Shiva Jukes Their Back Out

A jack of all trades is a master of none, though oftentimes better than a master of one. That’s a caregiver, in a nutshell. Except a caregiver is usually limited to two arms, the righty and the lefty, the dexter and the sinister, which limits how many trades they can exercise at once. Many have 10 articulating fingers, true, and brains that span in a million directions, though all of their capabilities and selflessness is nailed down to a single austere plane, where a pair of clock hands turn on a perpetual axis of time: Everything is the slave of time.

That is why the Hindu God Shiva should be the patron of caregivers. With multiple arms, each with their own purpose, Shiva is the Swiss Army knife of Hindu deities. I don’t want to make light of it, because this is someone’s deity, but I’ve long had a thing for Shiva, ever since I saw him through a shop window on Devon Avenue on the far north side of Chicago, where you can find a mile-long stretch of Indian and South Asian stores and restaurants. One evening, I toddled out of one of them, chewing aromatic fennel seeds, still blissed out from the curry. Have you ever had a spicy curry or a pepper dish that makes you levitate out of your seat? So I’m walking off this incredible meal, weaving between the cars rushing by, because, as Dennis Hopper would say, ‘That cat’s on the curry, man.’

In a glass showcase I spotted a colorful graphic on a sheet of 8.5” by 11”. There was Shiva, red and brightly adorned, with arms fanned out like peacock feathers and holding an array of implements — a sword, a pike, a lantern, a little dancing Pentecostal-type flame, an eye that opened in the palm of a hand — and in another of his hands he holds a blue guy’s head. (A quick search tells me the dripping head belongs to Brahma, who I thought was the head man — no pun intended! He doesn’t look happy about the situation. I’ll read more about this later, but from the grizzly scene and body language, it looks like a domestic.)

What was most beguiling was that Shiva does this all with such a placid, lovely face. It was very matter-of-fact, like Shiva was hanging out the wash. I liked that aspect of him, that he was knocking out some serious work but it was just business as usual, and he was doing it in style, with fine threads and fine face — in fact I just found out I’d accidentally been misgendering him for decades: Sorry, Shiva. So I went in and bought it, and hung it on the wall of my new apartment. I was pretty healthy then.

After a couple of years of those two hands turning on their axis: not so much. The apartment was no longer very tidy. I’m sure you could find dust, plenty of it, and a sinkful of pots and pans because I’d lost the energy to do anything about. My transmission was stuck in multiple sclerosis overdrive, and I did the bare minimum to get from day to day: Basically using one set of dishes and silverware, stretching out the laundry for as long as I could, like that. The handrailing leading to my second-story entrance wobbled now because I leaned on it so much. Shiva himself had fallen on the floor a couple of times and been re-tacked up, but still he had on that same groovy face, and I needed to see that.

There was a couch there in that small living room, a sleeper sofa that was my Oma’s. Man, was it heavy to carry upstairs into the apartment. Often I’d pitch face-first into that couch, still in my leather jacket and clothes, and shoes scuffed on the one side where I dragged my foot. I would dive into that couch and zonk out for hours. If I woke in the middle of the night, the glow of the streetlight outside would stream onto my wall, striped by the half-opened window blinds, and illuminated Shiva above me, coolly and calmly transacting her 24-hour killing spree up on my wall. You can count on some things: death, taxes, Shiva. I looked up and thought, Shiva, come save me. Before I zonked back to sleep.

One of the friends I shared great times with on Devon was a girl I was dating, someday to be my wife.

Even before we were married, as we grew more serious — as my condition grew serious — I watched her grow many extra arms, new ones daily, right before my very eyes, and become a caregiver, doing more things than a person with two arms should rightly be tasked to do. We don’t have kids together, and this was before our vows, before our engagement, when she had no skin in the game. But there was that level of devotion from her, an unfolding a mystery which I didn’t understand. This little Shiva is tough, smart and resourceful, but it’s an even match: multiple arms versus multiple sclerosis. She’s 5-6, I’m 6-2. She’s 140 pounds, I’m 172 — you do the math. So far she hasn’t taken off my head, YET.

So, plot twist, what happens when Shiva gets hurt? When her array of arms is going great guns, but her back weakens and becomes injured? When the daily tasks of dozens of hands go unmet, and pile up? And far worse, when her calm and pleasing visage gets twisted in pain and frustration? That has been the story of our summer. We’ve gotten through this before, and we’ll do it now. I’ve seen this movie before, and Shiva does rise again. She’s already on her way back.

Meanwhile the two hands keep spinning, faster and faster on their axis.

Newly diagnosed "can truly be optimistic about their prospects for a life free from disability"

Years ago I was skeptical of all articles like the one I'm highlighting below. I'd see them regularly -- 'The New Drug on the Way Could Be a Game-Changer' or 'A Cure May Be In Sight,' stuff like that -- I mean, how many times can you hear them cry wolf? Particularly when you have primary progressive and there were no treatments at all. But now there is so much going on, and the post-pandemic science has moved the sticks so much. … The landscape feels much different to me now. It doesn't smell like BS anymore. (How's that for unscientific?) Even if there still isn't a treatment for me. Here's to someday. --

Dr. Stephen Hauser, who has been working on MS for decades, is hopeful that the world is on the cusp of a new era in MS. “The battle is not yet won, but all of the pieces are in place to soon reach the finish line — a cure for MS. … I think we can, in the next few years, completely suppress the disease in most people, if the proverbial tea leaves continue to point in the direction that they do today,” he said. And a cure for MS could be close behind.

And in the last decade, UCSF researchers have made incredible advances that could, one day, reverse MS symptoms or even treat the disease before it begins.

Today, clinical studies like those being conducted by the UCSF Weill Institute for Neurosciences, which Hauser directs, are investigating new ways to aggressively treat MS sooner with existing medications and new, more powerful versions. They are also concentrating on myelin repair. The Institute is applying lessons learned from MS to develop treatments for degenerative brain disorders like Alzheimer’s and Parkinson’s, as well as ALS (amyotrophic lateral sclerosis).

Excerpts from full article: "A Cure for Multiple Sclerosis? Scientists Say Within Our Lifetime."

Make your plan to vote! Sign up for tomorrow's MS Society voting webinar.

For health care and insurance, disability policy and medical research, this will be a big election. Whoever you plan to vote for, it's important to know the "how" — because every state has different voting and registration laws.

On Tues., Sept. 17 at 2 PM ET/ 1 PM CT/ Noon MT / 11 AM PT, voting expert Michelle Bishop of the National Disability Rights Network gives you info and answers questions to help you form your own voting plan. Sign up and make sure you have your say!

https://p2a.co/21fsGql

Getting Mouthy: New Device Brings Access Closer Than Ever

“There's a lot of fun things I'm doing nowadays … that I couldn't do before,” says , attorney and quadriplegic Josh Basile. Using a new device called the MouthPad, he's playing game apps with his son that were too fast for him before, and racing bots through the house with his daughter “with precision accuracy,” he says. 

MouthPad by San Francisco-based tech firm Augmental fits in the mouth like a retainer and helps you control devices with your tongue. For Basile, it works in quiet settings such as meetings and conferences, and in cars or airplanes that are often too loud to use voice recognition. Basile’s fiancée is a big fan too. “She [would] hear me say on YouTube, ‘Swipe up, swipe up’ for 30 minutes straight, and now … she doesn't have to hear that, … especially at night in bed,” he says.

Read the New Mobility story on how this revolutionary tech is helping Josh and others with disabilities — and will soon have uses even beyond those without disabilities. https://newmobility.com/mouthsticks-and-beyond/

“Help! I Need a [Wheelchair Van, Wheelchair, Rollator, Shower Bench, etc.]: A Quick and Dirty Guide to Getting Used Equipment

In the parking lot of the home improvement store, a man pulled next to us and introduced himself, apologizing profusely. He saw us shopping for flowers in the store and didn't want to bother us, but he was desperate. His father had suffered a #stroke and they were learning how to take care of him but had no easy way to get him to and from his medical appointments. How could they find an affordable van with a lift, like ours?



Needs like this often come out of the blue. With your hands full trying to cope with a medical situation, you don't have time to fool around with financing and insurance. But here are some ideas for you based on years of dealing with #

MultipleSclerosis and some pretty tight situations along the way. It will still take some looking up numbers and maybe a lot of calling around on your part. Also realize that I haven't personally used most of the places listed below, so please be careful and do your homework about any buyers and sellers you deal with. But I and others have found what we needed — in the nick of time — at these places, so good luck and here goes:

— Before we start, check if your doctors and medical professionals offer transport services to your appointments, and look into Uber WAV accessible ride-shares. These are hit-or-miss but probably beats yelling out tons of money. Paratransit services can be good but they take a long time to qualify and use.

— Starting with big-ticket items first, you'll be surprised by how many used wheelchair-accessible vans you find on Facebook Marketplace. Also eBay, but with any vehicle you have to be careful about vehicle history: Some years ago, there were a lot of very good deals there, but it turned out that some were reconditioned after flood damage. Do your homework. Finally, here are tips for buying used wheelchair vans, with links: newmobility.com/tips-for-buying-a-used-wheelchair-van

— For other equipment, check out eBay, and tell all of your family and friends to scout for wheelchairs and scooters at local goodwill, resale shops and garage sales.

— Search websites like Facebook Marketplace, Craigslist, Quipit (goquipit.com) and the private Facebook group Disability Related Gently Used Equipment for Sale (tinyurl.com/ypmc2bkc).

— Try contacting your local Center for Independent Living, which is a clearinghouse for #disability-related resources and can probably point you in the right direction.

— Look up your local chapter of United Spinal Association, which has a lot of online resources local branches supporting people with mostly mobility-#disabilities (legs, arms and such), and the local groups probably keep listings of used equipment available in your area.

— Find your local Easterseals, which often has contacts to find equipment, along with caring, knowledgeable people. Check out other nonprofits as well, like United #CerebralPalsy and Habitat for Humanity. As one of the Easterseals people told me, their funds are limited and often they're winging it, but they'll work on situations until they can help someone in need.

— Look up your state's assistive-technology agency, which may keep listings for used adaptive equipment at a savings.

— Look up used equipment at New Mobility magazine, the member publication of United Spinal. These people have been at it a long time and I guarantee you'll find articles about this or any topic related to assistive equipment and anything else you may be struggling with. For example, check out newmobility.com/what-to-do-with-your-used-wheelchair for leads to donate or find equipment.

— If you have MS, contact the MS Navigators at 800-344-4867 or contactusnmss@nmss.org. Tell the Navigator your story and ask for ideas and resources. The Navigators are trained in research and all things MS.

— Off-topic but still important: Mobility problems often go hand-in-hand with social isolation. If you are feeling alone and looking for friends and support, look to online communities like MS Connections on The Mighty (themighty.com/groups/multiplesclerosisconnections), the MS Society community group on Facebook (facebook.com/groups/nationalmssocietycommunity), MS World (msworld.org/forum), or sign up to speak to others with MS at the MS Friends program (800-344-4867 or contactusnmss@nmss.org). Hang in there, because there's community out here waiting to hear from you.

— If you have #ALS, the ALS Foundation has a durable medical equipment loan program that offers assistive items like wheelchairs, shower chairs and cushions. “We have never had to turn away anyone with ALS for any requested DME. They can come down to our chapter, and we work with a nurse or ATP to [properly fit them],” Amy Sugimodo of the Sacramento Chapter ALS Association told New Mobility. See als.org.

— The Triumph Foundation is based in Southern California but assists people with spinal cord injuries across the nation. Affiliated with United Spinal, Move United, and the Los Angeles Paralympic Sport Club, the organization takes in, services and distributes donated equipment in California, but also matches equipment for people in other states — and even gives grants for fresh batteries for power chairs. More info at triumph-foundation.org.

If you know of any others, or have more info about what's listed here, please contact me to update when I repost this next. For questions and comments, message @themightyjohn or email wheelieoutthere@gmail.com. 

A Brush With Greatness: A Farewell to Brooke Ellison

The best part of what I do is all of the diverse people I get to meet. Everyone I meet is better than me in something or another, and has something to teach me. This month I met a great one who taught me a lot.

A few weeks ago we lost Brooke Ellison, 45, a disability advocate who was a professor at Stony Brook University and VP of technology and innovation for United Spinal Association. She led an extraordinary life and I encourage you to watch this “TODAY” show profile. Along with her prominent career, she wrote a couple of books, one of which was made into a movie by Christopher Reeve; ran for the New York State Senate; and was a professional speaker and one of the first quadriplegics to graduate from Harvard University — all after being hit by a car and paralyzed from the neck down at age 11. Here is Brooke Ellison’s TED Talk: The Pillars of Hope.

Ellison and her mother, Jean, who aided her throughout the undergrad years.

I had the honor of speaking to her just before she passed. We talked for an interview on a few tech-related accessibility topics, subjects she had been working on her whole life. We had difficulty scheduling it, but I knew she was a busy person and I’m not reading anything more into it. However, once we finally got down to it, she poured out the information. In her mind was coiled a nonstop string of knowledge that unspooled into my ears. My mouthstick was throwing sparks trying to keep up on my keyboard. This is why I record interviews. It’s not just to get the quotes right — it is being able to unravel all of the points and concepts skipping past my baby-smooth brain. Tape, don’t fail me now!

Birds of a feather.

We gabbed almost 17 minutes, transferring a ton of info and sharing a few laughs. That was the best thing, that we shared a genuine rapport. We both had high-level disabilities, and I could tell she appreciated my questions that could only come from someone actually living the life. I was truly gleeful, not only to have gleaned from her exactly the info I needed to cap off my story, but also to have had a real conversation with such an authority on things that make my and many other’s lives much better.

One thing we really got into was the MouthPad, a revolutionary new device that is worn like a retainer in the mouth, to control computers, phones and other Bluetooth devices. It is a touchpad for your tongue that is worn on the palate of the mouth.

MouthPad.

The MouthPad will have uses for people from all walks of life, but in the testing phases the developer, San Francisco-based Augmental, has included many people with disabilities, including Ellison. She was the perfect person to speak to on the MouthPad too, because for years she used a forerunner of the MouthPad called the Tongue Touch Keypad.

TTK.

Developed some 15 years ago, the TTK was also worn in the mouth and had buttons like a remote control that could be pressed by tongue. Ellison used it to control her wheelchair, lights and environmental controls. However, the developer went out of business in 2011 and the aging device was “on its last legs,” she said. With time, the infrared TTK grew more and more out-of-date in a Bluetooth-heavy era.

“I felt in a lot of ways that technology was kind of passing [me] by,” she said. “My cell phone was basically like a paperweight.” How I could relate to that last comment! When I finally found a cell device I could use, it was 2022. I felt like Rip Van Cellphone.

Ellison was very excited about the MouthPad, which she thought will dramatically expand disability access across many different areas in society. “The promise is so much greater and the company that developed this technology is thinking much more broadly than the TTK ever did. … I’m really excited to see how this technology is going to continue to be integrated into many different aspects of our lives. I don’t think the limit is going to be computers (or) handheld devices,” she said. “I’m really excited to see how everything unfolds.” Ellison contributed for years on the development of the MouthPad with Augmental, and finally got a device of her own only a week before our interview. No wonder she was excited. With her unique history, she could experience the progress that’s been made on the tip of her tongue.

Two days later came word from my editor that she had passed. He and I and the entire United Spinal community were shocked. If she was ailing in some way when I talked to her, I had no idea and she gave no indication. I felt sad all day long that I didn’t get to know her better, and a lot of sympathy for those lucky enough to know her. But looking back, I’m grateful she granted me that opportunity to talk together. It was a brush with greatness. It's natural, then, to dedicate my story to Brooke. It will appear in New Mobility magazine this summer.

Old River Towns: Cahokia, Alton and the National Great Rivers Museum

Cahokia Mounds

30 Ramey Street, Collinsville, IL. 618-346-5160. (Off off I-55, north of St. Louis, in SE Illinois.)

https://dnrhistoric.illinois.gov/experience/sites/site.cahokia-mounds.html

More info: https://tinyurl.com/4wkaszzh

Gigantic earthen mounds along the Mississippi River are the site of a 1,000-year-old Native American city, once the largest in North America. It's little known but important, and recognized as not only a state historic site but a federal one as well, plus a UNESCO World Heritage site. So what is it, exactly? There are more than 60 earthen mounds spread over dozens of acres. The largest, named Munks Mound for a group of Trappist monks who once lived nearby, reminds me a little of the once jungle-covered temples of the Mayans, and you can climb it. There are some 170 steps, and Mab was all over that.

We had just started in the museum when she started getting antsy and wanted to do it: the call of the stairs. I wanted to go watch but she insisted I stay in the air conditioning of the museum, then she would come back for me and climb it again. (Nutter.) Well, I poked around a couple of exhibits but drifted back to the window. Of course, it being her, she was wearing a radioactive-pink shirt that showed up like a beacon from way, way off in the distance. She hadn't climbed in a while, but still scaled the mound like a shot. This largest ceremonial mound is shaped like a gigantic bird with outspread wings, with the staircase climbing up the tail and back and finally leading to the head which is the lookout. She got some cool footage on top and came back down again like a champ. Viva Mab!

Monks Mound in the distance.

Monks Mound, over the lumpy guy's shoulder.

Climbing Monks, Mabs-eye view.

               From Wednesday through Sunday there are walking tours at 10 and 1, leading over paved trails that are smooth and very accessible. You must reserve a place by calling 618-346-5160. Ours led by a volunteer who was an archaeology student from Southern Illinois University in Edwardsville. An academic or docent guide can really unlock and fill in background to what you’re seeing in front of you, so we were happy. For instance, she clued us in on what were the remains of a Stonehenge-like ring of stones that served as a calendar or sundial, and you could hear the ahhs from our group. There is also an augmented reality app for self-guided tours at your own pace.

               Nice museum with life-size displays including a walk-through the village. Pushbutton interactive displays of the city and nearby islands in the river, which were a real thing (still are). Tons of relics, tools, jewelry.

        Cahokia RV Parque

4060 Mississippi Ave., Cahokia, IL, 618-332-7700, Cahokiarvparque@gmail.com, cahokiarvparque.com

            This campground is a mile from the Mississippi, three miles from I-55 and about 10 miles from Cahokia Mounds State Historic Site. You can see some of the St. Louis skyline across the river. Mass transit into the city is available nearby, reporting to the website. Its location is a strong point, along with customer service. Two women in the office took special care and rearranged other spaces to get us into the best space for us and my wheelchair. Hands-on and showed us right into our space. The sites are back-in only unless you're lucky and find two unoccupied spaces side-by-side, but they arranged for a pull-through for us — on Labor Day! There’s a relaxed young-family atmosphere here, with a lot of dads playing with their kids, friendly folks out walking, and little rascals having fun at the playground a couple of spaces down. Nobody loud and rude or rambunctious.

               Site number 23 needs slight leveling. Concrete pad for the van with 7 feet of loading clearance for the wheelchair. The RV is parked on gravel. Thick, green grass on the sides has some serious hidden divots where I needed Mab’s help to get out of them. But this section of the park is like that, much of it needing work or under renovation. It’s a developing campground. There are dozens of sites, some with concrete pads, some gravel, some grass. Ours was a combination of the three. Thirty- and 50-amp electricity available. Water. No sewer at our site, but next-door has it. Verizon and T-Mobile working fine.

               Laundry room, small pool, Wi-Fi available (not guaranteed, says the website), propane station during business hours Monday through Saturday 9-6, Sunday 10 to 4. $45 per night.

 

             National Great Rivers Museum

    1 Locks and Dam Way, Alton, IL. 618-462-6979. Website: mtrf.org. Open 9-5 daily.

Great Rivers Museum, entrance.

The Great Rivers Museum stands near the confluence of the Mississippi, Missouri and Illinois rivers. The highlight here is a guided tour of the river lock on the site, a massive piece of infrastructure, hundreds of thousands of tons of concrete scanning the Mississippi River since 1990. The Army Corps of Engineers keeps the upper Mississippi 9 feet deep, to within 1 inch, and they do it through a series of 27 locks like this one. The locks are large enough to handle 200-foot barges passing through. The tour was accessible but we were only on the top of the thing: In normal times without COVID-19 they take you inside the workings, which I think I heard is accessible too but be sure to call first. It's nowhere on the scale of Hoover Dam but it's awesome to be on it, controlling the third largest river in the world.

Lock tour.

Infrastructure porn: a lock that riverboats pass through.

Same lock — I wish I got a picture of the barge soon to come.

Same lock: In the water are some of the crazy items that collect, like a bathtub (true story).

               The museum indoors is pretty good for showing the wildlife, history and commerce of the river. There are a couple of short movies and a simulator for the bridge of a river boat. The best thing was that a barge came through the locks while we were there, so we could watch it going through with all of our new tour knowledge.

               Nearby Alton is an old, pretty river town with sloped cobblestone streets and historic shops and buildings. The Clark Bridge, with its tall, gently curving white cables, spans the Mississippi and complements the St. Louis skyline visible about 20 miles away. The bridge was built in 1994, a year after the historic flood. Mab and I saw that flood up close, and as we crossed the river the people of Alton were waging a heroic struggle to save their bridge. Apparently they lost, but the Clark Bridge, stretching across the sparkling waters like a graceful wing, is a beautiful replacement and tribute to the spirit of the town.

               Alton’s small-town community feel is on display in a life-sized statue of one of its favorite sons. Robert Ludlow was the tallest man in the world, ever, as his 8-foot-10-inch statue shows. There is also a bronze replica of his armchair. Folks say my wheelchair is big, but it's nothing next to this. The statue stands in the square next to Southern Illinois University – Edwardsville's Dental College, formerly a teachers college and was Ludlow’s alma mater. Still standing are a few of the old buildings, and a marker about the founding of the college. Across the street is the Alton Historic Museum. The marker about Ludlow said he was 54 when he died in 1940. He never stopped growing, and was in constant pain. Still he remained active in community groups and was described as amiable, definitely sounding like stoic. I found that touching.

SIU-Edwardsville Dental campus, Ludlow statue in the distance.

Bronze replica of Ludlow's armchair.

Historic building on campus.

Historic building nearby.

               Not far away stands the monument to the martyred newspaper publisher Elijah Lovejoy, who was killed by a white mob in 1837 for printing in favor of abolishing slavery. The monument is a column topped with a winged figure. The base of the column is guarded by two other winged figures. It is striking. Unfortunately it is also located in the old town cemetery, which is up some stairs and does not look to be accessible, so we had to admire it from the street, cranking our heads inside the car. A courageous man, who would be tearing it up if he were around today — and might even get himself killed again.

At the end of a beautiful day in a pretty river town, all you need are a couple of peanut butter and jelly sandwiches in the City Hall parking lot overlooking the bridge and the Argosy casino boat, while you watch the river endlessly flow. And of course Mab found stairs, 53 of them. Peanut butter stairclimbing powers.

               We ended the afternoon by driving a small stretch of the Great River Road. Watching the gigantic river so nearby and flowing under the late afternoon sun was the perfect capper for the day. The Great River Road is awesome every time drive it.