Views from my deathbed: Cohousing taught me it’s okay to ask for help

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hospital monitors

My robot care givers – monitors that check out how I was doing at any moment. In the cover photo, those are 1 pound weights on my walker that I struggled with lifting. I wondered what I was going to do with my grandfather’s bamboo cane – use it of course. The rubber bands were for physical therapy.

Here it is February 1, 2019. Five years ago today I returned home from the hospital and rehab after six weeks on my deathbed, losing 30 pounds (20 percent of my body weight), and surviving two surgeries.

I’m glad that my visit from the Ghost of Christmases Yet to Come is behind me. It gave me a view of what the end of my life would be like and I better keep living it up while I can.

I made a documentary about my experience called “Aging Gratefully: The Power of Community” that’s available to watch.

During the ensuing five years, I’ve become Medicare-eligible and my memory isn’t the steel trap it used to be and I’ve learned to quit living in denial and ask for help.

My experience was so profound, I’m more than willing to talk to you or your community about the “why” part of cohousing.

When I moved into a senior cohousing community, I didn’t really know what that was about until I was unable to take care of myself. I knew I was aging, but didn’t think it would happen this fast!

In the cohousing community, we all own our own homes, and have agreed to be supportive of one another as good neighbors and chipping in on chores around the complex – it’s akin to running a family business and everyone lives on site.

Cohousing goes contrary to the American tenets of rugged individualism and self determination. In the non-cohousing world, asking for help is seen as a sign of weakness or a sign of superiority. In the cohousing world, it is neither. I have had to learn how to ask for help.

When I was in the hospital, I couldn’t walk and could barely lift my arms. I was fed gunk through a tube that flowed directly into my heart. I generally don’t speak in absolutes, but in this case, I had never felt so helpless in my life. I was left for dead until a laboratory at the University of Michigan figured out that I had an odd ball interstitial lung disease, some sort of fungal pneumonia, which was easily treatable with run-of-the-mill sulfa drugs. It’s the type of pneumonia AIDS patients and over-worked people like me get when the immune system gets beat to crap. Much of that was “out of network”, but I digress.

Go Wolverines!

I’m self-employed and have always been able to take care of all my assignments, except those that were due in January 2014. The last thing I thought I wanted was a lot of people knowing that I was flat on my back and unable to finish what I had committed to do.

As far as most people knew, I was fit as a fiddle. I needed help and I didn’t know how to ask for it, even in desperation.

I had a contract to travel around Wyoming and make tribute videos for the Wyoming Governor’s Art Award recipients. I liked the gig because it got me on the road and a chance to meet some interesting people. A friend and colleague, Michael,  stepped up to finish this job that entailed driving around Wyoming in the dead of winter.

There was a huge final report on a state of Wyoming film incentive grant for a movie project shot over the summer of 2013. Another friend and colleague, Barbara, finished counting all those beans for me.

Every year, I produce news coverage of the Boulder International Film Festival, which includes scheduling production crews. That turned out to be a bit of a debacle, the guy I lined up wasn’t as good at fast filmmaking and how to produce quick-turn-around news packages as I had hoped. Now, I’ve shared the responsibility with another guy, Glenn, who could easily pick up if I dropped out of sight.

I now come up with a  “plan B” for short term projects. Michael, Barbara and I collaborated on a short movie a few years back and want them to disassemble my business if I get too out of it. I still have to find someone to handle my baseball card collection.

When I returned home from rehab the day before Super Bowl XLVIII the community was very welcoming. I wheel chaired myself to the common house for the Super Bowl party, but had to leave at halftime since the tube sticking out of my abdomen started to leak (TMI).

My digestive system wasn’t quite ready for nachos. My septic ulcer repair wasn’t totally healed up.

For Broncos fans, it wasn’t much of a game, anyway, 43-8 Seattle.

I intellectually understood the “what” of cohousing, but didn’t get the “why” of cohousing until I was nearly dead.

Learning how to cram a cohousing  square peg into the rugged individualism round hole is by far the toughest aspect of living in what amounts to, a socialistic system where work is spread equally for the common good.

Asking for help is a constant in cohousing for the good of the whole.

We’re trying to keep the ship moving in the same direction and it’s tough to make that happen if crew members are off doing their own thing, don’t instinctively pick up any slack, or forget to perform a task – never ending reminder emails are a reality in a community of seniors with various stages of memory loss.

By the way, have you seen my keys?

In the outside world, people ask, to be polite, “Let me know if I can help.” In the cohousing world people ask, “What can I do to help you now?” being intentional about it. At my place, for example, we have a list of people who will contact caregivers, drive a neighbor to the doctor or hospital, at any moment. I look at it as paying it forward – You need a jump? I have cables. You’re in the hospital? I’ll stop by when I’m out today.

In my way of thinking, cohousing is very mission driven and best functions using the team approach. When I was in high school, there were the kids who had to be involved in every school activity and be on every page of the yearbook – drama club, 1,2,3,4; newspaper staff 1,2,3,4…

Clawing your way to the top in the outside world is the norm, but in cohousing, the norm is clawing your way to the middle. When I was younger, I was one of those chronic over achievers and have dialed that down.

My community has evolved to become more transparent. Every year, for example, everyone’s HOA dues are known. Intellectually, we strive for fairness, but any objective formula, while “equal” isn’t always subjectively “fair.”

We’re having very frank and open discussions about MONEY issues. It’s taken 10 years of community maturity, but everyone is letting loose of wanting control.

I don’t have much interest in Super Bowl LIII, but a soft spot for the Rams and three Broncos castoffs – Wade Phillips, Aqib Talib and CJ Anderson.

While I wouldn’t trade my stint in the ICU for anything, what I learned about myself was life changing, but I don’t recommend it as the best way to lose weight.

Winter 2013 – Note to self: don’t get sick in December

In the fall of 2013, I decided to enroll in an Affordable Care Act health insurance policy. Everyone was written a letter by their health insurance companies giving policy holders a little time before then end of the year when all insurance plans expire.

Little did I know how close all those would be to home until I enrolled under ACA and was also a recipient of more than my fair share of medical care during the hectic Obamacare transition period.

For most people, there wasn’t much of a transition if covered on the job or some other public program.

I don’t think most people who have real jobs and a personnel office that annually negotiates group insurance realize that insurance actually lapses at the end of each year keeping coverage, apparently, seamless.

Nor do I think most people in insurance groups bother to read their coverage fine print.

Back when I had a real job, I was surprised to learn that as a single guy, in my group plan, I was covered for maternity care.

But when it was explained to me that to spread around the risk, I am obliged to pay to help cover my colleagues who have families or may want to start one. I viewed it as being a good community member.

This was in the 1970s – 1990s and it has been that way since. Now that I’m self employed, I’ve had to annually negotiate m y policy.

Opponents of the Affordable Care Act (ACA or Obamacare) began to point out what they considered to be unnecessary coverage, like maternity care for single guys.

As a quick primer, the ACA was proposed by President Barrack Obama approved by the US Congress and signed into law March 23, 2010. It set up centralized health insurance exchanges where users who weren’t covered by their employer, the Veteran’s Administration, Medicaid, Medicare, or some other program could sign up for health insurance.

Of the US population in 2015, 49% are covered by their employers, and 43% by some other form of coverage leaving around 8% needing health insurance coverage including self employed people like me.

Other than mandating health insurance for all as a means of diversifying the national insurance pool, there are provisions like not being denied coverage for pre-existing conditions and young people being covered under their parents’ policies until they are 26.

I’m one of the self-employed people who has had the same insurance carrier for the past several years. My insurance is routinely “cancelled” when the company annually changed the terms and conditions, deductibles and more times than not raised the premium prices at the end of the year.

I could either take the new plan or be cancelled. I always opted to stick with my carrier, but had to call up every year to see what options I had. Generally, I settled for higher deductibles to keep my payment close to what it was before. In my estimation the insurance industry is a big legal ponzi scheme, if you ask me, but thank God I have health insurance!

… and I knew I wasn’t going to get dinged for a preexisting condition.

People who are shocked or surprised that their policies are routinely changed tossed out letters from their insurance carriers as junk mail.  In March of 2012, I was informed that my insurance would be grandfathered under the ACA if I wanted to go that route – keep my doctor and everything in tact.

Pioneer that I am, I set up an account on the Connect for Colorado Health exchange website and after a few delays and glitches, was a approved for a way better plan from my existing carrier for less price.

So I was “double-covered” with my existing policy and my new ACA policy because I didn’t quite trust the new system.

I finally gained confidence in the ACA and canceled my higher deductible plan which was a good thing.

Politicians have been trying to “Repeal and Replace” Obamacare since its approval. I chuckle when I see the political action committees running ads on TV about the small group of folks who claim to have fallen through the cracks when they didn’t take personal responsibility to take care of their health insurance business during the one-year window during which they had a chance.

Rather than be accountable for their irresponsibility, Obama and all the other socialists are to blame for their current misfortunes.

You know what?

Obamacare, socialism, public / private partnership – whatever you want to call ACA, have nothing to do with reality. Health care reform only has to to do with people like me who were flat on their backs pushing the hospital room call light hoping a nurse’s assistant will come by to empty the urinal or patch a bed sore.

Truth is, Trump, McConnell, Ryan or any other politician can’t help anyone, let alone improving advice individual patients get from their doctors and their staffs. Anyone who disfavors ACA hasn’t been sick lately.

Before I get into the gory details, I have to tip my hat to health care workers in the trenches, namely nurses and certified nurse assistants. The world wouldn’t turn without them. I’ll jump ahead a bit and say that I’d never really had a hospital stay before and after being flat on my back for six weeks.

I couldn’t walk, stand, wipe my butt. The nurses and CNA’s were there to meet my every need, particularly when I got very low and bummed out.

This raises another big topic of self advocacy. Being flat on my back, I was complacent and didn’t advocate for myself as much as I should have. My partner in crime, Diana, was a big advocate. She questioned what was happening and kept on the nurses and doctors, to their annoyance.

She brought over a couple friends and neighbors, Nicki and Evie who also had experience advocating and helped particularly early on when I was first admitted.

I can’t say enough about having a strong advocate. I’m pretty sure, my doctors weren’t waking up in the morning wondering how I was doing.

Over the course of the fall and summer, I was being treated for various types of pneumonia and eventually went to the hospital. I was quite out of it because I had lost a lot of weight – eventually 30 pounds – had no energy or stamina, and no appetite.

What happened next is a bit of a blur, but, my lung doctor did a biopsy to figure out about my pneumonia.

Did I mention the morphine pump?

Meanwhile, I was on steroids which led to a perforated ulcer and stomach contents were leaking into my body cavity causing sepsis. I don’t know this as a fact, but I’ve been told that I was not given much chance of making it through the emergency surgery to patch up the ulcer – mostly because of the lack of eating and general indifference, translated into “failure to thrive.”

I read through my medical record and I was also classified as anorexic. That sounds worse than it is. It means I was very skinny.

So I have this emergency surgery and am being fed pablum through a tube bypassing my stomach and intestines while the ulcer patch heals. This causes me to lose weight and strength. I’m flat on my back between ICU and a regular hospital room and rehab for six weeks.

Since my parents died a few years ago, celebrating the winter holidays have been different every year. I wrote a stage play about this which was produced by Hitching Post Theater a few years back – I’ll have to dig out that story.

This was no different being being in a hospital with the second tier help on duty.

This stint in the hospital was good in that when the biopsy results came back from the University of Michigan, the results figured out about my lung condition as being an auto immune pneumonia now being treated by steroids, which is a good thing – particularly for those of you who had to deal with my hacking and coughing over the summer and fall.

Not so good with the ulcer recovery, I still had a rubber tube sticking out of my stomach that was. removed after a week. So getting to the bottom of my pneumonia was good, the state of my physique, not so good. Then I was kicked out of the hospital.

Meanwhile, I can’t stand, walk or otherwise take care of myself and I’m lifted into a wheel chair and strapped into an ambulance to go to rehab at this place in Denver.

Unable to move on my own, I start sliding out of the wheel chair and bouncing around like a rag doll. I felt like the dead guy, Bernie, in that bad movie “Weekend at Bernies”. The driver pulled over at the cooking school on Quebec and got me repositioned before getting to the rehab center in Glendale, which is a neighborhood in Denver.

The rehab center was an hour from Boulder, served mostly geriatric patients and I was the youngest one there. It was good meeting some folks from Denver.

This rehab center has it figured out. Everybody there gets about an hour or two of rehab each day and the other 22 hours, they feed everyone high protein and lots of carbos. It got a little monotonous plotting out the day based on meal time.

I am totally amazed that I received enough physical and occupational therapy after two weeks to walk out – albeit with a walker, compared to when I arrived as a total invalid.

My diet was simple – eat anything, particularly high protein and sweet stuff – a lot of rare steak and ice cream floats. It takes a long time to gain back wright. I was up 15 pounds during rehab and stabilized after getting 30 pounds chubbier.

After being out of captivity since the first week in February 2014 and getting stronger every day I was getting back in to the swing of things. Being self-employed, I had many ongoing projects.

I think it’s also an Asian thing to be totally self reliant – but this experience has taught me that it’s okay to ask for help. Many thanks to Michael and Barbara for keeping mud in my entrepreneurial cracks over the past couple months of my recovery.

After being out of rehab for a week, I attended the Boulder International Film Festival over President’s Day weekend – I’m on the BIFF Board of Directors. It was my first outing “off campus” since Dec. 16th – prior to this, I was in an ambulance, hospital, ambulance, rehab center, in my condo.

I’m also back in the editing booth – I cut together a tribute to Shirley MacLaine that screened Saturday night at the BIFF.

It’s been a big wake up call for me, particularly about big picture issues – mostly around downsizing and relationships with people.

Small picture issues, I’m now more serious about plotting out some exit strategies for projects I head up and handing off projects to others and getting ready to “retire”.

Even though I’m mostly recovered, I’m still planning for a long road ahead, I still consider myself “disabled” and will likely be recovering for awhile. I may be out and about, but I anticipate plenty of limitations.

I still encounter steps and small inclines and places without banisters or elevators that I didn’t notice before.

My message to the politicians? Keep muddling through the ACA because here’s no turning back.