COMING OUT (pertaining to “disability," not gender or sex pref)

Today I made a decision to make this announcement. I don’t mind calling my disability a disability because that’s just a label. If anything, my “disability” has motivated me to become more “abled” or abilitized - (is that a word?). So I don’t care about attaching this label to my so-called “identity” because that’s a label too.

Words, words, words. Isn’t that what a blog is all about? Especially this blah blah blahg. waywardmuses are always waywardmusing around so it matters not that I’m choosing to pronounce my disability (or at least one of them…) to the world in this way. Labels are like flies. They will land on you from time to time no matter what. It’s all permanent impermanence. ( I love paradox!). Going with the flow is recommended. I trust in Providence and Providence alone.

In fact, I take pride in my disability and choose to wear it like a badge, because I’m totally amazed at what I’ve managed to do while wearing it under my clothes. Imagine what it might do for me on the outside! It’s a style! It’s trending! Maybe I’ve started a new fashion. I’ve certainly been wearing the “lemonade” couture for a long time — even before this disability became a part of my being. In fact, I consider it a necessary undergarment for this particular design.

What’s in a name?

PLS is short for primary lateral sclerosis. So now I have to do the boring thing of putting in links, etc., that will help you understand what it is. Later. For now, I will simply define. PLS is a disabling, degenerative, neurological motor disorder. It lives in the brain and spinal cord but effects the lower extremities. PLS is the little sister to ALS but nonfatal. It’s in the same group of incurable diseases, but it’s a rare one. Therefore, not a lot is known about it because medical research resources always prioritize the bigger, more pervasive illnesses. At this point, I want to give a big shout out to all the doctors and researchers who do contribute much or most of their time to this rare disease. It is truly appreciated! I have my own ideas about the causes which I will discuss elsewhere eventually. And I also don’t believe it’s incurable. It’s just that they haven’t found the cure yet, that’s all. Treatments consists in management of symptoms which is medication and sometimes physical therapy. In most cases, not withstanding miracles of energy healing which can and do occur for those with multidimensional awareness, it remains chronic and progressive if not consciously countered with a management program to keep it “plateaued” so to speak, which is what I do. I’m determined to stay unconfined to wheelchairs and only use them when absolutely necessary. At this time, I use a cane and must use electric carts at stores to get around. I cannot stand on hard surfaces for any real length of time without succumbing to weakness and horrible pain. Pain is the big symptom for me. Pain and spasticity. Sometimes the pain is caused by the spasticity. But in some cases, it cannot be specifically related to that symptom. The pain with me is moderate to severe. My management techniques are private for practical concerns. In other words, I don’t feel comfortable sharing them at this time because I’m not that fond of judgment and being judged. Perhaps at a later time I’ll talk about it, but not now. But there is one option I tried, and it almost killed me: an intrathecal pump manufactured by Medtronic. The pump was deemed defective by the FDA who ordered Medtronic to stop manufacturing it. I sued them and the doctor responsible for administering this option. I am responsible for choosing to ignore the warnings and my intuition. But I was in so much crippling pain that I was willing to take the risk. Intrathecal pumps automatically inject opioids and anti-spasticity medication straight into the spinal cord for immediate relief without the debilitating side-effects of those medications like drowsiness and addiction, among other things. For a super-charged creative already impaired by a sleep disorder like myself, it seemed like a godsend - at first. For some people, mainly cancer patients on their death beds, it is. But my doctor was pioneering a so-called “off-label” use of the pumps and was even partnering with Medtronic in these efforts. To make a long story short, the pump was defective, and overdosed me three times to the point of coma where I lingered on the doorstep to death before I was finally saved by the grace of my Holy Guardian Angel through my husband and an ambitious, caring pulmonary doctor from Poland. For details, please see my YouTube video here: (pending)

Outcomes (Get it? As in the title of this entry?)

Though the evidence was obvious and spoke for itself (res ipsa loquitur ), no lawyer would take my case because they could not make money off it. The legal system is such that experts are required to testify to the accuracy and authenticity of medical records, and experts costs an inordinate amount of money. Then the other side hires their own “expert” to counter yours, corrupting the whole process because then those “experts” become whores arguing against science instead of for it. Theories become more important than the facts which get lost underneath the muddling word warriors’ distortion of such basic concepts of law and justice by their incomplete, out of context so-called “legal” arguments. Then there’s the fact that I was already disabled with no lost income to claim. That’s where most of the awarded money comes from. They could not put a large enough money value on my damages to make it worthwhile for them in terms of monetary profits. Even though my losses were substantial as you will hear in the video or read in my Complaint (the first document you file in Court to bring about a lawsuit.) So yeah - in spite of those damages, I decided to represent myself. I’d done it before - just not in this particular area of the law. So I had to do a lot of research in the areas of the law pertaining to my case — medical malpractice and product liability.

While I did not win the case, I won a significant argument against Medtronic which other attorneys began to use in similar cases. And this was an oral argument. Mine was superior as was my performance in the Courtroom to that of the the elite lawyers hired by Medtronic! It was funny. Anyway, the reason I did not prevail was because the Court would not allow me to proceed without those experts - even in light of the fact that their insistence upon that requirement is unconstitutional considering that I was pro per and could not afford them. One day the law will change to accurately reflect the values of fairness and true justice. But that day was not my “Ginsburg” day. (See the movie, “On the Basis of Sex” about one of our most precious heroines: Supreme Court Justice Ruth Bader Ginsberg.) But I was not devastated. I knew the odds were stacked against me from the very beginning. I just couldn’t feel good about myself unless I tried. When the Judge wrongly dismissed the case, I set it all aside, and was grateful that at least he just dismissed it instead of demanding a motion for summary judgment or something where attorneys fees and costs could be awarded to the other side.

I was proud of the fact that I conducted myself with complete restraint and decorum in the matter, unlike my first major case in Superior Court (Kennedy v Gallagher & Kennedy, 1996). Having suffered brain damage at the hands of the defendants this time, literally — I just did not have the time or the bandwidth for all the creative drama I could have inflicted upon them to make my points - publicly. Therefore, entertainment value does not exist in this case. It was a complete tragedy — what my husband called a real “lifemare.” And while I’ve healed from their wounds to a large degree, some permanence remains. And that’s why I want to make the case and my Complaint available to all and anyone who may need assistance in similar matters. I learned so much from this experience. So can you! But first — the required disclaimer:


Now, go watch the video if you dare!

April 2020
July 2018