Offensive 2.0

If you've been hanging out here for a while, you may recall an incident a few months ago (March 27 to be exact) in which I was shocked to see one of my favorite characters on one of my favorite television shows make fun of my disability.

I emailed CBS.

And I waited... and waited.  And...

Nothing.

They couldn't even be bothered to send a generic, "I'm sorry you were offended," apology.  Because that would have required someone somewhere to admit to guilt.  To admit that they had participated in the exploitation of a disability for a few cheap laughs.

Apparently they have not gotten the message.  Because this week on Elementary, a show I have been following and liking up until now, they did it again.

Made fun of Tourette Syndrome for absolutely no reason.

And I'm sick of it.  Sick of being the brunt of somebody else's joke.  Sick of being exploited because of a disability.

Tourette Syndrome does not give me an excuse to be, nor does it make me, rude.  And for some reason, CBS is convinced that having Tourette's means that I'm rude and cannot control what comes out of my mouth.  And again, I would like to point out that Tourette Syndrome means I have uncontrollable tics; it does not mean that I lack a verbal filter or am rude.  And I am tired of seeing this misinformation portrayed on my television for a quick joke.

I want you to try something the next time you hear somebody making fun of Tourette's either on the television, in a movie, in person, whatever.  Swap out the word "Tourette's" with any other minority group.  Swap in a disability if you want.  Does it sound okay if instead the butt of the joke is Autism, Down Syndrome, or hearing impairment. Does it sound okay to make fun of somebody who can't see, hear, or walk?  Somebody who has different religious beliefs than you do or whose skin is a different color?  Somebody whose brain, like mine, doesn't work quite right?

Oh.  It doesn't.  Just checking.

What I have is NOT funny.  It is not a joke.  And I dare anybody who thinks it is to live a day in my shoes.  I'll gladly trade for a day.

As I said about 8 months ago, these things do not hurt my feelings.  I could really care less; my day isn't going to be affected because one asshole writer thinks it's funny to make a joke about living with Tourette Syndrome.  Whatever.  What comes around goes around.

But they do make my life harder to live.  They make it acceptable to make fun of a neurological disability (I've done it now... dropped the "D-Word").  Jokes like this make it okay for the general public to make jokes about it too.  And that is what I do not find okay.  That a television show is - without any regard for the people who their jokes are affecting - influencing a group of people.  That they are perpetrating the untrue notion that it is okay to make fun of a disability group.

Because that is what I am.  A person with a disability.  And when you make a joke about Tourette Syndrome, you are making a joke about a disability.  Something that I, and many others, have to fight with every day just to be "normal".  Just to be accepted by everyone else.  And for every presentation I give, I reach 20 people.  I don't even want to think of how many people watched Elementary this week.

I have to be direct and forceful when I give presentations.  I took off my wrist braces this week in a class so that they could see how far back my wrists bend when I tic.  And I saw a few of them attempting to twist their hands like mine, and then wincing.  They winced again when I described how I wake up in the middle of the night to endless charlie horses in my legs.  How I have pinched nerves.  When I demonstrated how I walk on my toe joints and how I turn my ankle inside and walk on the outside of my foot.

I don't do these things to be mean or to garner pity.  I do these things to counteract what the media has done.  I do these things to put a picture with the phrase "Tourette Syndrome".  I am brutally honest and open about my life; I want people to realize that this is not a laughing matter.  I want them to realize that everyday of my life is a struggle that the majority of the population will never know.  I want them to have a small glimpse into the everyday struggle I go through, so that the next time they hear the phrase "Tourette's", they think of me instead of some senseless joke.

And if that isn't enough to convince you, think about the 6- and 7-year-olds who are just finding out what Tourette Syndrome is and what it means to live this life.  Think about how you would feel if somebody made fun of the one thing you were ashamed about on television.  Now imagine you are in middle or high school and this happens to you.

Why do we need to make fun of a disability?  Are the writers at CBS that strapped for comedic material?  Or am I supposed to feel thankful because they linked my disability with a very intelligent, albiet wacky, character?  I will not be as quiet this time.  I am sick of this senseless attitude continuing and I will see a stop to it in my lifetime.

~ ~ ~ ~ ~

UPDATED to include my letter to CBS:

On this week's episode of Elementary, there was a joke made in regards to the character Sherlock Holmes having a "form of Tourette's".

As a person with severe Tourette Syndrome, I am once again, shocked that this network is exploiting a disability group for a few quick laughs.

In case you are unaware of what Tourette Syndrome is; allow me to explain it.  It is a neurological disability in which my brain cannot control my motor movement or vocalizations.  I have repetitive tics that occur at all hours of the day and in every situation.  They have destroyed my body and cause severe, chronic, pain.  I have to fight everyday to be accepted by the general public; trust me, a grown woman who looks "normal" is not accepted when she starts hitting herself, squawking, limping, or any of the other dozes of things my brain tells my body to do.

Jokes, like the one on this show, continue to perpetrate the notion that Tourette Syndrome is something funny.  Something that it is okay to joke about.  Just because I have Tourette Syndrome does not make me, nor give me an excuse to be, rude.  By perpetrating this idea, you are making the everyday lives of people living with this misunderstood disorder more difficult.

I look forward to your response; however, I am not holding my breath.

I contacted CBS about this exact same problem in March of this year, regarding NCIS.

You can read more about my thoughts on both incidences at my blog,

Here: http://adogforkatherine.blogspot.com/2012/03/offensive.html
And here: http://adogforkatherine.blogspot.com/2012/11/offensive-20.html

And the saga continues...

If this were a love story this would be the point in which the heroine would say [dramatically]: "I never gave up hope.  I knew it was him all along, I knew he would come back to me."

Figure it out yet?

Yes folks, I'm talking about Owen.

(And right now, you're going Really?!  I know these things...)

Owen is 100% fine.  Perfect.  Ready to work.

He has gotten the go-ahead from multiple vets and I have all of the veterinary stories from the past week in my email, but I'm going to give you the short-version as I understand it.

A few weeks ago I got an email from Heeling Allies about Quincy, but also saying that Owen was not limping anymore and they were taking him to the vet.  The news about Quincy was so-so (that he was doing okay, but not progressing like they wanted him to) but the news about Owen was very upbeat and unprecedented.

And a tiny seed was planted; what a story it would make if he made a miraculous comeback against all odds(!) and swooped in to save the day.  And I'm not going to lie, I started to entertain those fantasies; fantastical as they were.  But I didn't breathe a word to anyone.

Then, Sunday night I got an email.  Much like the one I got back in August, but this one was full of good news.  Great news.  Owen was going to be okay.

Sunday night's email said that  he had been cleared by their vet and a radiologist and that those doctors were fairly certain that there had been no ligament tear and that there would be no reason Owen couldn't be a service dog.  Additionally, they told me that Quincy was not going to work out for me; he didn't have the stature or certainty to do what they wanted him to do.  Owen was really the perfect match all along.

But it wasn't good enough; Heeling Allies did not want to place me with a dog they were not 100% sure would be suitable as a service dog.  So they took him to an orthopedic specialist last week who looked at his x-rays and was able to say determinedly that there was no, and never had been, a ligament tear.  If there had been one, even a small one, there would have been evidence of arthritis in his knee.  Hooray!

They weren't through yet though.  Yesterday morning Owen had a series of x-rays done under sedation on both knees to get the best picture possible and compare the knees to one another.  I was told Sunday night that there were two ways this could go.  One, there would be something very small they would have to fix surgically, but that would allow him to be a service dog.  This option would have set us back to February so he could recover from surgery and reenter training.  Two, there would be nothing wrong and we can do team training in November.

Are you excited yet?  Curious?

I was on pins and needles for four days.

Yesterday morning I got the email. 

OWEN IS OKAY!!!!

(That was what the subject heading was.) 

His knees are totally fine.  There was a tiny bit of fluid present in both knees (which is what led us down this road in the first place), but because it is present in both knees and it is so minimal, it is normal for him.  There is no evidence of arthritis in his knees.  Nothing.

He will be fine.

The official diagnosis of the injury is a really bad sprain and the vet recommends he be on a joint supplement indefinitely to lessen the chance of this happening again (which I was already planning on doing).

Owen will be back in training next week and we will just have to wait and see how quickly he relearns his tasks.  He was on strict crate rest since the injury, but we hope he picks everything back up quickly.  He was really great with all of his tasks, except picking up his leash. :)

Likely though, we are looking at team training in November, which considering it is already the middle of October, means I have about a month to start prepping and getting anxious excited for Owen's arrival.  Again. 

I am really happy about this turn of events.  Any dog they gave me would have been great; but...  I connected with Owen automatically through pictures, before they even told me who my dog was.  The first time I saw his picture on their page, I thought to myself, Wow, how lucky the person who gets that dog will be.  And then it turned to, Maybe that's my dog...  The things I know about Owen have made me fall in love with him more.  The fact that he love-nibbles your chin when he does paws up.  That he is so in-tune with his trainers that when they have to scold him for something, he makes them feel bad.  The fact that he loves to swim.  I cannot wait to have this huge smiley goofy dog in my life; and I'm finally letting myself get excited again after two months of trying to not get my hopes up after what happened in August.

I feel like a huge weight is lifted and I cannot wait to start this new chapter of my life.

Touchy Subjects

I have this post that I add to periodically that will never - I mean never - be published on my blog.  It's more of a diary than a blog post; venting when things don't go well or people say things they shouldn't.  Sometimes I revisit those ideas when I'm in a better frame of mind, and some I condemn to the depths of the internet, never intended to be read by anybody.

But as people are finding my blog through google searches and posting comments, I feel like I need to address something that keeps popping up, even if by doing so I might hurt some feelings.

I'm talking about the idea of a service dog for a child with Tourette's.

Be forewarned... I don't agree with it; I don't think it is an appropriate option, and my reasoning is two-fold.

First, is the fact that I really don't feel like a service dog for a child is appropriate.  A service dog is intended for the person with the disability, not the caretakers of the person with the disability.  And I'm not talking about skilled companion teams where the person with the disability needs another person to help steward the dog.  I'm talking about the service dogs that are carrying oxygen for toddlers (a toddler has no reason to be so independent there might be a chance of no adult supervision, especially one with a disability), the diabetic alert "service dogs" (who are really puppies and cost more than my professionally trained service dog and come with huge strings attached... but enough of that, if you're interested just start googling and you'll figure out which organization I'm talking about), and the "tether dogs" (dogs for children with Autism where the child is tethered to the dog through the use of a harness; dangerous for both child and dog and provides no training in any other coping strategies for the parents and child; what happens when the leash breaks, the child takes the harness off, the dog bolts... you get my point?).

Guide dog organizations won't provide a guide until a person is 16-years-old, and most have an age requirement of 18-years-old.  This is one of the longest-used types of service dogs and the organizations have been around a long long time.  There is a reason they have these guidelines in place.  Personally, my viewpoint is that you should not have a service dog until you are of an age to steward (take care of) them by yourself.  I think a dog for anyone under the age of 12-years-old (which is still really really young) is a waste of training time and money, and not an appropriate accommodation to use.

Now, you might say to yourself, What does she know?  She doesn't even have her dog yet?  And you would be right, I don't know what it is like to walk with a service dog yet.  But I have been researching everything I can get my hands on for over a year.  Since before I even reached out to Heeling Allies.  I've been reading news stories, joining forums and support groups, and learning as much about service dog law as I can.  I join forums and don't post anything - but I read everything.  At first, I thought all service dogs were great!  Everyone should have one!

But... as I'm learning more and more about what my new life is going to be like, I realize that this isn't true.  A service dog does not have to be your last option available in regards to mitigating your disability, but for me it is.  Don't you think I would rather take a pill and be fixed?  I've tried all the easy stuff and the not-so-easy stuff.  I'm out of choices and options.  I have nowhere else to turn.  Doctors literally tell me that they have no more ideas to try.  Doctors apologize to me because they are out of options.  I have exhausted every viable treatment option and then some.

But, I have a host of coping strategies in place.  If my dog were to be sick one day I wouldn't be lost without him.  I might struggle a bit more, but I would know how to handle my disability without my service dog.  These coping strategies are imperative to anybody's life with a disability.  They help you interact with the non-disabled population and for somebody like me, they are the reason I am able to do things like work, attend school, and drive.  Without my coping strategies in place I would drown. With or without a dog, I wouldn't be able to do the things I need to do in order to survive, in order to thrive.

My dog is not going to "fix" everything.  He won't make me not have Tourette Syndrome.  He won't make me not be disabled.

And I fear sometimes that when parents start looking into service dogs for their children, that this is what they are after.  A fix.  A chance for their child to not be disabled anymore.  That is not what my dog is about.  He is about liberating me from the prison that is my mind and body.  About giving me the chance to not be afraid of what my brain might tell my legs or arms to do when I am out in public.  About giving me the strength and courage to brave a crowded room and know that I won't hit somebody who gets too close to me.  About helping me get control of my body when I start ticcing, and helping me stay safe if it is something I can't control.  He won't make my tics go away or make my anxiety go away.  He won't make people treat me like I'm "normal"; in fact, I am more likely to be treated as a person with a disability with a service dog than without.

For me, this is an advantage.  If people view me as a person with a disability they are less likely to think bad of me (and say nasty things or try and kick me out of somewhere) than if I am a normal looking person who makes obnoxious noises or can't sit still.  I'm less likely to be thought of as somebody who is intoxicated.  I am more likely to be believed when I say I am a person with a disability than if I look "normal".

For a lot of people with service dogs though, they don't like this added attention.  Me?  I get attention whether I want it or not.  At least when walking with a service dog, the attention will be on the handsome hero by my side and not my tics.  Do you really want your child to be permanently labeled by everybody who sees them as having a disability?

When somebody sees me walking with a service dog, there are two things they will think.  One, that I am disabled.  Or two, that I am a "faker" (somebody who is scamming the system to bring their pet with them).  That's it; those are the two options.  I won't have the choice to try and blend in anymore unless I leave my dog at home; at least now there are times I can blend in and am not noticed.

A service dog is a lot of responsibility - and I'm not just talking monetarily, though there are a lot of expenses associated with a service dog including high quality food, equipment, supplements, grooming tools, etc.  A person with pets may not view it as such a responsibility, and having grown up with animals my entire life I know full-well the amount of time a dog will need as well as the things that I will have to do to take care of him.

The things I'm not looking forward to?  Having to drag myself out of my apartment with severe migraines that make me want to gouge my eyes out and bash my skull in to take him to potty.  I live in an apartment complex on the second story, to take him out, I have to go with him.  Even on days where I would rather do anything but leave my apartment.

I'm going to have to be waking up much earlier now, I already have my alarm go off at 6am to get to school on time (sometimes I'll hit snooze for up to an hour because my brain is not physically capable of waking up yet).  I will have to factor in at least 30 minutes extra time in the morning to get my dog ready.  I'm hoping he is ready to go when my alarm goes off and tries to get me up, as opposed to my cat who views the alarm going off as a signal to cuddle with me and go back to sleep.  I will reinforce him trying to wake me up, but the fact is, I will be waking up earlier than I do now.

They [the people with service dogs] say that having a service dog is like having a toddler with you everywhere you go.  You have to plan your day around potty breaks, bring toys and snacks, have extra "clothes", have things with you in case there is an accident (they also say that if you and your service dog haven't had an accident in public, you haven't been working together long enough... oh joy)... You get the point.  It's a huge commitment.

One I am ready and willing to make.  But in my opinion I don't think a child is ready to make that commitment.  Until they are able to steward their dog, they shouldn't have one.

And this isn't even taking into account the trouble with having a service dog in a public school setting.  It's a big fight for children who are not old enough to properly steward their dog, and schools are not willing to train and provide an aide just so the child can have a service dog.  Students are much more likely to be allowed a service dog in high school when they are able to take care of them themselves.

My service dog is so that I can be independent.  Not so that anybody else in my life can have it easier.  This is the difference in my mind; a parent wanting a service dog for their child will be the one in charge of the dog, and yes, the dog may help the child.  They may help a whole lot.  But until the person with the disability is old enough to have coping strategies in place so that they aren't relying on what a dog might be able to do, and until they are old enough to steward the dog, I don't think they are old enough to have a service dog.

My second reason is that Tourette's is constantly changing.  It is something that gets worse during puberty and then appears to get better.  There are a lot of people who have found medications that help them or who are able to control their tics.  There are even more people who have mild Tourette's and are unmedicated without the things that I have to live with (chronic exhaustion, chronic pain...).  For me, this dog is my last option.  If it doesn't help in all the ways I hope he will, I am no worse off than I am now.  But hopefully, my quality of life greatly improves.

If your child had a chance that other treatment options would work, please try them first.  I don't like medications and I know a lot of families don't choose to medicate, but seriously.  My life would be a heck of a lot easier if I didn't have severe adverse reactions to medications and if the medications had actually worked.

There is nothing left for me to do.  Nothing left to try.  I am an adult Touretter.  I truly do believe I will live with this until the day that I die.  I have gotten consistently more severe as time has progressed.  Yes, I am more in control of my tics than I was 7 years ago.  But then, those tics were simple.  Hand tremors, head banging, squeaking.  Yeah, they did get extremely intense at times.  But I wasn't crippled by leg cramps or giving myself concussions or constantly pinching nerves.  My tics right now are destructive to my body and causing permanent problems.  And there is nothing the doctors can do.

This is what led me to choose a service dog as a viable way of helping to control my disability.  I am a disabled adult who has never known what it means to be a non-disabled adult.  Who has never known what it means to do all the things my non-disabled peers do without fear of what my brain and body will throw at me next.  I will always have these challenges to overcome, but I am at the point in my life where I am able to make this choice for myself and I am well-informed of the things I will have to do in order to make this new life feasible.

In my opinion, a child does not need this put on them.  They are not ready to handle the responsibility associated with walking with a service dog and they are not capable of stewarding them by themselves.  They do not need to be walking around with this permanent identification to the rest of the world that they are disabled.

Work with your child to help them be more successful in school.  I wouldn't have graduated Magna Cum Laude without all of the coping strategies I have in place, sans dog.  Help your child become comfortable with who they are as a Touretter and help them be confident.  And then if later down the road, when they are an adult, if they are - unfortunately - in the same boat I'm in, I will be more than happy support the decision to have a service dog.

Moral of the story:  Don't comment on my blog about wanting a service dog for your 3-year-old, or 7-year-old, or 10-year-old.  I don't think it's a good idea.

A non-update update

Still feel like crap.

Still tired of feeling like crap.

Still feel like this isn't fair.

Still want a break.  Seriously, nobody wants to trade for a few days? 

Still no date for team-training (even though I know they are working really really hard to pin down a date, and we now *think* it may be in November... I still wish I could get my countdown chain back up).

Migraine is still lurking in the background, as long as I take it easy, eat regularly throughout the day, and remember to take my meds and stay hydrated, it isn't bad.  But if I do one thing - one teeny tiny inconsequential thing - wrong, it's back with a vengeance.

For the third Saturday in a row, I went to a local therapeutic riding stable to volunteer.  I love it.  It combines the two things I am unbelievably passionate about: horses and kids with special needs.  But...  we have had horrible air quality problems in Spokane this month and my inhaler is all used up (I was desperately sucking on it today, hoping there was some residual medication in it) and even though I have begged my doctor to refill the now two-year-old prescription, no luck as of right now.  So I inhaled dust and dirt for an hour without my inhaler and my migraine is back.  Ugh.

I said something to somebody I know this week about having trouble breathing, and they were like "You're asthmatic?"  Ha.  I totally even forget about half of the things I live with most of the time, they take a backseat until it's one o'clock in the morning and I can't sleep and I'm wheezing in bed.  So yeah, still an asthmatic.  I have a whole host of sinus crap going on right now, but none of it is anything the doctors think they can treat (I beg to differ because I think a tonsilectomy would go a long way to improving my quality of life, and I plan to argue this point for the third time when I see my ENT in December... but I digress).

When there's something like Tourette's in your life that takes everything it can get it's grubby paws on and then some, anything else in addition to it is an unnecessary drain.  And having doctors tell you that they can fix something but don't feel like you are severe enough to warrant surgery is frustrating.  If all I had to deal with was asthma and unrelated sinus/breathing problems, I'd deal.  But when it's in addition to everything else...

Also, my eyes and one of my molars have a pulse.  Interesting, no?

I started researching this week ringing in the ears (tinnitus) and came across this phrase: cutaneous allodynia.  Basically, having pain where you shouldn't.  My ears have been ringing this whole migraine (not continuously, but often enough) and apparently it is a form of cutaneous allodynia.  I'm no stranger to the weird things migraines do (please tell me how it is possible to have the ends of your hair hurt...) but this ringing ear thing is new, and annoying.  Coupled with the usual pain in my teeth, pain behind my eyes, and other things that this migraine has brought (extreme nausea, dizziness), I'm sooo ready for it to be over.

September sucked.  Everybody say a little prayer that with the start of October this migraine decides to go.

(Oh, and Quincy is doing well.  He's learning all of his tasks and working hard.  I haven't learned anything new about him.)

A Book Review: Against Medical Advice

I recently (while stranded at school for 12 hours) discovered how wonderfully easy it is to go on Amazon on my iPad, purchase a book, and have it immediately delivered to my Kindle app.  Now... that's not to say I am transitioning to the Kindle permanently; I still have a giant bookshelf in my apartment with 50+ books on it that I re-read over and over again.  But, it's nice to have some books at my fingertips; books that I can just read throughout the day and not worry about stopping for class or needing to remember to bring it with me.

I purchased the book, Against Medical Advice, earlier this week.  Amazon said it was the "true story of one family's decades-long battle for survival in the face of extraordinary difficulties and a rigid medical establishment."  Sounds good, right?

It was recommended on one of the Tourette's groups on facebook and had pretty decent reviews on Amazon.  I was curious.  And I bought it.

And finished it within two days.  Seriously, this is not a deep read.  In fact, it seemed kind of juvenile to read through.  I know it was supposed to be told from the teenager's perspective, but it was co-authored by James Patterson (whom I've never read, but I've seen him on TV... ugh, book authors promoting themselves on TV, maybe there's a reason I've never read his books) and I figured there would be something of substance to it.  But there wasn't.

And I really was not at all supportive of how this family chose to deal with their son's Tourette's.  I'm going to begin at the beginning of the book, and work my way through the various instances that I found fault with since I was, after all, reading this from the perspective of an adult Touretter.

The book begins (spoiler alert) with the family bringing their teenaged son - by force - to an inpatient psychiatric hospital.  The son is an alcoholic, and as you read the book you learn that he has been drinking alcohol with HIS PARENT'S CONSENT since he was in his early teens.  I don't care what disability your child has, allowing them to drink to the point of passing out to cope with it is NOT a solution.  They bring him into the facility and then the parents get cold feet as the son is promising he is going to change on his own.  He's an alcoholic, of course he is going to say things like that.  The parents say they are leaving and taking their son with them and then are informed that by law, they are not allowed to leave with their son.  Something about how by checking him in, there was a mandatory 72-hour hold.  They panic, call their son's therapist who tells them if they say the magical words "We are taking our son Against Medical Advice," that legally, the hospital has to let them leave.  They go back and forth with the staff for a bit, sign the forms, and leave with their son.

I'm sorry.  But this boy was an alcoholic, drinking so much he was sick and passing out.  And he was taking heavy-duty prescription meds.  That's a fatal combination; and instead of going with their decision they made while clear-headed and not in the hospital, they let emotions rule them and take their son against medical advice.  I don't agree with this choice in the slightest.  He was putting his life in danger continuously and had been doing so for years; alcohol and prescription drugs is beyond dangerous, this family is lucky they never ended up at the hospital pumping their son's stomach.

The book talks an awful lot about how he tried 60 medications and none of them worked; some even made him worse!  About 15 or 20 of those medications were supplements or vitamins, or over the counter things like Benadryl.  The book chronicles each medication taken in the back of the book, and yes there are upwards of 50; but here's the thing.  There are only so many classes of medication to try; I myself have tried 4 different classes of prescription medications (anti-hypertensives, anti-anxiety, anti-convulsant, and anti-psychotics).  The kid in the book tried a few more classes than I ever did, but it wasn't as though he was taking 60 different medications.  Medications in the same class work similarly, and in my opinion, once I've tried two or three, I'm done with that class of medication.  I'm done pumping poisons into my body that don't work.  This family kept pumping their son full of medications, including Risperdal for a very long period of time.  I was on Risperdal for 48 hours; the boy in the book is on it for months (or years... not sure which, the book moves chronologically through his life very sporadically).  He takes the pills in varying dosages, taking extra medications to "knock himself out" or preemptively taking more pills on days he wants his tics to be lessened.  I don't know whether this was "against medical advice" or not; but I do know when I was on these pills it was very regimented.  I had to take so many miligrams at certain times every day; the only pill I have ever been prescribed to take non-systematically was Ativan, and even that I am only supposed to take 0.5 mg of (a teeny tiny amount) in a 24-hour period, no more.

I don't know if this boy was actually taking pills as haphazardly as the book makes it out to seem, but my opinion after reading the book was that his medication habits were reckless.  And dangerous when you add alcohol into the mix.

Another big problem I had with the book was that the main character sounds very entitled.  In his opinion, people should give him a pass for having Tourette Syndrome (along with comorbids).  I use my Tourette's as an explanation for some of the things I do, but never as an excuse.  The boy in the book gets a one-on-one aide during high school because he is supposed to be confined to a wheelchair (he is falling down a lot and the school district does not feel comfortable with him walking around campus) but acts reckless and dangerous in the wheelchair, so instead they get him an aide to walk next to him at all times, take notes, etc.  The boy is also, at this point in time, chain-smoking cigarettes and talks about how he can't go an hour without smoking.  He leaves class one day without his aide, and goes outside to smoke (still on campus grounds).  His aide, whom he thought was remaining in the classroom, follows him and reports him for smoking on school grounds.  The student then goes home and sends a threatening email to the aide, in what he writes is a "rage attack".  He is almost brought up on charges, and ends up suspended and when he returns to school he doesn't have an aide anymore.

I'm sorry; but if you break the rules, regardless of whether you have a disability or not, you broke the rules.  Yes, in special education we make allowances for students whose disabilities cause them to act in ways that may go against school rules, but there are still consequences for their actions.  This book makes it seem as though this boy and this family expect there to be no consequences for his actions, regardless of how inappropriate they are.

The entitlement continues throughout the book.  He sounds petulant and "whiny" the whole book.  The theme of "but I have Tourette's" continues throughout his entire life.  Including when the school district lays out their very clear and concise argument for why he should have to repeat his junior year of high school, including the fact that he was missing multiple classes, turned in no assignments, and as far as the district was concerned, was not doing anything on his own time to make up the work.  (His parents did send him to a boarding school for students with special needs during his junior year, but he only stayed a few weeks before dropping out...  Seriously?  He was given the chance to make up his academics, and he threw it away.)  His mom makes a very impassioned argument in the meeting about how he made up a lot of schooling at this boarding school, about how he took online college courses in computer technology, and about how he did a wilderness experience for troubled kids (which she argues should count toward his physical education credits).  And then the clincher; she pulls out a folder of all of his missed assignments from the previous school year that she found in his room.  Again, they expect that because he has Tourette Syndrome along with other things, that this should automatically mean that all of his late work should count towards his missing credits.

I have never understood students who do the work and won't turn it in, but regardless...  I have taught in general education; and I had students who wouldn't turn their work in.  There are ways to help them remember homework assignments.  In my opinion, this mistake fell both on his teachers and parents.  His teachers should have been reaching out to the student, and if that didn't work, his parents to get his work turned in if this was, in fact, a manifestation of his disability.  When he had the aide, this should have been a non-issue as the one-on-one aide should have been responsible for reminding him to turn in his work.  And his parents should have been keeping up with him.  But nobody did and when push came to shove, his work remained missing.  (For those of you wondering, they do eventually pass him on to his senior year.)

He is also given or allowed to drive a motorcycle dirt-bike-made-street-legal.  I don't understand this one either.  I don't think somebody with severe Tourette's should ever drive a motorcycle; it is so easy for just one tic to slip in so quickly, and on a motorcycle this can have disastrous consequences.  In fact, they write about an incident in which he takes his glorified dirt bike out one night in the dark and pouring rain, and gets stuck on the freeway, speeding, unable to will himself to and too scared to exit (he has severe OCD as well, and I think this was one of those incidences).  Every time I get behind the wheel of a car I am making the decision to drive; to be careful and aware of my tics; and to be cautious, even if it means taking longer to get to my destination.  I try my hardest to drive away from other cars on the freeway, staggering myself in the empty windows, so that if (heaven forbid) I do tic and my truck swerves, it is not into anybody.  Driving a motorcycle with Tourette's is the height of recklessness and in my opinion endangers everybody else on the road.  And I don't think anybody could ever change my mind on this matter; I wouldn't even be a passenger on a motorcycle for fear of what my brain might do.

And then there is the issue of his "friends".  The drug-addict, marijuana-smoking, alcoholic, prescription-drug-stealing friends.  The ones who have casual sex and get into physical fights.  The friends that his parents prefer he hang out with as opposed to be alone.  And I can kind of understand that, but at some point as a parent you should draw a line and kick the drug-addicted friends out of your child's life.  And when the son and his friends throw a party in the basement and one of the kids passes out from alcohol poisoning (presumably, the book says he was catatonic on the floor and temporarily non-responsive), the dad - instead of bringing him home or to a hospital - puts him in the car of some of his friends who happen to drive by after making sure that the people in the car "weren't stoned".  Wow, real winners.

The book ends in a completely unsatisfying and un-explanatory method.  He literally, wakes up one morning and doesn't want to tic anymore.  And that's how the book ends.  The "most severe" case of Tourette's and OCD and anxiety that his doctor's and specialists had ever seen, just wakes up one morning and is control of his body.

I think you know my thoughts on this, but in case you've missed it, here they are again.  If one more person tells me that their friend's uncle's cousin's nephew's friend had Tourette's and outgrew it, I will scream.  This does not happen.  In fact, there was talk recently on a facebook group about how 100% of people never truly "outgrow" this.  Tourette Syndrome gets worse in puberty, and then appears to get better after the onslaught of hormones is done with.  Adults don't have specialists to go to anymore, because it is viewed as a "children's disorder" - much like Autism is these days - and by the time someone reaches adulthood with this, you have found a medication combo that works or have coping skills that work.  I see a pediatric neurologist, and am one of his very few adult patients, when I move away from Washington, I honestly don't know if I will continue seeing a neurologist or not seeing as they are so few and far between.

This book is supposed to be a window into life with Tourette's, but for me it didn't really seem to be that way at all.  There was extreme anger, extreme prescription drug use, and extreme alcohol abuse.  I truly hope that my blog doesn't read that way.  I am so thankful that I can see, walk, talk, eat (most of the time) and do things like work and drive, that only very rarely do I get down in the dumps.  And I know better than to not self-medicate with alcohol or prescription drugs.  Living in my brain is extremely frustrating - all the time - but you get used to it, you pull yourself up, and you move on.

So my opinion?  If you want to learn what it means to be a Touretter, save your $9.99 and just read my blog. :)

You're Invited... to my pity party

This week sucks.

My health has been in the crapper for three weeks straight not (concussion - cold - migraine) and I can't shake the fact that this was supposed to be My Week.  That I was supposed to be meeting my hero this Thursday and beginning team training.  That by this time in two weeks I'd be on my own with my new partner.  That my apartment is supposed to be filled with dog beds and toys and expensive dog food, not crumpled up used tissues.

I've been trying to find the positives, but in a situation that really isn't positive that's really hard.  Once in a while I think, Isn't that nice that I didn't have to worry about getting a dog ready today.  Or, Wow, I was late to class this morning, can you imagine if I had to wake up extra early to get a dog ready too?  But this isn't a positive situation; this is life and there is nothing I or anybody else could do to change this, but still...  It sucks.

My spoons are all gone from feeling like crap and it's times like this that leave me wishing I had the energy and inclination to do something instead of just thinking, I am sooo grateful I have no work today.

Last night sucked.  I was pretty convinced for a while that I was going to end up in the Emergency Room because of the pinched nerve in my neck.  I haven't even done anything recently to aggravate it, but I was experiencing the tell-tale deep ache in my arm that normally precipitates the full-blown pinched nerve.  And I swore the last time it happened that I am not going through that pain again.  If it happens, I am going straight to the ER because I can't stand the thought of experiencing that kind of pain any more.  And the worry of ending up in the ER last night or early this morning, sent me into a tail spin.

I was indulging in the It's Not Fairs, something I normally despise people for saying.  I think it is one of the most selfish things that can come out of somebody's mouth, but nevertheless, I was fully immersed in the "It's not fair" way of thinking last night.

I was in pain.  My skull felt two sizes too small and I still want to gouge my eyes out anytime I step outside without sunglasses on.  I was fully ready to chop my left arm off rather than go through the pain of a pinched nerve again.  And then to add insult to injury (literally) both of my calves are screaming and have been charlie horsing with no provocation for days.

I'm tired.  Physically and emotionally.  And this is one of those weeks that I wish I could Just Take a Break!  Just a 24-hour break; one day really.  I'd even settle for just the waking hours of the day, I don't need a whole 24-hours.  One day where I'm not in pain.  Where I'm not tired.  Where I'm not fighting my brain every minute of every hour.  One day where I'm not the girl who is overweight because of medications.  Where I can go out with my friends and not pay for it the next day with the worst migraine I've had all year.  A day where I can be completely, blessedly, normal.

But I don't get that.  When you have a chronic illness or a life-long disability, you don't get a break.  And that's the hardest part.  If I could have a break, even if it was just one day a year, it would be sooooo much easier.  One day where I don't have to worry about my spoons, where I don't have to plan every decision around the Tourette's.  I never get a break from my life.  Once in a blue moon, I get these brief moments of peace.  Where for just a moment, my brain stops.  Where my body isn't moving or threatening to move or thinking about moving.  Where I'm not self-restraining.  Where everything is just still.

And it's unbelievably, remarkably, beautiful.

To feel that complete calm, to realize I don't have a tic urge.  That I'm not blocking or restraining, I really just don't want to tic.  When these brief glimpses into normal happen, I'm lucky if I get more than 30 seconds.  I'm lucky that this happens at all; but I can't tell you the last time I had one of these "breaks".  I can tell you I cried my eyes out when it happened because it isn't until I get a break, that I remember what it would be like to not have Tourette's.  To have my brain only focus on what I wanted it to.  To not have to fight for every minute of my life.  To not be in pain.

I forget that everyone doesn't live like this.  With this constant turmoil in their heads.  I forget that what I go through everyday, most people will never have to experience.  And having those glimpses into what life could be like, is worse than never remembering at all.

I'm tired of fighting.  Tired of being tired all the time.  Tired of being in pain.  I'm out of spoons and truthfully, at this very moment in time, I don't think I'll have the spoons to make it through this week without another migraine or breakdown.

...Anyway, enough self pity for now. Because I do have good news.

Like, really good news.

Really, really good news.

I heard from the director of Heeling Allies about Quincy. He is doing really well learning his tasks. She said that he is doing really well with paws up and over. If you remember, over was the command that Owen was having so much trouble with; these dogs are picked in part because they are submissive (they have to be as a service dog) and placing them in such a dominant position can be tough.  Quincy though, is doing really well with these commands.  These are two things that are super important for me; the deep pressure is going to be critical in helping me to gain control over my body in situations where I can't manage it on my own.  Darcie even said that once they get him in an over, he stays put regardless of how they are moving underneath him.  Which is great!

Quincy and his little sister Gretta (and JJ in the corner)

He is getting used to the mobility harness I will be using with him; because it's a new piece of equipment that they weren't training him to use before, it's (naturally) taking some time for him to get used to it.  She said that because when he walks, he walks with a side-to-side movement it is causing the harness to move from side to side and he isn't so sure about that feeling.  He doesn't dislike the harness, but he's not so sure about what it is telling him to do either.

Quincy does not however, want to pick up his leash. :)  I think this is really sweet; he is a retriever but apparently respects his leash so much that he won't pick it up for them.  I've already bought an over-the-shoulder leash that I can use completely hands-free, so for me, picking up the leash is an added bonus that I should hopefully never need to ask him to do.  Hypothetically, if I drop the leash because of my tics, no, I won't be able to pick it up.  But... I think that by using the hands-free leash I should negate that happening.  Quincy won't go anywhere when you drop the leash, but he won't pick it up either.

And that's something I would feel comfortable working with him on anyway after team training.

Darcie said that Quincy is very sweet and loving, and that he nibbles to show affection, just like Owen.  I don't have any updates on how Owen is doing, but last I heard he was feeling much better on the medication.  When I hear something about him, I'll update everyone.

~ ~ ~ ~ ~

FOR SALE:

One broken down body; overweight and in pain.  Brain malfunctions 99.9% of the time.  Will throw in anxiety and migraines, free of charge.

Free to first to inquire, OBO.

Spoons

Before going any further; I want you to read The Spoon Theory by Christine Miserandino.

















Did you read it?










All of it?

That's okay.  I'll wait.










Okay good.  Now this blog post will make some sense.

So I know I don't have a chronic illness per-say; but what I have is chronic.  It's a syndrome not an illness, but it affects me in the same way; a way in which I don't think I will ever be able to illustrate as eloquently and accurately as Christine does.

When I wake up exhausted it isn't because I have Tourette's; it's because of what the Tourette's takes from my body.  The constant movement.  The pain.  The making a fool of yourself in class.  The not being able to sleep at night because your brain JUST WON'T STOP.  That isn't the Tourette's, it's called "comorbid" conditions.  What you have in addition to or because of the overarching diagnosis.  No, exhaustion isn't disabling; but it sure makes my day much harder to get through.

And weeks like this one?  Where I've had a mild head cold for about a week; bad enough in the beginning I had to take Nyquil that I'm now weaning myself off of (because if I go "cold turkey" I won't sleep for days)?  It took me 45 minutes of hitting "snooze" this morning to get up.  It's a miracle I made it to school dressed in appropriate clothing and with everything I needed to get through my 12-hour day (though I was 5 minutes late to my 8am class).

The morning is full of choices of how I want to spend my spoons.  I don't have the luxury of showering when I wake up, even though I know I would feel more awake if I ever managed to.  My brain and body move so slowly in the morning that I can't plan to shower when I wake up, because the likelihood of me snoozing for an hour is too high.

I hate breakfast (love breakfast food, just not at breakfast times).  If it were up to me, I wouldn't eat anything until 10 or 11 o'clock.  But I have to take my medicine (which in the morning includes my migraine meds, multi-vitamin, vitamin supplements, and a green tea supplement).  Each one of these things is vital to my health; the vitamins help me stay healthier longer, when I do get sick it can take weeks to shake a simple cold because my body is so run down all the time.  The migraine pills are self-explanatory; if I skip my meds in the morning I will have a migraine by 2 o'clock in the afternoon.  The green tea supplement is for two reasons; one, to help me wake up in the morning and two, to help get my metabolism started in the morning (because the 6-years of prescription pills screwed up any chance I had at a normal metabolism).

Sunday morning I gave up about half of my spoons in one split-second decision.  I was getting ready for my first day of Sunday school, and while I had plenty of time to get to work and prep my classroom, I still wanted to swing by the store for some items I had forgotten but needed to teach.  So I had to plan an extra 30-minutes into my morning, just in case the store was busy.  I was ready and had my breakfast (toast) wrapped up in a paper towel with my teaching things by the door.  I realized I hadn't taken my medication and instead of throwing the pills in a plastic bag to take when I got to work, I took them all in one swallow.  I was wide awake, and I figured I would be eating breakfast in less than 5 minutes when I started driving.

I didn't even make it to my truck in the parking lot before I started hurling.

I was shaky and nauseous for the whole morning.  Afterwards, I ate way too many un-filling Jimmy John's veggie sandwiches at the in-service we had after work, and I barely made it home before crashing on my couch.

When I should have been saving my spoons for work and driving, I threw them away on a quick fix for my medication.

Luckily, getting dressed in the morning is pretty easy.  I have sweat pants or jeans.  And I pretty much just pick a top or sweatshirt depending on the weather and go.  But I do know what it is like to plan your outfits based on your bruises.  My legs are covered in mystery bruises all the time, some of which I think are from cramps (or at least, sudden cramps that hurl my body into inanimate objects).  I have bruised my arm from fingers to elbow and had to wear sweatshirts in the summertime to hide them.

Sometimes my hands won't work long enough to put shoes on or do up buttons.

I have to make choices about when and where I drive.  I don't drive (if I can help it) after 7:30 at night.  If I'm not heading home by 8 o'clock, I'm in trouble.  When I do have to drive home late, I take the back roads so I can drive sloooow and steady.  I have to drive under or right at the speed limit.  Can you imagine if I got pulled over by a cop?  I have heard of people with less severe disabilities when it comes to driving having their licenses suspended when they get pulled over.  I can't afford to let that happen.  I talk to people on the phone (bluetooth!) or sing to the radio or talk to myself when I drive so that my brain is preoccupied with something else and doesn't have the opportunity to think about ticcing.

I have to make choices at school about how to spend my spoons.  Do I sit in the front of the class and try to take notes like everyone else?  Do I stay in a class when all I want to do is stand up and leave to let the tics out?  Do I sit in my chair or stand up and pace?  Each of these choices costs a spoon.  And because my education and my classes are important to me, I want to ensure that I am in class participating as much as possible.  So there go some more spoons.

Do I go home in between classes?  (Minus some spoons for driving, but plus more than I would lose for going home to decompress and rest.)  Or do I stay at school and do schoolwork all day?

Do I go straight home at the end of the day or do I run an errand that I've been putting off all week?

Was I smart, and do I have dinner prepared at home?  Or has this week been so hectic that my choices are to eat out or cook dinner?  Do I have the energy to cook dinner?  Do I have the energy to deal with going somewhere for food?

Do I even want to bother with dinner at all?  (Minus some of tomorrows spoons.)

Do I stay up late at night and do schoolwork I've been neglecting?  Do I stay up and work on items for my Etsy store?  Do I crash on the couch and zone out to Friends re-runs?

For me, going to bed early isn't an option.  I don't sleep well as it is; the last thing I need is to be waking up at 4 in the morning or lying in bed for 3 hours unable to fall asleep.

Every single day is full of choices that I have to make based on my disability.  Getting up and waltzing out of the apartment doesn't happen.  It is a calculated decision on where I have to be that day, how long I have to be there, which route I am going to take when I drive, and the list goes on and on and on.

And most of it is second nature by now.

When I read The Spoon Theory the other day it reminded me that not everyone lives their life in this manner.  That for most everybody else, this decision making process isn't "normal".

I don't simply have the choice to go out with friends at night.  Going out at night means I am giving up a lot of spoons the next day.  Means sleeping in a few extra hours to try and make up for the lost energy.  It means not being cognitively "all-there" the next day.

I don't just "run to the grocery store".  I have to make lists because I can't remember from one minute to the next what I need, and even then the lists don't always help.  I spent an hour in the grocery store last week after my concussion and still ended up with nothing suitable to make meals out of.  I try to plan a week's worth of meals around one trip to the store.  But then I have to prep and cook everything on the weekend when I have more time and more spoons, but that doesn't always work out.

I don't get to spend my weekends with friends or catching up on important school work; I spend them crashed on the couch trying to catch up on rest or just preserve my spoons for next week. 

I don't just go to work out.  It's a calculated plan based on how I feel now, how much I have to get done the rest of the day, and how I think I will feel tomorrow.  I wish I had the energy every day to be at the gym, but I just don't.  Some days I can barely make it through my day without the added stress and exhaustion from the gym.  Today?  I made the choice to do schoolwork because I have been running low on spoons lately due to my cold.  Tomorrow?  Well, tomorrow I don't have classes and because I did so much work today on campus, I should be able to spend some spoons at the gym.  Thursday?  We'll have to wait and see.

I am hoping that Quincy can help me save some spoons, or at least give me more to start with.  That with his assistance, some of these decisions I have to make every day won't end up costing me a spoon.  That he'll help me get some spoons back mid-day if I spend them.  I won't have to go home to decompress; he can help me do it on campus.  I'll be forced to make sure he has everything we need before leaving the house, and in doing so maybe I can be inspired to make sure I have everything I need too.  He will be the reason I have to leave my apartment some days when I would rather stay inside, costing some spoons.  But he will also help me get spoons back by sleeping better at night.  (Yes, he will be sleeping in my bed... as long as he wants to.  I have noticed a distinct difference from when my cat sleeps next to me or on me at night or when I have my parent's dachshund sleep with me when I visit them; something about having an animal touching me forces my brain to chill out and it leads to me sleeping better.)  And maybe, I will end up with enough spoons at the end of the week that I don't have to hoard them all for running errands and work, but I can actually use some on going out and being a more normal college student.