ellenspictures

Category: memories

  • Twenty one years after. June 24, 2005.

    Twenty one years after. June 24, 2005.

    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.

  • Brian Wilson – RIP

    Brian Wilson – RIP

    When I was a kid we listened to The Beach Boys. We envisioned ourselves as cool surfers, despite the fact that our local beach was nothing like the California beaches, we tried anyway.

    The Beach Boys were hot stars and girls had crushes on them variously. In my gaggle of girls, it was a debate between Dennis and Brian – sometimes Mike Love. But when the hit “Caroline, No” came out, that was a game-changer for me. It was Brian I fixated on. Of course, this faded over time, but I still felt like he was an incredible influence on music from then on, despite the band itself going in and out of popularity.

    Brian Wilson is a musical genius I followed not for his rock star typical groupie appeal, but for his inner poetic harmonic over the top genius. The guy behind it all – beginning at an early age, that sound – the lyrics – the haunting ones in some of those songs that are hidden gems – he was truly amazing in his life achievements.

    It was also so sad to see him essentially destroyed by what is reportedly having taken one too many acid trips – a situation which I personally understood having had an extended family member who fell into the same fate – but never had the same care that Brian had. My cousin lived rough, and was finally saved by some really nice people so that he could live the rest of his days in some semblance of normalcy. Brian on the other hand lived under care from the time he began to struggle. Fortunately for him, he had those means of support that enabled this.

    Susceptibility to developing schizophrenia conditions is still under study, although more is known now that was back in the 1970’s and 1980’s. It is however understood that it is not just one condition – it is more than one and the causes are still not well understood as to what triggers these conditions to just turn on or gradually come on. Drug use of psychedelics is one of those that was an early recognized trigger back in those decades.

    The profiles of my cousin and Brian are similar – the abusive dad – the rebellion – drug abuse – and having studied psychology as a major in university, I know that those components go hand in hand in causing major issues down the road, especially with the father-son dynamic.

    What is especially tragic is that both of these people had gifts that they shared with the world, but could not fulfill their full potential because of the handicaps imposed by abusive overzealous fathers who thought they knew better about everything and used a stick to make the point.

    Fathers take note, mothers, too. You can really screw up things if you think you know everything and feel entitled to dominate. Look inside and figure out why that is. Insight is everything because hindsight is usually 20/20.

    Back to Brian Wilson, it was especially sad to see him go. As long as he was still here, we knew he was still here. The passage of time and people with it is a constant reminder that we should live and love every day because tomorrow is not guaranteed.

    RIP Brian Wilson – you are missed.

  • the anxiety of our demise

    the anxiety of our demise

    When you think about it, we are set onto the path of our journeys to eventual demise from the moment we take our first breath, naive and innocent, launched off the launchpad of our mothers’ wombs.

    Most of us are pre-wired for wonder. As we rapidly mature at first, then as aging does, the process slows down, we divert into a number of directions of pulls or pushes into interesting positions, many in pursuit of figuring out the meaning of life before we get to the end.

    We have our families and our other people in various roles with whom we become acquainted along the way. Some enter, some exit, some return and disappear again, never to return. Life is rich with experiences, both positive and negative. Emotions and feelings are always present despite some people saying that they shouldn’t be. Give that up! We’re humans. Not rocks.

    We often can look back to understand where we’ve come and the relationships with people near and dear as well as the difficult ones. Friends, lovers, family and those with whom we have worked or had as neighbors – all are a part of the long acts of our lives – some scenes are shorter than others – some are dramatically ended, leaving us to contemplate in sometimes painful reflections.

    Some experiences are so traumatic that our spirits may reach close to a breaking point. The layer of spiritual existence integrates within us being in ranges from vacant to intense. Some of us experience these variations and others stay steady with faith to survive the tough roads that we sometimes face. Directions and decisions. Conundrums depending on the complexity.

    With age comes wisdom, but the paradox is that wisdom becomes relevant the older we get and the frustration is that we have difficulties with communicating with those younger who do not appreciate wisdom. Ageism is a bitter pill to swallow.

    Music and expression. Those are gateways between our past memories and the relevance of now. The hope lies with our present experience and past understanding of how our lives integrated with others, both human and animal, spiritually and physically, the connections and contacts at all levels.

    What gets us through the days and nights that are harder than others? It’s up to our own strengths to be able to rely on ourselves. We learn by being independent and confident in situations that are challenging. Figuring out how to understand when we need help and when we can solve it ourselves.

    The wildcards are health…and dangers from nefarious people seeking to steal or destroy just for the delight of terror and torture. These characters have been around since the dawn of man. Yet every day we are reminded more of these than of the good in humanity. Shameful as it is.

    With health is the genetic component we can’t necessarily change. Learn from your history and those who are genetically connected. It makes total sense and is the purpose of that capability within us. We can do our best to survive despite.

    To cope and alter, to modify and still enjoy life. That’s it. That’s the secret. Have wisdom. Enjoy while you’re here. We can’t know what’s next.