Six Years

I have an anniversary coming up. It’s not a happy one that I celebrate. It’s a sober reminder of how much my life has changed. Six years ago, I fell ill with an unknown disease. I missed a long anticipated family trip because I was hospitalized. I had three surgeries within 3 weeks. I spent weeks in the hospital with no one knowing what was wrong. I learned what a central line was and that it sucked.

I discovered that doctors can be clueless. Pre-2010, I thought they knew a lot. By 2011, I knew they didn’t. As I steadily declined, there were fewer and fewer attempts to figure things out. By 2013, I had lost 140 pounds and was unable to eat. A flaw in contracting made it possible for me to be seen at another hospital. So, I lived 14 hours away from my family for 6 months while the doctors figured it out.

And they sort of did. Lots of different things were discussed. I’m just now realizing how easily fixated doctors become when they see certain words. Words that indicate something might be fixable. It turns out, doctors don’t like unknowns.

I’m finding out that the less a doctor knows about something, the more they avoid it. I’m in a status quo relationship with my doctors right now. Hey, I’m still alive. It’s okay to let things go because I’m stable. No need to try to figure this out because, well, it won’t change anything, will it?

But, what if? What if just one doctor decided to look deeper and try to figure out what really went wrong and whether it could be fixed? Would I regain some freedom? Not have to carry a bag of fluids all the time? Be able to do things beyond walking? Eat a salad again (yeah, you never know what you’ll miss until it’s gone)? Not worry about how much I will “pay” for enjoying a meal out with friends? That’s a lot of what ifs.

Six years. I no longer have paid employment. I’m not sure anyone would hire me because of the bag of fluids on my back and the service dog by my side. I struggle with feeling helpless. With feeling useless. I should be doing something, right.

Well, maybe one day. Maybe one day I can be fixed. I can ditch the pumps and medications. I could go horseback riding. I could take a Zumba class (that may be a stretch anyway). I could go out to a movie and eat popcorn. I could live without medication alarms. I could go back to teaching. Flitting dreams right now.

You always hear people telling you to live each day to the fullest because you never know what life will bring. I encourage you to do so. Get out and be passionate. The laundry will still be there tomorrow. Take time to enjoy what you love doing. Slow down and savor your food. For that matter, savor everything.

Live. Love. Laugh.

I Don’t Matter

Last night on social media, someone posted about how dogs have rights like people and should be allowed to go anyplace people go. In context, this started out as a discussion on small dogs carried in purses. Within 15 minutes, it had blown up into a hate fueled rant against service dogs. In particular, one person stated that their dog’s happiness was more important than a human life.

I’m all about pets. I think they serve a great purpose for anyone who desires companionship. Fish are very relaxing for me to watch. I’m not a fan of cats, but that has a lot to do with violent allergies. Hedgehogs….adorable! Reptiles, well, not so much. You get the idea.

This social media exchange left me feeling dismissed. I rely on a service dog to alert to potentially life threatening events. My dog is trained and has been working about 5 years now. She alerts between 5 and 10 times per day, long before I notice I’m not quite well. She does not have rights any more than another animal. The legality of her being with me in public comes from a federal law that essentially declares her to be medical equipment, no different from a wheelchair. Her “rights” come from my rights as a disabled person.

But, beyond all that I’m left with this feeling. Your dog’s happiness is more important than my life. As we just passed the Global Day of Mourning for people murdered by their carers, it really struck home. No, I don’t know any of the people who attacked on social media last night. However, the sentiment that my life is disposable came through in many comments. I was personally attacked for “claiming” to be disabled. I was told that disability means I’m just to stupid to do anything. Disability means I’m lazy. Disability means I’m “playing a card.” Disability means I don’t matter.

I asked myself if I extrapolated the numbers from the negative comments last night, do that many people share the idea that people with disabilities have no purpose? Following that….with this kind of prevalence, no wonder most people aren’t outraged at the murders of disabled people. We don’t matter.

We don’t matter. Wow. Non-disabled people put their needs, wants and desires ahead of disabled people’s basic rights. There it is in a nutshell. Several of my friends have told me their stories about how the people they identify with don’t matter. I think it has finally sunk in just how horrible not mattering feels.

First they came for the Socialists, and I did not speak out—
Because I was not a Socialist.

Then they came for the Trade Unionists, and I did not speak out—
Because I was not a Trade Unionist.

Then they came for the Jews, and I did not speak out—
Because I was not a Jew.

Then they came for me—and there was no one left to speak for me.~

Martin Niemoller

Job Interview

Dear Hiring Committee:

I made it through the screening process. You only know what I put on paper so far. Now we meet for the first time. You seem like an affable group. Smiles and handshakes all around. Then, “What’s your dog’s name?” A harmless question, really. But you noticed I use a service dog. You seem okay with it as she settles at my feet ignoring everyone.

The interview goes well. We have a sheet of prepared questions, ten in all including the ultimate “Do you have any questions for us?” I answer them easily, gauging your interest by the notes you take, or don’t take. I see you watching me and hope it’s because you’re hanging off my every word and not wondering what’s so wrong with me that I have a service dog.

Oops. I “forgot” to mention I’m Autistic. I can pass off as NT pretty well. I’ve been doing it most of my life. You don’t seem to pick up on any of my stims (yes, I rub the skin between thumb and finger when I’m nervous) or the bit of rigidity that sometimes shines through in my answers. I choose not to disclose because I’m afraid it will bias you. I’m afraid you will only see my Autism and not all the experience and qualifications I bring to the table. I’m afraid you will judge me not worthy to work because you are not familiar with people like me. Whew, made it through the interview!

Oh wait. I “forgot” to attach myself to the bag of IV fluids I run all day using a pump. It’s a bit obvious, you see. It makes me look fragile. The pump’s clicking noise is like an adding machine. Ka-clunk. Ka-clunk. Ka-clunk. Every 8 seconds. In a quiet room, you can hear the pump doing it’s job. I don’t want you to be distracted from ME. I’m the focus here. Can I do the job? YES, I can. Do you need to worry about my pump? No. I can handle it. The fluids make it possible for me to ask for this job. You see, they keep me out of the hospital.

It’s kind of funny that the job is with Disability Services and I’m afraid to disclose my disabilities because they might disqualify me. That’s how strongly I sense the stigma of being disabled. Sure, this will all come out if you hire me. I’ll deal with that when it happens. At least I know you hired me for ME and not out of some misguided sense of filling an EEO place. Yep, we’ll have to work around appointments, perhaps more so than an “average” employee but not so much that I can’t do the job.

There you have it. You didn’t ask and I didn’t tell. There’s a certain beauty to this dance. We both have to take risks and hope the payout is worth it. I’m sure you didn’t disclose everything about the job. I quite sure you didn’t tell me about the personalities I will have to “fit in” with in this position. So, I don’t feel bad about leaving out a few things that really don’t impact how well I can do the job. That’s what this whole process is about, right? Finding the most qualified candidate to do the job.

Sincerely,

Oysters and Life

 

Why are you disabled?

An odd experience today. To understand this, you need to know that I don’t have a visible disability. You would never guess I’m disabled or even sick, unless you saw my insulin pump. Even then you would wonder how diabetes can be disabling. I get it. You can’t see the hundreds of little ways my life has been affected by illness. And, since I don’t wear a flashing neon sign either looks can be deceiving.

Today, a stranger wanted to know why I had a service dog. Not being in the mood to disclose information, I answered because my dog mitigates my disabilities. Okay, maybe I shouldn’t have used the word mitigate. It confuses people. The next words were “You can’t be disabled. My cousin is disabled and she doesn’t look like you.” I sure hope not. I have many cousins, but none live near me. There is absolutely no way this woman’s cousin could be related to me.

And I said as much. A bit snarky, I admit. I am tired of people thinking all disabilities “look” alike. Please, tell me what a diabetic looks like. Tell me what someone with vascular disorders looks like. Tell me what someone who can’t eat looks like. Tell me what someone with PTSD looks like. Tell me what someone with Autism looks like. Yeah, you can’t. Because we are not our disabilities. We are people who look just like you.

 

Courage

Courage is being scared to death… and saddling up anyway.~ John Wayne

Having a disability is challenging in more ways than most people can imagine. I choose to use a service dog to help with my disabilities. It’s not as easy as some people think. Aside from countless hours of training a canine to help me, I have also had to learn how to help people understand how Blizzard and I work as a team. Some days I’m more diplomatic than other days. I have a list of snappy comebacks to many of the snide comments I hear every day. And then ,there are the “situations” we find ourselves in when we least expect something to happen. The following is a social media post, reposted with permission, that my friend Karyn B. wrote this morning:

Some of you know that I have had a bit of tense history with an elderly gentleman, a Korean War Veteran, who is a patron at my pharmacy. I have had three very unpleasant encounters him regarding Silas. Being we have not crossed paths in quite some time, I assumed the pharmacy warning to compose himself came to fruition and resulted in his transfer to another pharmacy. No, and I quivered as I parked my car and thought I recognized his truck. I am glad I chose to go inside. As Silas and I rounded the corner to the pharmacy, there he was. Scowling. Mumbling in a grunting manner. One eye one me and one eye on Silas. The pharmacist simply said, “Mr ?, that is a service team. You must ignore them.” The man looked at Si and looked back at the pharmacist and said, “She needs to keep that monster bastard away from me.” As if my mouth ran on new Energizer batteries, “Sir, he’s not a bastard, he was an orphan. I am certain you have killed more people than he has, and he is no less a survivor than you. He serves me with the same diligence you served our country. And, his name is Silas, not monster.” Yes, everyone heard the pin drop. My hands were shaking and my voice trembling. I actually had nervous tears in my eyes. I went silent. He checked out, then took a seat. I made my purchase and turned to leave. In a slow, arthritic rise, he stood up and came to me. He said no other words as he walked directly beside Si with the same prong cane he instigated and threatened Silas with before. We exited the sliders as if we went into the store together. The man stood waiting as I had Silas load. I did feel uneasy, uncomfortable with him so near. The man then opened my door for me. I thanked him. He didn’t smile. He didn’t respond, but his actions spoke a million words These are the moments that make life so beautiful. Brave, yet simple and pure.
You don’t need a cape to be a superhero…just the courage to face your challenges with grace and dignity.

Woof, Woof

The dogs with the loudest bark are the ones that are most afraid.~Norman Reedus

Most people who really know me would tell you I’m a logical, methodical thinker. I’ve been this way for as long as I can remember. I look at situations from many different perspectives, analyze the information and choose a path that leads to the desired conclusion. To some, this comes across as manipulative or scheming. To others, it seems to be a knack for predicting outcomes. I found out tonight that to yet others, I appear defensive.

Oh yes. I was drawn into a service dog drama. For those not familiar with these incidents, they occur when one person feels they have the “right” perspective on something related to service dogs. Much like any discussion on a topic people are passionate about, there are always opposing views. I don’t think it’s unique to discussions about service dogs yet it seems that there is more baiting and needling within this community.

I’m sure many of you are familiar with the “lies, damn lies, and statistics” methodology. In short, the more “facts” you can throw out, the more convincing you appear. The problem is, anyone can find “facts” to back up their position. Information flows freely through the Internet and you can find other people who perceive things the same way you do with just a few keystrokes. Just because you have more “facts” in your argument does not make your argument more valid.

In my experience the harder you push for your “facts” to be believed by others, the more you have to hide. It’s one thing to take a stand and state your beliefs. It is an entirely different thing to intentionally mislead and knowingly agitate people just for fun. In my book, that just makes you a bully.

So read the quote above. Think about the people who push “facts” at you and remember that a loud bark does not necessarily indicate confidence. Sometimes it’s just a distraction to keep you from pursuing independent thought.

 

Me and My Dog

Trust is built with consistency.~Lincoln Chafee

Much has been said recently about service dogs. I have two, one that detects diabetic issues and another that helps keep me from falling over. One is a blue heeler while the other is a Great Dane. One flies under the radar and they other, well, draws a lot of attention. Honestly, they both draw attention. Today I had my heeler with me as I ran errands. It’s really cold right now, so she was wearing shoes and a coat. I had at least a dozen people ask me how they could bring their dog everywhere with them.

Let me make something very clear here. I love dogs. I have two pets in addition to my service dogs. But those two are exactly that, pets. They are my companions at home. They lack the training to be out in public like my service dogs. I’m not talking about their manners, which really are awful. They were never trained to mitigate my disabilities.

For every person that said that it must be great to take my dog everywhere, I know there are at least a dozen more thinking the same thing. I will admit that it is great to take my dog everywhere, but not for the reasons you think. You see, my diabetic alert dog (DAD) keeps me safe. She can tell when I’m about to have a problem. She carries all my supplies in her packs. She wakes me up at night when my diabetes is acting up. In short, she is my lifesaver.

I told our vet the other day that Blizzard and I have a healthy co-dependent relationship. She watches over me and I take care of her. That means taking the time to put on her shoes (similar to putting shoes on two toddlers at the same time). Remembering to pack her water bowl and bottles of water. Being stopped while shopping and having strangers ask very personal questions. And explaining to people that Blizzard is not a pet and that slapping a vest on a dog does not make it a service dog.

I would guess that those people who want to bring their dog everywhere haven’t really given much thought to how ignorant they sound to a person with disabilities. A service dog mitigates disabilities. Mine makes it possible for me to function with way fewer hospital visits. Would you like to take on my disabilities so you can bring your dog everywhere? That’s what you’re saying when you tell me how cool it would be to have your pet with you. I don’t see people lining up to become disabled just so they can take their dog with them.

If you have the good fortune to run across a service dog team, please respect the team. The handler most likely doesn’t want to disclose information about their disability. Whistling and making clicking noises at the team could create a life or death situation by distracting the team. I feel that snapping pictures without permission just because I have a service dog implies I’m some kind of zoo animal on display. I won’t be rude most of the time, but I’m not out with my service dog for anyone’s entertainment. I have things to do and places to go. Don’t be offended if I give you a short answer and walk away.

Blizzard and I have worked together for 3 years. We know each other’s habits and can tell how each other feels. It’s a relationship built on trust. And many, many hours of training. I never envisioned myself counting on a dog to save my life every day. Then again, I never envisioned myself having debilitating conditions.

http://www.ada.gov/service_animals_2010.htm

http://www.cbsnews.com/news/pets-posing-as-service-dogs-make-life-tough-for-people-who-really-need-animals-help/