Strong Inside of a Vulnerable Body

By Maria Cerio

Written for Rare Disease Day 2021

In 2021, I ski, I bike, I trip, I fall, I laugh, I cry, I walk, I roll. I have good days and less than good days. I hug and hold tightly. I am full. I focus on my steadfast, unmatched support team for whom I am infinitely grateful, whose lives are also impacted. Today, with every fiber of my being, I can say it is a happy Rare Disease Day.

In 2020, my employer treated me differently on the basis of my disability.

In 2019, I ran a road race and for the first time, a boy thought I was beautiful in my wheelchair.

In 2018, children imitated my gait as a game and college boys and police officers mistook my walking for a drunken stumble.

This same year, I united with my first wheelchair since I was three years old. It would be my ticket to freedom — allowing me to fully participate in life.

I would also find fullness in a community of disability and rare disease warriors, but still struggle to find my inner peace.

In 2017, I sank into a deep depression, losing twenty pounds and the desire to keep fighting.

I did not shed a single tear. Not one for death, goodbyes, or sad movies. I was numb — overwhelmed by feelings and lack thereof.

In Fall 2016, I started college 458 miles away from home, and new faces asked me what was wrong with my legs before asking my name.

For the record, it is not just my legs. It is my brain, my spinal cord, my bladder, my immune system, my whole body from head to toe.

I was told to “act natural.” But no part of existing in this world and in this disabled body comes naturally for me.

In Spring 2016, I walked to receive my high school diploma, putting my disabled body on display for the entire audience.

In 2015, I wrote my college admissions essay on this very topic — my transverse myelitis (TM).

In 2014, I fantasized about having my own wheelchair. I kept this dream a bubble thought, worried my peers would judge my need because I am ambulatory. It is more complicated than that though.

In Summer 2013, my doctor injected my legs with Botox (and no, not the cosmetic kind) in an attempt to relieve my tight muscles. The dose was too high, weakening me to the point where my legs felt like spaghetti. I kept falling during my family vacation in Italy.

Earlier in 2013, my body moved like the tin man. Stiff, rusty, the exact opposite of a well-oiled machine. This is still the case.

In 2012, I left Spanish class early twice a week to attend my doctor’s appointments in Boston. My teacher did not appreciate it.

In 2011, I convinced my parents that it was a good idea to let me wear four-inch wedges to my eighth-grade dance.

I also convinced my parents to let me walk the town’s 4th of July Road Race. When I crossed the finish line with my older sister and her best friend, the timer was being dismantled.

In 2010, I amazed myself when I wrapped Christmas presents and pulled my hair back with the fine motor skills I was never meant to regain.

In 2009, I presented to my class on transverse myelitis, bringing in my mobility devices and passing them around.

In 2008, I internalized my family’s stories of how I became sick and disabled. I had been told the sequence of events so many times that they felt like my own memories.

In 2007, a boy told me his grandmother could run faster than me. I still laugh about this one and only now and then I cry.

This same year, I was put under anesthesia in order to receive roughly twenty injections. Today, I do it wide awake.

In 2006, I was really into neon and leopard. I had an unreal knee sock collection and picked out my favorite leg brace pattern to date, Hot Babes. I thought it was the most scandalous name ever. My friends told our gym teacher and I blushed.

In 2005, I met someone who shared the same diagnosis as me for the first time.

I attended a symposium on my disease with my mom. She accidentally punctured my skin with the safety pin of my nametag. So my mom pricked herself in solidarity.

In 2004, I realized my years as an able-bodied individual were now outnumbered by years disabled.

I played on the little kickers soccer team and my mom wanted me to wear a helmet. Enough said on that one.

In 2003, maybe I noticed I was different. I have asked my parents when and how they sat me down to explain my disability to me. They do not have a direct answer.

In 2002, I relearned how to walk while my baby sister learned for the first time.

In Spring 2002, I was discharged from the hospital and my inpatient physical rehabilitation. I had chocolate pudding or a popsicle every night. Not because I was special, I have since learned, but so that I would swallow my terrible-tasting medicine.

My uncle visited me in the hospital, and I painted his nails hot pink. He kept it on when he tried a case in court the next day.

My sister visited and passed out at the sight of me being catheterized.

My mom and dad rotated nights sleeping next to me in the hospital, so I was never alone. Family and friends helped take care of my sisters. My baby sister tried to eat wrapping paper. Safe to say the Cerio family hands were full.

On Christmas morning 2001, my family arrived with trash bags full of presents, and we celebrated in the Boston Children’s Hospital lobby. Santa brought me a pink beanbag, and I would sit up for the first time with its support.

We had to cut the sleeve of my favorite ballerina pajamas so it could fit with my IV. For months, the Nutcracker would play on repeat on the box tv suspended from my hospital room ceiling.

My mom rushed me to the hospital in the middle of the night. On our way out the door, I supposedly declared we could not leave without putting my leopard clogs on first. My dad stayed home with my two sisters.

In 2001, well, I would forget the words for Santa and chicken fingers, two of my favorite things. The first signs that a disease was ravaging my neuroimmune system. I would become paralyzed from the neck down, hospitalized in the neurological ICU, and my life as I knew it and my family’s life as they knew it, would be changed forever.

In 2000, my mom would video me with her camcorder to show doctors. She felt there was something off; whether or not this is connected to the onset of my TM is still unknown today. She pleaded for doctors to take her seriously. This would not happen until a year later when we moved to Boston and she carried her motionless child into the emergency room.

In 1999, I took my first steps. Earlier than average. In hindsight, I believe I learned so early because the world knew the ability to do so would soon be taken from me.

In 1998, I was born healthy in Philadelphia, PA.


Rick Telander Added to The National Sports Media Association’s Hall of Fame

Rick Telander’s symptoms started on October 24th, 2009, and he was diagnosed with transverse myelitis. Shortly after his attack, his wife, Judy, contacted Sandy Siegel, and Rick and Judy became members of The Transverse Myelitis Association (now the Siegel Rare Neuroimmune Association).

Rick previously worked at Sports Illustrated but has spent the last 26 years as a senior sports columnist for the Chicago Sun-Times. He was recently added to The National Sports Media Association’s Hall of Fame.

You can read the article in the Chicago Sun-Times here.

On Your Feet: HAC Member Joyce Heritage Walks Independently For The First Time In Over 21 Years

This article was originally published by the Hockessin Athletic Club/Enhance Magazine, produced and published by Sasha Reddy, Graphic Designer, Hockessin Athletic Club, and is republished with permission.

It’s late on a foggy Wednesday morning. Personal training clients are performing banded walks back and forth across the studio, wrestling under heavy weights, leaping away from the floor with explosive energy, all under the watchful eyes of their trainers. Off to the edge of the room, one woman is treading quietly around the studio’s perimeter, skirting the busybodies in the center at a gradual pace. Keeping her eyes trained on her feet and the floor in front of her, Joyce Heritage devotes her full attention to every measured step she takes. Her trainer, Keith Glines, maintains a tight grip on the belt looped around Joyce’s midsection, positioned to brace and catch his client at the slightest sign of a fall. Though seemingly mundane, Joyce and Keith’s slow schlep around the room is nothing short of extraordinary. These are among the first unassisted steps that Joyce has taken in over two decades.

Joyce’s story begins during Father’s Day weekend, 1999. She and her husband John had just left a barbecue at their daughter’s house when, during the ride home, Joyce began feeling some discomfort in her legs. “I told John that I was feeling some cramps in the calves and my toes were tingling,” she says. Though the discomfort didn’t seem to be cause for alarm, by the next morning, Joyce was paralyzed from the waist down.

Joyce was quickly transported to the emergency room, where rigorous diagnostic testing began. Over the next several days, she would endure not one but two spinal tap procedures, a plasmapheresis exchange – a process by which the blood is removed and machine-cleansed – and countless other procedures. Early in the process, doctors were concerned that the paralysis would continue to spread and cautioned that she might have to be “trached and vented.” Amidst all the uncertainty and clamber as medical staff scrambled to try and solve the mystery of her sudden paralysis, Joyce remained level-headed and calm. “There was no time for emotions,” she says. But finally, answers did come.

Several days after her arrival, Joyce was diagnosed with Transverse Myelitis (TM), an inflammation of the myelin sheath of nerves around the spinal cord. In Joyce’s case, inflammation around her T12 vertebrae had caused her to become paralyzed from the waist down and her nerves to burn as if they were on fire. Though the damage to Joyce’s spine was permanent, doctors explained that she might eventually be able to walk again. “With TM, one-third get everything back, one-third get something back, and one-third get nothing back,” she remembers being told. Though TM had left her requiring the use of a wheelchair, with many months or even years of physical therapy, she could eventually be up on her feet once again, and that prospect made Joyce’s next goal crystal clear.

Just as soon as Joyce received her new wheelchair, she became determined to get out of it. After a month of “hardcore rehab,” she was able to walk 17 steps with the aid of a walker but still largely required the use of a wheelchair. A few years into physical therapy, per her doctor’s recommendation, Joyce became a member at Pike Creek Fitness to work on her mobility in the pool and get further guidance from a personal trainer. “Then I met Keith Glines, who has really almost become my adopted son at this point,” she gushes.

When they began working together around 2004, Keith had not been a trainer for long. “I was almost a little intimidated,” he admits. Transverse Myelitis is a rare diagnosis; even though Keith had several years of experience working with clients with various medical conditions, he wasn’t totally certain of the best way to conduct Joyce’s training. He started by building on some of the drills that Joyce was already doing in physical therapy, then slowly began incorporating new exercises. After Keith earned his Muscle Activation Techniques (MAT)® certification in 2008, he began to employ those skills in his sessions with Joyce, which really helped with her nerve pain. “It was mostly just analysis and experimentation,” Keith says. As far as Joyce is concerned, his help was invaluable.

Though Joyce was able to move around with the aid of a walker, she could not yet walk full-time. The lack of sensation in her legs caused her to develop drop foot in both of her feet. She’s broken each of her ankles at least once just by tripping over her toes – so she still used a wheelchair most of the time. Determined to overcome her drop foot, Joyce began to observe the way that people walk. She paid close attention to the lift and push of the heel at the beginning of each step and the cadence of the different parts of the foot striking the ground in hopes of re-learning the mechanics herself. Unfortunately, she was just physically unable to create that motion. Finally, in 2011, Joyce underwent surgery on both feet at Mercy Hospital in Baltimore to correct her drop foot. She was then fitted with medial lateral athletic supports and orthotics. The equipment allowed her to lift each foot fully and step down without dragging her toes, thus letting her finally trade in her wheelchair for a walker.

Joyce had overcome the physical hurdle that prevented her from walking, but her fear of falling still lingered. She and Keith began spending time during their sessions just walking around the personal training studio to help build back her confidence and motor skills. Joyce started by completing laps with her walker, and over time she progressed to using a rolling cane (while keeping a “death grip” on Keith’s shoulder). “Keith has been challenging me ongoingly with things that he thought I could do if I got rid of the fear of falling,” Joyce says with gratitude.

Since her initial TM diagnosis in 1999, Joyce has experienced constant searing pain from her waist down to her toes. She’d taken various medications over the years to help manage her pain but at a cost. In addition to numbing the pain, the meds dulled the already limited sensation in Joyce’s spine and legs, adding to her challenge with walking. In preparation for a procedure, Joyce replaced her normal “heavy-hitter” pain meds with CBD in October 2020. Suddenly, the sensation in her lower limbs began to return. Though not fully recovered, her awareness of the ground beneath her became clearer. “I said to John, ‘I feel more sensation through my feet and my legs.’ And then I realized, ‘Well, wait, let me see what I can do with that new signal that I’m feeling.”

After several weeks of practicing in secret at home, Joyce was ready to try walking in the personal training studio with Keith. On November 18th, 2020, with Keith hovering closely to catch her if needed, she walked around the studio all by herself. Though each step felt wide and awkward, she’d done it. Joyce and Keith snagged another personal trainer and snapped a photo together to celebrate.

During their next few sessions, Keith and Joyce continued to push her ability to walk. After that first unassisted lap, she decided that she’d first try to correct her gait by shrinking the gap between her legs. After achieving that goal, Joyce decided she would walk a lap while looking ahead rather than down at her feet. “I was totally silent like a church mouse when I would walk,” Joyce says, “‘cause I was so focused on what my feet needed to do, what my eyes needed to do…” To further push his client’s potential, Keith then challenged her to count while she was walking to try and shift her focus away from the floor in front of her. After that, they tried carrying out a conversation while doing their laps and obstacles for Joyce to walk around. Even though she had finally walked on her own for the first time in over two decades, she was still eager to keep improving.

“The cool thing about Joyce is that she’s up for anything,” Keith says. He could tell her that she was going to be strapped up and hung from the rafters, and she’d be completely open to trying it. Even during quarantine, while the world had all but stopped turning, Joyce was texting Keith regularly to let him know what exercises she’d been performing at home and ask what else he wanted her to do. “How many people took that time off and got thrown off track?” Keith says. “Not Joyce! She wasn’t letting that happen. She’s a fighter that keeps pushing herself to achieve more and more!”

The way Joyce sees it, it’s Keith who deserves the credit for her success. Though safety is always his first priority, Keith has never been one to tell her whether she is or is not ready to try a new stunt. Rather, he trusts Joyce’s gut as much as she does, and he’s always looking for ways to challenge her to improve physically. That’s what she loves about training with him.

There’s a “mind-over-matter” element to Joyce’s journey. Though she realizes that not everyone has the fortune to be able to walk again after becoming paraplegic, from personal experience and her discussions with various doctors, she’s learned that healing is, at least in part, a mental game. According to Joyce’s MRI’s, as one doctor described, there is no reason that she should be physically able to walk today. Conversely, some patients continue to require the use of a wheelchair even when their bodies appear to be able to move on their own. During the last 21 years since becoming paralyzed, Joyce never thought that she would walk independently again, but that never stopped her from picking goals and working to achieve them. “You have to keep pushing yourself,” she says. “As you step through life’s journey, believe in yourself.”

The Vaccine Gave Me Control of My Life Again

By Sandy Hanebrink, OTR/L, CLP, FAOTA
Diagnosed with TM since 1987
Executive Director, Touch the Future Inc.

Many individuals out there are struggling with the thought of getting or not getting the COVID-19 vaccine. Others are panicking because they are not in the cohort allowed to get the vaccine. There is much distrust on what is fact and what is not. In the disability community this is amplified, but not as much as it is in our rare neuroimmune community, where much conflicting information on vaccines in general abounds. I am right there with you. There just is not that much data out there for our community on anything and especially on the COVID-19 vaccines. So, what made me decide to finally schedule getting the vaccine?

First, Dr. Greenberg put out a few SRNA videos with important and science-based information that expanded as we learned more about this virus. I was already thinking no way am I getting this shot and no way would my doctors even let me. You see, I don’t just have transverse myelitis, but a very complex medical history including allergic reactions to other vaccines, medications, and other things. So, I was pretty much in the not ever going to happen camp. But as information became more available and Dr. Greenberg validated this information, the medical professional and advocate in me just had to know more. Then the shift to maybe I should get this came back into play. I began talking to my primary care doctors again and seeing if they had changed their minds too. With new data, we all began to shift our opinions.

I began researching the studies that Pfizer and Moderna were doing in the US and UK. I reached out to friends at CDC to verify interpretations. I sent information to my physicians for feedback. I looked at the science and weighed the risks. Because of my allergies, I reached out myself and got my pharmacist to reach out to Pfizer and Moderna for a complete list of ingredients, and then we cross referenced these ingredients with other medications I had reacted to to see if anything was there to cause concern. Nothing popped up. I then reviewed the little data known in Dr. Michael Levy’s Rare Neuroimmune Disorder and COVID Vaccine Tracking Survey and saw there really is no difference on how individuals from our community are responding than anyone else. There were zero neurological changes or exacerbations. After talking with my primary doctors, I met with my neurologist to talk about her recommendations and timing the vaccines with my Rituximab infusions. The timing was perfect as I was a little over a month out from my next infusion and as an occupational therapist, I could schedule under the 1A tier and not have to wait for 1C to be authorized to get the vaccine. I scheduled my first vaccine and adjusted my Rituximab infusion to be 3-4 weeks past the second vaccine dose to allow the vaccine antibodies to develop. Thankfully, this was only one week later than I was already scheduled.

We had a plan in place that my medical team and, more importantly, that I was comfortable with executing. I got my first Pfizer shot. I did take a Benadryl per my doctors’ recommendations 30 minutes prior to my appointment just in case for allergies. I had no immediate reaction. The next day I had some soreness at the injection site and, the next evening, I had a mild temperature for about an hour that Tylenol resolved. I did not feel bad, and I had no neurological changes. And to make sure everyone else in our community has the data to make the decision for themselves, I completed Dr. Levy’s tracking survey. I just had my second dose on Feb 1st. Like the first dose, I had soreness the next day but this time it was a bit red. I definitely felt fatigue and some dizziness but was fine the next day. The only noticeable symptoms were the injection site inflammation and soreness. If anything changes, I will share with the community and do the tracking to ensure data is available. I am also scheduled for an antibodies test to see how my system responds in about a month.

I am not suggesting everyone go to the extreme I did before you choose whether to get the vaccine. I think what is important is that you are comfortable with your decision, and that you and your doctors make the decision together. I also think it is a great idea to listen to the SRNA videos and podcasts to get the science and facts as they relate to the vaccine and our community.

For me, I have pretty much been home since March 2020. I have changed to working virtually. I only go out for medical appointments that must be in person. The world as I knew it stopped. During the summer and early fall, I went at off times, 3 times, to an outside dining restaurant, but nothing since. There are just too many people not wearing masks, getting sick and dying to even consider it. I went for a car ride to see fall foliage and we watched college football outside, 8 feet apart with patio heaters and a fire pit blazing, with masks on with only two other people who we knew were being extra cautious. My bubble has been my Mom and my roommate, Dorothy. Dorothy has done all our running around for things not delivered. She is a physical therapist, and she changes in the garage, does laundry and showers before being around us. A life of extra cautious quarantine. Deciding to get the vaccine gave me back control. It put a plan in place that gave me hope for some normalcy again. It gave me the possibility that if I got COVID-19, I had a shot at surviving it. It offered the chance to get back out and do good for others again. I could be more than a voice on the phone or face on Zoom. I could work with clients and pound on doors advocating for accessibility and healthcare again, masked face to masked face. It gave me the feeling I was once again in control of my life. I knew based on science, that the risk of adverse reactions was so much less than if I got the virus. I knew that any reaction I might have could be treated, and that my doctors and Dr. Greenberg all felt the vaccine was safe.

So, this is my story. I got my first shot, and I am fine. I got my second shot few days ago, and I am fine, and I believe I will continue to be fine. I hope it helps you decide what is right for you. I hope you get the vaccine and get control of your lives again. I will keep you posted on my vaccine journey. Be well and be safe. We are in this together.

Wolfs Don’t Quit: Part III

By Dennis P Wolf, Member of the Board of Directors of SRNA

Dennis P Wolf is an accomplished financial executive who has been the Chief Financial Officer of several public technology companies including Centigram Communications, Credence Systems, DataStax, Fusion-io Multi-systems, Hercules Technology Growth Capital, MySQL, AB, Omnicell and Redback Networks. Dennis took some of these companies public along with helping lead the acquisitions of some of these companies. Dennis has also served on eight boards as the Chairman of the Audit Committee and currently serves on the board of Codexis. Earlier in his career, he worked in senior financial roles at Apple, IBM and Sun Microsystems. Dennis holds a B.A. from the University of Colorado and an M.B.A. from the University of Denver.

An important aspect of Dennis’ life is that he is a survivor of 2 attacks of TM, with the first illness happening in 1992 while at the prime of his career. He was later diagnosed with NMOSD.

Dennis wrote a memoir, Wolfs Don’t Quit. The following is the third and final Part of Chapter 11. You can read Part I here and Part II here.

When I came home in May 1992 in a wheelchair, I had been out of Tali’s day-to-day life for 5 months and had to reassert myself as the father, however physically broken I was. I came into the house for the first time up a ramp that was built by Francine’s husband, my assistant at Apple. Standing at the doorway were the 3 girls so excited to see me back. I noticed, though, that Tali was clutching very firmly a clay figurine. I’m sure it was her way of coping with my coming home. I told Tali, “careful, you’re going to smash it”. She did and then said to me, “you’re not the boss of me anymore!” And so began the healing process for each child handled each in separate ways. It is sad that Tali’s first memory is my coming home in a wheelchair. She doesn’t remember me fully able-bodied, and so she worries about me a lot and more than she should have to. In September 2019, after my last relapse, Tali wrote to me, “you live your life with determination, resilience, and yet a wonderful vulnerability. Like a cactus you survive. Despite the heat and extreme circumstances, you flower.” Adversity is the lifeblood of learning to endure, thrive, and blossom.

I fought a hard battle, but Elise won the war. She rallied her troops, she tended to the sick, she smiled confidently at the future; and she did it silently asking for nothing in return and accepting me in a broken condition. And she had already thought through the next steps, which was to move on in the world in our new normal and to get me back. Every time I hear the song made famous by Bette Midler, “Wind Beneath My Wings”, I think it was written for me and to Elise. It so much who she is and what she means to me:

“Did you ever know that you’re my hero
And everything I would like to be?
I can fly higher than an eagle
For you are the wind beneath my wings

It might have appeared to go unnoticed
But I’ve got it all here in my heart
I want you to know, I know the truth, of course I know it
I would be nothing without you

Did you ever know that you’re my hero?
You’re everything I wish I could be
I could fly higher than an eagle
For you are the wind beneath my wings”

That is Elise. How does one deserve her? You do it by being the best version of yourself that you can be. You take your new normal and you make yourself an even better normal. This is not just for day 1 but for all of the days of your life. I try to do that for Elise and often fail, but I will never stop. We all danced at Shoshana’s Bat Mitzvah. It was a promise that was made to my wife and my daughter, and we keep promises. It also speaks to the fact that hope and faith work wonders. I remember saying at the Seder in 1992 that G-d has put on this earth his own cells, we just need to learn how to bind to them. Elise helps me figure that out.

Shoshana’s Bat Mitzvah was on December 24, 1992 at Congregation Sinai. At that time, Sinai was still more orthodox than conservative and didn’t yet allow girls to be called to the pulpit. None of us liked that, but it did allow Shoshana to pick her own d’rash for Friday night. She looked at 3 different portions, Kohelet 3:1-15, Shir Ha’shirim, and Job. Kohelet spoke to her because it was a season to heal, to build, to laugh, to dance, to embrace, to keep, to love, and for peace. And after the year everyone had, it was the balm everyone needed. Shoshana also related that when I left for Israel, my mom left this portion open in my parents’ apartment for when I would come home. She was pretty clear that Israel would change everything.

The time was bittersweet for those attending but triumphal for us because it was everything we had hoped for. At the Bat Mitzvah were my parents, Elise’s parents, her brothers Mark and Phil, Phil’s wife Claire, and their kids Shaina and Ruth along with my brother, his wife Marcella, and sons Bradley, Danny and Andy. Others there included my cousins Aba and Ziesel, my uncle Louie, Elise’s brother Jack, Grampa’s sister Marilyn, and all of our close friends. Of course, when I danced with Elise and Shoshana, everyone was tearful.

I am proud of Shoshana for being the bridge over troubled waters that year. Most kids of Bar and Bat Mitzvah age are given a portion and study hard and plan for a big party. For Shoshana, she had to wait 5 months for her father to come home in a wheelchair and still push forward for a few more months to see whether your family goal of the metaphor “dancing at your Bat Mitzvah” is met. That is a lot of pressure to endure, but Wolfs don’t quit.

Wolfs Don’t Quit: Part II

By Dennis P Wolf, Member of the Board of Directors of SRNA

Dennis P Wolf is an accomplished financial executive who has been the Chief Financial Officer of several public technology companies including Centigram Communications, Credence Systems, DataStax, Fusion-io Multi-systems, Hercules Technology Growth Capital, MySQL, AB, Omnicell and Redback Networks. Dennis took some of these companies public along with helping lead the acquisitions of some of these companies. Dennis has also served on eight boards as the Chairman of the Audit Committee and currently serves on the board of Codexis. Earlier in his career, he worked in senior financial roles at Apple, IBM and Sun Microsystems. Dennis holds a B.A. from the University of Colorado and an M.B.A. from the University of Denver.

An important aspect of Dennis’ life is that he is a survivor of 2 attacks of TM, with the first illness happening in 1992 while at the prime of his career. He was later diagnosed with NMOSD.

Dennis wrote a memoir, Wolfs Don’t Quit. The following is Part II of III of Chapter 11. You can read Part I here. Please stay tuned for Part III to follow.

At about this time, Elise brought Shoshana in to see me. It was about 5 weeks after first being hospitalized. Before Shoshana came in, I took a glance at my body. I knew she was going to be frightened because I had lost about 40 pounds and my legs were unmovable, flaccid, and pushing against the bed. Shosh tentatively entered the hospital room. She was frightened of all of the equipment and all the tubes but quickly overcame it and was very happy to see me, and I was overwhelmed to finally being able to see her. In the Seder, there is the wise child. Shoshana, as the oldest, was that wise child; she knew, and she understood. Because she knew me for 12 years before this illness, she was shocked, but was almost immediately processing the enormity of what had happened. I could see she needed reassurance. I asked her to move from the chair and gently sit at the edge of the bed. I then asked her to look at my right foot as I moved the big toe. I told her this was a sign and was very good news and that I would dance at her Bat Mitzvah. I said it, she believed it, and that was that! Only now did I find out from Shoshana that this was the sign she needed to move forward.

I then told her the story of Franklin D. Roosevelt (FDR) and the fact that he did some great things despite being paralyzed, and that while I was resolute to beat this, she should know that we would all be OK regardless. Elise then entered the room and gave Shoshana M&M’s and told her to wait in the hall so she could say goodbye to me. At that point, I broke down. I didn’t know until now that Shoshana had actually heard my crying, but she was strong and was always present and cheering me on. She never felt sorry for herself, and I don’t think she was frightened about the future.

Nights were the hardest. I remember running in my dreams and was frantic when I woke up and couldn’t move anything at all. This was terrifying. I was lucky to become close friends with the night shift nurse, Barbara Legler. She would sit with me and just help me keep it all together. And after I left Stanford for Santa Clara Valley Medical Center and then UCSF, and then back to Valley, she would visit me on her day off and would watch movies with me and just be there. I encourage everyone to make hospital visits; just show up, it means a lot. And she helped make it lighter for Elise and the girls. Barbara loved dogs and she knew we did. One day when I was in rehab at Stanford, she helped Elise and the girls sneak Cuddles in to see me. It made me cry to see her because it meant that maybe things could be normal again. Cuddles was old at that time, but she was able to wait for me to get home before she passed.

Elise did everything in her power to keep things normal for all of us. She hired a nanny, Marilyn, who helped with the kids for 20 hours per week and gave them have a routine schedule while Elise handled everything. My close long-term friend Morris came over some nights to play with the kids. I missed playing and rolling and running after the kids. When I was asked in rehab what one of my goals was, it was to be able to get down on the floor and play with the kids. Every Shabbat, Elise would bring a delicious dinner for us to share together in the cafeteria and we observed Shabbat; that meant everything to me.

Over the course of five months, I did rehab at Valley Medical, had optic neuritis and a relapse in March, was sent to UCSF to deal with the relapse and serious spinal pain, and then returned to Valley Medical to complete rehab. Passover in 1992 was April 18th, and I was extremely excited about getting a pass to attend our Seders. Elise’s parents were there as were the Sweazey’s and Barb. I was in a wheelchair, but I was present, and those Seders represented my own freedom. To be able to go home even just for the evening, and to know that even though you were in a wheelchair, things were going to be OK was all the impetus I needed to transition over the year from a wheelchair to braces, to no braces, to what was my new normal.

Elise’s father, a pediatrician, came out and was visibly in pain seeing me so sick and with such an uncertain future, but he still reassured me that the body takes a long time to heal and to stay optimistic. In fact, I remember Russ coming in to see me after I was out of danger and said the same, which was that what happened to me happened in a period of hours and that he was optimistic, regardless of the uncertainty, that I would recover over a year up to 80%. I repeated that to myself through the one year of hell, over and over again.

Steve came out a couple of times just to sit with me and get me to laugh and remind me to be strong. And I could see how much it hurt him to see me in my position. It was very hard on my father because he couldn’t come out to see me; my mother had a massive stroke just a couple of years prior to my illness, and he couldn’t leave her alone. And my sister Roberta never figured out a way to see me at all.

This ordeal was hard for me, almost unimaginable, but it was also hard for Elise and the kids. When looking back I see clearly that each of the girls responded in their own way to the trauma. For Shoshana, it was getting reassurance from me and believing in me. She never wavered. I told her that I was going to dance at her Bat Mitzvah, and she believed me. Yael was the quiet one. About five weeks into my illness, Elise brought her into the hospital to see me. They used a gurney to move me from the bed to a big white chair. Yael entered the room, and over a decade after the illness, in her own words spoke about the impact all of this had on her in her own college essay entitled “My Hero”. It captures what was happening to her:

“When I was in first grade, I woke up and my father was no longer my hero. How could he be? He didn’t even have the ability to walk, let alone fly or stop time like other superheroes. My dad returned to being an infant. He learned to crawl, feed himself, and sign his name on legal documents with an “X.” Eventually, I learned that superheroes do not always save the world; they sometimes just recover from a terminal illness without a tear shed. And in learning this, I became stronger.

He sat in a big white chair the first time I saw him after he had become a quadriplegic. He could not open his own mail, let alone hug his six-year-old daughter. I eased myself onto my father’s lap, my heart beating fast in fear of this new image of my hero. I became the adult; I opened my father’s bills with his knife he always used to open his letters. My hero was now incapable of being the person I looked up to, or so I thought.

Have you ever been afraid to sit on your daddy’s lap? I was. I was afraid of this new person who sat before me. This new man had the abilities of a baby. I had more capabilities than my father. These thoughts ran through my head like a freight train on the tracks. As I sat there, on my father’s lap, I looked around and saw IVs coming from his hands and arms and an oxygen tube connected to his nose. Besides wearing the hospital outfit, he also wore a smile. I realized that on my father’s lap was where I was supposed to be. He was still the dad he always was. He was still the same hero. My dad, in a wheelchair, wore a smile, not a frown. He kept his hopes high, and at that moment when I tore open his letters, I realized my father was still the person I looked up to.

I held my mom’s hand, not wanting to let go in fear of having to sit on the big white chair with my dad. I could still walk, why couldn’t he? Looking at the mail on the hospital table, I said under my breath, “Mommy, I’m scared of Daddy. Let’s come back when he’s all better.” Not knowing what to do, my mother shed a tear and pushed me closer to the man in the chair. The man smiled and took my hand. The spark in our palms put a smile on my little face, and I then accepted this new person for his strength.

I awoke one morning not knowing what had happened. I felt that the man I called a hero could no longer fulfill the position due to the lack of strength in his spinal cord. Through my dad’s illness and recovery, I learned that heroes come in all different shapes and sizes. I learned that courage and determination make you a hero, not the ability to drive a fast car or chase away scary monsters under your daughter’s bed.

You are supposed to take what you have learned in the past and thread it into your present and your future. I have learned many things about life and about who I am through my family’s life-changing experience. I will never forget the years of recovery and excitement when my dad saw his big toe move for the first time in months, when I saw him crawl for the first time in the physical therapy ward, and when he learned to walk again with his leg braces and crutches out in the hospital garden. The memories of building and un-building my father’s wheelchair every time we got in and out of my mom’s red 1989 Oldsmobile will travel with me throughout my life. I’ll never forget those things, and I hope I never do. I take what I have experienced throughout my life and change the bad into the good by learning through my own history.”

That is a lot to take in for a child not yet 7 years old. And the fact that a decade later Yael can so vividly articulate her feelings and what she learned is a testament to Elise’s strength in supporting her to have those feelings and to feel safe with them and know she had her support. Each child had a different reaction but all of them somehow learned important lessons from Elise and me in perseverance and hope. Shoshana just needed reassurance and got it from both of us. Yael needed to process what it meant and why something terrible could also be self-healing, and Tali, at not yet 4 years old, processed it differently.

Wolfs Don’t Quit: Part I

By Dennis P Wolf, Member of the Board of Directors of SRNA

Dennis P Wolf is an accomplished financial executive who has been the Chief Financial Officer of several public technology companies including Centigram Communications, Credence Systems, DataStax, Fusion-io Multi-systems, Hercules Technology Growth Capital, MySQL, AB, Omnicell and Redback Networks. Dennis took some of these companies public along with helping lead the acquisitions of some of these companies. Dennis has also served on eight boards as the Chairman of the Audit Committee and currently serves on the board of Codexis. Earlier in his career, he worked in senior financial roles at Apple, IBM and Sun Microsystems. Dennis holds a B.A. from the University of Colorado and an M.B.A. from the University of Denver.

An important aspect of Dennis’ life is that he is a survivor of 2 attacks of TM, with the first illness happening in 1992 while at the prime of his career. He was later diagnosed with NMOSD.

Dennis wrote a memoir, Wolfs Don’t Quit. The following is Part I of III of Chapter 11. Please stay tuned for Parts II and III to follow.

Chapter 11: “Wolfs Don’t Quit!” 

 

You must never confuse faith that you will prevail in the end–-which you can never afford to lose–-with the discipline to confront the most brutal facts of your current reality, whatever they might be.”

 Stockdale Paradox.

This is the chapter I didn’t want to write about because once you open up you don’t know where it is going to go. Up until now I have never written extensively about it. It was always so much easier to explain the diagnosis, tell anyone who asked that I was in the hospital for six months, in a wheelchair for several more months, then full leg braces, then one brace and then none. And now look at me! And with Elise’s (my wife’s) determination and encouragement, hiding it so well that people would look at me in amazement.

But this means absolutely nothing. It wasn’t two braces followed by one brace then followed by none. It was a war, and it took prisoners; Elise, Tali who was 3.5, Yael 6.5, and Shoshana 12. We all fought a war, and I as the commander could not fail; I had no choice. But it was really Elise who kept it all together and drew up the plans on how to fight the attacker. It was Elise who kept the kids steady and provided them a normal life, even with a husband who, as the doctors told her, may not survive, and if he did, he may not walk again, or he could even be in a nursing home. Elie Weisel said, “whoever survives a test, whatever it may be, must tell the story. That is his duty”. So, I am telling you the story.

Before I continue, what you are going to read shows someone with courage that pushed through and became a better version of himself, and a very successful, well known, and respected executive in the Bay Area. I did all of that, but it wasn’t me because there were times I just wanted to quit, physically and professionally. Can you imagine what it is like to suddenly have 3 children and no husband at home with the prospect of your husband never returning? Can you imagine looking at a very sick, very quadriplegic husband in the eye and saying everything is going to be fine? And to do this every day while being as cheerful and as normal as possible for the girls so as to provide them a shelter of peace? And to go back the next day and do it over and over and over again for 6 months? And then to endure the aftermath illnesses over the next three decades? This story is about Elise as much as it is about me.

Late December 1991. We returned from a family trip to Baltimore. Prior to Baltimore, I had been in Japan negotiating for Apple at Fuji. When we came home, I had a stomach flu. A few days later, we were hosting a dinner at our house for our Chavura group when I suddenly became violently ill. I had this overwhelming dysesthesia across my chest. It was intolerable, so Elise and I ran to O’Connor Hospital Emergency Room (ER). The doctors checked me out and told us that I must have a virus and just go home and rest. I went upstairs while Elise did her best to entertain our guests. I tried to sleep, but I was overwhelmed with pain, and so off we went for a second time to O’Connor. This time they did a chest x-ray which was clear, and they told us to go home and try to rest because there is nothing wrong with me. When we got home, I tried to use the bathroom but could not go. The pain in my bladder was severe. By this time, our friend in the Chavura, who was a doctor, was getting worried and told Elise that I had a serious problem, must be admitted, and he would call the hospital. Prior to our arrival, our doctor friend already called the ER, and when the ER doctor saw me, he put in a foley catheter, admitted me to the ICU, and I never went on my own again.

The only thing I know about that first night is that I couldn’t stop throwing up, and I began to lose the ability to move my legs freely in the bed. The next several days became a fog because I thought I had been in the ICU for 1 day, but Elise advised me it was five days. I remember the next day, which might in actuality have been day five, the neurologist raised my right leg and it freely fell to the bed. He then raised my left leg and it fell to the bed as well. And then he tried to open up my fisted hands and they wouldn’t open. I was a quadriplegic.

As kids we all have read a story about the kid who was in a car accident and ended up in a wheelchair. In our naivete, we said we would never live that way; we would just kill ourselves. That’s until never happens to you. So there I was, paralysis overtaking my body and no diagnosis. Elise decided quickly that I had to get out of O’Connor, and they rushed me to Stanford. I looked up from my bed at Stanford and wondered why someone was slapping my face gently to rouse me. I saw Dr. Russ Altman, the Chief Resident, peering down close to me and looking directly in my eyes and saying, very loudly because I was in and out of consciousness, “Mr. Wolf, you are at Stanford and we are here to find out what is wrong with you. Try to relax and we will make you comfortable.” As I look back, I think there were several doctors surrounding my bed. I became a fascinating case. No one wants to be a fascinating case. However, I had the great luck of having Russ Altman as the Attending Physician, and he choreographed a truly remarkable recovery. In Transverse Myelitis, some recover with only minimal to no long-term complications, some recover with significant to serious deficits, and some don’t recover from any deficits. I recovered with significant deficits, but through the first several months, it appeared that I would not recover at all.

Dr. Altman wouldn’t accept the condition I was in and started me on high doses of steroids and came to the conclusion right then that I had transverse myelitis (TM), an ultra-rare disorder. It would only later be determined, after relapses over the years, that I in fact always had neuromyelitis optica spectrum disorder (NMOSD), a progressive and severe autoimmune disease. Elise and I came up with another idea, and this one saved my mobility and probably my life. We insisted that they start plasmapheresis, also known as plasma exchange. Plasma exchange at the time was not used for TM, but Russ worked with us. The two of us knew about it because they used it for septicemia. My brother, Steve, had sepsis several years prior, and plasmapheresis saved his life. We always kept that in mind.

I was in unendurable pain, and the doctors tried to manage it while also aggressively treating my illness. TM is a condition where your autoimmune system overreacts to something that it is attacking, but instead of attacking the invader, it actually attacks the myelin sheath of your spinal cord. The actual inflammation that ensues damages the myelin sheath, and messages from the brain to the spinal cord, and then to the peripheral nerves, are interrupted, causing paralysis and nerve death. The only way to treat this is aggressively, and so Dr. Altman began plasma exchange. I had a total of 13 exchanges. In both of the future relapses I had we used plasmapheresis as well, and now it is a common therapy for demyelination.

Before Dr. Altman could stop the invasion, inflammation was way up the cervical cord on the way to the brain, stopping at C4. I remember the day that things looked ominous. One of the doctors came in who was not really as familiar with my case as Russ and told Elise, while I was laying there as a third person invisible, that she should “prepare” the children because I might not make it through the night. Imagine telling a mother that. When I heard him say that, a couple of things went through my mind. One was that he didn’t know what he was talking about, but the other was that I was almost content this was the case because I didn’t want to live this way anyway. I could not move anything below my neck, my legs were paralyzed, I was not able to open my hands, the pain was relentless. I also had a wife I loved and children who needed me, so that feeling was only fleeting because, as Steve would frequently remind me through all of this and the next ones that followed, “Wolfs don’t quit.”

Elise’s mother had come out and stayed 6 weeks through the darkest first period and then came another couple of times. She supported Elise through that terrible night, and both were given support by our friend and Rabbi Alan Berkowitz. So, Elise did what she does best, she took fate as it was given to her and made the best of it. She got strength from her mother and help from Alan. Savta was there almost every day for all of those weeks and got Elise through the darkest days with her confidence and provided a safe harbor for the kids. I remember her holding my hand and telling me I would be ok. She clasped her hand wearing rings that I still remember and asked me to stay strong.

By the next day, the inflammation was receding, and I was no longer in a life-or-death situation. Elise came in, with tears in her eyes, and told me that I was going to make it, but the doctors told her I might end up in a nursing home. It was January 1992. Shoshana’s Bat Mitzvah was scheduled for December, and I told Elise that I would dance at Shoshana’s Bat Mitzvah. And because I said it, Elise just believed it, and she and I had our goal. At the time I was defiant, but things did not look good at all, and I certainly didn’t believe it.

Because they didn’t know for sure what was wrong with me, I was in isolation for the first few weeks, so Elise had to come in wearing masks and PPE, Personal Protective Equipment (because we are now going through the COVID-19 pandemic, we are all familiar with all of this). After a few weeks had passed, and I had completed plasmapheresis treatment, they allowed Shoshana to visit me.

A few weeks after I was taken out of isolation, my right big toe moved! Any movement at all after several weeks would be a good sign, but the toe gets innervation from the longest nerve in the body and this was really good news. Our friend Ruth is a physical therapist and visited often and reminded me of this constantly. It was followed up by that same movement in my left big toe. And then movement started up my leg and to my arms. While my right hand opened up from a grasping position, my left hand would remain partially paralyzed.

My Experiences of COVID-19

By Ulrika Sundin

My name is Ulrika. I am 41 years old and I live in Uppsala, Sweden with my husband and our four boys. I got transverse myelitis (TM) as a 12-year-old in 1991 at the L4-L5 level. I was recovering from a respiratory tract infection when I suddenly got a sharp pain in my back, and over the next few hours I went from healthy to completely paralyzed below my waist. I recovered fairly well over the next few months but was left with paralysis in the backside of my right leg, pelvic floor dysfunction and a neurogenic bladder. A few years later I also developed nerve pain, and eventually severe IBS in combination with my pelvic floor dysfunction led to my having colostomy surgery as a 29-year-old. We then had our four boys and over the years, the nerve pain and bladder issues became so severe that they limited me very much in terms of activities and being out and about in general. So, I contacted a urologist and tried medication and Botox treatment but eventually opted to have a urostomy surgery. I also went back to work as a PhD student in August of 2019 after more than nine years as a stay-at-home mom and several years on part time medical leave working from home before that. I spent the fall of 2019 working on my licentiate (halfway to PhD) thesis and pushing to get my surgery done before I would switch from employment as a PhD student to being on scholarship. I finished my thesis in mid-December and had my urostomy surgery the day after.

We, of course, had high expectations for the year 2020. I was going to get my licentiate degree and continue on towards my PhD. Since I was no longer limited by bladder issues, we also planned on doing a lot of fun things to compensate for everything we had missed out on in the past. And things started out great. We went to the movies with the kids, and my husband, a friend of mine, and I went to a concert in February where I got to see one of my favorite performers that I have listened to a lot since I was 20. A few weeks earlier though, the first COVID-19 cases had been confirmed in Sweden, and a few weeks after we went to the concert, all these kinds of big events were shut down. The universities across Europe started shutting down and changing to distance education, so when it was time for my licentiate defense, I was one of the first at our university to do my defense virtually. There was a lot of stress involved in that, of course, since it was unclear if we would be able to pull it off pretty much until it was done, since there could be no interruptions or difficulties with the connection or sound, etc. But I made it through, and I was so happy! However, directly after the defense, I had to pack up my stuff and go home to work from home again. It was so strange since I had spent so many years at home and had really loved getting to literally go to work again. There were so many mixed feelings, being happy I had finished my licentiate degree and at the same time being upset about the whole COVID-19 situation and the uncertainty of things. And there was of course also the disappointment of realizing that all those things we had planned on doing would not happen – at least not for the foreseeable future.

I spent the rest of the spring and early summer adjusting to the situation and battling respiratory tract problems and a bunch of other symptoms, and at one point, COVID-19 was suspected as a possible cause. This was when the testing capacity was so low in Sweden that only those who needed hospital care were tested due to lack of testing supplies. For those with milder symptoms, there was a lot of guess work happening. In the end, I was diagnosed with some kind of hypersensitivity mimicking asthma from several infections and stress the previous months. By then, I had spent some time in a Facebook support group for people with confirmed or suspected COVID-19 and I had learnt a lot more about this condition. Before I was mostly worried about my mom who is 80+ years old and lives on her own. But I got a bit more scared when I saw how many previously healthy younger people got really debilitating symptoms that seemed to last for months. In terms of my TM, I was not that concerned as it has not caused any breathing problems. But, of course, I was still a bit apprehensive since this was a new virus to which I did not know how my immune system would respond.

During the summer, the situation calmed down a bit with very few cases in Sweden, and so we could see my mom a few times and I also saw one of my sisters. Other than that, my social life was limited to meeting a friend out in the park for lunch in private a few times, and of course spending time with my husband and kids. We went to the beach for a few hours a couple of times, but other than that, we stayed home or went for walks or simple things like that.

Photographer: Angelica Klang

Towards the end of my summer vacation, everything I had gone through the previous year caught up with me – going back to work, writing my thesis, having surgery, defending my thesis, the whole COVID-19 situation, the lack of social contacts and the general disappointment of what this year turned out to be. It was hard and I struggled a bit mentally the next few months, especially since the case count started increasing dramatically again in mid fall. At the same time, the pandemic had become a new normal, and so in some ways, I was less stressed about it than I had been in the spring.

Later in the fall, cases started popping up closer to us, at one of our boys’ school and at preschool, and it started to feel like it was getting harder to dodge this infection. And sure enough, late in November, my husband started having cold symptoms. He mainly had a dry cough, sneezed and had a bit of a congested nose, but other than that he felt fine. He was able to work from home and take support calls as usual. As the symptoms were milder for him than with regular colds and since he was busy with work and recovered within a few days, he did not get around to getting tested initially. But the week after, I woke up with a congested feeling in the left side of my nose. The rest of the day I felt fine. The next day, however, I lost my sense of smell almost completely. I first noted that my lunch did not taste very much and so an alarm bell went off in my head, and I started smelling things around our house. And sure enough, I could smell almost nothing no matter how desperately I tried. This was not from a congested nose as with normal colds. I could breathe completely freely through my nose. The only things I found that I could smell vaguely were my tooth paste and my nail polish (if I put my nose almost into the bottle). So naturally, I got tested the next day, and the test came back positive. Our 10-year-old developed cold symptoms and a slight fever the same day I got tested, and his test also came back positive. He recovered within a few days. As part of the tracing process, my husband got tested too, and his test was also positive. The rest of the kids were too young to get tested. Our 8-year-old did not develop any symptoms, our 6-year-old got a congested nose, and our 4-year-old had a runny nose, maybe a slight fever and an earache that quickly resolved.

As for me, the worst thing with COVID-19 was the mental part. I am prone to anxiety, so I was a bit on edge the first week waiting to see if I would get any scary symptoms, like breathing difficulties or any weird immune system reactions. But nothing bad happened. My sense of smell started improving within a few days and other than that, I felt absolutely fine the first five days. Then I got extremely tired for about three days and mostly wanted to take a nap, but I tried to stay up as much as possible anyway. After that, I had a couple of days when I was fine during the day but the sleepiness hit me really hard in the early evening. Other than that my rectum (which has been disconnected since my colostomy surgery) got a little crazy a couple of days early after the onset which meant I had to run to the bathroom pretty frequently to empty it. But I did not have any dramatic effects on the rest of my digestive system. It was a bit upset maybe but nothing extreme. The only odd symptom I had was a strange sensation one evening as I was washing my hands. As I felt the hot water run over my hands all of a sudden it felt like hot water was running over my pelvis too. But this sensation only lasted a few seconds. Since my TM started with mixed up nerve signals, I got a bit concerned though and called the medical advice line and they told me to contact my GP if this sensation came back. Thankfully, it never did though. My already hypersensitive respiratory tract acted up a bit, but that started before the COVID infection, so I am not sure what effect the infection had. My GP has recommended that I have a check-up to see if I have developed mild asthma. So, in the end, for us, COVID-19 was not very dramatic. Mentally it was good for me that my husband got it first and had already recovered when we found out it was COVID-19 as he belongs to a risk group, and I think I would have worried a lot more about him if I had known what it was early on.

Now that we have had COVID-19, so far without complications, I am less scared of it on a personal level. But since more and more people close to us have also had it in these recent weeks, it has become clear to me just how hard it is to avoid it now, even if you try to be really careful. This makes me worry more about my mom being able to stay safe until she is offered a vaccine. I also know that the infection itself does not lead to long-term immunity, and as far as I know, there is no absolute guarantee that you will get through it as easily in the future just because you have had it once without complications. Plus, vaccinations might be required anyway to be allowed to participate in certain types of events, at least for the foreseeable future when our societies gradually open up again. So, I really want to get vaccinated. But I do hope that those of us who have had severe autoimmune reactions to viruses or vaccines in the past will be offered a choice in which vaccine to be given. If the different vaccines turn out to have different side effect profiles, and, in particular, if one or more vaccines seem to have an increased risk of triggering reactions like TM, it would of course be wise to choose one that is as safe as possible. I am pro vaccines in general, but as a precaution, my neurologist recommended that I did not take my remaining vaccines in the childhood vaccination program after I had TM. However, I have never had a bad reaction to a vaccine, and I even took the Pandemrix vaccine in 2009 without any problems. So I hope I will get through the COVID-19 vaccination too without any issues, but I also hope I will not have to choose between not getting vaccinated and getting a vaccine I feel hesitant about. It is my hope for 2021 that as many people as possible get vaccinated to gradually put an end to this pandemic and to allow us all to see and hug our loved ones and to participate in all the activities that we love and that make us feel fully alive.

In Loving Memory of Kenney Hegland

By Barbara Sattler

On May 30, 2020, Kenney Hegland, my husband of 38 years died at age 78, eight days after being diagnosed with lung cancer. He had some medical issues, but nothing serious. He’d quit smoking more than 40 years ago.

Kenney was a law professor at the University of Arizona for more than 35 years. He mostly taught Contracts although toward the end of his career he both taught and wrote about Elder Law. He had just finished, Why Did I Walk into This Room?, A Thinking Person’s Guide to Growing Older.

My husband was a prolific writer, mostly non-fiction although he wrote a prize-winning novel, Law Prof.  He criticized most legal writing as too wordy, hard to understand and pompous. Worse, it was humorless. His writing style was always easy to read and humorous. His publishers called him, “Yoda, sage of the law.”

His new book, Why Did I Walk into This Room?, covers issues you’ll have to deal with as you grow older:  estate planning, home safety, depression, retirement angst, paying for health care, senior moments, hospice, financial scams and elder abuse. While the coverage is encyclopedic, the book is filled with down-home philosophy, existential musings and humor.

Kenney’s book is available at Carolina Academic Press (paperback and ebook) and Amazon (ebook). All the proceeds go to the Kenney Hegland scholarship fund at the University of Arizona.  This fund was set up by the law school after Kenney died and will provide money to students who can’t afford law school and have an interest in practicing public interest law, such as public defenders or legal aide lawyers. Kenney began his legal career working as a legal aide lawyer.

Kenney was the most generous man I knew. He volunteered at and donated to a variety of local and national organizations and tried to instill this value in his children and students. He believed we all have a responsibility to help others and to make the world a better place.

Recently, I made a donation to SRNA in memory of Kenney. Although this is the first donation I made in honor of Kenney, I donate to SRNA every year.

I was diagnosed with transverse myelitis (TM) in 2001 after six weeks of going from doctor to doctor, having test after test, and wrong diagnosis after wrong diagnosis. I was partially paralyzed, in pain, depressed and wondering if I’d ever get my life back. A friend sent me information about SRNA (TMA at that time).  I went to their website. Just hearing about someone else who had TM gave me hope. Reading the materials on the website gave me knowledge and allowed me to meet a woman in the town I lived in who had TM.

I immediately joined SRNA.  It was free then and remains free. Over the years, I participated in a support group, went to educational symposiums, listened to podcasts, and met wonderful people who are life-long friends. I’ve had a chance to get advice from some of the docs who specialize in our diseases.

SRNA gives us so much. Family camp for families with children who have one of our diseases. Paying for fellowships so doctors can specialize in treating us. The SRNA website has a comprehensive library of articles about our diseases. SRNA funds research to find a cure. They have patient advocates and much more. No one is ever charged for any of these services.

There is no better gift I can give to Kenney’s memory than to donate to this organization who has given so much to thousands of people and their families across the world.

Barbara Sattler is on the Board of the Siegel Rare Neuroimmune Association. While a city court magistrate in Tucson, Arizona, Barbara contracted transverse myelitis. She took four months to recover before returning to work and was later appointed to the superior court bench. Barbara retired in 2008. Since retirement, she has written four novels and has committed all her publications’ proceeds to SRNA. Barbara’s books are available for purchase on Amazon.com.  Barbara also has a blog.

SRNA Care Socks: Remembering His Sitte

By Sandy Siegel, President and Founder of SRNA

Nancy and I went with our family to a farm to pick apples and pumpkins for Halloween. On a cloudy and cool fall Sunday morning, we drove out to the farm about a half hour from home. We drove separately to keep social distance, and we wore masks in the apple orchard and pumpkin fields. We are grateful to be with family, even if we can’t hug them.

As we got out of our cars and headed toward the orchard, I noticed that Leo had on his care socks. If you aren’t familiar with the socks, SRNA created these as an awareness and fundraising program in 2018. Everyone in my family has care socks.

Our grandchildren called Pauline, Sitte. This is Lebanese for grandmother. Of all the grandchildren, Leo was closest to his Sitte, and he has the most vivid memories of her. Stella has memories, but she was very young when Pauline died.

We spent so much more time with Leo and Stella than with our grandsons in Cleveland. We used to live less than a five-minute drive from them. They moved, and now it is a ten-minute drive. We regularly watched the kids for David and Kat. Pauline spent hours playing with the kids on the floor, reading to them, giving them baths, and giving them meals.

Leo was keenly aware that his Sitte was different. It broke her heart that she couldn’t walk around the house holding them and wasn’t able to dance with them. Sitte loved to dance. They understood that Kazu wasn’t just a dog, like their Luchiana. They saw Kazu pick up things for their Sitte off the floor, open doors, carry things, and get the laundry out of the dryer. They knew that Kazu was a very special kind of dog. When we had the walk-run-and roll awareness events in Columbus, the kids were always there to participate. They understood the work we were doing and why we were doing it.

When we were at the zoo or at a park, their Sitte would ride around on her scooter or was in her wheelchair. Leo and Stella often rode around on their Sitte’s lap. We called her devices, the Sitte-mobiles.

On a beautiful Sunday morning in the summer just before Pauline died, we went to a park near our homes. The kids took off their shoes and waded around in a creek and had such a good time. Their Sitte managed to get into the creek with them. That place is now known in our family as Sitte’s Creek.

Leo is a really sensitive person. He’s very much aware of his Zadie’s sadness. (Zadie is what my grandchildren call me and is Yiddish for grandfather.) I go to the cemetery on holidays and special occasions, and the kids sometimes come with me. They’ve seen their Zadie’s sadness.

Pauline loved being with these kids more than anything in her life. Regardless of how she was feeling, if we were asked to spend time with them, she excitedly accepted every invitation. Sharing the kids became our favorite thing. After Pauline died, being with the kids became difficult for me because her absence was most painful while I was with them. It is easier for me today, but that sadness is always there. The kids can feel it.

When Leo puts on those care socks, he is remembering his Sitte. He is honoring her memory and he is opening his heart to his Zadie; such big thoughts and feelings from a beautiful little boy wearing a pair of special socks.

Her memory should be for a blessing. Ana hubik, Sitte.

If you would like to join Leo in honoring his Sitte’s memory and recognizing the decades of work she did for the Siegel Rare Neuroimmune Association, you can make a donation to SRNA and receive a pair of care socks. Doing so is a mitzvah.

Donate $25 or more using this form, and you will receive a pair of care socks as a thank you gift from SRNA! (Valid only in the United States.)