Category: General

Sorry for the silence, but this has been a medical week with re-opening for one-day-only Brother Juniper’s. On the latter, some of you may be old enough to remember a “chain” of restaurants called Brother Juniper’s. It was run by a religious order, and to cut a long story short, most of that order converted to Orthodox Christianity and the restaurants (save one) closed. My Church location came about because of this conversion, and once a year in connection with the Talbot Street Art Fair they re-open the restaurant for one day only doing certain favorite sandwiches. We actually still have some of the equipment and signage from the ones in Indy in our basement, which we bring up and use for the event. I’ve been working cleaning and prep most of this week in between doctors and dentist and other delights.

The great news is that I finally was able to get the latest round of neuropsych/cognitive testing done this week. As I mentioned in this post, I wasn’t expecting much out of it directly other than the data. My goal was to use it as a springboard to testing and therapy I think could do some good. I ended up surprised in that I did get something unexpected out of it.

I’ve had some of the standardized testing before (in fact remembered some bits of it as we were doing it), but they hit me with a couple of new tests. Turned out, the doc had actually read up on my case, listened to what I said instead of the usual, and thought some additional data would be good.

He almost blew it at one point, stating that he wasn’t sure it was a direct hit because of the lack of burns/blast injuries on the outside. If he had studied up a bit more, he might have known that many/most do not have those injuries. It’s a bit of ignorance that I’ve grown to ignore as doctors, more than most, hate to be told they are wrong (and can make interesting notes in ones file that are not helpful long-term). This one seemed a little irritated that some therapists had made suggestions/statements rather than doctors on high, but hate to tell him the therapists in my case have been like conspiracy theorists: they are well ahead on points, by about 63-2. I further note that I had no burns or scars EXTERNAL. No one, including the useless first neurologist, thought to do any imaging to try and determine if I had burning (or scarring) internally.

I did ignore that because of what he brought up next. If you did just the basic standard testing, my results still clock out high and there is no major sign of impairment. However, with the additional tests and looking at it not straight on, but from a different perspective, two things came up.

I won’t go into all the details, but the problems remembering things/learning new things most likely stems from the conditions not being met to form new memories. Several factors, but it did remind me of something I had been advised to try at the LSESSI conference: play with a pencil, stick, heavy bookmark, etc. when reading or trying to learn something new. Need to remember to share this with someone else at Church having some issues.

The second part was that I don’t do well in “noisy” environments, figurative that is. My ability to handle multiple levels of information and stimuli is not good. In fact, my ability to react to all of it and make good, swift decisions is not good at all. Add in my reduced reflexes, balance, etc. and I am off point. In fact, I am off point on several levels/operations. I can still work through things (and do) but it takes me a lot longer than it used to. I may no longer the the point on any team, but I remain one who can gather, interpolate, evaluate X-order effects, and plan accordingly with sufficient time.

Which is frustrating, as I remember when this was not so. Which adds its own issues to the mix. I can still do, but structured, ordered environments are best for me.

It’s good to have this, and/or to have some of this confirmed. It also should help with trying to get physical therapy and more approved out of the neurologist. We will see, but it gives me the data to amend my action plan/experimentation on myself so as to refine some of the methods and goals. It may or may not help with the insurance game, but if I have to fund things it lets me know where to invest my funds first.

It’s also good, and in this doc’s favor, that he brought up intermittent issues. Most docs automatically assume that anything intermittent is psychological because they can’t see and/or study it in a steady state. Since a lot of lightning strike/electrical shock survivors have intermittent issues that are physical, it creates a tense situation with the docs. This doc did not dismiss, but noted that some of the issues above could and likely did contribute to the intermittent issues.

So, glad it is done. Glad to get more out of it than expected. Now to fold that new data into the action plan and continue to move out. Want to make the most of this new life. Onwards.

Getting hit by lightning is not fun! If you would like to help me in my recovery efforts, feel free to hit the fundraiser at A New Life on GiveSendGo, use the options in the Tip Jar in the upper right, or drop me a line to discuss other methods. There is also the Amazon Wish List in the Bard’s Jar. It is thanks to your gifts and prayers that I am still going. Thank you.

I think in both my write-up of the LSESSI annual meeting and on Greyhound, I made a comment about riding my bike to the next event. Which sparked more than one thought I wanted to share.

First, if Tesla and Neuralink have any marketing or advanced projects people who are on the ball, they should look at helping sponsor the conference and get some of the members there. It would be a great demo of Full Self Driving, the automated cab concept, etc. for people who can’t drive anymore or don’t like driving much anymore as a result of injuries from lightning and electrical shocks. I know I can see a series of posts here and on X talking about the experience, and it could generate some serious positive exposure at a time when they need it.

Alas, I feel it far more likely that using my bike is the way. In fact, I got to thinking about the concept of doing so as a fundraiser for LSESSI. It would take some help, some serious corporate backing, and some time. Here’s the rough take on the concept.

I’m betting that by the time the September conference rolls around, I should be good for 80-100 miles a day, maybe a bit more. It would be a longer route there using backroads and such, but it is doable I think. It would require a chase car to both provide a safety escort and to have supplies for emergencies. The ride would go Monday through Saturday, with Sunday a day of rest and hopefully attendance at a Church.

To pull off such a thing, I would need someone to help who has experience with corporate sponsorship, organization, and keeping everything on the up and up. I’d really like an 18-Delta along, but to be honest just having a 68-Whiskey doc along would be most reassuring. We would all need to sit down and plot out the trip, as I am betting there would be a couple of long stretches in there where lodging may not be readily available. Add in a couple of extra days because of weather (not riding in or near a thunderstorm thank you), illness, etc. I’m doing well at relearning how to ride a bike, but things happen so you add in a couple of days for that.

Thinking I may reach out to the maker of my bike to see if they have any interest. Be good to have important spares along at any rate.

Main goal is to raise money (and awareness) for LSESSI. Secondary goal is to see if I can do it given all the issues that have come from being hit by lightning. Want to find a way to support and encourage others to push the envelope, maybe even to do some group rides during or at/to future events.

I do all my riding right now wearing long pants, thinking I might stick with that to emphasize the what and why of the project. At most, drop to cargo shorts for the desert portions. Make it a push for average person participation, not a super bicyclist thing. Point out all the specially modified bikes out there for those injured/disabled, as well as showing a way to increase mobility and recovery.

What say you?

Getting hit by lightning is not fun! If you would like to help me in my recovery efforts, feel free to hit the fundraiser at A New Life on GiveSendGo, use the options in the Tip Jar in the upper right, or drop me a line to discuss other methods. There is also the Amazon Wish List in the Bard’s Jar. It is thanks to your gifts and prayers that I am still going. Thank you.

Before I do anything else, I want to thank everyone who encouraged me to go to this event despite the difficulties, and who donated to help make it possible. On the former, I particularly need to thank my Godfather for his push/kick there near the end. On the latter, I can’t tell you how much I appreciate the gifts that helped me to get there. I may be a while paying off the rest, but it was more than worth it to get there.

I’ll cover general transport in another post, but also want to thank Old Paratrooper for his extreme kindness in picking me up in Knoxville and getting me to the conference, and for then picking me up at the end of the conference and driving me back to the bus. Riding in a convertible through the mountains was a thing of beauty. It was great to finally meet him in person, and we had fun sharing tales and stories. Thank you my friend! Also, thanks to Instapundit, Prof. Glenn Reynolds, for joining me for breakfast one morning. It was good to see him in person and to catch up a bit. More on that soon in another post (or three, we covered a lot of ground).

The short version is that I wish I had been able to attend one of these Lightning Strike and Electrical Shock Survivors conferences very much sooner. As in not long after I was hit. The amount of information I got was almost like being hit with a firehose. Even better was talking with other survivors and finding out I’m not alone and not crazy (well, not in terms of the after effects of the strike anyway).

The longer version is that the life I had is gone, and it’s not coming back. In the words of the song, it’s the end of the world as we know it, and I feel fine. In fact, I feel more than fine. There is a part of me that is sad and other emotions at knowing that life is not ever going to come back. My mind and body are never going to work the way they did, and I will never be able to do some of the things I used to do. I’m still a pilot, though I will likely never fly again. If I can adjust to that, I can learn to deal with needing grab bars in the shower.

Fact is, on many levels I had already accepted that and begun moving forward. For parts of my old life, I was and am glad to see them gone. I prefer to see it as a chance to start over, to build a new life, and hopefully a better one, despite the difficulties. While I was never one who worked at Elon-speed/level, I did okay in certain areas. I can still work through certain types of problems, it just takes me longer to do the work. As I noted to Glenn at breakfast, what used to take me 30 minutes to write back then now takes me four hours (or more to be honest).

I can still look at data and spot patterns and trends, it just may take a bit longer. On the physical side, I’m doing a lot better than I was right after the strike and the conference gave me some ideas on how to work to step up my game mentally and physically. It would be nice to be able to do full prostrations, and get up again afterwards. One thing I realized during the conference is that I’ve been viewing, and gaming, my recovery as yet another experiment — one I’ve not bothered the human subjects committee about (think Les Geddes may have rubbed off on me more than I realized).

Which is probably a good thing, as I sure can’t count on the medical field to do much on a holistic level, much less within specialties. The fact is, lightning strikes and high-voltage electrical shocks are a niche field. There is no ICD (ICD-10-CM) code for lightning strike, and few in the medical field are prepared (or even interested in) dealing with the multiplicity of problems that crop up over time in survivors. And we are survivors, as I was quickly corrected when quoting a medical provider involved in my case who did refer to us as victims. Long-term readers of this site know my aversion to the use of victim as a term anyway. You can be a victim, or a victor. Know where I’m going to put my time and money on that one.

I was incredibly fortunate back when we first figured out I had been hit (I thought at first it was a near miss, having missed the hole in the bottom of my foot as it wasn’t bleeding), in finding Dr. Mary Ann Cooper who was gracious and kind enough to give myself (and my GP) some information and guidance. One of the things she did was to recommend my joining LSESSI, which I did. Finally starting to take full advantage of the resources they offer.

One of our speakers was a counselor who’s presentation included information on EMDR 2.0. Having been a previous beneficiary of EMDR, I was intrigued at what he reported and will be using the EMDRIA.org website to find someone here in Indy trained in it. Short version is that in addition to dealing with trauma, EMDR may also be effective in helping to deal with some of the side effects (including second and third order effects).

I have some upcoming cognition/neuropsych testing which may help me with that effort. Mr. Interruptus interjected during my introduction that I was going to be disappointed in what came out of it. Bullshit. I am not expecting a lot out of the whole follow-up in terms of direct help from the neurologist. I’m looking for indirect and to prevent avenues from being blocked. I pushed as I need real data, imaging and otherwise, to plot the next parts of the experiment on myself, and to lay the background needed to see how much I can get insurance to cover of treatments like the EMDR, physical therapy, and other needful things. One thing I have learned over the last (almost) four years is that you have to play the insurance game, which can be a delicate dance.

It is a delicate dance especially given that many medical practitioners (and I strongly suspect most neurologists) think survivors are crazy because of the issues and symptoms reported. Add in that a number of things pop up over time and don’t happen all at the first adds to that. Finally, keep in mind that under the current system, a number of insurers and providers (sometimes the same) could/can make lots and lots of money off you by putting you into home health care or assisted living even if you don’t need (or want) it. Getting the help you do need while avoiding being used to milk the government teat (and lose your freedoms) is yet another dance. As I’ve said before many times, you have to be your own medical advocate, as no one else is going to do that for you. Get informed, push, find new doctors at need — they are not going to care about or look for your best interest, that is up to you.

One thing I want to try came from another survivor. We had a presentation on various therapies to help with some issues (mostly biofeedback, meditation, etc.), which prompted a survivor to talk about something she had used with a student she counseled. Short version, when reading or trying to learn (memorize and more), do something tactile with your hands. Play with a stick, use a fidget spinner, etc. and it can aid in retention. Worked for the student, so I’m going to experiment with it a bit. My basic retention has improved, but if this can help with memorization and recall…

One more thought to share on medical types that was brought up more than once: they don’t deal well with intermittent. Quite a few of the things that can pop up in the life of survivors are intermittent. I’ve had it suggested to me that I’m lazy or crazy when noting that I do well overall but have occasional glitches. If the medical types can’t see it happen, or test for it, it’s all in your head. And they are very quick to make that jump. It’s why you have to advocate for yourself. It’s also why though I am glad to have the latest MRI of my brain, I do wish I could have gotten a functional MRI or even some PET data as those would be far more revealing and useful. But, that’s not likely to happen under the current system as the medical types and you both have to play the insurance game and insurers want to save those dollars…

Outside of EMDR 2.0 and physical therapy, one thing I do want to do is get some regular massage/deep-tissue massage. There are some interesting reports on such helping with those second and third order effects, so figure it is worth a try. Have already found a place near me that says they do deep tissue, so may be checking it out soon. Be great if covered by insurance, but not going to wait for that. Not sure how, but will find a way to pull a visit or two out of the budget.

Before I forget, for all of you who have helped with the guitar and lessons, and voice coaching, thank you! Turns out, I’m not the only one who has had to relearn how to sing. Had a great visit with another survivor who also had to do it. Relearning is needed, fun, and great therapy. I will be pressing on with that. In fact, I will admit that I am enjoying singing again on levels I can’t describe.

It was also very interesting meeting multiple-hit survivors. While there are several theories as to why, reality is that each time you are hit the odds of you getting hit again go up. I really do hope to avoid it, but it was eye-opening to talk with people who have been hit four and five times.

One of the last things we did was to break off into survivor and caregiver groups. I really need to do a full post one day soon on caregivers and how important they are. Please remind me. In the survivor group, the two of us who were new to the conferences went over what was going on with us, our action plan, and related. Those who have been around a while asked questions, made suggestions, and offered advice. All within the framework of not everything works for everyone, and I will note that LSESSI does not endorse any products, services, providers, etc. The roundtable was worth the pain of getting there all by itself.

Finally, I will note that those there noted the importance of Faith in recovery. There is a lot of data showing that success rates go up rather dramatically when one has Faith. Given some of the miraculous things that have happened to me in my recovery, especially after my Baptism, I do believe it.

In short, it was well worth the cost, fiscal and physical. Even with your help I had to pull a good bit out of what I had set aside for moving. Worth it. Boy howdy was it worth it. So, again, my thanks for your encouragement, your gifts, and your support. I’m working on an action plan for the near-term and even long term. I’m also more than half considering biking to either this conference next year or to one in Arizona this September. I think it possible I could do a hundred miles a day, which makes it less impractical, and it would be far better and more reliable than the bus.

There is more I could share, but that’s enough for today. Just remember that if you see typos and incorrect word use here, be gentle as it just means I’m having an off day (one of those intermittent glitch things). More soon.

Getting hit by lightning is not fun! If you would like to help me in my recovery efforts, feel free to hit the fundraiser at A New Life on GiveSendGo, use the options in the Tip Jar in the upper right, or drop me a line to discuss other methods. There is also the Amazon Wish List in the Bard’s Jar. It is thanks to your gifts and prayers that I am still going. Thank you.