A few days after leaving the ancient city of Rome, I was back in Manhattan, waiting to walk through the door of the Tisch MS Research Center. The place was founded by Dr. Sadiq in 2006, and for me, he held the keys to the kingdom. I had called the office as soon as I could when we returned. A receptionist told me they were expecting my call, and I was immediately given an appointment.
I saw it as a good sign that the staff had expected my call. I knew I would be cutting in line if I became Sadiq’s patient; by all accounts, there was a long waiting list. I was not counting on anything. I had heard stories of patients cooling their heels for close to one year before being seen by this man. Yet here I was, having been offered an appointment within one day. That told me Sadiq was serious when he invited me to see him. Why, I was not sure.
I was vibrating with anticipation and determined to engineer a seismic shift in my struggle to find health. After I had abandoned conventional therapies, my strategy for waging war on MS had been to sit in a rudderless boat and wait for a current to carry me somewhere. I was weary of doing nothing and accomplishing the same.
The center houses both his clinical practice and the research lab he directs. Together, these operations occupy tens of thousands of square feet in a large building on Fifty-Seventh Street, on the far west side of the city. With clinic and lab under one roof, this place offers its own version of one-stop shopping.
I am not inclined to take much at face value. I have been a journalist too long for that. Had Dr. Sadiq really wanted me to show up at his office, or was he humoring me as the conference ended? I had no reason to doubt him, but when things seem too good to be true, they often are.
According to the center’s website, Dr. Sadiq has the largest MS practice in the world. The place is like an indoor stadium, noisy and packed with patients and staff. Locked doors separate the enormous research area from the more modest space dedicated to the clinical practice. It is not clear whether the lab rats are being locked in or the patients, who rarely get to see the research facilities, are being locked out.
The clinical area looks as if it houses an insurance agency, though there is an energy that one would not feel in a boilerplate business. Everyone walks quickly, as if preparing to race for the cure. I sat in the waiting area looking around. Patients chatted and appeared at ease. Neurologists and nurses actually smiled.
In short order, a receptionist ushered me into Dr. Sadiq’s private office, where he was waiting. He walked around his desk and pulled up a chair facing me. Dr. Sadiq seemed relaxed, and the room was as sunny as he was. The door was closed, shutting out the noise from the corridors.
“I didn’t think you would come,” Sadiq said with a smile, as I sat in a modern chair and stretched out my legs. “Why not?” I asked, taken aback slightly. He shrugged and said, “Because I know how you feel about neurologists.” I looked him in the eye, a little nonplussed, though he was correct. I did remember once telling him that no neurologist had ever done anything for me, to which he had replied, “Then you have the wrong neurologist.”
I explained that I had walked away from conventional care months ago because it was not getting me anywhere; traditional treatments had become wasted exercise, like running in place. He said nothing, waiting for me to go on.
The usual drug protocols had yielded little, maybe close to nothing, I told him, and for years, my expectation level had been hovering around zero. I added that I was now ready for any sensible plan that might move me forward. I was hinting at cell therapy, but he did not immediately take the bait.
Sadiq’s phone rang, startling me. He walked over to a table and answered, proceeding to engage in an animated conversation in a language I did not recognize. When he sat down again, I asked what he was speaking. “Punjabi,” he said.
How many languages do you speak? I asked. “Six,” he answered nonchalantly. Sadiq explained he was of Indian descent but hailed from Kenya. “Everyone over there speaks something different. You just learn them.” I smiled as I thought about my own ignorance of foreign languages.
As Dr. Sadiq settled back into his chair, I had the distinct feeling he was glad to see me. He patiently waited for me to continue. Finally, I said, I am very interested in cell therapy. I think we both said at the Vatican that cell therapy is the future of medicine. Then I shut up, wondering if I was coming on too strong. I was ready to leave the past behind and hobble into the future. I did not know much about Sadiq’s involvement with stem cell therapy or whether I would be a candidate for that kind of treatment.
Sadiq casually mentioned that he was awaiting a decision by the Food and Drug Administration on his application for a phase-one clinical trial using stem cells to treat multiple sclerosis. Those were the words I was hoping to hear. When he saw my eager face, however, he told me that he had been waiting a long time for a response. I know the FDA is a hard sell, so I took that as a warning to slow down.
That, of course, ought to be the MS-patient mantra. Do not get your hopes up. Count on nothing. The landscape seemed so bleak. Thomas Carlyle, the nineteenth-century Scottish historian, had labeled economics the “dismal science.” I thought the phrase would apply more appropriately to neurology. After all, if the numbers do not add up, economists can alter their methodology. Flexibility is the key to their success. Try altering the central nervous system to meet expectations.
But Sadiq was optimistic—his constant condition, as I would learn in the months and years ahead. He was upbeat and positive, a happy warrior. As we continued to talk about his work and my experience with MS, I felt for the first time in forty years that I was with a neurologist who did not see me as just faulty wiring in a body deadened to sensation.
By now, we had been talking for more than an hour. Dr. Sadiq made it clear he was open to trying to help me but quietly insisted on going forward in a professional manner. “I cannot work with you unless you agree to become my patient,” he told me. “We’ll need to do a full neurological workup and an MRI. And there is the spinal tap.” Sadiq paused. I remembered surviving one of those procedures decades ago as part of my original diagnostic workup. The stab in the back was a procedure I had not forgotten. Nor had I forgotten the terrible headache that followed.
While I was revisiting memories of that spinal tap, Sadiq continued. “Let’s identify the problems first,” he said. I know what the problem is, I said in my head. I am a used car on legs. “Commit to me for one year,” Dr. Sadiq went on, “and if you are not satisfied, we can shake hands and say we are friends. And you can move on.”
That was an offer I could not refuse.
In the coming months, I underwent many hours of tests, some of them rigorous, a few scary, even to a veteran patient like me. One of the tests was a two-hour MRI meant to check out my brain and brain stem. I have survived my share of MRIs, but have you ever been trapped deep in a thundering machine and required to remain absolutely still for 120 minutes? I have a survival scheme inspired by a movie where a character devised a strategy for enduring a long sentence in a third-world prison. I close my eyes, and in my head I go to the beach in the company of beautiful women. What happens on that beach stays on the beach.
Then there was the dreaded spinal tap, the long needle pushed deep into my back. Forty years after my first tap, the needles are much thinner, the numbing agent more effective, and the procedure surprisingly quick. It was not as bad as I remembered. I lay with my head down for about thirty minutes, then got bored and went home.
The next test was anything but boring. It was a relatively new procedure called evoked potentials, which sounded benign enough until I got to Columbia Presbyterian Hospital. The test did not feel benign. I entered an old building at Columbia and went into a small laboratory. As wires and electrodes were attached in multiple places from head to toe, a technician smiled and said, “Don’t worry. You will be okay.” Right. Now I was worried.
An electric current surged through parts of my body, measuring conductivity. When we got around to testing my legs, the voltage lifted them off the table. The muscles tightened; my legs shook violently. I thought I was being electrocuted.
On a summer evening, Sadiq administered an extensive neurological exam. The workup was thorough, taking a full two hours and lasting past dusk. Two hours with a doctor. Who has done that? This was a much more low-key affair than the other tests. No fancy equipment required, just Sadiq’s watchful eye.
He had me move my arms and legs, toes and fingers, in every imaginable way; told me to walk on toes and heels, with and without the cane, testing strength and stability. He even asked me to make strange sounds, as if I were an opera singer warming up. Sadiq later explained that he wanted to determine if the disease affected my speech. Then he evaluated my proprioception, the ability to sense where one’s body is in space.
“Now, walk toward me,” he instructed at one point. “Hold your arms out straight. Close your eyes.” He is going to trip me, I thought. “Keep your eyes shut.” He took my hands and walked me around the examination room. “Good,” he exclaimed. “You know where your feet are. Not everyone with MS does.” Dr. Sadiq smiled and told me to sit down. The exam was over.
Sadiq and I were now alone in the cavernous office. The others had left long ago. I glanced out the window. The summer sun was setting. I looked at Sadiq and asked, Do you ever go home? “Every so often,” he replied without looking up. He put the chart on the examination table. “Usually I work six or seven days a week. We have a mission here. This is my life’s work.”
Without missing a beat, he asked, “Do you believe in God?” That threw me. No doctor I’d ever been treated by had gone near that subject. I fell silent for a moment. “I am more drawn to nonfiction than fiction,” I finally replied. “No, not really,” I reiterated. Sadiq was recording everything on my chart. Why do you ask?
“I need to know this,” he explained. “I treat a lot of Orthodox Jews who have strong views and different beliefs. Sometimes it helps to know.” This felt different from any other workup I had experienced. I stifled the urge to ask Sadiq if he himself was a believer. I figured that time would come.
I was aware that Dr. Sadiq is a Muslim; how religious, I did not know. He has an easy way about him. He laughs a lot. So do I. Who cares which direction he faces when he prays? I liked the man.
I was sitting at the end of the examination table, legs crossed. The good doctor stood next to me. The room was really cold. Medical facilities always are too damn cold for me. I was glad to be wearing a thick sweatshirt. Sadiq was in short sleeves.
“Are you always cold?” Sadiq asked. Yup. “That is the MS,” he told me. No kidding, I thought. Sadiq asked me what my biggest MS complaints were. I froze for what seemed to be a lifetime of deep thought. I felt suddenly sad as I tried to answer from deep within the secret cave in my head.
Images of loneliness and frustration flashed across my mind. In airports, I told him, I have to use wheelchairs because my legs no longer can carry me to distant gates. The skycaps who are supposed to wheel me to my destination often seem to operate on slow-motion automatic pilot. Sometimes that means leaving me arbitrarily parked at an odd angle, some distance from my travel companions. Often my back is turned to them, and I am unable to see them, ending up excluded from their conversations.
I feel like an inanimate object, a solitary figure. I wait on the concourse, horribly self-conscious in my aloneness. I am a child again, unable to take care of myself, hoping someone in my party will notice my absence and come get me.
Sometimes what is more painful than being ignored this way is being praised. I have no use for anyone who, usually out of discomfort with disease, blows smoke by announcing that I inspire. Please. In 2016, The New York Times Opinion pages carried an essay titled “I Don’t Want to Be ‘Inspiring,’” by John Altmann, who has cerebral palsy and makes a powerful point. He described sitting in an audience with a friend when he was in high school and being embarrassed by the speaker.
“At the end of the assembly, my friend and I were singled out by the speaker, who said something that people with disabilities hear often—that because I got around on crutches and she with a scooter, we were ‘inspiring.’ In that moment my personal characteristics, the people I love, the interests I pursue and the beliefs I hold became moot, and the fact that I have cerebral palsy and use crutches to walk became the entirety of who John Altmann is and what he is about.”
How odd that a compliment can feel so wrong. Many cannot see beyond our disability, and we become our disease. Altmann goes on to say: “I want a world that is so accessible, where technology and medicine become so advanced, that all disabled people get the chance to opt out of their disability. I want a world where the social relations I forge with those who are able-bodied are not predicated on my disability.”
That is a fond, if futile, hope in a culture that celebrates beauty and physical perfection. For those who are disabled or live with chronic illnesses or both, we hope for one outcome: we want to be normal. Please, God, let me be normal. The world does not see us as normal, however, and sadly that is rarely how we view ourselves.
In 2006, in Chronically Upbeat, my online column for AARP the Magazine, I wrote about the longing to be like everyone else: “Almost all who have lived with a serious chronic condition for an extended period know the unsettling sense of being marginalized by the chronically healthy around us.
“We are all too familiar with our own limitations, keenly aware of what others can do, as we watch from our seats in the bleachers. I will be a spectator until my last breath is drawn. Gradually and grudgingly we grow used to our second-class status because there is no way around it. These observations originate in my own head. They are not on the lips of others.
“We are not normal by any standard measure, even to ourselves,” I wrote. “So many of us live in our heads, sometimes the only safe refuge we know. We are driven there by others, by employers and dates and even casual friends who can say the wrong things, even while trying to do right. And we retreat to our secret place, the unseen hangout where we can be ourselves without feeling we belong in the local freak show.”
I did not even mention this to Sadiq, who has many patients far worse off than I. That is my private head game. I know I am fortunate that I am still on my feet. I cannot lose sight of that. Yet there is no pecking order to loss. We deal with our own realities and would be fools to constantly measure our emotional pain against that of others. I just stay silent.
I am put off by those who complain, as if they had been promised a better deal. I try not to beat my breast or take out my frustrations on others. This is my life. I own it. I take pride in handling my issues with grace and dignity. Sometimes how often I express my grievances is all I can control. The sick learn how to juggle, to pick and choose strategies and swallow most of the pain. I am not going to burden family and friends with my unhappiness. Yet sometimes I know deep down that I am a burden.
I uncrossed my legs and told Sadiq about the time years ago when Meredith and I took Gabe to Spokane to start his first job as a television reporter. We arrived with little time to spare and much to do. The clock was loudly ticking. This was a time of quiet emotion for all of us.
We had to move quickly to buy a car, find an apartment, choose furniture and bedding, stock up on kitchen supplies and life’s odds and ends. All this had to be done in little more than forty-eight hours. We needed more functioning arms and legs. There was no time for my physical shortcomings. I was useless, perhaps even an extra weight at a time when we could not handle more baggage.
As Meredith and Gabe headed down miles of aisles shopping for his new life, I was left in the dust. My presence was forgotten. With every stop I was quickly done in and went quietly out the door. Waiting in the car with only an FM radio station to keep me company had become a way of life for me. Meredith and Gabe were only doing what they had to.
I get it, but I never get used to it. I can walk only short distances and even those with difficulty. The world is in a hurry, but I cannot be. I could not keep up with my family that day. With my damaged eyes I had watched my loving companions melt into a distant blur. My life is an impressionist painting, a tapestry of fading colors and vague shapes.
I also remember the night Meredith and I were having dinner with Gabe and Lily and a few of their friends from Northwestern at a favorite restaurant in Chicago. My temperamental bladder suggested I find a restroom. Our waitress had noticed my cane and told me that I could avoid the long, steep stairway by taking an elevator down and heading into an adjacent building.
The young woman led the way. Once we had descended, she unlocked a heavy door connecting the two spaces and said she would wait for me. I moved into the next building by myself, stumbling and glancing off the doorframe. I ignored the pain in my arm. Bumping into inanimate objects had become a ritual. Bruises were a constant part of my life.
When I got to the bathroom the waitress had pointed to, I discovered it was locked. I was annoyed and retraced my steps, only to find the door back into the restaurant locked too. I just stared at it in disbelief. I was now focused on controlling my bladder, one of the little life crises that go with multiple sclerosis.
The corridor was deserted. I knocked. Nothing. I banged on the door in desperation. I really did have to go. I was standing there stone-faced when the door finally swung open. The young waitress smiled and told me she was just checking to see if I was done. I was done, all right, sick of these situations and tired of hoping for better.
Sadiq was scribbling, taking everything down. This doctor in his starched white coat wanted to know my priorities. I knew he genuinely wanted to fix all that was wrong with me, but as I sat on the examination table, I found myself slipping back into a cynicism born of hurt. I worried that Sadiq might join every other doctor and fix precisely nothing.
What did I hope for that day? I did not know. The exact nature of this exercise in wish fulfillment was not clear. For all these tests and visits to the center, there still was no plan. Sadiq had told me about his application to the FDA for a stem cell trial but had not indicated whether I would be included. That had been months earlier. The subject seemed to have gone to sleep.
After the tests were done, Meredith joined us. We discussed the results and talked about where we would go from there. Cell therapy was the elephant in the room. The idea was not mentioned. Meredith liked Sadiq, but agreed with me afterward that he had been vague about what would happen next. Our shared radar had picked up no signs of movement. And just like that, hope was stalled.