Thursday, February 18, 2016

When You Have to Use a Disabled Parking Placard

I see it almost daily. In the health communities I’m in, someone will say “I need to get a disabled placard but I’m afraid to.” I see the images of awful notes left on the car of someone who uses a placard. You can find examples here, here, here, and here. I could keep going.

This discriminatory BS needs to stop.

I too had tremendous ambivalence about asking my doctor for a disabled placard. I didn’t even consider it an option until my mobility issues started in 2013. I was at the point where I had to drive between my classes and buildings on the college campus where I was teaching because I could no longer manage the walking. Anyone who has been to a college campus knows that finding a parking spot, just one spot, is worth its weight in gold. But I was having to find multiple parking spots all day while trying to get to class on time, and I would inevitably only be able to find a spot far in the back, which made my driving to get nearer the building pointless. It was becoming a daily crisis for me as I was desperately struggling to have enough energy to keep teaching and getting through the day. I could not waste all the energy I had trying to walk any distance and failing. 

So I went to the doctor I trusted the most, my cardiologist, to ask him to sign the form. I printed it off the DMV website. Then I felt completely ridiculous asking for a disabled placard, no matter how desperately I needed it. I even told him how absurd it felt to ask him for it. He signed it without question. I still was not comfortable with the term “disabled” then and I was still trying to pretend I could physically do what I was longer able to do. "Passing" as able-bodied is significantly easier than trying to live with disability, and I was coasting on denial as long as I could. But I asked him to sign the form because I needed to be able to work. I justified it to myself by saying “I’ll only use it on the days I really need it. I won’t take up a spot for someone who really needs it. I’m not technically disabled, and I don’t want to endure anyone’s ridicule or derision because I ‘look fine.’ I won’t use it very often.”

But I was wrong. I was and am disabled. I got the placard and ended up using it every day because it was a life saver. I wished that I had gotten it sooner when I needed it, long before I finally talked to my doctor about it. I wish that worrying about what others would say or the fear that someone would leave a nasty note on my car wouldn’t have gotten in the way of me using an invaluable resource I needed.

There are many who are going through this right now and are debating whether they should get a placard and if they want to deal with the discrimination that can come with it. They probably read these horror stories every day and see the nasty notes people leave on someone’s car because not enough people understand that most disabilities and chronic conditions are invisible.

I imagine there are a variety of reasons people leave notes on cars or make discriminatory comments to the disabled. They may believe they are standing up for those who are “actually disabled,” acting as vigilante warriors protecting a “privilege” that only a select few are “entitled” to. They may believe that people are exploiting the system for personal gain or even feel envy that someone has access to a prime parking spot anyone would want. They may assume that all disabilities are visible and that only individuals who require a mobility aid qualify as disabled.

When someone leaves a note on a car or makes a comment, they are making rash judgments about someone they’ve never even met and enacting a gross injustice on someone who faces daily obstacles already.

This needs to stop.

I count myself  “lucky” because I’ve never had a note left on my car. I had to start using a cane right after I got my disabled placard so my disability was no longer invisible. I have gotten harsh stares or questioning glances when I have used the motorized carts at stores. The last time I drove myself to a store and used the electric cart (it’s been years now since I could do this), an elderly man got angry with me because I used the last one. I needed it as much as he did. I was just trying to pick up my medications without falling or fainting in a store. Now, when I leave the house I have to use my wheelchair almost all the time.

I bring my own chair, thank you very much.

When someone who doesn't "look disabled" uses a disabled placard or an electric cart, we need to remember these points:

 1. Most disabilities and chronic conditions are invisible. Often, you cannot “see” kidney disease, cognitive disabilities, neurological conditions, cancer, prosthetic limbs, mental illness, etc. All of these and more qualify as disabilities, and these individuals are allowed access to a disabled placard to make their lives and the world that much easier to navigate.

2. Police officers, parking attendants, etc. can ask someone to show them the permit that the disabled are required to carry when they use a placard. People do not need to enact their own form of vigilante justice. There is a system in place to make sure that those who use the placards are permitted to use them.

3. No one is entitled to an explanation or “proof” of someone’s disability, especially if you do not know the person. No one is required to “prove” their disability to anyone. Believing that someone is required to explain their disability is pure ableism.

 4. If someone would like to help the disabled, there are better ways to do this than by leaving notes on someone’s car or making disdainful comments. 

You can support legislation that helps the disabled. We have the Americans with Disabilities Act in this country but the law is not perfect. We need more laws and protection for the disabled so that they can enjoy the same privileges and access those without disabilities enjoy. You can spread the word that many disabilities are invisible and learn more about why disability and illness are often considered “invisible.” You can educate yourself about all that qualifies as a disability and see that 1 in 5 people in the U.S. are disabled.

 5. There are essentially no upsides to having a disability. The disabled face hurdles every day that the able-bodied cannot fathom. If you are concerned that the disabled are getting a “privilege” that is somehow “undeserved,” you are entitled to your opinion but don’t act on it. Our society treats the disabled as a protected class and enables them tools to improve their quality of life so they can be full participants in our society. The ADA was only passed in relatively recently, 1990, and it provided legal protection from discrimination and made accessibility in public places for the disabled the law. We should celebrate the fact that those with disabilities have access to tools that improve their lives.

For any of you out there who are putting off getting the placard because you fear the ridicule or are struggling to recognize yourself as “disabled,” I know what you are going through but we must use every means available to us to help us succeed. Even if someone does leave a nasty note on your car or makes a disparaging comment to you, you can keep fighting and you can survive it. It comes from ignorance and we can only hope that someday they will understand the injustice of their act. You are making the right choice in protecting your health.

Don't let anyone diminish the choices you have to make to achieve a higher quality of life. 

Thursday, February 11, 2016

Valentine's Day Playlist

This week I bring you something fun and uplifting, a Valentine’s Day playlist to get your groove on. I’m joining forces with my BFF Carrie Anne over at Little Big Blog for this one and we’re calling ourselves “Little Broken Hearts.” She curated her own love song playlist, and both playlists are here for you to enjoy.  

We text each other about 100 times a day, and she suggested this post about a week ago. She knows I’m a sucker for making playlists. I know many of you have activities you like to do while you have to rest on the couch or in bed as your body comes up with new ways to break, doing things such as adult coloring books or Netflix. I like those things too, but what I love to do the most is make playlists. I make a playlist for every event or gathering because I worry more about the music being right more than having the right food or drinks. I can spend hours fine-tuning playlists.

So when she suggested this post, my brain started spinning. These are songs that I really love and that make my heart feel warm and squishy. I hope they make you feel warm and squishy too! I explained a bit about each song and why I chose it.

Hit play and enjoy!

-Van Morrison “Into the Mystic”
This song has become like an anthem for me and husband, and we listen to it almost daily. The spirituality in the lyrics, the acoustic arrangement, and then the poignant saxophones that punch through give this song such a soulful, ethereal beauty that it’s hard not to feel your heart swell listening to it. It touches all the right places in my soul: “We were born before the wind/ Also younger than the sun / Ere the bonnie boats were won / As we sailed into the mystic”

-Nick Drake “Northern Sky”
We put this song on our playlist we gave as favors at our wedding 10 years ago. Nick Drake’s talent burned bright, but sadly he died far too young. He did leave us with his legacy of gorgeous music to still enjoy. This is another soulful, upbeat song that always makes me feel happy. Listen for the bouncy interplay of his guitar, the piano, and the organ. This one is perfect for long drives on sunny Sunday mornings.

-Bruce Springsteen “Secret Garden”
This song just slays me. Utterly slays me. I’ve been listening to it on loop the last few weeks. I can’t even do anything else while it comes on. It just possesses me completely. 

-Stevie Wonder “Creepin”
I’m a huge Stevie Wonder fan. Along with Nat Cole, he is my boyfriend. This is easily one of the sexiest songs he has written. Unsurprisingly, he plays every instrument on this song. It’s got all the makings of a great Stevie song but it’s the understated groove and longing in the lyrics that make this one perfect for love. This is a good one for make out sessions with your Valentine.

-Feist “Inside and Out”
This one is just pure fun. All respect to the Bee Gees, but Feist really modernized and improved this jam. The increased tempo really did the trick. This is one to dance to with your Valentine. Get up and shake it or get your groove on from your couch (which is how I do it).

- Sting "A Thousand Years"
I adore Sting. I love his intellectual brand of pop music and his brilliant musicianship. I had a hard time picking which song of his to include. I almost went with “Fields of Gold,”  but I really like this obscure song on one of his later albums. I love the cosmology imagery in the lyrics and the way he blends world music in his songwriting. This song deserves a careful listen. 

-The Nat King Cole - “There is No Greater Love”
I don’t even know what to say about Nat Cole. He is probably my favorite musician and has been for 20 years. His trio material is his best work, but most people know him for his vocal material. He was a brilliant pianist, organist, and arranger as well. This song is one of my all-time favorite songs in general. The arrangement is string-heavy but is the perfect complement to his velvet voice. “There is no greater love in all the world/ It’s true / No greater love than what I feel for you.”

-Sam Cooke- “I Wish You Love”
I’m convinced Sam Cooke’s voice has curative powers. It’s medicinal music. His voice has saved me multiple times when I’m crashing physically or emotionally. This song makes me feel melty all over. It’s hard to choose which Sam Cooke song to use for this list but this one is perfect.

-The Temper Trap “Sweet Disposition”
I only recently discovered this song even though it’s been popular for awhile. I had to include it because I’ve been listening to it non-stop for weeks now. It’s got everything you could want in a great pop love song: pulsing drum, falsetto vocals, an explosive chorus, an upbeat arrangement. This is also one to dance to.

-Diana Krall “Popsicle Toes”
This song is sexy and fun. She’s one of my favorite musicians and I’ve seen her live a few times too. This is a Michael Franks song she made her own. The sexy, suggestive lyrics and the pulsing groove make this one also a great make out song.

-Patty Griffin “Heavenly Day”
This song always makes me a little misty. It’s such a gorgeous ballad. I only started listening to Patty Griffin a few years ago and I really feel like I’ve wasted so much of my life not listening to her. My favorite part about this song is she wrote it about her dog.

-Tori Amos “Merman”
Like most Tori Amos fans, I’m a fanatic for Tori and have been since I was a teenager. I have her entire catalogue memorized. There are other embarrassing things I can share but I’ll save it for another time. This is one of my favorite Tori songs and the sweetest lullaby she’s ever released. It’s just her piano and her layered vocals. That’s standard Tori. Get your tissues out for this one. It’s unbelievably sweet. 

Now enjoy Carrie Anne's playlist! It's 90s perfection :) 

I wish you all love and a wonderful Valentine's Day!

What love songs would you include on your playlist?

Friday, February 5, 2016

Some Goals for 2016

I meant to get this post up in December or at least a few weeks ago, but this post is a compliment to my post where I outlined what a typical good day looks like. I spend much of my time coordinating my care, resting, and working around my symptoms. I make weekly goals in my planner every week and then prioritize them, always making exercise number one no matter what else is going on that week. The rest of my goals usually involve phone calls, paperwork, appointments, etc. Thus, my life often feels like it boils down to constant management of my own health. I need a reminder to focus on life and my other goals.

I made this list in December and strategically left out my health-related goals because I’m trying to find a way to carve out a life, or a semblance of a life, outside of illness. I would say that the last few years, illness has controlled my life no matter how much I try to make it the other way around.  I like to believe I’m the captain navigating these rough waters, but often I’m really just the vessel plodding along in the storm. I have surrendered to the fact that illness is a constant source of chaos but it doesn’t mean I can’t at least attempt to make a life in conjunction with that chaos. This is what I’m telling myself at least.

My BFF Carrie Anne has an enviable Life List and she inspired me to make one a few years ago. It’s funny; I actually recently went back and looked at the one I made, which is from my pre-sick life, and I put things like “hike Yosmite’s Upper Falls,” “go whale watching,” and “publish more academic articles” on there. Uhhh….not quite. I’ll have to start from scratch at some point on it. 

But here are some goals I think I can manage this year:

1. Get Back to Creativity
Whatever your passion or skills, creating and the desire for self-expression are the essence of our humanity. I have always been artistic but I lost some of that creative spirit when I became an academic and while dealing with illness. I used to play music regularly, even getting paid gigs for weddings or at restaurants. I worked as a children’s illustrator for years at our local library. I was constantly creating and producing. This is my number one goal for this year: do something creative every day.

I’ve been playing my keyboard almost every day for a few months now so I’m on track with music. Even though I cannot perform right now (which was always my motivation to keep practicing), I’m working on learning and memorizing new material and trying to improve. I’m hoping to try to focus more on writing, finishing, and recording my own material. That’s at the top of my list for my creative goals.

I dream of getting back to painting and giving friends and family gifts of artwork regularly. I dream of sitting in my yard and drawing for 10 minutes at a time and taking breaks. Honestly, working as an artist for so many years put a damper on my desire to create my own artwork. As with all creative pursuits, it takes commitment to improve as an artist and develop skills. I have not been committed to painting for many years. But I still desire to do it more consistently.

I have some clear writing goals. I’m working on getting at least one blog post up a week, getting more writing published, and working toward writing my book. I got six posts up last month, so I’m already on my way toward reaching some of my writing goals.

2. Go Outside
I try to remember what pre-sick life was like and what I did every day in those years, and I would not describe myself as necessarily a home-body then. Yet, since I’m home-bound now, I don’t even leave the borders of my own home with any frequency. The boundaries of the world I inhabit now can be measured in mere feet. There is no literal or figurative horizon to look out to and build dreams on. My horizon is now internal.

We live in a duplex that has an enclosed yard and that was the main reason why I wanted to live here. I try to sit outside in our yard every day. It’s difficult during the warm months (which is most of the year here), but I try to time it right each day to get outside even just for a few minutes. I try to walk with my trekking poles regularly (I’ve had limited success with this in the last few months unfortunately). My goal this year is to get outside every day. 

Along with meditation, this is fundamental to my mental health and sense of well-being. Getting outside, even just sitting in our yard, helps me feel like I am part of the world and feel less trapped. I talk to my cats and the birds in our yard and watch the flowers bloom. It’s glorious.

3. Listen to more music
This is separate from number 1. Since I have to spend so much time resting, it’s a good opportunity to listen to music, yet I honestly spend much of my resting time either reading the news, watching documentaries, or staring off into space. I’ve been anxiously waiting for the full swing of the election season so I’m already spending too much focusing on it. I’m not very interested in football or baseball. The World Series or the Super Bowl are barely a blip on my radar. Politics is my sports.

But music gives me more joy than almost anything else, so I would like to disconnect more and just listen. Listen to all the new music from my favorite artists I haven’t listened to yet. Listen to some of my records I haven’t listened to in ages. Just listen.

4. Read more
I wrote a post a few weeks ago that listed the books I had finished in 2015. I finished 20 books but I’m aiming for 30-40 this year. I know I’ll likely never get back to the 50-70 I read when I was an academic but it will feel close enough.

5. See more of my friends and family
Even though I don’t get out much, I see some of my friends somewhat regularly. But I want to see more of them and see more of my family. The last few years have not been kind to my family and our relationships suffered significantly under the strain of my mom’s failing health. I have high hopes that we can start to move forward this year. I want to see more of my husband’s family too, especially my crazy nephews.

I’d love to be able to drive again. That would make a huge difference with being able to see family and friends more often. Hopefully at some point I can do that again.

6. Work on projects with husband
My husband is a builder and maker of things but the times I have participated in his projects have been slim to none. I have a gorgeous 1920s antique armoire that my mom saved for me that desperately needs to be refinished. It’s been sitting in our garage for three years and I can’t wait to see it back to its full glory. It’s a serious undertaking but husband is on board to help with it.

We have some other projects on the table. We ordered a flint-knapping kit last year and have been waiting for some warmer weather to practice making hand axes. We can party like its 10,000 BC and make some prehistoric tools. Sounds fantastic.

This could come in handy in the zombie apocalypse

7. Travel (i.e leave the house for things that are not appointment-related)
I sometimes think about what my life would look like if illness hadn’t taken it over. I’d still be a workaholic and spending much of my time working, but I’d also be playing music and travelling. I have always loved to travel. I honestly cannot remember the last time I left my town for something other than an appointment, even just to go to neighboring towns. One of my BFFs moved to the next town over a few years ago and I still haven’t seen her new place. My sister moved to the Bay Area a few years ago and I still haven’t been able to visit her there yet either. It’s just absurd.

I want to attempt to venture out this year. ‘Travel’ for me doesn’t mean I’m going to travel up the Pacific Northwest (though I’d give anything to do that again). It means going places that are nearby, even just a mile or two down the road, and the excursion NOT being appointment-related. I’m going to actually count any activity where I leave the house that isn’t for some kind appointment as “travelling.”

There are places I really want to go that are not that far from us but would take some serious planning to pull off, including having to stay overnight. I haven’t been to Yosemite in 3 years, which considering we used to go there multiple times a year, is desperately sad. I’d love to take a trip to Monterrey and go the aquarium. We both love the Foothills and had family in Sonora when we were growing up. Ultimately, our goal is to move there, but I’m hoping this year I could pull off a day trip there again. If I can start slowly working my way up to these things, maybe we could finally get back to thinking about our bigger travel plans like visiting my husband’s aunts in southern California again or finally making a trip to Yellowstone. Someday.

8. Meditate more
I had a great therapist when we lived in Nevada who had a background in mindfulness, and she helped me get back to meditating. I used to do a lot of yoga years ago and meditation was always part of that practice. I would like to consistently meditate again, preferably once a day. I have found that morning is the best time for me, and I have actually discovered that it helps to stabilize my heart rate and breathing. I usually wake up with my heart rate around 160 (thanks POTS) and struggling to breathe (thanks Myasthenia), but sitting and focusing on my breath helps to improve these symptoms that are usually the worst in the morning. But more than anything else, meditation offers benefits for mental health. For me, it has improved my anxiety significantly and helped my depression too. When I feel myself starting to spiral out of control mentally, I try to sit still for a few minutes and just focus on my breath. It really helps.

And just for fun, here are some big dreams and goals—some I’m actually working toward and some that are just crazy ideas I want to throw out to the universe:

1.      Finish my album of originals and sell it or make it free online
2.      Write a book (or two or three)
3.      Perform regularly again
4.      Start a non-profit that will help disabled chronically ill patients get access to important resources
5.      Travel to the UK
6.      Be able to drive to my friends/family’s house and be able to drive myself to local appointments
7.      Organize fundraiser events (for Dysautonomia, Myasthenia Gravis, and Alzheimer’s)
8.      Be able to teach in a classroom again (or any capacity really)
9.      Take freelance writing jobs
10.  Have a vegetable garden that I am able to maintain
11. Go camping
12.  Get an MFA or finish my PhD
13. Sell some of my artwork or give it away for free

I don’t know if I’ll accomplish any in this last list but these goals beckon to my soul for completion someday

I recommend making a list for yourself also, making sure to separate the health goals from your life goals. Even as I was writing this, I kept finding myself listing health-related desires. This was a good exercise to try to delineate my own desires from the health-related goals I’m working toward every day. We have to remember to live sometimes, even if much of that life has to be lived internally. There are still universes within each of us that deserve exploration.