ellenspictures

Tag: darkness is just a color

  • 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.

  • Walks down memory lane can be exhausting.

    Walks down memory lane can be exhausting.

    Recently, I was asked to help with a part of a book that a friend is writing, and I agreed, of course. This required me to go back in the way-back time machine and research many things, such as old documents, and timelines, and emails – and such. For the most part, it re-activated memories of the past, which involved some of the most devastating impactful moments of my life. Of course, everyone has similar moments, if they are human, that is, but to everyone, those are very unique, even though they are “similar” in ways that enable psychologists and sociologists to “categorize” these emotions.

    At the conclusion of this, the email with all the information sent over, I’m here to tell you, I’m pretty knackered mentally and actually, I feel that way physically, too – so that’s the old indicator of something that causes some “depressive responses”. You got it. Grief revived. It’s not acute, but definitely, with everything else going on in the world, it kind of leaves me feeling flat, and out of gas.

    What to do? My answer will be to get out in the out of doors and do my usual endorphin generating stuff. I don’t know what else to do? Running girl stuff or aqua-girl stuff – doesn’t matter.

    I just had to file a report — for now.

  • It’s a lot. Ch Ch Ch Changes. Wish we could talk to the dinosaurs, but that’s not going to happen.

    It’s a lot. Ch Ch Ch Changes. Wish we could talk to the dinosaurs, but that’s not going to happen.

    Life is change. How it differs from the rocks.

    Jefferson Airplane

    Although it appears that rocks don’t change, they actually do. That’s where they got it wrong. Rocks are constantly in a state of change, and depending on the type of rock, some are just being born – chemically, physically, seismically, but one fact remains – everything on this planet from it’s birth is still here and there will not be anything added (significant mass) until the planet vanishes. OK, so the occasional meteor or meteorite crashing into the planet might add a smidge of matter to Earth, it is just a smidge and kind of like when another vehicle rubs on your car and leaves some paint – except maybe a meteor crashing into the earth might have significant planet changing effects, which is a bit different than going for the buffing compound to remove the paint smudge from the red car that bumped your white car and left a smear of red.

    So, I digress.

    Change is constant. Some change is disturbing. Some change is happy. But nonetheless, change of any type shifts our attention, may seem to shift our personal axis, and may also make us change direction entirely. For every change there is some adjustment, no matter how tiny. This breaks, you fix it. You get a minor illness, you either wait and take temporary symptom relief medicine, or you go to the doctor and ask for something else based on the doctor’s exam. You get through whatever it is. If it is something major, then you have to make more major adjustments. Life goes on. Somehow.

    This week, in the space of a week, I have been reminded of lots of changes and the ongoing changes that are taking place continuously. A guy fishing in the park apparently, silently fell over and passed away within a few minutes and some kids found him and called 911 and for hours afterward, we witnessed that police investigate thoroughly even though it appears no foul play was involved. Not just one officer, but several were on the case. Nobody knew what happened until the next day. The rumor mill was going nuts. Always amazing that people without information will engage in conjecture to fill a void.

    One neighbor who prides herself for knowing everything walked by on her way to investigate. I told her she might not want to go that route, and she got all weird about that. “Why?”, she said. I told her that some kids found a guy who was unresponsive and the paramedics came and turns out he died. She said she already knew…wait for it…because her son is a doctor (she tells me this every time she sees me – for years)… even though he lives out of state, somehow her having a doctor son makes her an expert about everything. Sorry, I’m sounding catty, but truthfully, its unhelpful. She said she had to hurry to finish her walk before dark. I told her to have a nice walk. What else could I say?

    I couldn’t help thinking about the guy who didn’t come home for supper. People fish in that area all the time. Some bring families with them. Some fish alone. Most are not from the neighborhood, and possibly not from nearby. It’s a good fishing spot as we have heard. But, when things like this happen it’s sort of a leveling that when it’s your time, it’s your time. One would hope that the guy was loving his fishing and passed away doing what he loved. What could be better except remaining alive to continue doing what you love. It makes everyone else take a pause, however.

    I watch and family members are going through life changes. We go through life changes. Even though, day to day, sometimes it feels like it is the same as it ever was – but it isn’t. We definitely are reminded of changes when we witness major events that affect others, that is for sure.

    The ongoing war in Europe, the massive earthquakes in Turkey and Syria and the surrounding region, the horrid weather in the South Pacific region, many many lives affected in major ways – suddenly, or perhaps not so suddenly – but this points up that something is happening, and we should pay closer attention to the details…

    …Something happening here. What it is ain’t exactly clear. There’s a man with a gun over there, telling me I’ve got to beware. …Stop children, what’s that sound? Everybody look what’s going down…

    Buffalo Springfield