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

Too abled

Well, the day has come again. People in several disability communities I’m part of on a social media site have started discussing what does disabled mean. It’s not the first time. I wrote about this here: The Disability Card and here: Orphan Zebra.

Today is different. Maybe it’s because I’ve had several heart to hearts with my care team recently. Those complicated discussions where the doctors try to convince me that when I push myself, I only make myself sicker while I argue that pushing myself is what is expected as I’m not disabled. Then the doc runs through all the things they are providing support for me. I guess the day is finally here.

People look at me and don’t see disabled. I work very hard to be non-disabled, so on the days people see me “normal” they have no idea what it took to get there. Of course, I only leave the house 4-5 days a week because the rest of the time I’m trying to get “better” enough to look normal. It’s a daily decision on whether I’ll make it out of the house.

I think the hardest part is I’m still of working age and have the education to be employed. I should be working, or so I feel. I’m just not sure there are any employers who understand why I have so many doctor appointments. Or why I’m dragging at work. Or how can I be sick….again. I’ve worked for employers who can’t see past disabilities whether they be temporary like the flu or permanent like mine. There is discrimination, both subtle and outright. The last few jobs I interviewed for, I was asked about my disability in a very roundabout fashion. Oh, they are careful not to ask outright and I do my best to answer truthfully without shooting myself in the foot. But, I can’t help but wonder if I’m not getting the job after the interviews because of disability. What if I’m equally qualified as a non-disabled person? Who would you choose?

So today at an appointment, my insulin pump fell out of my pocket. I now have quieter infusion pumps in the backpack, but you can still see the IV line running under my shirt. My service dog alerted during the appointment. I lost my train of thought because I was dealing with the alert. Fortunately, this was not an interview. It’s really hard to overlook these things.

So, to the guy who told me I was using a handicapped spot I didn’t need; the person who exclaims “you don’t look disabled!” and the surprised looks I get when my service dog comes out from under the table….leave me alone. You have just walked in on chapter 47 of my life. You don’t know how I got here or what my future holds.

To those online personalities who try to define disability, just stop. Disability is individual. In some cases, one aspect of a life is affected. In others, it is multiple aspects. It’s not a contest. It’s not a game. It’s life and all I want is to live it the best way I can.

Cloak

About 30 years ago, I was really into reenactment. My mother made me a full circle cloak. It’s a soft brown corduroy that reverses to a navy blue cotton. It has a hood that hides my face. Yes, I still have my cloak.

Some days I want to dig out my cloak and pretend it makes me invisible. I’d like to go about my day in anonymity, without forced interactions. I’d like to just wrap myself up in my cloak and disappear.

I have a metaphorical cloak too. It’s the armor I don every morning as I prepare to face the day’s challenges. Some people pat down their pockets to make sure they have everything. I run down a mental list…sense of humor (check), sanity (most days), emotional sunblock (check), heart not on sleeve (maybe), proverbial duct tape (always comes in handy).

Much like the soft brown cloak, my other cloak is used to keep me “safe” from whatever the day throws at me. And, like my fabric cloak, there are places where the cloak swirls and allows things to slip past my mental armor and inflict great pain. It doesn’t matter how hard I try, something always slips past.

So, here I am typing. Wounded and knocked about, but still trying to patch up the damage from the last few days. Drained, spent, exhausted. Living in a world where decisions are made about me….without me.

Grrrrrrr

” I think these are both good things as 1 in 45 children with autism is nuts! And not looking for a cure would be even more crazy. There seem to be 2 sets of parents, the ones who want answers and the ones who kinda gave up and have found their own way to deal with the fact that their child will always be autistic. I am a why parent and I think there’s nothing wrong with that. There’s a lot of groups that censor and bully parents who ask why and want answers because it doesn’t fit the official narrative that they have deemed acceptable for discussion. To be honest it’s very upsetting to be downtrodden by my places that claim to “support” autistic families when in fact censuring conversations and ideas is the total opposite.” from a social media site

Background. The discussion was about the monkey trials used to find the cause of Autism and thus lead to a cure.

Let’s look at this sample. 1 in 45 is nuts! Not sure where that number came from, but 1 in 15 people enjoy Skittles. Many years ago I was told about lies, damn lies and statistics. You can twist numbers any way you want to prove your point. Hey! did you know that 1 in 67 people have allism (as in I’m all that!)? Maybe we should be researching that.

The word deal is so loaded. Well, you could be dealing a deck of cards, but I think they mean “put up with” in this case. Put. Up. With. Seriously, maybe we ought to require a parenting test before you can procreate. I “put up with” crayon on my walls, dirty diapers, sibling fighting, smeared peanut butter sandwiches and so on. Yep, I learned to “deal” with childhood. Did it anger me as I mopped up the spilled juice yet again? I’m sure it did. Did I stop serving juice? No, because part of the package is “dealing” with the consequences.

Bullying.  Oh my. How is not accepting your child considered “not” bullying? How is your desire to make your child change come hell or high water “not” bullying? Humans need love and nurturing to grow into nurturing human beings. If you are always looking for a “better” child, how does that make your child feel? If the people who are supposed to love and support you think you are deficient, that leaves a mark or two.

Suppressing ideas. Oh, please. Now you are just whining. How do you suppose your child feels when you yell at them? Or tell them they don’t know anything? Or refuse to engage in conversation because you “KNOW” you are right? But, you are the parent so it’s ok. You don’t want to hear the Autistic voices. You don’t want to hear the voices of those who disagree with you. You aren’t asking to be heard. You are demanding that your voice be the only sound.

Nothing about us, without us. If you don’t want to hear other voices, get off social media. Find a nice small community that shares your thoughts. This is here. This is real. If you are truly trying to understand, then you would hear the thousands of Autistic voices trying to tell you there is a way. It’s called acceptance. It doesn’t involve being a “martyr” because you have an Autistic child. It doesn’t involve spending thousands of dollars to “fix” that which is not broken. Just accept that your child loves you and all you need do is reciprocate.

Peeved

It just happened again. Someone brought up a “cure” for Autism. Some comments were thoughtful. Others were clearly written by people who feel overwhelmed by Autism in their families. More than one person pointed out that a cure would allow their loved one to “be a better person.”

Or, to “relieve their suffering.” Perhaps to “make it easier to fit in.” I was just messaged that if I don’t want to be judged, I shouldn’t judge. Yes, this is a semi-live post. Oh, look. A cure would “make society better” and “cost less money.” These are apparently perfectly valid reasons for wanting to change the very fiber of a human being.

We continually shove this in closets. No one talks about the genetic testing that presents parents with an opportunity to abort a fetus with birth defects. Yet, it’s practically a routine part of prenatal care. Shall we devise a screen for “the Autism gene” and give parents that option?

Oh, some will say absolutely. Let me check….yep, a parent should have that option because I can’t possibly know how that child’s life will be and it could be a “mercy,” A mercy? No one can predict how a child’s life will be. If you aren’t willing to spin that roulette wheel, then don’t procreate.

I get that Autism is a spectrum. I get that it ranges from severe to mild and has many, many co-morbid conditions. I get that it is harder to be Autistic than it is to be not Autistic. But is that enough to declare a war on Autism and Autistic? Is that enough to encourage eugenics?

Are you uncomfortable yet? You should be.

The comfortable patient

Two days ago someone said something to me that, well, left me a bit shocked and peeved. This person is a medical professional…a nurse to be exact. As we rolled through the litany of questions asked at all appointments, she commented on how comfortable I was being a patient. I asked what that meant and she replied that because I know “all the answers” I obviously love being a patient.

What?

So I’ve been thinking about how many other medical professionals feel this way about me. I mean, I keep an overnight bag packed because I never know when I’ll be admitted. It contains all my favorites including foods that I know won’t make me sicker. And pajama pants because, well, I’m not a fan of hospital gowns. And extra chargers for my electronics. Does this make me “comfortable” being a patient?

I don’t think so. It’s just after 6 years of this, I know what will help and what won’t. I know what treatments work and which ones won’t. I’ve reached the point where I can read shorthand notes in my chart. It’s only because of the twists and turns I’ve lived through.

But, is this why I am received with skepticism when I do go to the hospital? Is this why doctors think I’m just a drug seeker? Do my nurses really feel I’m just after attention? It sure would explain many of their behaviors.

So, to the medical professionals….no, I’m not “comfortable” receiving medical care. My knowledge isn’t a matter of me trying to “out think” you. It’s just that I live with this every single day. I’ve been through enough to be able to know how to get through one more time. Just because I’m not “sickly” enough for you doesn’t mean I’m not sick.

And pajama pants are way more comfortable than flashing everyone.

Ableism

I’m hearing this term a lot. It seems to mean that a social prejudice exists against disabled people. I’ll buy that. It’s been going on as long as there have been people. I guess it is just now becoming a cause to rally around.

Sure, we should treat all people equally. Wouldn’t that be great? <sounds of John Lennon’s Imagine in background> I’d love it if every time I spoke up about something I didn’t get thrashed to the ground. Seriously, because of my perceived ethnicity and socio-economic status, I am frequently accused of speaking from a place of privilege. Nope, didn’t win a piece of that last Lotto people. Yep, I’m middle class as others define it. I’ll even admit to being a white female as many seem to take umbrage at that too.

I get it. I haven’t LIVED “it” and therefore know nothing about “it.” Well, I’ve lived with disability. So, being able-bodied is the norm and anything else is disabled. I’m not normal because not everything works quite the same way as it does for others. I use elevators, ramps and escalators instead of stairs. I don’t sign up for 5K runs. I spend more time with doctors. I think I glow in the dark. I know I can’t do some things and probably won’t ever do them again.

But, my tribe has not sent me into the forest to die. They actually fight quite efficiently with the doctors who wish I would do that. Speaking of doctors, aren’t they just the very definition of ableists? I mean, they compare you to all their charts and graphs of normal and sit in judgment on why you aren’t. They try to fix you so you can be normal again.

But what if you were never normal according to those charts. Why does everyone spend so much time trying to fix things that may not be broken. Because they can’t accept that “not normal” may be as okay as it gets. I think that’s the heart of the ableism issue. Why are we trying to fix what isn’t necessarily broken?

I read a blog today about a permanently disabled wheelchair using bumping into two temporarily disabled wheelchair users on a bus. The temporary users where complaining about stairs and such and stating they couldn’t wait until they could walk again. They were visiting the land of disability.

I’m not visiting. I’m not a tourist. I’m not even lost. This is my normal. This is what being disabled feels like to me. You won’t hear my voice screaming to be accepted as normal, for I am happy with what I’ve got. I feel the discrimination. I understand wanting to be accepted for who I am. That would be awesome. However, for now, I will just wish that my doctors learn how disheartening ableism is for me. And be thankful that my tribe doesn’t feel the need to send me into the forest.

Nineteen

Dream on
Dream about the world were gonna live in one fine day.
Dream on
Spend the night in heaven, I’ll be here to light your way.
Someday tomorrow will smile
But little girl in the meanwhile
Dream on~ The Righteous Brothers, Dream On

Today she celebrates 19. It seems like a long time. And yet, she tells me it is not. But 3 years is a long time too. And to me, it’s not. Time shifting, changing, morphing into yesterdays, todays and tomorrows. A constant swirl of ever-changing landscapes that sometimes move so fast, you miss them. At other times, they are so slow you wish time would speed up. Ah, 19.

She’s a dreamer. The kind of person this world desperately needs. She sees things I miss. She’s adventuresome….on her own terms. A small smile that spreads. A burst of laughter that rings throughout the room. Impish.

I wonder how I can be so lucky as to call her mine. She may not like that all the time, but it’s a fact. We play together. We argue. We make up.

Dream on, my little girl. Keep dreaming about how things can be and one day, you will smile at everything you have become.

Bubble

I used to bite my tongue and hold my breath
Scared to rock the boat and make a mess
So I sat quietly, agreed politely
I guess that I forgot I had a choice
I let you push me past the breaking point
I stood for nothing, so I fell for everything~ Katy Perry, Roar 

I wish I wasn’t a judgmental as I am. I admit it. I look at things through my own view of life and I wonder…a lot. One social media friend has made a huge deal about having endoscopy and a colonoscopy. I mean, the week leading up to the event was filled with comments  about how they couldn’t even open the envelope with the instructions in it because they were petrified. Now they’re posting about how hard the recovery is for them. And I’m reading this thinking “seriously!”

Others make comments about my life along the lines of “I wish I could do that” and all I can think of is “why not?” You may not be able to do exactly what I’m doing, but you don’t need someone’s permission to get out and about. It’s a choice I make. Unless I’m in the hospital or feeling exceptionally crappy, I’m up and doing because that’s how I think. It’s much harder to hit me if I keep moving 🙂

In another social media thread, someone asked for suggestions about managing their healthcare. I tried to be helpful, but when the poster stated they could never question their doctor out of respect, I went off. It’s your health that you should be talking about. If you make an appointment to see your provider, you should leave with fewer questions than you came in with. There is nothing “wrong” with making sure you understand expectations.

We all get to make choices. We all hope our choices are the “right” ones. Reality is, you won’t know until you go for it. You won’t find your limit if you never push yourself. You won’t get through the next thing on your list if you stay in one place. You won’t learn anything if you never ask questions. If you just want to sit there, that’s fine. I’ll catch you when I get back from my next adventure.