Recently, George, Rob’s transplant doctor, has been communicating with me about the book that he is writing, about his experience as a lung transplant specialist. Rob and I are both in the book under pseudonyms due to HIPPA regulations and protecting privacy. I contributed a few years back to this large effort as he was getting started.
I think back about the day, every year, and how things unfolded. Now, it’s been a significant period of time and as time has the effect of change, nothing would look or be the same. The procedures have changed. George told me that because Rob had Mycobacterium abscessus (MyA for short), no more did they do this surgery until the prospective patient had completed a treatment protocol that completely clears the bug from the patient’s system.
I guess that was a contribution, but it makes me sad that the due diligence wasn’t in place back then or perhaps this was not as prevalent. So much has changed in CF treatment and the new pharmaceutical products are truly amazing because they are helping so many people today that to put it plainly, would be dead otherwise.
At this point I don’t get weepy. I just feel kind of blah and sort of sad, of course, and think about what it would be like if he was still here and then I tell myself that that is stupid and only hurts so I try to claw that back and think about something else.
Do we ever get over it? That is a stupid expectation. Of course we don’t. Do we “move on”? Nope. That is another stupid expectation. Do we change? Yes. We do change and we try to look for the good in things if we can. Do I have regrets? Not really. We knew (Rob knew) his trajectory. There was not another viable treatment decision besides sitting and waiting to drown in infected secretions and know that his lungs would eventually fail. That was not an option for him, he decided this early on.
We supported him the whole journey. His friends. His family. I did a lions share of supporting him for his physical needs and emotional as well. My mom, once she regained most of her “better self” behaviorally, was immensely supportive of Rob and spent a lot of time with him while I was at work. That was critical and I am eternally grateful.
There was a lot going on in his final years, and for that I am extremely sad and regretful that this happened. It was actually going on about half of his life, but I wasn’t aware and then it snowballed into it’s own event horizon. That was very tragic. But my main focus was keeping him alive until God decided that this was no longer in the plan.
So here we are in the years after. I am getting old(er) and my perspectives change as one would imagine. I am trying to stay in reasonable health. Every time I go into a hospital I think of Rob and how much of his life he spent going to doctor visits, lab work visits, and being treated in the hospital. Not as much as some people with CF have, but more than “normal” kids…
He did have a lot of friends and was very socially engaged with them. They had a good time when they were together, even if they got into some not that bad trouble, they usually came away unscathed. I think of how funny those guys were when they were together. That is a treasured memory. How many hours they spent behind screens playing games with each other and others that they met in their gaming communities.
Rob was a typical Millennial (Gen Y) guy. His brother (a typical Gen X) was always frustrated by this, of course. Had Rob lived to know his nephew who is a Gen Alpha, they probably would have gotten along fabulously, as his nephew observes the same habits, likes and dislikes, and tendencies. At least I imagine that this is how things would be, but this is just a guess.
I will end this writing today. I share with other friends being a member of the Club for Moms Whose Kids Have Left the Planet. We may talk a little about this but every experience is unique. We hug and are grateful to have had our kids in our lives for as long as it was intended to be.
We know we never had control of that timeline. It’s a God thing.
My Mom often referred to people she knew who suffered from mental illnesses as having “nervous breakdowns”. I would hear her say, “So-in-So, you know, she had a nervous breakdown…” or my Grandmother would fret about a friend who had really sunken down and was struggling – what could she do, she asked? How could she help? Usually, it was baking something and paying a visit…
Then there were the dark situations that people just went silent about. My great-aunt’s husband went into their barn with a shotgun and blew his brains out. My Dad told me that. Not my Mom, not my grandparents… my Dad – because they wouldn’t talk about it… They were ashamed. The subject was taboo. People silently suffered. Nobody did anything but mostly stayed away from them, as if it was contagious. We kids were never taught about it.
My mother never faced her mental health issues until she was in her late fifties – and that was too late. The damage was done. She couldn’t get my Dad to go with her to a counselor. It was something “other people” had to deal with. After my Dad was early-retired, he suffered from horrible depression. He never addressed it. He lived the last ten years of his life, fully miserable because of my Mom’s and his issues that they never addressed. It wasn’t something that people did. That was what my Dad said. He thought it “marked you”. I worked as a mental health support professional, for ten years and I still could not convince them to get help.
The great-uncle who I never met, driven to suicide, by what? He was married to my grandfather’s sister. At times, people mentioned that she was a pretty difficult person at times. Who knows? The reasons were deeply buried in family history. That is where they remain to this day. That poor man. He was probably in a desperate state that drove him to do that. Depression had likely set in for some reason we will never know. His son, my Mom’s cousin, became an alcoholic – very sociable – married an alcoholic – they obviously fought a lot because they were divorced once, then married again. He was very successful, business-wise, but you know he was self-medicating. It’s what people did. It’s still what people do.
Through time, it is the uncomfortable nature of the mental illness that people have – and most have difficulty with facing it with people outside of their families – sometimes within their families. It is, for some reason, viewed as being “flawed” or “weak” or somehow inadequate. There are shades of it, also. A “difficult” personality – might be what it’s called, but then when behavior gets overtly out of bounds, eventually people say that the person is mentally “unstable” or having issues, others might just say the person is “sick in the head” or some other derogatory term. Some people are not very kind, at times, when something makes them uncomfortable – they just paint it negatively to make themselves feel better.
Very brave people today are changing this for all of us…
John Fetterman, Lina Hildalgo, many others are coming forward out of the shadows to say, “hey, I need to go take care of this illness and get better. Then, I’ll be back to do what I was doing…getting stronger so that I can be…” Those include: a better spouse, a better son or daughter, a better friend, a better public servant, a better parent, a better working person – colleague…
If people do not or are not allowed to do this, they suffer – sometimes they act out – and sometimes the acting out is towards others or towards themselves, and the consequences are fatal.
If people disapprove of them and call them out, those people are the ones who should be put down for doing that. Treating those who are suffering in that way is just plain wrong.
Mental illnesses can happen to anyone. Too much stress. A head injury. A brain tumor or other physical disease of the body. A genetic condition that develops over time. A relationship break-up. A newborn baby. Menopause changes. Middle-age adjustments. Combat exposure to violence. Surviving a violent crime. All of these and more can trigger mental health conditions that are treatable if caught early and addressed by treatment professionals.
For Maureen… For Peter… For Susan… For David… For Tom… For Julia… For Andy…The people we’ve known who didn’t make it. The tragedy exponentially affected people in their lives. Patients. Friends. Work colleagues. Husband. Family. Daughter. Students. Teenage Sons. Family.
Maureen. The psychiatric nurse who didn’t show up at work. Never a day at work did she act as if she was suffering. Then one day… She took her own life…
Peter. The employee who was found by his co-workers, after playing Russian Roulette – he lost. Always cocky, always jocular, but underneath, there was something. No one really knew. Until he was found that day…
Susan. The middle-aged well-loved wife, daughter and sister, cousin, and friend – who had struggled since her teens with knowing something just wasn’t right, seeking a diagnosis, and finally, learning that all the treatments she had endured were not what she needed – the errors in medical assessments, that ignored certain very loud clues – were not heeded. In the end, she just couldn’t take it anymore. After fighting cancer, and seeming to have won remission with a positive diagnosis for the future, she had hoarded pills, over years, then taken them all at once, lying down for her final sleep…
David. The employee who was found in the employee parking garage on the weekend with a loaded weapon, who was hospitalized, then returned to work – years later, he succeeded in what he tried to do years before – leaving his nine-year-old daughter to grow up without her dad. This was the daughter he adored – with every day, there were always those times where he would be showing her in her ballerina costume – in her cheerleader outfit – showing her artwork – her cards she made for her Daddy, telling him how much she loved him – and then – he wasn’t anymore. He was gone…
Tom. The guy with chronic clinical depression, at times extremely severe, who in his life had struggled with everything – with his father’s approval – with integrating into the world – during his early 20’s had made suicide attempts, been hospitalized, then somewhat recovered – but, was still struggling – only to, years later, publicly take his own life in a park – found by someone early in the morning on a walk – he was a teacher who left his students and co-workers scratching their heads…
Julia. The proud single mom of two teenage boys – highly competent in her career as a technologist – then one day, whatever it was – she decided it all was too much.
Andy. The son, the brother, the dad, the uncle – fighting bi-polar depression for decades, multiple suicide attempts – finally losing the battle with the disease and succeeding at ending his pain…
They may have suffered silently. With some of them, until the fateful day, we never knew.
Some sent calls for help in different ways. People. Family. Friends. Employers. Work Colleagues…tried to send help and get them help, but no matter what, the disease was too great and too consumptive. Because of the delays in diagnosis, treatment, and lack of support early-on. Because of the shame and the hiding.
We now know that these instances of disease are really diseases of the brain – chemical issues or imbalances caused by many different things – sometimes sudden, sometimes progressive, sometimes there and not even noticed until the critical mass and some stressors push the tipping point. How we didn’t know, at times meant we either ignored the signs or the person was very good at masking what was going on.
The bravery of those in public roles who do disclose their situations – they are heroes to every one of us – to all of those who suffer who fear being judged, or outcast, or left alone as the diseases take them eventually… They are angels.
If someone you know is suffering. Please call your local suicide or mental health hotline. In the UK, call The Samaritans. In the USA, dial 988; In other countries use this link to locate your local support numbers.
Help a friend, a family member, a co-worker, a parent or a child or adolescent be brave and get help. You can be a super-hero for them, if they can’t reach out themselves. Support them. Encourage them. Wrap them in love.
I have moved to different places to live so many times, I’ve lost count. I would need a spreadsheet to categorize how many places I have lived, when, and likely, there will be a few more before I leave the planet.
As I have gotten older, and wanted to see if places I have lived still look the same, I have gone into “Google Maps” and located the place my parents were living when I was born. We drove by this old house back in the fall of 2020, so that I could see if it was still there. It was. It was built just after WWII ended, and was a “GI” house – made in the tradition of using cinder-blocks on a slab, then putting the siding up – probably some insulation, and coated paper underneath… I remember it being light color. Likely, over the years, people have updated it and so it looks a bit different from what I remember.
In my earliest memory, from when we lived in this house, it was of my bedroom, and of the living room-dining room and kitchen. I sort of remember my parents’ room. I remember it had two bedrooms, and small-ish. Of course to little me, it was a lot larger than this picture shows, which is the actual size of the house.
This is the back yard. Another one of my earliest memories was going out back, to play in the water hose, which I did in the summer because it was West Texas and it was hot as hell. There was a frog, probably attracted to the water, and I guess I didn’t see it, but I stepped on it – squished it – and it bled – and I got very upset and started screaming and crying.
Another memory is of me being with my Dad, around his workshop – the building to the left in the photo above – he always gave me blocks of wood to play with, probably so I would not get in his way or get hurt. There were lots of loud noises coming from his wood working tools in the workshop. He was a maker.
Dad’s workshop – what’s left of itVery little me with my Dad. I didn’t get into much trouble back then.I was a Daddy’s girl – and in this shot, I’m not sure who was taking the picture, but Dad looks dubious…
I am pretty sure I was a “mostly happy” kid until I we moved and I left my safety net – my grandparents
I remember spending a lot of time parked at my grandparents’ house. I loved being with my grandmother. She taught me how to do a lot of things like cooking, baking, sewing, and playing cards and other games. She was from Kentucky, and carried many traditions from her home state such as recipes and her idea of decorum and etiquette. She had been to “finishing school” after high school graduation, which was in Boston. Her dad was a merchant of “fine goods”. He passed away when my Mom was a little kid.
However, my great-grandmother, remarkably, I do remember, as she came to live with my grandparents, and did until she passed away, when I was almost two. She was kind to me, and seemed just very fragile and old, which actually, she wasn’t that old – but maybe since she had health issues, it just seemed that way. I was just turning two years old when she died. It’s amazing to me that I have memories of that time.
My great-grandmother, Mom, me, and my grandmother when I was about one-and-a-half years old
I remember sitting with her outside in my grandparents’ back yard, swinging in a hammock. That was one of my favorite things to do at my grandparents’ house when I was small. Where they lived in west Texas, it was pretty dry and
Back at our house, I usually played by myself. I was an only child, so if we didn’t have one of my Mom’s friends with their kids at our house, it was me, myself and I. I remember that I had an “imaginary friend” that came into my life pretty early – maybe age three or four. Her name was Minnie. Later, another one came into Minnie’s life – Mannie. Minnie and Mannie. They were always up to something that got ME into trouble. Only children with imaginations like mine generally need imaginary friends to share the blame for mischief!
I also remember deciding one day that I was going to school. I got my crayons, and coloring book, and got myself ready to walk out the front door. My Mom said, “Where are YOU going?” I said , “to school”. She said, “NO YOU ARE NOT!”, and seemed somehow offended. That surprised and upset me. Each day, I saw kids that looked about my age, walking by on the way to school. We lived just a short distance away. In my mind, I must have thought that all it took was for me to get my clothes on, grab my crayons and coloring book, and go out the door to join them.
So, because Mom was upset and I was crying by then, she got sort of shouty and we got into sort of an argumentative exchange whereby at the end of it I got a whack on the behind and got sent to my room. I look back on that and think, “why was my mom angered by me doing that?” Maybe she thought I was slipping out the door. Maybe it scared her somehow. Maybe she felt a loss of control. Who knows?
When my kids did things like this, normally, I had to hold in my giggles. I think I would have burst out laughing and thought it was really funny and cute, if one of my kids did that – but with my Mom, you could never predict how she would react. Mom was kind of unpredictable, and kind of scary at times.
Mom holding me in front of my grandparent’s side entrance in their wonderful back yard
It was, for me a bit confusing, living with her, not knowing if she would be nice, or mean – and not knowing what I was doing to cause her to be one way or the other. I am still not too sure, looking back, if she felt like I was cramping her style. She was very social, and was working part-time – and likely, me being there at home with her was holding her back or something. She eventually enrolled me in “Miss Harvey’s” which was a pre-school-kindergarten kind of class. I think that I was four by then.
I remember just ahead of one of my birthday parties, Mom was scurrying around trying to get ready to have people over, including some of the kids that were her friends’ kids that got invited – kids I played with occasionally. I was so excited about the party that I barfed, right in the middle of the kitchen floor! Well, Mom got mad. She spanked me and sent me to my room to wait until the party started. I remember feeling confused, and crying a lot, and my face got all stingy.
I remember that when my grandmother got there, she came in my room and hugged me, and took me in the bathroom and put a cold wet washcloth on my face. To this day whenever I need to “de-puff” my eyes, or face, or make a headache feel better, I put a cold wet washcloth on it – and remember my grandmother. She always had some way of making things okay.
We moved out of that house to another house just before I started first grade. We next lived in my grandparents house, because they decided to move back to New Mexico. That was the beginning of my next chapter. I loved living at my grandparents house because it had all these cool places to play and great trees to climb. That one, shown below, was at the time, to me, a really big house. It probably isn’t that large, but it had a great yard and lots of space in the house to play and get into trouble!
Tree I climbed when I was a little kid.Now the yard is fenced across what used to be open – that was a great yard and place to play when I was little and later on, a place to take a nap in the hammock or read a book in the shade, when I visited my grandparents before they moved away from this place.
Moving to the big city almost two days drive away was quite the change. My Mom had to adjust to a new set of friends. She also had to figure out how to get around and navigate the city. My Dad worked downtown, and it took him almost an hour to get from our house to his work. It was definitely different from the small town in west Texas where I was born and we had been living since then. My Mom and Dad met there and got married there. My Mom was actually born there, which was interesting. My grandparents moved in and out of that town several times in their lives. Clearly, they loved it and felt it was their anchor in Texas.
I think about change and how as we move through life, every day has small changes, and then there are some big changes that happen, some unexpectedly.
