Be Like Boye

This has been a hard one to post. I wrote most of it a couple weeks ago, but for some reason, have been putting off posting it.

I’m writing this tribute to my friend we lost recently, MsBoye Nagle. When we hear warnings that death can come for us at any time, this is it. I’m sorting my feelings by writing.

It is Christmas Eve, when we remember our shades, our ghosts, and now she is one of them — who will always be one of the special, joyful ones. Poet, actor, teacher, coach, mentor, MC, activist, Brahma, cheerleader, friend. She’s still eerily near the top of my email inbox. Most of all I hate writing and reading this because I’m talking about her in the third-person, like she’s a past event, like she’s a stone monument already, when I still think of her in the second-person: MsBoye, when are we finally hanging out? When you have time? I’m sorry I made you wait. I was busy doing stupid things. When are we going to work together again?

I, in the first-person, feel like a fool that she had to leave for me to say these things. Ineffectual words, like throwing water against a wall. Is this all posturing, or am I going to do better?

I have to explain that I’ve only ever known her in two dimensions, on my computer screen. I joined Art Spark Texas’ disability-centered Speaking Advocates program, where she was teacher, as a lockdown thing to do. We spent more time together working on the True Tales of Disability Advocates podcast, and over the years at the Lion & Pirate Open Mics, but it was always remotely. This was the year we were going to meet, when we were going to hang out. You’d think someone with a progressive illness like me would have a better respect for time: As the sands fill the hourglass, they’re also burying more and more of my body.  But at this instant, if I could pull one of my arms free, I’d shake a fist not at fate, not at the doctors, but at myself. Maybe I’m having my Ebenezer Scrooge-morning-after moment. Maybe MsBoye is teaching me something still.

Always I marveled at her bottomless well of poetry. I marveled whenever I got to hear her recite it. She was wonderful. 

I learned a lot from her about embracing others, and embracing myself. That my story is good enough to tell, so to let it spill — just set a timer and write, write, dash, race to the end. She was always quick with a compliment and encouragement, and hearing her say time and again I have a British sense of humor, made me feel a kinship with her.

I’m certain she made everyone in this room feel just as special. Some possess that rare gift, and others like me are just lucky to fall in with them.

She was one of a kind, and, as our friend Birdman said at her memorial, completely genuine. It was moving to hear how she enriched and supported so many with her many talents and interests. She lived her life thoroughly. It’s mind-boggling when someone with energy like that simply ceases to be. But does she really? Because she is playing out in each of us who knew her – that’s the kind of impact she had, demonstrating an impact that we all could have.

Our friend Thom Moon compared her to a long line of the great poets through the ages. She belongs in that pantheon. For her work, for her ways, for her spirit. According to Thom, the great poet-spirit was like an undying flame that gets passed on through time — that she carried the same flame as Homer, Shakespeare, Wordsworth (who our friend Eric Clow read from), Byron, Nikki Giovanni, Andrei Codrescu and others. So, to Thom, she’s always with us, and if that’s the case, then I get a chance to say, “Heartfelt thanks to you, my friend. I miss you.”

 

Who Gives a Care?: Plans To Help the Sandwich Generation and the Growing Care Crisis

Don’t you get nervous talking to attorneys? I do, and it’s been a nervous time for me lately.

I’ve been calling lawyers to ask about opening a trust — no, I don’t really know what that is either, except I keep reading advice that I should look into one, like, right now. You see, with advanced and progressing MS, and with my wife and I both being seniors, we have a good-enough chance of needing care down the line. While full-time home care can cost nearly $69,000 a year (CNN) and a nursing facility at least $104,000 yearly (KFF), our home and life’s savings won’t last long. To get any assistance, we’d have to qualify for Medicaid, which requires selling off the home from under my wife. My nervousness talking to attorneys is a small price to pay.

 francescoridolfi.com | Credit: Rido - stock.adobe.com

We’re not alone. Seventy percent of us who live to be seniors will need care, according to the Urban Institute. More than 105 million in the “sandwich generation” are caregivers of some sort, a number that has more than doubled in the last decade (Rand Corporation). More than 14 million are caring for service members or veterans. Two-thirds of them have to balance this with a job, and often they take a hit in income by having to go to part-time work or taking time off (AARP).

Seventy percent of seniors. One hundred four million people. Hm, think there’s a constituency there? Seniors just happen to be the most reliable voters, too.

Citing her own experiences caring for her late mother battling cancer, Vice Pres. Kamala Harris has proposed a Medicare at Home program, which would expand Medicare to help with home care costs for seniors and people with disabilities who might earn too much to qualify for Medicaid but cannot afford long-term care. She also wants to cap child care costs at 7% of income, pass paid family and medical leave, and raise wages for care workers. (The last one’s critical, because there is already a severe shortage of care workers due to the poor pay.) She proposes paying for this with savings from negotiating more prescription drug prices down with pharmaceutical makers, which has already been successful with a handful of drugs under 2022’s Inflation Reduction Act.

This follows Pres. Biden’s ambitious 2021 proposal to invest $400 billion in care services for children, seniors and people with disabilities. That part of the Build Back Better bill got shot down in haggling with Congress, but it was a bold target to set. Now the idea out there.

The need is great: I have spoken to an at-home care coordinator in Pennsylvania who says people in her area are stuck in nursing homes not because they need intensive care, but because there are no home workers available so that they can live a place of their own in the community. Also I’ve talked to the head of a statewide network of care workers in Austin, Texas, who recited a list of care workers she knows who, out of love, continue to work beyond what their aging bodies can handle, because there are no younger workers to take their place in caring for their clients. According to Nicole Jorwic, who has long watched the issue as head of advocacy at nonprofit Caring Across Generations in Washington, D.C., "It doesn't matter if you're in Portland or if you're in central Illinois, … it is a nationwide problem.” Plus, she noted, the population is aging and the need for care will only increase.

This weekend Donald Trump proposed a tax credit be given to family caregivers. Advocates like Jorwic are skeptical without details or ideas to build up the needed care “infrastructure,” i.e., creating more care workers and supports. But the point is that the care issue is on everyone’s radar now, and that’s good for us.

But for now, I pick up the phone, and prepare to get nervous again. Go vote and let them know we’re out here, people.

Looking for Dr. Right (Cause the difference between a good doctor and the right doctor is huge.)

Imagine you and your roommates are desperate for a bite to eat, and at long last some carts roll in. Everyone gets a covered dish, all but you — before you can even ask, somebody says, “Oh no, that’s not for you. Wait until the next round of carts.” The dishes are uncovered, and there’s some grousing but everyone chows down, right in front of you. Then another round of carts shows up and the roommates get a choice to change over to those meals. All but you again, because “Oh no, that’s not for you either. Wait until the next round.” On and on this goes, for years.

Let’s hear it from the other primary progressive MSers with plate-envy. Most cases of MS are diagnosed as remitting-relapsing, with distinct attacks of symptoms, and for whatever reason, most of the medicines treat that variant. In comparison, those with primary progressive have gone with empty plates until recent years and a treatment approved for PPMS, Ocrevus — but I’ll get to that later.

Johnny, tell him about our exciting parting gifts.

Over my decades with MS, I’ve been on a couple of disease-modifying treatments, with little results. As my condition progressed, my treatment screeched to a standstill. Though my chief neurologist in those years was a leader in the field, I received little medical support or encouragement, other than the occasional round of physical therapy I requested. Pretty much all of the treatments that came out after Betaseron did in 1993 were named “Oh no, that’s not for you.” That’s all I was hearing, so that became the attitude that seeped in and I settled into a kind of long-term funk. If my expectations were low, my morale and self-esteem were probably even lower.

Then a crazy thing happened on Reddit, of all places. There was a new treatment out, Ocrevus, and someone had found a doctor across town who was one of the drug’s researchers. The Redditer was eager to try the treatment because she felt kicked around by the disease and the medical establishment since her diagnosis eight years ago. Welp, eight years? What about 25 years, which was how long I’d been struggling? Frankly I was getting sick and tired of hearing people complaining about MS — which of course they’re going to complain because they’re frightened and frustrated — but for that one moment I’m thinking, ‘My case is so much worse than almost every case I’ve encountered.’ And here I was, getting passed up yet again, this time by someone who has had the diagnosis less than half as long as me. What about me? What am I to the medical establishment?

I was fed up and tired of eating from everybody else’s dog dish. From the info online, I found a research nurse who worked with this doctor and I contacted her, hoping she wouldn’t hang up on me. No, instead she helped me schedule with her doctor! The clouds parted and the angels sang and my jaw dropped to the floor so hard I had to winch it back into place. I floated around for the rest of the day, singing and whistling with the bluebirds like I was Snow White or something (but sounding more like Dopey).

Bringing it.

I went to the appointment to ask for Ocrevus, which was being promoted for PPMS, and the answer I got was “Oh no, that’s not for you”: It turned out that Ocrevus carried a risk of respiratory infection that I’m ill-prepared to fight off. So why was I so happy, ready to hang out with muh bluebirds when I left the office?

The difference was that the new doctor and nurse had a plan, an entire anti-MS battle map. This was an appointment that changed my life forever. My MS would not get treated directly, but there was a cascade of MS side effects that we would be taking on, with a whole team of medical pros. A new rehab doctor would be managing the great amount of spasticity/muscle tone causing me stiffness and fatigue, and hardship (even hazards) for my wife as my caregiver. A new pain surgeon would be giving me a baclofen pump implant to address spasticity more effectively than any oral tablets could. A new urologist would give me a suprapubic catheter, to manage ever trickier bladder issues. A new physiatrist would eventually give me Botox injections to better control my muscles and fatigue. New physical and occupational therapists would be there to help me learn these new ropes.

It was a lot of appointments, for sure, but as long as my insurance held steady, I didn’t feel put out or overwhelmed. Rather, I was energized: I went from nothing-going-on, to a whole bunch of stuff going on, for my wife and me both. Each of my new team was in touch with the others, so I felt supported like never before. This was the opposite of “that’s not for you.” There were tangible improvements happening in our lives.

My new rehab doctor, whom I hadn’t even met, told me over the speakerphone, “We’re going to give you a new body.” My wife beside me had tears running down her face. Something was happening — for me, for us — at last. We had a medical team to consult with, who had our backs and listened. Seriously it felt like the doctor and nurse possessed a golden key that unlocked the great puzzle that was my world.

Since then, I’ve added and made changes to my team. This felt like such an awakening in my life, like I had come back from the dead. Starting here, I gained a lot of momentum in life. The only other thing that compares is finding my friend Dave Perez and the Skydiving for MS event he offered in my area. Both moments felt like I was shaking off a lot of rust and getting off to a running start again in life. Life can pass you by quick, so be careful of remaining still for too long.

You best heed, whippersnapper.

Finding my health care team and improving on it over the years was a godsend. It’s something I recommend to everyone. Usually it’s difficult to find those doctors who take time with you and listen and function as collaborators and team partners, but once you find them you’ll see how worthwhile it is.

Mark Twain said “the difference between the almost-right word and the right word is … the difference between the lightning bug and the lightning.” Here’s wishing you lightning and inspiration in your upcoming appointments: I want you to hear, “Oh yes, I’ve got ideas for you.” There is a huge difference between a good doctor and the right doctor, just like there’s a huge difference between “oh no, that’s not for you” and an appointment that will change your life.

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/