Writing the Disabled Character, Part 1

Here I am using the term “disabled” loosely. This can mean anything from quadriplegia to asthma. If an illness/condition is as much a part of their character sketch as their humor, then consider them a “disabled character”.

There’s lots of things to keep in mind but right now I want to focus on medication. Some of us Real Disabled Folks take a lot of them. Currently I have eight full-time prescribed medications and two supplements, resulting in me taking seventeen pills and four puffs on an inhaler. Remembering to take them, and taking them at the right time, is a pain in the ass. Add in the Filling of the Pill Organizer Thingies? And I am so done with taking meds. But wait, we’re not done. I also have five as needed medications so I need to keep track of when I last took one and if one of them is going to interfere with something else.

Many conditions you can saddle your character with are going to require a medication. You don’t have to name it, but you can mention them taking it. The frustration of it. The “crap, did I take it this morning?” or the “is it Friday already?” (because we know what day due to the pill organizer lids). This doesn’t have to hamper your character. It can add a certain depth to her. It can display a part of her personality in unique, distinct ways. Is she OCD? There ya go! Bottles lined up, tray filled regularly, alarms on her phone, etcetera. Is she the complete opposite? Does she have alarms set up not because she is OCD but because she otherwise would never remember? And yeah, there’s apps for that. Sense of humor? She can give them all names. Or mess up the generic names.

And yet this can be done in simple little passing scenes that not only set up the character, but set up her life while a the same time carving out the shape of your character. You can have that character be mature and take her medication like a good girl. Or be a rebel and purposely miss doses. Or have them accept the things as just part of life and handle it with as little thought as what side of her toast to butter.

If you do give them a disability, even a mild one like hypothyroidism, Google is your friend. So is your own physician. Read through some forums. Understand what the condition is like with just as much expertise as you would any other part of your novel. Don’t mess it up. Because disabled readers will notice. We’re so excited to see “us” in books but don’t think we don’t ignore mistakes. If the character takes a pill one morning and bitches about how she has to take it every morning, she damn well better take it ever morning. She stay over with her new love, where’s that medication? Even if she decides it is okay to skip a day, mention it. Or don’t mention the medication at all. You can say she has a condition and just not mention medication which would be perfectly fine. We read books all the time where the characters can go six months and never go pee so we can handle a disabled character not mentioning her medication.

Riding the Waves

Because my muscles are always tense, when I hurt myself, it is always a bucket of fun. The spasms and pain wash over me like waves. Sometimes they go fast like small ripples. Other times they hit like white capped breakers, eroding me away as they slowly pound their way over me.

Today my guardian angel earned its wings.

Today I had picked up Whisper from the vet and we were on our way home. We were coming down Monticello, a curvy road connecting Weaverville to the river. Another road, New Stock, intersects it not too far down. It was a busy time of day and there were several cars lined up to make a right from New Stock onto Monticello (which would put them coming toward me). And there was one car that wanted to make a left. I saw him. He should have waited until he could see around the other cars but I knew he would not. I knew, I knew! I knew he was going to pull out so I slowed down. I thought he was going to prove me wrong but, alas, he did pull out in front of me but he waited until the last second to do so.

I slammed on my brakes, my tires screaming, and stopped with the hood of my truck right at his passenger door. Did he stop? Nope. Did he wave an “oops, sorry” wave? Nope. Did I shit my pants? Nope, but I think Whisper did! I was furious. Absolutely furious. Had I not been able to stop, I would have hit him hard. I was doing the speed limit, but that doesn’t matter, not at that angle. I checked on Whisper (she had flown forward to hit me in the shoulder) and we continued on. Just a short bit down the road (as in almost within sight of the intersection) he makes a left and I laid into the horn again, just for spite. Yeah, I’m a meanie.

That’s when I realized I had trouble raising my arm to hit the horn. The arm that Whisper had hit. When I saw him coming out, I had both hands on the wheel and was turning to the right to avoid him if I could. But when I heard Whisper skidding forward, I had put my arm out to catch her. Her body had impacted my shoulder and upper arm fairly hard. And now that arm was not happy. Neither was my neck.

I felt the waves start now that the initial anger and shock were over.

Luckily my phone was within sight on the floor. I couldn’t reach it but I could see it was face up. I was able to get Dragon (a voice activation app) to text Lorna and tell her I was in trouble. She was already on her way home. I heart Dragon!

By the time I was home, my right arm was useless. My right foot, the one that had slammed on the brake, was feeling sprained. My back was burning, my hip was in spasm. And Whisper was happy to be home! Lorna let her run around a bit, watching to make sure she was fine (she is, other than a cold belly from being shaved).

It’s been almost 6hrs now and the spasms have stopped. Just my neck and the right side of my upper back are still pissy. Vicodin and Baclofen are my friends.

Don’t Ever Break Your Neck

This turned out to be longer than I thought it would be so I just made it another blog post.

“Don’t ever break your neck.” That line was said many, many times by Russell Reno, my maternal grandfather. When he was in the military (Army-Air Force), another Private pulled a practical joke. He jerked down and back on Papaw’s helmet, breaking his neck. He wasn’t paralyzed or anything, just broken bones. It limited his career in the military, though. He was stuck in the states and grounded. When he got older, he would rub his neck and say “Don’t every break your neck”. He said it so often, it became a family slogan.

And no, I’ve not broken my neck. I’ve had “issues” with it for eons and it has finally degraded to the point that surgery is the next step. I am partly relieved because FINALLY something is getting done. And I am partly freaked out because ew, gross, surgery!

But let’s back up a bit. A bunch of fine, beautiful, wonderful, giving folks donated toward my goal of getting another dog to train as a Service Dog. But nothing has come from it yet. Getting that puppy has been a rocky ass road and I thought I had reached the destination at last. But, nope. Rebekah James (Redyre Rottweilers) has a beautiful female Rottie named Giggles. Giggles was to do the deed and produce her first litter. Except she came into season sooner than expected (before all her exams were done) so it was put off. Meanwhile, a litter Redyre had by another female (KK) was born and was thriving. Then they got parvo from a neighborhood dog. Rebekah lost one of the pups and went deeply into debt. She swore she was not going to produce any more litters. She’d had her heart broken enough. So I went looking elsewhere while waiting to see if she was serious. I found Cathy Ruben at Silverhill. Another excellent breeder who has quite a few of her pet quality dogs out there being therapy dogs and service dogs.

Which brings me to about four or 5 weeks ago. Silverhill was about to have a litter born. I was about to send her a money order. And then my arm got heavy. And my hand went numb. And my forearm. I couldn’t type very well with my left hand. I had yet another MRI done. Now there were bone spurs along with the everything else wrong with my cervical spine. I went to see the orthopedist again. He recommended I have an epidural injection done. That’s when we realized that this time was serious. This was not a “go to the PT again” fix like all the other times. There was no way I could handle an 8 week old pup. I called Cathy Ruben and cancelled my request for one of her pups. That’s when she told me they had been born just a few hours before.

Dammit to heck.

I was this close to getting a puppy finally. This close!

Back to the neck. I had the injection and it didn’t work. It actually made things worse and brought back older symptoms that I’d not experienced in years. Like, my face went numb. Now that’s a lot of fun! Try it some time! And today (12/17), I saw the orthopedist again. I don’t like him very much but he’s supposed to be a good surgeon. His people skills stink. Anyway, it is time for surgery. Some time in January I will have an anterior cervical discectomy and fusion (ACDF). I could wait, let more symptoms appear or these get worse then do the surgery. The worsening or increase would definitely show the source. Or I could see if they go away on their own. I’ll hold my breath if you hold yours. Didn’t think so. As for the surgery, there is a high success rate that the symptoms will be alleviated. Not so high a success rate the neck pain and headaches will. By going through the front, there is little cutting and a lot of moving stuff out of the way. Gross but there it is.

As for the puppy, Silverhill hopes to have another litter in the spring and…Rebekah and Redyre has decided to breed Giggles after all. As soon as I heard it, I sent her an email immediately, demanding (yes, demanding) to be put on the list. I even said I would take a nasty male dog if there were no females. I was disappointed (such a mild word for what I felt) I had to put off getting a pup again. Finding a good breeder is extremely difficult. I was even looking at one in Canada and one in Berkeley California. But there is no way I could have a puppy right now, not with the surgery coming up. I should be recovered about the time Giggles’ litter is born (that is if she even gets pregnant).

So we will start getting the house ready for my recuperation. Maybe even get a 2nd opinion on a few questions I have about the surgery itself. It feels good to be FINALLY moving toward getting this neck fixed. We’ve been going to Carolina Spine for over 15yrs now, just for that.

Bend, Not Break

I used to have a wooden sign that said in German: Biegen nicht brechen. Bend, not break. Like a tree in the wind, I bend but don’t break. Or that is my intention. I need to find that sign because I need to be reminded of that again.

When I was 14, few days shy of 15, I learned a big word. Over time, I mangled my memory of it and it isn’t the right word anymore. But it meant giant cell bone tumor. I learned other big words: ilium and encapsulated. I bent a lot that year. And the one that followed. I grew up a lot, too. I tried briefly to be a brat but didn’t like it that much. It just wasn’t my style.

When I was 25, I learned another set of big words: Ehlers-Danlos Syndrome. With it came hypermobility, sublux, and hyperelasticity. And I learned about morbidity and autosomal genetics.

I’ve learned about other things, other big words over the years. Some have been just breezes that ruffled a few leaves. Some have broken a few branches. One or two have been winds so strong, I was almost toppled.

I am 48 and have learned yet another big word. I lost some branches. I bent so low, some roots were exposed. The new words are epidural lipomatosis. Also known as a mass in the spinal column. In my case, it is at L4 (the 4th lumbar vertebrae) Theses fatty masses are very rare. Even more rare in females. They are usually caused by steroid use, obesity, or Cushing’s disease (which I do not have, thank God). I was told to live with the pain. That I had to lose 100lbs before the pain would go away. That until the spinal cord is compressed more and the symptoms much worse, there is no course of action other then treat the symptoms (which he was leaving up to my GP to handle). Of course, I was depressed as hell. A hundred fucking pounds? Was he nuts? That would put me at a weight less than what I was in college! The summer where all I could afford was bloney and bread. It wasn’t going to happen which meant I was stuck with yet another set of pain for the rest of my life.

I don’t think many people can understand the level of pain I have on a regular basis. And I hope no one ever does. But the idea of yet more added to it and I didn’t know if I had the strength any more. My back alone is like a Bingo card. C4-7 (compression, stenosis, impingement) , T2-4 (compression), L4-5. Bingo!

A family crisis pulled me out of my own funk this weekend and made me think outside my own head for a few days. Which gave me a chance to see the entire picture better. I broke the problem into chunks and will deal with it that way. It’s the only way I can, really. Else I’ll break.

And What a Life It Can Be

One of the very few good things about Facebook is the ability to notify or update a whole bunch of people at once about something. Like a book release. Or the progress of someone who is sick.

I am currently keeping track of three kids on Facebook. Tripp, Tyler, and Olivia. Olivia and her brother Tyler were in a car accident four weeks ago. She suffered a brain injury but bounced back rather quickly. She’s doing great and will probably recover completely. Tyler’s injuries are more spinal. Essentially, his skull was separated from his spine and his spinal cord was stretched. C1 and C2 were knocked completely out of place. He just had surgery to put them back and they ended up reattaching C3 and C4 as well. Tripp was injured just over a year ago. He was just 2 and was playing at his day care when a limb fell and hit him in the head. Tripp recognizes everyone around him but cannot move much, nor speak or swallow. He is making progress, slowly but surely. The brain is a marvelous thing at re-routing itself.

But this post is about Tyler. Or, rather, the life Tyler may be facing. And that’s the life in a chair. Some say that’s not a life. Some say “He’ll walk again!” as if that is the only thing there is. For some people, that may be true. I wrote a post on his FB page, trying to gently say “no, it’s not the only thing there is”.

We were watching television the other day and it was about how those older science fiction writers (Asimov, Clarke, etc) managed to get some of it right. They had this guy talking about an exoskeleton. It’s a long way from being done but he can strap it on and basically “walk” with it. He’s basically a quadriplegic due to a bomb while in the military. But what he said struck me hard: “This will get me my life back”. I wanted to reach through the screen and slap the shit out of him. He owned a successful research company that, even though they had not yet reached their goal, their work had spawned patents that were now going in other directions and doing great things. He must have a brain because a lot of the planning he did himself. He tries all the prototypes himself first. He looked really muscular so he must work out. Yet, he says he had no life because he couldn’t walk. And that’s sad.

But he’s not the only one. I hear comments like that all the time. One’s life does not end when one’s butt is placed in a wheelchair. One’s view changes. One’s life changes. But one’s life does not end. Alterations have to be made, yes. But alterations have to be made for most any life change. Get married? You’ll need everything for 2 now. Have kids? Wow, now that’s a life alteration!

So Tyler, like I said before, having the goal in rehab of doing all you can to perhaps someday walk again is a good goal. But putting all of your mental eggs into that single basket is not a good thing. Have a life where you are. If your life means you will go from a power chair to a manual and then to crutches then to cane, GREAT!! If it means you go as far as the manual, that’s great too. Live life to the fullest wherever you are. And you are surrounded by folks who believe in the power of praying to God for healing. Sometimes, God’s healing isn’t exactly what you asked for. And sometimes God’s answer is No. God loves you even if you are walking, limping, or rolling. And if God thinks you can do what you need to do rolling, then, well, that’s what might happen. Trust me, I’ve gone rounds in the boxing ring with God on this healing and the lack thereof business for many years! He and I ain’t done yet but we’ve agreed to disagree and I’m allowed to stomp his right foot when I get there.

You’ll be fine, wherever you are, however you get there.

Matters of the Heart

For the past few weeks, I’ve felt like crap. My heart has been skipping along, enjoying itself, while the rest of me was dizzy, stuttering, and tired. Tests take a while to schedule then take a while to be read so we’ve been in “hurry up and wait” mode.

I’m used to hearing “we don’t know what it is but you seem fine” and “we know but it’s nothing to worry about” and “learn to live with it”. My mother was once told she needed “the elixir of life”. Seriously.

First we did the simplest. We lowered my blood pressure medication. Beta blockers do a great job of treating hypertension but they also tend to slow the heart down. In my case, that was good since mine tends to run fast ’cause I don’t. Run that is.

No change, though so next I had an ultrasound of my carotid arteries. They are fine. That’s good.

I wore a Holter monitor for 24hrs. The results from that were mixed. On the one hand, I had normal sinus rhythm (meaning the heart beats in a rhythm linked to our breathing). But, I also had a lot of PVCs. I know I go to Lowe’s a lot but, really.

Okay, get serious here.

Premature ventricular contractions (PVCs) are extra, abnormal heartbeats that begin in one of your heart’s two lower pumping chambers (ventricles). These extra beats disrupt your regular heart rhythm, sometimes causing you to feel a flip-flop or skipped beat in your chest. Premature ventricular contractions are very common — they occur in most people at some point.

(…)

Your heart is made up of four chambers — two upper chambers (atria) and two lower chambers (ventricles). The rhythm of your heart is normally controlled by the sinoatrial node (SA node) — or sinus node — an area of specialized cells located in the right atrium. This natural pacemaker produces the electrical impulses that trigger the normal heartbeat. From the sinus node, electrical impulses travel across the atria to the ventricles, causing them to contract and pump blood out to your lungs and body.

Premature ventricular contractions are abnormal contractions that begin in the ventricles. These extra contractions usually beat sooner than the next expected regular heartbeat. And they often interrupt the normal order of pumping, which is atria first, then ventricles. As a result, the extra, out-of-sync beats are usually less effective in pumping blood throughout the body.

Why do extra beats occur?
The reasons aren’t always clear. Certain triggers, heart diseases or changes in the body can make cells in the ventricles electrically unstable. Underlying heart disease or scarring may also cause electrical impulses to be misrouted. Premature ventricular contractions may be associated with:

Chemical changes or imbalances in the body
Certain medications, including common asthma medications
Alcohol or illegal drugs
Increased levels of adrenaline in the body that may be caused by caffeine, exercise or anxiety
Injury to the heart muscle from coronary artery disease, congenital heart disease, high blood pressure or infections (myocarditis)

(source: Mayo Clinic)

So, that’s where we are now. And here’s the plan.

First, I am to go back to my original dosage of beta blockers. My BP has been slowly rising but the worrisome part is the systolic (upper number) has gone up to be way, way high. As in 100 pts or more higher than the diastolic (lower number) which is also rising. 195/70, 193/83, 196/91, etc. Not good.

Second, I am to cut back on caffeine. Not that I am a caffeine junkie, but I do drink Coke during the day at lunch. It is my treat of the day. If I have a headache, it is part of my treatment when one first starts. I’ve been having a lot of headaches since this started (which is why I had the carotid ultrasound) so I’ve been drinking more than one a day which didn’t help the PVCs which gave me more headaches which….you get the circle.

Third, I am to start taking my blood sugar levels more often. First thing in AM, 2 hrs, and 4 hrs after largest meal. It could be the high blood sugar is stressing my system which in turn freaks out the heart. Since my blood sugar is highest in the afternoons and that’s when the skips were the worst, we want to see if the dots connect.

And fourth, the line was drawn in the sand for me in terms of when to go to the ER. The other day, while yelling at the football games, my chest started hurting. Then it would go away. In the afternoon, when the skipping was the worst, my chest hurt after each hard THUMP then would slowly go away. Until the next one. So the doc fussed at me then said “If it happens again, go to ER. If nothing else, we get a picture of what is going on, even if nothing is going on.”

See, I have EDS and my muscles are constantly tight trying to hold me together. So on the one hand, it could be the heart was under a lot of stress and reacted with pain. Or it could be that two weeks of being chest conscious, I was unconsciously tightening those muscles which started having spasms. We’ve had heart concerns before but the pain was from sternum inflammation. Which hurts like the bejeebers, by the way. Don’t try that at home.

And fifth, one I added on my own, I am to continue doing the mini-meditation work I’ve been doing. A good friend said to use emerald green and sometimes pink (shudder) so I’ve been meditating on enveloping myself in emerald green that has a pink line around the edges. Doesn’t look as bad in my head as it does outside of it. If nothing else, it is making me feel like I am doing something to help myself vs sit here on my ass all day, worrying.

So, there’s where I stand. Um, sit. Whatever. Still concerned but relieved my heart is fine, just not feeling well at the moment. If you can, keep me in your prayers. Envelop me in green (but not too much pink) and don’t send me chocolate. Dammit.

Medicare and Medicaid Idiocy in NC

(the below is based on my understanding of how this all works)

[rant]

Medicare is a federal thing, granted to people over 65 (or 67?) and to the disabled (and some others). To receive Medicare as a person with a disability (PWD), one must be declared “disabled” by the Social Security Administration (SSA). The SSA determines the declaration on the person’s ability to obtain and maintain “gainful employment”. SSA is completely employment based. PWDs who gain the declaration from SSA receive Social Security Disability Income (SSDI). The amount paid is based on how much the person paid into the program while working. If a person was self-employed and did not pay into the program, they are not eligible for SSDI nor Medicare.

Medicaid is a state thing. Most states base the eligibility on income although there are other criteria.

A person can have one and not the other or they can have both. I have both. I have Medicare because I applied for and was granted SSDI about ten years ago. Since I cannot be on Lorna’s insurance even if we were married (DOMA), I have both medical and prescription coverage under Medicare. I have Medicaid since they only consider my income and, including royalties and SSDI, I only earn about 11K a year. Because Lorna and I are not married, she is seen as a housemate. Even though we support each other financially, her income is not taken into account.

Like most states, North Carolina is losing money. And like most state governments the first place they discuss cutting is Medicaid. NC has a new Republican governor, Pat McCrory who from the beginning is proving to have his head up his ass, one hand on the Bible, and the other hand doing a circle jerk with the other Republicans and the corporations who own them. One of his first moves was to threaten closing several liberal art state college programs, primarily any gender studies. Even though hundreds if not thousands of businesses (including rape crisis and victim advocates) use these educational programs, McCrory believes they are wasting tax money.

Now McCrory wants to “privatize” Medicaid. His idea is to have 3-4 groups hand out the money in the form of physicians having only X amount of dollars to spend on each Medicaid patient.

Let that sink in a minute.

Several years ago, Medicaid tried to limit how many physical therapy visits a patient could have. I can’t remember the amount but it was ridiculously low. So low that many patients with chronic conditions would have run out of their yearly allotment in less than 6 months. I was one of those people. I could probably go to PT twice a week and have something legitimate to work on. We had to teach me the steps, have me do it at home, then come back in two weeks to discuss and learn the next. It was tricky because I had to make sure I was doing it right, had to make up materials and equipment, etc etc etc. It was a pain in the ass for me and the PTist. She actually used me as a case study to present to the state board as she and other PTist began their “Are you fucking nuts?!” discussions. Other problems were because I didn’t fit into any single box in terms of medical definitions. I didn’t have paraplegia so I wasn’t eligible for certain things even though I needed it. I didn’t have MS so I wasn’t eligible for other things. We did a lot of headbanging for about two years until it was “fixed”.

And what McCrory wants to do is worse. This would limit not just my PT, but everything from blood work to equipment to tests to surgery. What happens if my doc runs out of my funds and I get ill? Or what if I am healthy and don’t use my allotment? Do I then have less the next year?

Hey, McCrory, you want to save the state money? How about taking a pay cut like everyone else has? No? How about looking at the money the state pays each year for those idiots to build their big houses on sand and expect the state to rescue their asses year after year when hurricanes come? No? Still stuck on chasing pennies while hundreds blow in the wind? Okay, then take a look at how much the state is paying for medical equipment. The 24v gel cell deep cycle batteries for my chair cost the state $500 each. My chair uses 2 of them. The state “rents” my CPAP for 13 months then buys it for me. In that 13 months, you could have bought me about 3 machines of much better quality than the dumb doorstop I got. You won’t pay for my $50 a year dental check up but you will pay the $14K dentures I will soon need. Shall I go on?

Better yet, allow Lorna and I to marry so I am no longer eligible for Medicaid! Wouldn’t that be so simple? Wouldn’t that save the state a ton of money since I’m sure we’re not the only lesbian/gay couple with this situation?

[/rant] (for now)

http://www.mountainx.com/article/49611/State-officials-to-visit-Asheville-will-discuss-Gov.-McCrorys-Medicaid-proposal