I’ve seldom failed at anything I’ve ever attempted (though it does happen, cigarettes come to mind, but soon). Even at things that I didn’t particularly like, as in my past job with AT&T, I still excelled at what I did because it paid the bills and then some. I remember being bored in college and dropped out to run one of the failing shoe stores my father had in South Texas. I observed the daily operations and our customer’s purchasing patterns for about 30 days; then I went back to my dad with some recommendations. Within six months, business doubled. By the end of the first year, I completely remodeled and modernized the store. By the end of the next year, we went from a measly $200,000 a year to quadruple that amount in sales. I was hands on from creating these elaborate store front windows to meeting the discriminatory needs of an upscale client with a taste for beads, jewels and metallics. Separating ourselves from the department store chains, I was able to develop a niche market that was very successful. It is that same work ethic that I have used here and elsewhere that has given me great success in many of my endeavors.
While running the store in 1994, I began to experience a great deal of pain in my legs. Ultimately, I was told I would never walk again. Not satisfied with the answers I was getting, I sought out specialist from South Texas, to Houston and Dallas looking for a solution. In fact, I never even got an official diagnosis until this past year. Very simple, spinal myelopathy due to advanced HIV. Now, how hard was that? In May of this year, I was sent to yet another neurologist for some back issues I was having. He immediately starts doing this routine that most of these guys do when they’re checking your spasticity. I informed him that I was just there for the back issue and had given up on all the bullshit I’ve had to tolerate from his profession (no offense to him of course). He then looks at me and very plainly states “I can have you walking in two weeks.” Woa…hold on there cowboy! Seriously doctor, I just wasted over a month at the Sheppard Center (world renowned spinal center where Christopher Reeves went to) while they tried to use this contraption to stimulate my nerves to walk again. Of course, I found out later that insurance doesn’t cover it and for good reason. IT DOESN’T WORK except on maybe less than .5% of people with similar issues. He then proceeds to tell me about an operation where they implant this iPod sized contraption into my abdomen where it drips a drug called Baclofen into my spine. The process is called ITB therapy using a mechanized pump that contains a reservoir of the drug and that can easily be adjusted via a hand held device to deliver the proper dosage. It’s been used successfully in treating MS, pain management and a whole host of other ailments that can afflict the nervous system. I had to think about this and did my own research, only to find that this procedure has been around since the early 90s and never once presented to me as an option; even when I was shitting Cadillac insurance policies out of my ass! The overall success rate is very good, so naturally I was excited about the prospect of walking unassisted for the first time in over 10 years.
Flash forward to September when I had the operation. Many of you that follow me on my personal page probably saw my notes about the complications and severe pain I went through afterward. Despite experiencing what might be permanent hearing loss (I have to ask Rick to repeat what he’s saying multiple times) everything else has resumed to normalcy. By late October, I was ready to begin PT with the recommendation I do water therapy. Despite the fact that I have always been proactive in my health and don’t just take doctor’s orders without questioning them, I didn’t make any argument against it. Even though, I have used that type of therapy in the past with little success, muchless improvement. One week into the therapy, I did see some minor improvements and asked the doctor to increase my drip by 100mg (50mg would be normal increase). Obviously, this was a very bad idea, yet he made no attempt to discourage me. For over two weeks I tried to stick it out, but couldn’t tolerate it. My entire body felt like jelly and I could barely support my body. During the same visit, I also implied that I might hire a personal trainer to help with leg strengthening from the atrophy I incurred from years of poor walking and lack of proper exercise. His only remark was to not hurt myself.
The following week, I was in really bad shape and had to cancel my next appointment for water therapy. The next day, the therapist called and cancelled that appointment. She then calls back and reschedules for the following day. When I go in, half way through our session, she informs me that she will be cancelling our future sessions as she didn’t feel there was anything else she could do for me. Okay, so what now? I call the doctor’s office the next day asking to speak with him and he basically tells me “to ride it out” with the personal trainer (you know, the one I haven’t even hired yet). Geez, I wasn’t planning on hiring him full-time. So, that’s the direction I was forced to take. Anyone that has ever had a really good personal trainer knows they aren’t cheap. So yeah, after paying our monthly bills, there isn’t much left over.
I have made significant progress with Stephen my trainer; so much so I need to get off this rollator or as I like to call it my “man purse on wheels” and move to a cane. The only problem, I need some professional gait training and at this point, it is not clear as to whether the doctor is willing to help me or not. Maybe I offended him by suggesting a trainer in the first place. I don’t know because he and I are not really communicating. I’m trying to get scheduled after Thanksgiving with him and need to work out whatever it is between us. I know you’re probably thinking “why not go to another specialist.” Because, insurance won’t cover the liquid Baclofen which is $1,000 everytime I need a refill, which will be several times a year. The doctor is covering all these expenses, which basically ties me to him, at least until I make my first million : )
As you can see, I really need to work this thing out. I can’t do it without him. Which, leads me to my opening statement about having never failed at things I attempt. Since I lost my job in 2007, I’ve had plenty of interviews. Prospective employers love my resume, they’re impressed with my phone interview, but when it comes to our face to face, I just don’t get the job. I had been working with the Georgia Department of Labor just to get certified “disabled” by government standards so I could get preferential consideration for a/any government job. That process took over a year and was humiliating to say the least, as they treated me as if I was one of their mentally challenged clients. Then, when I get to the end of all the idiotic testing, I find out they don’t know how to fill out the paperwork, don’t know the procedures or anything about the process the government has in place for employing “status” candidates. Frankly, I don’t like having to rely on other people for things I should be able to do on my own. My current situation is one of those things. Yet, I understand that I can’t do this without the good doctor’s generosity or help.
Last week when I closed down Party Favorz, albeit temporarily, I was angry, tired, frustrated and felt like I had been banging my head against a wall, with little to show for it. I’ve given up a lot to have this procedure done and it just seemed like it was all about to be flushed down the toilet for no good reason. Over the next couple of days, a cooler head prevailed. Certainly all the personal emails and well-wishes from you guys broke my heart. One of you even managed to make me cry and that’s not an easy thing to do. My intention for this site has moved far beyond my initial goal of keeping myself busy until something came along. I’ve decided against continuing my education and am hoping to be enrolled in a three month accelerated program for recording and engineering, in the spring. This is yet another process that will involve seeking help from an outside organization (financially speaking). It’s what I’ve always wanted to do since giving up the opportunity in 1988. Considering the shit hole the economy is in, I can’t think of any better time than now. With all that I’ve got going on, my primary goal at the moment is to be able to walk again, without assistance. I’ll settle for a cane if I have to. I tried telling myself that if this doesn’t work out, at least Stephen (my trainer) says he can have me bikini ready by the spring LOL. Frankly, I want to have my cake and eat it too; and that’s what I plan on doing.
Just so everyone knows, I’m not going anywhere anytime soon. Your kind emails and generous well-wishes mean more to me than I could have ever imagined. In fact, I was pretty much shocked to be hearing from people I have never heard from about my work and what it means to them. I never realized the kind of impact I was making, which does impart a sense of selfish pride on my part. For all of that, I just want to say “thank you, thank you, thank you!” Often times life can seem hopeless and impossible. I know, because Rick and I are dealing with some pretty steep challenges at the moment. Separately and together, his problems are my problems and vice versa. With hard work and determination, I know we can make it happen. So stick around, I may just surprise the hell out of everyone one day soon. -K
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