honor Baby Sis’s wishes, as well as Cousin T’s wishes, in helping them figure out my Aunt’s affairs from 3,000 miles away, and I have yet to be repaid.

Luckily, I got paid on the day I left for Las Vegas, so I was able to re-arrange my obligations to cover their needs until the estate can reimburse me. We just now wait and see how long that’s going to be. If Baby Sis ever bothers.

Drama, drama, drama. So glad I am no longer in charge.

Loving my new Dad
All tuckered out. Home at last.

Pulmonary Paper

 

ThePulmonaryPaper

The latest issue of “The Pulmonary Paper” is ready, as shared by my favorite COPD travel agents, http://www.seapuffers.com One of these days, I’m going on an adventure with them, even if I don’t yet have the need to be on oxygen.

Summer and Fall – 2020

Of particular interest is an article by Ryan Diesem, on the various strengths and weaknesses of oxygen concentrators, and being careful about trying to buy low cost alternatives.

COPD Activism

COPD Activists

I’m going to upset my lawyer.  If he learns that I’m actually doing something.  Anything.

You're not the boss of me

However, my fight to have a full life despite my challenges prevents me from being anything other than the best that I can be.  I’ll die trying to life a full life, but I won’t sit around, lingering, waiting to die.  Just not patient enough.

And, side note:  Does anyone else find it funny that The Patient must also possess themselves of patience?  I’ve recently taken to calling myself the “individual” as I am determined to NOT be “the patient” outside of the doctor’s office or a hospital setting.

At any rate, I’ve signed up to participate in the COPD Caucus online.

It’s an attempt to find parity; to find a cure.  I’m no Super Justice Warrior (SJW, for short), as I have little patience for stupidity, never mind enough patience to have to reign in my temper and deal with stupidity in a bureaucratic setting.  Advocacy sucks to have to do, but when you have no other choice, you do what you must.  Finding parity and struggling to form alliances is more taxing than I normally force myself to be when not at work, but needs must.

Our current agenda seems pretty reasonable in terms of cohesive, and limited, goals:

Impact 2020 goals

The key challenge for me will be my lawyer’s insistence that I do nothing when contrasted with these homework tasks:

Impact 2020 Homework reminder

While I try to be a compliant client (to do otherwise feels like an episode of “Law and Order, SVU”, where failing to obey your lawyer ends up landing you in jail), it still goes against the grain to trust anyone’s agenda but my own.  Regardless of the fact that I chose this lawyer and asked for his team’s help.

 

So, I listen to what the COPD advocacy group has to say, and then get my marching orders.  Grumpy is my go-to persona in real life, but I try and be pleasant when I’m stuck in groups.  Kind of the whole, “On stage” persona I learned when working a second job at Great America, (a Disneyland or Universal Studios competitor) vs. the real me that I can be when among friends or on my own.

So, I’m going into effort this fully informed and hopeful that I will scrape through, with my lawyer none the wiser.  Here’s hope that advocacy works.

 

 

How long ?

Waiting to Die

I have some strange conversations with my friends.  This week has been about accepting mortality, and knowing when you’re “ready” to die.  Also, the frustration of dealing with co-morbidities and hospital runs, and being afraid to die.  Typical stuff.

2020 marks the 5th anniversary of my going on disability (October 1st, to be precise).  It also marks the challenges the individual (not the “patient”, as I’m only a patient when I’m actually IN a doctor’s office) faces to receive a “How long?” answer from their doctors when their particular situation won’t get better.

In my case, I went on disability after three (3) car accidents, after fighting my entire life to hide my breathing challenges and pass for normal.

While I was prepared from a philosophical aspect that I would die sooner than expected, the reality was that I’d already lived much longer than anyone ever expected (which tells you that nobody knows nothing about life expectancy, and emphasizes that there’s not a date stamp on your foot to help you come to terms with an unknown end date).  In my case the online tools gave me a life expectancy of 3-5 years based on my lung capacity and FEV1 / FVC numbers.

Telling you that I went on disability when my FEV1 at 33%, and that I’m currently at 26% doesn’t change the fact that I have survived the 3-5 year forecast, and am still going strong.

The “you don’t look disabled” comments continue (which is both aggravating, and a reassurance).  But, in reality, I’m living in a poisoned tree.  Most people sit down, expecting my tree of life to look like this:

Dying tree

My reality is that I look fine, and will hopefully continue to do so until I don’t.

Living Tree

The poison will continue to spread from the critical engine part of me – my lungs.  So telling me I don’t look sick and that I should do thus and so is really not helpful to my reality.  At this point, I’m dealing with a number of co-morbidities:

– Asthma / emphysema / COPD (breathing difficulties, regardless of the label)

Then, the breathing medications continue to cause complications:

– Arthritis

– Diabetes

– Liver issues

– Vision issues

– Pain issues

And, with my actual medications plus any change to the medications, a domino effect begins:

– high blood pressure / edema

– swollen and painful feet

– pain in my right side worsens with liver failure issues

– back pain due to last year’s car accident and existing arthritis spreading

– eye issues as my diabetes continues to attack whatever parts it can…

I won’t go into all the aggravating side effects.  As I said to another friend earlier this week, “Yes, I’m ready to go when my time comes.  That time is not today.”

We talked about how difficult it can be during the fire season, and the fact that I thought I might die over the last 2-3 years, I was struggling so hard to breathe.  Yet, here I am.  Still.

We also talked about how rare it would be for me to go in the Summer, as that’s my “best” time.  Warm days help my painful body function, and I can get out and keep busy, using the laser passions of my ADHD to focus on things other than pain while I keep busy and distract myself.

But, the fire season is upon us and I’m thankful that this year isn’t bothering me as much as it has in the past few seasons.  Despite how close the fires are, and despite how cloyingly bad the lingering air quality continues to be.

Seriously, perfume will aggravate me within a very short matter of time.  Wood smoke?  Not so much.  Maybe it’s because I grew up in a smoking household.  But, even that explanation is not the true story because I used to be able to handle the scents within a home, and now cannot.  Whatever the reason, something is going to get me.

Just not today.

Someone recommended I read, “When Breath Becomes Air“.  It’s not my story, but it has similarities to my struggle.  To paraphrase the (now deceased) author, Dr. Paul Kalanithi, and what he said in his “How Long Have I Got Left?” op ed for the New York Times way back in 2014,

“The path forward would seem obvious, if only I knew how many months or years I had left. Tell me three months, I’d just spend time with family. Tell me one year, I’d have a plan (write that book). Give me 10 years, I’d get back to treating diseases. The pedestrian truth that you live one day at a time didn’t help: What was I supposed to do with that day? My oncologist would say only: “I can’t tell you a time. You’ve got to find what matters most to you.

I knew that someday I would die, but I didn’t know when. After the diagnosis, I knew that someday I would die, but I didn’t know when. But now I knew it acutely. The problem wasn’t really a scientific one. The fact of death is unsettling. Yet there is no other way to live.

The angst of facing mortality has no remedy in probability.

Seven words from Samuel Beckett, began to repeat in my head, and the seemingly impassable sea of uncertainty parted: “I can’t go on. I’ll go on.” I took a step forward, repeating the phrase over and over: “I can’t go on. I’ll go on.” And then, at some point, I was through.”

So, I have good days and bad days.  I try and set flexible goals and plan out fun activities years in advance, and I also try to live in the short term and sort through all my crap so that there’s not a lot left for anyone else to clean up if I die tomorrow.

I try to comply with the requests of my lawyers to not push myself for fear of losing my matching salary benefits, but that forced idleness is an actuarial’s view of life, not mine.  My ADHD goes nuts when faced with frustrating situations that I cannot change, so forced idleness will never be my go to strategy to keep depression away, and to keep the joy of simple existence primary in my daily life.

While the doctor can’t set a timeline, the insurance company and the lawyers continue to push for a timeline.  One, to not end my life prematurely, and the other two with an eye toward the bottom line and knowing when I’ll either stop being a paying customer, or when I’ll stop sucking at the faucet of their profits and profitability calculations.

No answers here.  I’m not a person of faith.  I’m not a person who believes in fairy tales, even if I’m a huge believer in hope.  Hope that there will be a happier chapter ahead.  Hope that everything will work out.

All I can tell you is that I’m not dead, yet, and I don’t know why, either.  Living beyond expectations creates strange bedfellows in one’s life, but I refuse to simply lay down and die when there are still so many good days left to enjoy despite forecasts to the contrary.

Bedfellows