picture of a white man with long brown hair pulled back in a ponytail. The view is cropped at the shoulders, and he's wearing a gray collared shirt and a dark tie. He has a hint of a smile on his face in this formal picture

On Tuesday, I had an appointment with a new neurologist. The neurologist I’d been seeing, Dr. Schneider, was on medical leave due to a cancer diagnosis.

I’d had a telehealth appointment with Dr. Schneider in June, and he’d been a little pale and skinnier than usual (he was always a pretty slender guy), and during that appointment, we’d talked about him learning that he’d had cancer a few months earlier.

His symptoms and diagnosis struggle had been occurring in the fall of 2019, when my migraine started, and was the reason that he’d referred me to his colleague who specialized in headaches.

He assured me that he’d be around for a while longer, that the cancer was slow-moving and he would be able to keep helping me manage my Functional Neurological Disorder (FND) symptoms.

I had decided earlier this year that I wanted to look at my antidepressant prescriptions as part of my medication overhaul.

Dr. Schneider was still on medical leave, and my neurologist who specialized in headaches didn’t have psychiatric training, so I scheduled an appointment with the other neurologist, who the department had been mentioning to me since Dr. Schneider’s medical leave had started a year or so earlier.

Learning of his death

So when I walked into the office and met this new neurologist, I mentioned Dr. Schneider and how he’d supported me with my FND.

The doctor flinched slightly at my mention of his medical leave (and my clear assumption that he would be returning from it). His response was a serious look and the ominous statement of “I’m afraid I have some bad news.”

As he told me that Dr. Schneider had passed away two weeks earlier from complications caused by his metastatic pancreatic cancer, I briefly lost control of my body.

I shook, stamped my feet, rocked a little. Al sat beside me, ready to help if necessary, and held my hand tightly as I regained control.

on a pink background, a framed black board that holds lettering.  It reads 'roses are red, violets are blue, cancer sucks.'
Cancer sucks.

To give the new neurologist credit, he handled my becoming symptomatic well, and focused on being empathetic.

He agreed that Dr. Schneider had been an amazing doctor, and let me know that Dr. Schneider had been consistently upbeat and hopeful about beating his cancer despite the odds being against him.

I think I’m still in shock and know that I’m still processing this loss.

The new neurologist also suggested that now wasn’t the time to adjust my antidepressants and wanted to be sure that I would be able to speak with my therapist soon.

While relatively young doctors dying isn’t particularly common (Dr. Schneider was in his 40s, maybe 50s tops), it can be painful for us as patients, and I think it’s worth talking about.

How close was I with Dr. Schneider?

Dr. Schneider didn’t diagnose my FND, and by the time I saw him, I had a pretty good handle on both my condition and how to manage it, but he was an amazing ally.

I suspect that if he and I had met under different circumstances, we likely would have been friends.

He wasn’t your standard anything—from physically standing out with his long hair to his open acceptance of my identity and lifestyle, he was a doctor who I really could feel comfortable with.

My appointments with him often involved conversations about building out more supports for the FND community, and I felt more like an equal than a patient.

We had conversations about BiRequest, bisexuality, polyamory, and the impacts of chronic illness. He connected me with a fellow FND patient who needed some additional support because he knew I’d cheerfully offer it.

On a clipboard, there's a piece of white paper with crayon writing on it.  The blue writing reads 'Thank you doctor' and a large, red heart is drawn underneath and colored in.
He was a wonderful doctor, and I’m so grateful he was there for me.

I remember when we discussed my migraine a few weeks after it started, I’d shared that I’d just been dumped by my partner, then hastened to explain “not Al, my OTHER partner,” and the headache had not started that day but prior to the event.

He’d taken it all in stride, agreeing with me that girls were weird and hard to understand sometimes.

When I’d gone to the ER for the migraine treatment, it had been at the hospital he worked at, in hopes that he could help me should I be faced with bias there in response to my FND symptoms.

Dr. Schneider gave me psychological support, helping me to verbalize and recognize the parallels and echoes I’d been just starting to recognize between Al’s hospitalization and my father’s death.

I especially remember discussing the emotional impact of Al growing a beard during his hospital stay, which made his physical appearance much more similar to my father’s (who maintained a beard my entire life).

Doctor Schneider was an amazing man, an incredibly empathetic doctor, and an expert in FND.

The loss for the FND community

The FND community is relatively small globally.

Dr. Schneider was (as far as I’m aware) one of two neurologists in New Jersey with a focus on FND, and he studied FND at Columbia Presbyterian Center for Movement disorders, which was where I was first diagnosed.

Alison smiling, wearing a FNDHope shirt and holding a sign reading "I am #FNDAware, are you?"
FND awareness is important!

That department is one of several in the country that is highly aware of FND, and likely the only one in NYC, possibly the state.

Finding an FND-aware neurologist is quite a battle, and people drove out to see Dr. Schneider from all over NJ and eastern PA.

He also was the doctor contacted on the Diagnosis series on Netflix (episode 7, Paralyzed) when a patient had a potential FND diagnosis.

While he was not deeply active in research, he ran a PT/OT outpatient treatment program (I’m aware of maybe five others in the country, though there likely are more) at UMDNJ (The Psychogenic movement disorder clinic, part of the movement disorder and Parkinson’s center), and was very supportive of his patients.

Contrasting that not only to my own experience of three years of uncertainty but also the nightmare stories I’ve heard from many people who have or suspect they have FND, the FND community has suffered a great loss.

For too many FND patients (as well as others with poorly understood conditions), too many doctors insisted that it was “all in their head” or outright dismissed them as liars. You start to get the picture of how painful a loss this is to the FND community.

The challenge of finding the right doctor

As most people with chronic health issues can attest, finding a good doctor is hard. There are way too many doctors out there who simply can’t work well with chronically ill patients.

In some cases, it’s a personality issue; in others, it’s about the challenges of making a good diagnosis; and in others, it’s a side effect of short appointment times, the challenges of making appointments, or poor communication.

Finding a quality doctor often takes a lot of time, effort, and really frustrating appointment experiences.

Finding a doctor who is the right fit is often a huge relief and an incredibly empowering experience.

Losing that doctor, therefore, is a proportionally heavy loss.

group of doctor diverse in both race and gender stand together, smiling
Sometimes, you get lucky and your doctor was able to line you up with other helpful professionals.

Not only is there the pain of no longer having the doctor who understood your situation, but often the awareness that now you’re going to need to go through that whole process again.

Also, when they’ve been an especially good doctor, there’s also the pain of the world losing an amazing human being.

I’m grieving right now.

I’m grieving his death and the pain his family and loved ones must be going through.

I’m grieving my loss of an amazing doctor.

I’m grieving for other patients with FND who have lost one of the few neurologists out there able to give a quality explanation of the condition and help them through their own diagnosis process.

Processing loss—again—emotional echoes

For me personally, major emotional hits echo through time. My depression was initially triggered when I was nine by a series of deaths in the family.

While deaths can be transformational, reliefs, and there are certain positives that can be pulled from death—it is first and foremost a loss. The person who died cannot be an active part of our lives any longer—cannot interact with us, will not be there to create future memories.

Having a disability can teach all kinds of lessons, but there is usually a form of loss associated as well, especially for people who have a “before” and “after.”

I know I went through periods of grieving for who I was before my FND symptoms became debilitating.

a red rose on a gray marble background.  On the rose are the words 'remember that it won't hurt forever'
Processing through grief is vital. But it isn’t always easy—and those echoes can be haunting.

For me, any death or loss around me brings back the memories and emotions surrounding previous deaths and losses. It ramps up my tendency toward depression and puts me back in a grieving cycle. I suspect I am far from alone in this.

So learning of Dr. Schneider’s death put part of my brain and my own emotional tendencies and memories back into some of the most painful events of my life—losing my great-aunt to a traumatic brain injury(TBI) in a car accident, my grandfather’s stroke, my grandmother’s emphysema, my uncle’s suicide, losing my other grandmother to a TBI in a car accident, my father’s deadly TBI, losing a lover to a drug overdose, and more.

My brain connects the one loss to all the other big ones, and it can feel overwhelming at times.

Counterbalance—the dangers of not processing the loss

With my history of depression, I also have a deep-seated fear of falling into depression.

Unfortunately, that is connected to a fear that if I allow myself to grieve, then I won’t be able to climb out of the emotional hole.

That’s another part of what I’m managing right now. How do I give myself space to grieve, and then be able to keep going in my life without getting stuck in that grief?

What’s an appropriate amount of time/space/emotion for processing Dr. Schneider’s death and my loss of both one of the supports in my life and a really amazing doctor?

I’m operating slowly right now, and just trying to write this post this week is the only work that I’ve been focused on since I found out about his death Tuesday afternoon.

I’ve been near tears many times, but pulled myself back each time, while I know that ideally, they need to flow.

Part of being emotionally healthy is letting yourself cry. Death feels so big that I’m afraid I’ll be overwhelmed by grief, so letting myself really connect with it is hard.

I’m trying to practice mindful self-compassion and let myself feel what’s going on, while recognizing that grief and loss are huge triggers for me, not only of my depression but also of my FND symptoms.

I’ve been extra symptomatic since Dr. Schneiders’s death, but that’s understandable, so all I can do is acknowledge the reasons and keep living.

I also have shifted my meditation sessions to focus on grief and processing loss, and am trying to put myself into spaces where I feel like I can safely express my emotions.

I’m still working on finding that balance, but each loss, each step can get a little easier and a little less uncomfortable.

Losing a great doctor is painful, but you can get yourself through it

This isn’t the first time I’ve lost a doctor in the sense of no longer being able to see them, but it is the first time that a doctor has died while I was an active and close patient.

My previous FND specializing neurologist, Dr. Mazzoni, also had cancer, but he was able to recover, and then moved to St. Louis when his wife had a great job opportunity.

I’ve had doctors retire before, and doctors who changed practices.

Dr. Schneider was pretty close to my own age, which makes things all the more painful.

If you lose a great doctor (or even a good one), there will be some hurt involved. You’re going to miss them. That’s just part of life.

You’re also going to need to deal with finding another doctor to help you in the future.

In many cases, especially if your doctor was part of a larger practice, there’s likely to be a colleague who either they recommend or who their office suggests you see instead.

In the case of Dr. Mazzoni moving on, he recommended that I seek out Dr. Schneider if I wanted another FND expert.

In Dr. Schneider’s case, his office had another dual-trained neurologist/psychiatrist that they recommended.

Fortunately for me, this new neurologist, while not an FND expert, is an empathetic doctor.

two doctors look on and make suggestions while one in the middle spreads out information
Many doctors have close colleagues who they frequently work with. Often you can be referred to them if your doctor becomes unavailable.

He is FND-aware and very willing to partner with me in the game of “Is it FND or something else?” so that I don’t need to put energy into looking for a replacement.

Other patients of Dr. Schneider’s may not feel the same way, especially if they are just coming to terms with their diagnosis and need more expert guidance in understanding their FND.

If you lose your doctor, you can’t expect the next one to be the same—though you do want them to meet similar base requirements.

Give yourself some mental space, if you can, to process your loss and to think about what traits you need in a doctor so that if you do need to do some searching, you’re ready.

Try out the recommended option first, if there is one, and proceed from there.

Losing a doctor isn’t easy, especially one who has a deep understanding of you and your condition.

The type of permanent loss that I learned of this week is just that much more painful and extreme.

If you go through this too, there are a few things to bear in mind.

  • It’s okay to grieve. While you don’t see your doctor as often or long as you would a friend or family member, you and your doctor (especially a good one) do have an emotionally intimate relationship as they are helping you to manage your condition. Losing them does hurt. Period.
  • Finding a good doctor is often hard, and the possibility of needing to restart that search can feel overwhelming. You have every right to grieve that loss too.
  • Whoever you see next can’t be exactly like your previous doctor, and you don’t need them to be. What you do need is a good doctor with whom you can comfortably work.
  • It’s okay to lean a bit on your other doctors/specialists if this happens. I’m having an extra therapy session due to learning about Dr. Schneider’s death. It also may make sense to have a different doctor of yours (such as your Primary Care Physician or an overlapping specialist) help you with medication maintenance or other aspects of your treatment while you process your loss and look for a new doctor.

If you’ve got a good support network, you can get the support you need, even when a chunk of that web is removed.

If you’ve lost a great doctor too, I want you to know that I empathize. I hope you find this helpful in your journey.

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8 Comments

  1. I’m so sorry, Alison. What amazing support you had in Dr. Schneider. I know you were expecting to see him again. He would be so loved by this post that shows just how meaningful his life’s work is. I hope his family gets to read it. Hugs to you as you mourn this loss.

    1. Thank you Katie. I’m still a bit in shock, and processing. Dr. Schneider was an amazing person. I feel weird that I couldn’t find his obituary anywhere, but I’m moving forward the best I can. He and I were pretty close in age, so it’s also a reminder of my own mortality.

  2. I’m sorry Alison, your doctor sounds like he was a wonderful support to you. Wishing you all the best, and I am sure that he knew what a positive part of his patients lives he was.

    1. I hope so. I know that he went to the FND conference and chatted with the neurologist who treated me in Louisville. He was a really great person and so supportive as I managed my FND. He is missed.

  3. What a gut-wrenching post. I’m sure it was very difficult to write. It was a bit of gut-punch to me when I read he had died, and obviously, I didn’t even know him. But losing a doctor like him is a loss to all of us with chronic illness.

    This post is also powerful and important. Thank you for having the courage to write it.

    Sending hugs as you process your grief.

    1. Thank you so much! Dr. Schneider did so much and had so many plans to do more. I’m processing it, but it definitely was a gut-punch, as he’d been so upbeat when I’d last spoken with him, and I totally believed he’d beat it.

      I think it’s so important to process through these things, and writing this post was partially my way of processing it, as well as using it to help others through their own losses. I think it’s so important to recognize that even though you don’t see your doctor super often, it still is an intimate relationship of a unique nature.

      The better the doctor is and the harder it was to find them, the more painful the ‘I lost my doctor’ feeling is – even if you don’t have any more of a relationship with them than as their patient.

      thank you for the empathy!

  4. Thank you for writing this great tribute to a wonderful doctor. He was eager to learn and support FND patients. His kindness and compassion continue to be greatly missed in the FND community.

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