Well, I went a long time without a new original post and now I have two significant ones in less than one week. You should have read my post from a frightened radio show guest to the co-host of my own show yesterday. And today I want to talk to you about how the law of attraction is at work in my own life on a very personal level.
Always Wanting More
For a long time now I have been wishing for more tangible rewards from my work as both an amusement equipment broker and a life goals coach. I have wanted to travel more, speak in public, have more clients, appear on television, etc. I do everything I can to make this happen with my existing resources. I write blog posts, reply to requests for guest posts, do radio and podcast interviews, and manage a group coaching community. I have written a second book, and now I have my own radio show. But I always feel I could be doing more, learning more, and helping more people.
Unfortunately, I have yet to come up with that one big idea that will crack this code. But I continue to show up every day, work hard on the things I can control, and have faith that the next day will be the day.
My Mom Asked Her Doctor A Question
My mom has AMD, age related macular degeneration. She has had to deal with losing her vision and no longer being able to drive. She is being treated with injections that have maintained her vision level and are even improving it some.
Last month she happened to mention to her doctor that her son has RP. He got really excited and told her that there were new treatments available and that she should bring me in to have me tested. She got very excited and made an appointment.
Since she didn’t find out what kinds of treatments or clinical trials they had in mind, I wasn’t very excited. I thought I was familiar with most of what was going on with RP. Also, I’ve lived with my current level of vision for so long that I’m comfortable with what it has and how I live with it.
But she made me an appointment, and I agreed to show up. Of course, the insurance people had to cause trouble. On the day of the appointment I found out that the clinic was not on my plan. I have several doctors that I see regularly, so changing insurance providers would risk losing one of my other doctors that is if I could even change at this point in the calendar year.
My mom went to her next appointment for her AMD and told them that my insurance wouldn’t cover the office visit. The doctor told her to make the appointment anyway and that he would take care of the billing. And believe it or not he did. When I did go for my appointment, they didn’t charge us anything.
My Eye Exam
So, I went to see this new doctor. They did all the usual tests for glaucoma and field of vision. I didn’t have to read the eye chart because they knew going in it would be a waste of time.
Other than cataracts on both eyes I am pretty healthy.
Then they put me on a machine that takes an almost 360 degree view of the eye. It was nothing like what I remember from the days when they ran tests thinking they might be able to do something to prevent my vision loss.
New Options For RP Patients
Then the doctor told me that there are lots of new options available or that will be available in the very near future. He said there is gene replacement therapy, stem cell replacement, and the Argus II electronic implants.
Gene replacement is something that came out of cancer research. Many of you have probably heard where they remove the cancer cells, reengineer them in a lab; and then inject them back into the body to fight the cancer. He told me that something similar can be done with damaged retina cells where the eye can actually repair itself.
Stem cell replacement is where they grow healthy retina cells in a lab. After they have enough of these, they implant them behind the eye. The hope is that they will stimulate the growth of additional cells. It has actually had some success in limited trials.
And then there is the Argus II electronic implant. With this device they implant a computer chip on the retina to process electronic signals and send them on to the brain. The patient wears a pair of glasses fitted with tiny cameras on them. The Argus has been shown to allow people to see large images and letters.
I knew about the Argus. I even thought about participating in the first clinical trials for it. However, I thought that given the level of vision improvement promised that it wasn’t worth the health risk of surgery. Also, they weren’t having a trial in the Houston area. The nearest one was Dallas, and they insist you live near the facility doing the trial.
And I had heard about stem cell replacement. I put my name in for a trial in Kentucky but there again I would have had to relocate even if they had chosen me. The study ran out of funding, so it was a mute point.
I had never heard about using gene therapy in the way my new doctor talked about them using it for RP. And while it sounds like science fiction, the idea of me and lots of other people getting their sight back without having to have surgery sounds incredibly exciting.
Need To Be Tested
Doctor Majors explained that in order to participate in these future opportunities I needed to have some blood work done to determine what kind of RP I have and which genes are effected. He also told me that since the therapies are untested and unapproved by the FDA, Food and Drug Administration, that they don’t have to pay for it and won’t. I’m not surprised to hear this. I’m disappointed but not surprised. 🙂
He did tell me that I needed to be tested even though I would have to pay for the blood work myself. He told me that when new clinical trials do become available they will give priority to those people who are already tested and in the system. I sat there thinking okay I need to be tested for something that may never happen or may not occur for years and I have to pay for it myself.
What Will It Cost
I sat there thinking how much will it be. I was wondering are we talking having to ask family members for a loan or are we talking having to start a crowd funding campaign and go on the local news. I went in there thinking yes sure they have new treatments. While there, I allowed myself to get a bit excited regardless of how hard I tried not to.
And I should mention that my mom, brother Patrick, and nephew Seth have been even harder to slow down. I have had to remind my mom several times that these therapies aren’t available now and who knows when they will be. But I had decided that I would get the testing done as soon as I possibly could.
$2100 Is All I needed
Since lots of people scan blog posts, I thought I’d put that in a heading to make it easy for them. 🙂
It turns out there are three tests they need to do to determine what kind of RP I have and what gene or genes are effected. Each test is exclusive. That means if the first test is positive, they don’t need to do the second test. And if the second is positive, they don’t have to do the third. But if they have to run all three tests, it would cost a total of $2,100.
Now, that wasn’t anywhere near as expensive as I thought it would be. And within a few days after the appointment I got news that the money would be available. And that’s the cool part about the story.
Park Train In San Diego
You see last winter I got a new listing on my amusement equipment sales website. A lady from San Diego asked for my help selling an amusement park train that her and her husband had bought during their marriage. I am not keen on having to help sell a ride as part of a divorce settlement, but it is my job to help people sell rides that need to sell them.
I had gotten a call from a buyer in Minnesota. Richard Sherbrook, a man in his 70’s with a vision for a family theme park in his community, needed a train. He had heard about the one in southern california and asked about it.
I had two trains for sale at the time, so I sent him all the details on both. He liked the one on the west coast because it was set up and operational. He made a trip out there to look at it, but thanks to a safety switch being set in the off position; it didn’t run during his inspection. The owner figured this out and recorded video showing just how great the train runs. 🙂
He went home and started working on other projects. He finally asked me about going to see the other train. It is in North Carolina and a bit famous having come out of the Liberty Land Amusement Park where Elvis Presley and his friends and family were known to hang out.
However, its not in running order, and its been stored outdoors for many years. It will need a lot of work to get it running again. I think Richard decided to go with a train that he knew would run right away even if it would be difficult to dismantle and remove from its home in California.
I got a message from my client Susan two weeks ago telling me that Richard had made an offer that she had accepted. Her ex-husband had the right to match any offers within 72 hours. So, the waiting started. Happily, for me her ex failed to match Richard’s offer.
Then I got even better news that Richard would be there on the upcoming weekend with a cashier’s check and start removing the train. And true to his word he was there this weekend taking it apart.
I am hopeful of receiving my commission sometime this week or early next week. And once it clears our bank I plan to call and schedule the blood work to get me on whatever lists I need to be on.
When it comes to selling amusement equipment especially used rides, games, inflatables, concessions machines, etc; its not a quick process. There aren’t as many sales as I would like, and they always take longer than you would hope. This train has sold relatively quickly, and we are still talking several months from listing to concluded sale.
Things Are Coming Together
So, a sale that started several months ago just happened to close at a time I needed it to and for the exact amount of money I needed or would need. That’s not an accident or a lucky break; that’s the hand of God at work. You can call it the universe at work or the law of attraction, but it comes down to having faith and continuing to live life with a positive attitude.
In the past I wouldn’t have been a good candidate for any of these because I wasn’t in good enough health. Whether its a clinical trial for a new therapy or thinking about getting a guide dog; they always want to deal with people who are healthy enough to fully participate. And before I had the gastric surgery and lost all the weight this wouldn’t have been me.
Also, in the past the clinical trials have been in far off cities. I would have to had relocate to participate. Now, there is a doctor who lives right here in Houston who is well known enough in his field to be part of any future experimental treatments.
Faith And Blindness
IN the past people have asked me what I think about God and losing my vision. I’ve always told them that I believe it happened for a reason. I believe that if God had wanted me to see I would have never lost my sight. I believe that if it ever serves his purpose for me to see again, then I would get my vision back then and not one second sooner. But for now his will seems to be that I can do more good for myself and those who know me by being blind.
Since he often uses people to accomplish his will on earth, it wouldn’t be a problem for me if my sight was restored by the work of researchers, doctors, surgeons, etc. After all, many of these people are spiritual people with strong faiths of their own.
Wondering What It Would Mean For The Blind Blogger
I do have to admit to something that I’m not really proud of. I’m sharing it here because its important for you to know. When I first started thinking about the idea of getting some or all of my vision back, I wondered what will this do to me. I don’t mean me as a person but me as a brand.
I have worked hard at developing the blind blogger site over the last couple of years. I have done a lot of interviews where they referred to me that way. It started as an easy shorthand, but its become part of who I am. And the idea of not being this entity any more is a bit scary. Its kind of like when I had to accept that I wasn’t a carney any more after seeing myself that way for most of my life.
I wondered if I would have to change my name or the name of my blog. I never worried that people wouldn’t find me interesting because after all I work in a field that is unique. That being the brokering of amusement equipment.
Phone A Friend
But I did what I always do. I emailed my good friend Adrienne Smith. And she made me see the possibilities.
She explained that rebranding would be the least of my problems. To her being someone who has experienced all aspects of vision loss would only make me more valuable as a coach. She said just think you will be one of the few who has gone from perfect vision, adjusted to gradual vision loss, lived with total blindness, and then experienced life with vision again.
Yes, it is so important having good friends at times like this. They can help you see things in a whole different way. They can encourage and console you depending on which you need at the moment. And sometimes they can just give you a needed kick in the but. 🙂
With her help I have decided that the website will always have a place. There will probably always be blind people either as a result of injury or of new genetic diseases. And The Blind Blogger Website could always become a platform to encourage, inspire, motivate, and showcase these other amazing blind people.
Decisions To Be Made
While the gene replacement and stem cell therapies are off in the future, I do have a decision to make soon. The clinical trials for the Argus II will be starting later this spring or early this summer. I have to decide if I’m interested.
It is a pretty invasive surgery for a limited amount of vision improvement. I’m still not sure the reward is worth the risk. However, I’m thinking it over and praying about it.
Dr. Majors explained that having the implant wouldn’t preclude me from having the other procedures should they come along. He said that I could have the implant in one eye and do gene replacement or stem cell in the other.
However, I wonder why they don’t put implants in both eyes. I mean part of the power of the human eye is in the fact that you have two of them working in concert with their combined images being interpreted and processed by your brain. I’ll have to ask him about that. You know me. If I am going to do something, I am going to go all in. I’ll let you know what that answer is.
I would appreciate your thoughts on the implant. In the end I know it would be my decision. But I have lots of great friends online and have learned to value their opinions and suggestions.
Perhaps you know someone personally or online who has had the first generation of the implants and can speak to the surgery risks and vision rewards. And of course your prayers and positive thoughts are always welcome.
I Want You Along
No matter what I decide I will be sharing my decisions and the process with you every step of the way. I will also be sharing anything else that I think can inspire or motivate you to take action in your own lives.
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Sharing Is Caring
When it comes down to it, none of my work can help anyone if no one reads it. So, I need you to share this post with your friends and families. I need you to share, tweet, ping, poke, post, and whatever else all the cool kids are doing with blog posts these days. 🙂 And I will do my best to do the same for you.
Well, that’s it for now. If you have any questions, all you have to do is ask. I want to be here for you as much as humanly possible.
And please feel free to share your own successes, setbacks, and comebacks with me in the comments section. I want this to be a community not just a blog where I share and you watch, listen, or read.
Until next time thanks and take care out there, max