ellenspictures

Category: observations

  • 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.

  • An angel has ascended. RIP James Earl Carter a true American Statesman, Humanitarian, and Global Servant Leader

    An angel has ascended. RIP James Earl Carter a true American Statesman, Humanitarian, and Global Servant Leader

    Former U.S. President Jimmy Carter
    Former U.S. President Jimmy Carter by Carol M Highsmith is licensed under CC-CC0 1.0

    Yesterday afternoon the announcement came that President Carter had passed into the gates of Heaven and we were all saddened, but in awe of what he accomplished in his 100 years-plus in his life on this planet.

    Each day, Jimmy Carter worked to the best of his ability to SERVE others. He did hands on work. He taught. He worked with others to spur innovation and inspire solutions to cure dreadful diseases. He pulled people together to do good work. He lived as a true Christian doing what Jesus Christ taught that many “Christians” have totally missed and messed up.

    Former U.S. President Jimmy Carter
    Former U.S. President Jimmy Carter with his wife, Rosalyn by Carol M Highsmith is licensed under CC-CC0 1.0

    Jimmy Carter epitomized working for the greater good. His wife, Rosalyn, at his side as long as she could be, shared in doing these same selfless acts – their embodied impact on planet Earth and its people have been widely received and deeply appreciated by those in need. With Habitat for Humanity, the Carters built houses for the homeless across the globe. They worked on disease eradication in Africa. They helped people in Asia and Africa and other continents, learn how to properly farm to get better yields from crops to improve the farming livelihood and impact positively local economies.

    He was a civil rights advocate and activist. A broker of peace in the Middle East. A Nobel Laureate. His involvement in politics was brief in comparison to his decades long efforts to make change for the better. To make people aware of the dangers of the direction that political factions are having on human rights and existence especially the rights of women being primary to much of this – this was a large part of his crusade for the improvement of human rights and women’s rights in particular.

    Sadat and Begin and their
    Sadat and Begin and their by Central Intelligence Agency (Source) is licensed under CC-CC0 1.0

    I was heartbroken when he stayed alive to cast his vote for what we hoped would be the first woman president of the United States. However, we will take his legacy and be inspired by what he did. The flags will fly at half-staff from yesterday through January 29th at least – to give a backdrop to the state of the nation as it faces four years of uncertainty. May we look upon his passing as a ray of hope that his influence will help inspire us to building a strategy and solutions to throttle and check once again the spread of fascism.

    Rest in Peace, Mr. Carter. We will miss you. We hope to see you on the other side.

    Hubble Friday - Heavy Metal Stars
    Hubble Friday – Heavy Metal Stars by NASA Goddard Photo and Video is licensed under CC-BY 2.0

  • No. I’m not upset. I just get this way sometimes.

    No. I’m not upset. I just get this way sometimes.

    It’s a crazy world these days. Tech has become overly complicated. Support is thin. Chat-bots (not very good ones) try to handle the questions but are geared for less initiated people than me. It’s frustrating. You get a person on the line and THEY need help to give you help.

    Often not local, they are low paid and scared shitless, deathly afraid of making a mistake. They don’t give their names, yet you have to give them yours – sometimes sensitive information for “security” purposes. The MFA can be its own worst enemy (or yours!)

    It can take talking to multiple people to get to an answer, if then. You may be thinking, “how on earth can I get help? What are these people in charge of this thinking?” No contact with reality. What do they think you have – endless time? I don’t.

    I often get so frustrated I blow my stack which I know isn’t nice and I feel terrible about later. They are just trying to do their jobs and they are probably doing their best and can’t help the system in which they work that was devised by some “geniuses” somewhere else far away.

    After awhile, I call time and just say nevermind. Today, I was told that my issue would be resolved quickly – 24 hours! Yikes. That’s quickly? And I pay for this with a premium support plan? Really?

    Or you have to go through five techs to get to someone who can help. That’s fun. I sit and hold up fingers. One, two, three, four, five, six! At least some of them are better than others – smoother in the transitions and the calls don’t get dropped – the dreaded dial tone… Argh. Or silence of the dropped call…”hello? Hello? Hello? You’re not there, are you?” As if they would answer from the deep… Sure.

    I end up helping myself nowadays more often than not, just banging through the old troubleshooting ways I’ve honed since the dawn of time… Permissions. Files. Wrongly formed paths. Misdirected links. Something blocking something else. Yeah. Nothing changes much. Sigh.

    No, I won’t go get a job doing the thankless job of tech support. Why? Because of people like me! I’m their worst nightmare. Sadly. I need to think about being extra nice especially to the nice ones – the surly ones, not so much…