Unfortunately, her preparation also includes applying for permanent disability. Apparently, it took the powers-that-be over 6 years to find the correct diagnosis. Too late for treatment, at this stage. Possible surgery, but very bad (scary) odds. She does not blame anyone for the delay-- they were focused on her other life threatening issues, and this problem "slipped their minds." Shit happens. The need for disability, however? Very real. It's the first time she has even had to consider applying for permanent disability. She has always taken pride in her work, no matter the treatment or illness that sidetracks her life. This time is different, though. The problem is not going away, and the current solution (replacing her entire neck with a titanium cage) means at least 18 months of rehabilitative care, where they teach her to walk, eat, and dress herself. Here is what a normal section of her spine looks like:
(pretend you are standing on top of her head, looking down the center of her neck)The center circle is the spinal cord, and the white stuff is fluid protecting the cord. The grey bones are her spinal column, "holding" the fluid and cord together. The above picture is normal and healthy. Here's a picture of the compression and injured spots:
That black thing pushing against the round spinal cord? (the center of the image) One of many growths. Bad, bad, bad. The pieces of white crap on the side of the spinal column? Bits of bone trapped in fluid. Not good. The lack of fluid protecting the spinal column? Gone. Sitting on top of her brain. Overall, a professional looks at these results and goes "holy crap, you're still walking?"
Then, they look at this and go completely silent:
(In case you don't know, the spinal cord should not look like it's "hanging by a thread." The cord is running down the middle of the image. It is "pinched" by bone marrow growths, reducing the cord to 5 mm, less than half its normal size. This means her central nervous system is having problems communicating to her brain.)Yep. You now understand why she has started seeing a psychologist, right? As any human being in a crisis situation, seeing a shrink is the responsible thing to do. He is teaching her to live "one day at a time" and develop skills to manage the many unknowns in her future. Crazy lady thinks her psychologist is the best thing since the discovery of tuna melts with extra cheese and butter-baked bread.
So, why the current angst? Why has she broken her promise to avoid gory details? Well, she needed to vent. The super-duper intelligent folks at the social security disability office sent her for a medical appointment, to verify that the spinal cord injury and current paralysis really exists. Because, you know, people lie. It's hard to believe numerous spine doctors, neurologists, specialists, UCSF and Stanford second opinions, and the various MRIs, CT scans, xrays, myelograms, EEGs, etc... They have to send someone with SPINAL CORD INJURIES to a doctor, to STEP ON STOOLS, REACH UP, JUMP ON 1 LEG, and WALK WITHOUT SUPPORT. You refuse? They deny your claim for disability. You actually do these tests? You sever your spinal cord and die. Take your pick.
Let's just say, the appointment was not a positive experience. Crazy lady refused to do half of the crazy-ass tests they wanted her to do. She had to listen to the doctor complain that her medical records had too much information for him to absorb. Huh? She watched the medical doctor throw her cane on the floor, and refused to let her use anything for balance or support. Her spine is hanging by a thread, remember? This medical professional really had no understanding of spinal cord injuries. He insisted "stretching your hands, reaching up to the sky, it's a good thing for your spine." Crazy lady honestly stared at him and asked, "You did read the neurologist report, right? Stretching my spine like that? It will cause my death." Afterwards, she took a pain pill and called the disability examiner's office to make it very clear: "You do not send someone with spinal cord injuries to this doctor. He will kill them."The part that truly stinks is that they now have grounds for denying her claim. No disability means delaying her surgery. The longer she waits, the worse the prognosis. Crazy lady normally doesn't use my blog to rant about injustice-- but, just this once, she felt the need to share. She has received some fabulous, wonderfully supportive emails from old and new friends. She has kept pretty quiet about the crap because, well...what do you say? She wants people to know that their letters and calls are incredibly uplifting, especially during these moments when she gets frustrated because...
The "system" truly sucks.
Amen.
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