March 1 was World Wheelchair Day. I am writing this as an ode to the many people I admire who are wheelchair users. If this is outside your zone of experience, I encourage you to follow people who use wheelchairs. I have included some accounts below. Disability isn’t a tragedy. Disability is part of the human experience. Please listen to disabled people.*
Specifically, I hope to spark a conversation about ableism and how it negatively impacts all disabled people. And there’s a double-edged sword for the many ambulatory wheelchair users. An ambulatory wheelchair user can stand and walk and also uses a wheelchair. They are perpetually caught in the crosshairs of “I hope you walk again” and “Are you faking it?”
We make people’s lives more difficult by centering walking. Depending on someone’s circumstances, walking can be more tiring, more dangerous, and even less fun. The hideous term “wheelchair-bound” reflects society’s extreme fear of this particular mobility aid–that it’s a trap, a cage, a jail. But nothing could be further from the truth.
A wheelchair is a mobility aid and people use it to varying degrees. It’s a gut punch that so many ambulatory wheelchair users resisted the wheelchair and felt shame in using it. We need to support people on their journeys and we need to ensure that spaces and places are wheelchair-friendly.
If you don’t follow disabled people online, you are missing out. Here are some of my favorite accounts to follow.
Kaylee Bays, dancer and dance instructor https://www.instagram.com/slayleebays. She was also a contestant on the latest season of So You Think You Can Dance and is a member of The Rollettes.
Play Spark (https://play-spark.com/), is Serena (speech therapist), and Kylie (occupational therapist). They have a child-led practice and are an amazing resource. Serena’s toddler son has a rare form of muscular dystrophy that affects all movement. He was recently outfitted with his first wheelchair and the videos are pure joy and freedom.
* Like many well-meaning but uninformed people I got caught up in person-first construction when it comes to disability, i.e., “a person with a disability.” I have yet to interact with a disabled person who prefers this. Most call themselves disabled. There’s nothing shameful about being disabled. I always strive to use someone’s preferred words/labels.
Hopi, the sweetest dog ever, left us at 16 years old. That’s bonus years for an English Lab, and we are grateful for all of them.
We were inexperienced dog parents when we adopted Brin. Somehow I got it in my head that a second dog would make it easier for the first. Ha!
Luckily, we won the dog lottery with Hopi. She was truly the nicest dog and so laid back. I just recently learned that although Robert went to do a meet-and-greet with three dogs, he only had eyes for Hopi. She was his girl, through and through. On the first day with us, she jumped on the couch, put her head in his lap and went to sleep.
Hopi was a purebred dog that found herself in a rescue situation. The woman who cared for her was sick and couldn’t take care of her. The foster mom that fostered Brin was helping to find her a new home.
Hopi was several months old when we adopted her. She and Brin were born around the same time, in December 2006.
When we got her, her name was Opie Bean. She was supposedly a puppy cover model for the L.L. Bean catalog. No offense to Ron Howard, but Opie didn’t seem quite right. A friend suggested Hopi, and that stuck. Usually, we called her Miss Hopes or Shiny, Happy Hopi.
Hopi’s crazy backstory was like someone in the witness protection program. We were told she had been injured as a young puppy – kicked by a horse was the story – and that she had a “bad leg.”
When we took her to the vet for the first time, we learned the truth was much worse. Her leg had been broken, was likely never treated and healed badly. In the X-ray, it looked like a pile of spaghetti. That’s probably how a purebred dog ended up a free dog in need of a rescue.
I don’t think I will ever forget the horror on the vet’s face. He wasn’t someone I knew well (I was a new dog parent). He referred us to the local vet surgeons. She was about nine months old at that point, and we decided that repairing her leg gave her the best shot at mobility and a long life.
The surgery was difficult, and she had a lot of swelling. Luckily we were referred to a fantastic physical therapist, and Robert took her there three days a week for a long, long time. She recovered. The leg was a little shorter than the other, but she was mobile. She could play and run. In the beginning, she often only used three legs, and the explanation was, “because she can.” One vet told us that dogs are three-legged animals with a spare.
After that dramatic entry into our lives, Hopi did have the desired effect on Brin. They were always better as a pack. And despite her early interest in chasing our cats, Hopi turned out to be excellent with them. When Hopi’s mobility was impacted three years ago, we noticed that the cat would hang out with her. We started referring to Lille En as Hopi’s emotional support animal. During the last few months, the cat was usually nearby and checking in on “her” dog.
Hopi was a couch potato even as a young dog (we learned this is a major difference between English labs and field labs). We took the dogs to daycare for many years, and Hopi always wanted to be with the people, earning the title “office dog.” She was good with dogs of all sizes. Small dogs used her as a dog bed. She was so laid back that once she fell asleep during a grooming appointment, and the groomer painted her nails.
Hopi loved belly rubs and cookies–all food, really. Because, duh – she was a lab. Because of her leg, she wasn’t great at learning to sit, so at the trainer’s suggestion, we taught her to spin around instead. She never jumped on people, thank goodness, but she did jump up and down when people came to the door (think bucking bronco). When we got ice cream, she had to have her own cone because she was a chomper and not really into sharing. (See this video for a realistic portrayal of sharing ice cream with Hopi.)
About three years ago, she had trouble walking, and X-rays showed pretty bad arthritis. Another physical therapist helped her with mobility and recommended Adequan injections to go with her Gabapentin and Tramadol. She was a trooper through all of it. Her limited mobility made her use her voice in a way she hadn’t before. OMG, the girl had a giant bark! We did okay figuring out what she needed, and she was patient with us through all of it.
It’s been hard without her and we miss her something fierce. Going from a family of five to a family of four has been sad and disorienting. There’s a Hopi-sized hole in our hearts that will probably always be there.
*15/10 is the highest rating from We Rate Dogs. Seems fitting for our sweet girl.
Spoiler alert if you aren’t caught up on season one of Strange New Worlds.
If you’ve been watching the latest Star Trek series, you have met Hemmer, the Blind Andorian engineer of the Enterprise. Hemmer is an Aenar, a subspecies of Andorians. Hemmer is played by actor and artist Bruce Horak, who is also Blind. (No cripface in this Trek.)
I love engineers; I can’t help it. And grumpy old guys. So yes, Hemmer is exactly my type. He’s also clear about his purpose: he fixes that which is broken. The friendship between Hemmer and Cadet Uhuru is one of my ST favorites.
When you fall in love with a character, it’s brutal when they die. When it was clear that he would choose to sacrifice himself to save the rest of the crew, all I could think was, “Not Hemmer!” His bravery and his dedication to his purpose are what keep me coming back to Star Trek.
His parting advice to Uhura is wisdom for us all: “Make a home for yourself amongst others, and you will find joy more often than sadness.”
I drink my first cup of coffee in bed every morning and just about every morning, my cat, Lille En, gets in my lap. This used to irritate me because she would bump and nudge the hand holding the coffee cup and spill coffee on me, on the covers. I usually chased her off or tried to coax her to daddy’s side of the bed but this hardly ever worked.
And then my beloved dog passed Brin away, and I discovered that my irritation with the other furkids died, too.
I realized our time together is short. Every morning, coffee time is an irresistible invitation for Lille En. And I realized that changing my mindset completely altered what is otherwise the exact same experience. I am ready for the cat, and now I find that I welcome her. I give her attention and notice how beautiful she is and how soft her fur is. I listen to the sound of her purr. She sometimes wraps a leg around me like an embrace. I enjoy our time together.
This morning I realized it’s a meditation of sorts, not unlike the walking meditation that I like to do. In my cat meditation, I notice the cat, and I don’t think about anything else. Sometimes, Lille En goes to sleep, and I resume my coffee drinking. Sometimes, the coffee grows cold on the nightstand. Either way, I notice I am content.
In spite of our best efforts, sometimes, the dogs need to go out in the middle of the night. This task usually falls to my spouse because somehow, I sleep through the “gotta go” wake up calls.
The other night I learned after the fact that some dog (not naming names but he’s a small brindle dog) didn’t take care of all his business on the first outing, and there were TWO outings.
I did wake up after they came in the second time. I know, I know — I’m so helpful. Buddy, the previously referenced brindle, jumped on the bed and came up to the head of the bed to give me a little dog kiss.
Be still my heart.
This was such a Brin move. Brin was my heart dog, and I miss her so much. Brin would always come to my side of the bed after midnight outings to give me a little kiss before returning to her place at the foot of the bed. It was one of her most endearing habits, checking in on me like that.
And then Buddy did the same. It was a message from beyond: a reminder of the enduring power of love — a kiss from an angel.
I wrote 66 blog posts at the beginning last year and then stopped mid-May. Maybe you are wondering why. I didn’t mean to check out for so long but I looked at the date of my last post and knew why immediately.
This is Brin. Plott hound/Lab mix. My long-legged supermodel. My brindle of joy. She was 100% momma’s girl. This dog loved me with a single-minded devotion I have never seen before and may never see again.
Brin was a rescue dog, about six months old when we adopted her. She had THE ugliest puppy photo on PetFinder, seriously, it was bad. Brin had the dog version of the awkward adolescent photo. But I was looking for a dog that was good with cats and she was the dog that I could find. We met her foster mother in the Costco parking lot for a meet and greet. Yes, I joked that I got my dog at Costco. She was such a quiet dog. But cute, pretty brindle coat, sweet face. So we took her home and we learned a hell of a lot about being dog parents.
Brin found her bark on day two and was never a quiet dog after that. House training took much longer than it needed to because we stupidly thought she would go to the back door when she wanted to go outside. That’s not how she did it. When we finally realized what her “tell” was, it was like understanding a foreign language for the first time. She had been trying to tell us what she needed all along. *We* had to be trained!
It turned out that Brin was an extremely fearful dog at first. She was afraid of people, dogs, basketballs, skateboards, bikes, tile floors, the garage and many other weird things. We crate trained her, and she slept in her crate, but she still managed to pull things in her crate and destroy them. She chewed through several collars and leashes. She chewed the corner of our nicest wool rug. After an ill-considered decision to leave her in an X-pen when we went out, she ate our couch. We learned that she had serious separation anxiety and she had it all her life. We just learned to deal with it. After the couch incident, we decided she needed more exercise so we took her for walks. Or tried to. It was more like taking her for a drag. She started out scared of the world. It took several tries to get past our driveway and then several tries to get down the block and many weeks before we could get past the scary barky dogs at the end of the street.
Finally, we went to a dog training class. Brin wouldn’t jump in the car so I had to lift her. At class she was so afraid, the trainer put up a screen with a sheet so she couldn’t see the other people and their dogs. After one exhausting class with just her and I (doggy daddy was out of town), we came home and collapsed in a heap on the couch falling fast asleep wrapped up together. That night she slept with me in bed and that, as they say, was that. No more sleeping in the crate. She slept touching me every night for the rest of her days. We had to get bed frames with footboards, also known as a Brin backstop, or she would hog the bed.
Brin grew about 6 inches straight up in that first year. She became a willowy long-legged dog built for speed.
Oh, she really did not know a thing about cats. Much later we realized that she was a hunting dog mix with a high prey drive. She wanted to chase the cats. So that was another thing that we had to work on. She eventually learned that the cats were in charge.
Finally, we took her to daycare and that was a game changer for Brin. And we adopted Hopi, the black English lab with her own incredible story. Brin learned to enjoy the company of other dogs. Eventually, she became confident and social. She still needed reassurance from the staff but she thrived and blossomed. She no longer flattened herself to the ground at the sight of basketballs and barking dogs. She was the “good dog” at daycare, the one that the staff could put with new dogs. She really was darn near perfect. When we got our youngest dog, Buddy, Brin taught our clueless former stray how to play, how to act around other dogs–basically how to be a dog.
In mid-May last year Brin got sick. It was nothing major, more of a nagging thing. She was 12 years old and had always been a healthy solid dog. At her checkup the year before, the vet commented that she had the health of a much younger dog.
She had slowed down ever so slightly but she could still tear around the yard at top speed chasing her pipsqueak brother. But we went to the vet and a fecal test revealed giardia. Giardia is common in wet environments like the one we live in. We got meds and went home. She seemed better but not completely. And then she got fussy about eating, the dog who had inhaled her food for 12 years. An appetite stimulant helped and then it didn’t. At this point, a month of going back and forth to the vet had gone by. The vet finally suggested an ultrasound. She had the ultrasound on a Monday and the results came Tuesday. All of her organs looked wrong, cancer probably. On Wednesday she slipped away.
My heart felt like it had been transported outside of my body and trampled on the ground beside me. Brin was a dog that never let me out of her sight for more than a minute. I had the habit of getting up early and going into the living room to read and write on the couch. Brin was always about 30 seconds behind me, climbing up on the couch beside me, regarding me thoughtfully and then going back to sleep with her trademark dramatic sigh.
After she was gone, I went out into the living room and realized I was all alone for the first time in over a decade. I actually can’t do it anymore, read in the living room, it’s too hard. The emptiness is more than I can bear. A similar thing happened with my office, her bed by my desk lay empty. It was hard to work there for a long time. So the writing suffered. I suffered.
I felt guilty for a long time, thinking that there was something I could have, should have done to save her. But finally, I remembered that life isn’t like that. Sometimes those that we love get sick and die. No one lives forever. Dogs and cats are wonderful companions in life but their time here is short.
After Brin passed away, I spent more deliberate time with our other fur kids. I take more pictures. I stop and enjoy their cuteness. I let the cat take over my lap every morning even when I am trying to drink my coffee. Brin’s parting gift to me was a reminder that our time here is precious. We need to make the most of it every single day.
It’s been almost eight months. We can talk about Brin without crying. Mostly. We found slow feeder bowls for the dogs and talk about how it would have been so great for Brin. I bought brindle dog art from artists on ETSY. I think about how she smelled like Chex Mix. Her concerned look when she thought I was upset. How she beamed love at me. How she would remind me to stop working when I stayed up too late.
So here’s the post I just couldn’t write for a long, long time. The post about Brin. I cried several times but mostly it felt good to think about her and write about her. She was momma’s best girl and I loved her with all my heart.
Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend. — Melody Beattie
Today on Thanksgiving I am thankful for my family: my spouse, my furkids, my parents, my siblings, their spouses, my nieces and nephews, my in-laws, and my many aunts, uncles and cousins. I am very fortunate to be a person who loves their family and to have grown up in an environment that was loving, caring and fun. I enjoy having a shared history with my siblings. Our get-togethers — even when they are infrequent — are filled with laughter and good-natured ribbing. It’s such an incredible gift to be surrounded by so many amazing people and furry creatures. 🙂
I am also thankful for my many friends in (or formerly from) Maryland, Arizona, Colorado, Missouri, Kansas, Wisconsin, Nevada and beyond. You are all so amazing and have made my life better in so many ways.
Today I hope you can turn to your family of origin — or the family you created — and take them in your arms and let them know how much they mean to you.
I also try to remember love that is now a memory, even if it’s grief that carries it in the door. One of my friends posted this essay by John Pavlovitz today and it reminded me that love remains as powerful in our memories as it was in life, if we let it.
In the land of computer support, when all else fails, you reboot and see if that fixes the problem. As you spend more and more time doing support, you get to the reboot step sooner. Pretty soon you begin all troubleshooting by starting with a reboot.
My troubleshooting skills are a little rusty, but they are coming back. (I did boost the Wi-Fi signal to a TV in a little sitting room at the far end of my house with this handy little gadget. Ha! I still have it.)
So the reboot is in process. It’s taking a while, like those old Macs and PCs that I used to support. But I see now it’s the right thing to try. My reboot started back in August when I read this article in the New York Times. It featured engineering professor Barbara Oakley, who is one of the co-teachers of the most popular online learning course of all time, Learning How to Learn.
It was one of those right things at the right time. Intrigued, I signed up. Coursera allows a free audit of classes so you can try before you buy. I checked Professor Oakley’s book, A Mind For Numbers, out of the library and I threw myself into my second online class and my first MOOC (massively open online course). I was blown away by the experience and what I learned. In the course of the next month, I started rewiring my brain. I changed my approach from “I can’t do that” to “I can’t do that yet.”
I’ve also learned a lot about MOOCs by enrolling in them and it’s been eyeopening. I have turned into an online learning evangelist. Who knew? I think everyone should go to college, but what if you already have more degrees than you know what to do with? What if life or work makes a traditional classroom experience impossible? Or what if online learning is the wayfor you? I have three classes under my belt and I am enrolled in three more and I have learned a lot. I keep having these ah-ha moments to the point that I think there’s no end to the ah-ha moments.
In addition to throwing myself into learning the content of the courses, I find myself wanting to understand what works and what doesn’t in the world of online learning. I wanted to know why Learning How to Learn is so popular and to dissect why I found it to be so effective. (Professor Oakley also takes learners behind the scenes of the LHTL course in her book Mindshift and the companion online course of the same name.) I am particularly impressed that she “just did it” and learned whatever she needed to in order to make it happen. She used Google to figure out what video equipment to buy and how to setup and use the equipment and she used all her spare time to learn video editing. I am inspired by her grit and determination and have asked myself more than once, “What can I accomplish if I do the same?”
Reboot Virtual Book Club I started this online reading list for anyone who wants to reboot their life. I think it will grow based on my ever-growing “To Read” Google Doc that is rivaled only by my “Classes to take” Google Doc. I have a lot to learn.
How about you? Who are your virtual mentors? Let me know in the comments or send me an email.
I am not linear and I am not a black and white thinker. I have always loved the idea of the third option. In a world of binary choices, the third option always gives me hope that anything can be resolved, that we can find a place to understand — even appreciate — one another.
So, I got excited when I read There are three sides to every argument by William Ury. Ury is the co-founder of Harvard’s Program on Negotiation. The third side is a place of perspective — Ury calls it the balcony. It’s a place to go and remind ourselves what’s really important and what’s really at stake.
I met Scott when he and my sister were first dating. The first thing I learned about Scott is that he loved to fly and he wanted to be a pilot for a major airline. He had a day job in project management, but the airport was his second home. It was a long road to becoming captain; there were lots of charters and flying cargo planes. But I never doubted his resolve. Scott was a well-trained pilot and most recently he used that training as a check airman, ensuring the readiness of other pilots.
On his Facebook page, Scott’s message is to help others realize their dreams of flying. Scott made his dream come true and he was working to help others realize their dreams.
Last year Scott spent a lot of time helping me buy a new modem and router for my home network. If you have seen their setup, you know it looks a bit like it’s ready for takeoff. He never hesitated to help and he was unfailingly generous. He always, always picked up the tab. He also taught us to bring chocolates for the flight crew whenever we fly, a simple act of kindness and appreciation that will connect us to Scott every time that we fly.
Scott loved his family. It’s sometimes hard to see in the day to day how much someone loves you, but when my husband Robert and I spent time with Scott he talked about flying and family. He loved Stacey and Paul, his parents Flo and Paul, his extended family and of course, Theresa. He cared about his friends and coworkers. He worried about you and he wanted you all to be well and happy. He loved you all so very much.
We are all connected. John Donne said, “No man is an island, entire of itself: any man’s death diminishes me, because I am involved in mankind, and therefore never send to know for whom the bells tolls; it tolls for thee.” Sometimes we forget that until a link of the chain is lost and we move closer together again and reconnect the chain. We hold tight to the loves we have and those we have lost.
So, hold each other close. Don’t wait to say I love you. Don’t postpone joy. Dream big and fly high. It’s always good to observe the fasten seat belt sign and open the overhead bins carefully. Everything shifts during flight, sometimes even our belief in what is possible.
John Gillespie Magee, a WWII pilot wrote the sonnet High Flight to describe the unbelievable freedom and beauty of flight.
Oh! I have slipped the surly bonds of Earth
And danced the skies on laughter-silvered wings;
Sunward I’ve climbed, and joined the tumbling mirth
Of sun-split clouds, — and done a hundred things
You have not dreamed of — wheeled and soared and swung
High in the sunlit silence. Hov’ring there,
I’ve chased the shouting wind along, and flung
My eager craft through footless halls of air. . . .
Up, up the long, delirious burning blue
I’ve topped the wind-swept heights with easy grace
Where never lark, or ever eagle flew —
And, while with silent, lifting mind I’ve trod
The high untrespassed sanctity of space,
Put out my hand, and touched the face of God.
Scott, we have told endless stories about you. We marveled at the head of hair that you used to have, we talked about the little things that made you, you—and made you special to us. You will be missed.
![Southwest's Maryland plane [Photo by Robert Haight]](https://i0.wp.com/jakekupiec.net/wp-content/uploads/2017/04/image2-1.jpg?resize=1200%2C900)