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.
