Sunshine Mugrabi: Disability real-talk

The author, entrepreneur, and disability advocate shares her journey making meaning in hard times

Sunshine Mugrabi is an accomplished author, blogger, and passionate disability rights advocate whose work spans memoir, journalism, and chronic illness activism. You can learn from her perspectives on her blog. Be sure to check out:

• How ChatGPT transformed my understanding of AI: A personal journey

• Seven ways to cope when loneliness becomes unbearable

• Can awe be medicine? The transformative effect of wonder on pain and suffering

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Ritika: Tell me about your incredible career journey.

You achieved what was, for many, a dream at a young age in your 40s.

How did you find your stride on this path?

Sunshine : I declared that I was going to be a writer before I learned how to read.

As soon as I learned how to write, I would buy little books and start to write. Sometimes, I would staple pieces of paper together.

Throughout my life, I felt like the dream was getting hammered out of me. But I kept going, and in college, I got published in a small newspaper.

I continued doing journalism.

That was before the Internet in the ‘90s. I would write for very little money or sometimes no money at all. Eventually, I got a short story published in a literary journal.

When the Internet started taking off, I was able to find my first writing job, at CNET. That was in 1997. I wrote about shopping online and computing for newbies. Meanwhile, I started working on a novel that had some promise. I spent three or four years on it. But it didn’t gain any momentum. I gave up. I wrote another novel. I gave up again.

Along the way, I held various roles in high-tech industries.

Eventually, I moved from San Francisco to a small town in Massachusetts, to write tiny pieces of news for a small town publication. I spent hours refining my craft until eventually, the newspaper hired me as a business reporter. It made a positive difference in my ability to write, and eventually, I was able to get a full scholarship to Columbia University for a master’s program.

Afterwards, a job at a tech magazine, Red Herring, brought me back out to Silicon Valley.

Around the time that the financial crisis happened in 2008, I decided to start my own business.

My timing was not great, but I did it. I don’t know how I did it, but a client from my full-time job really liked working with me, so I took them with me.

I wrote for their blog, I did their marketing, and I kept working on building up my skill set. I took a workshop and met a very encouraging teacher. She helped me write a memoir.

By 2014, I published my book. I was making quite a bit of money as a writer for the tech sector. Things were going so well that I could afford to hire a publicist. I had speaking engagements lined up for TV and radio. Everything seemed to be falling together in this perfect way. I was starting to succeed as a writer. My business partner and designer was my husband. Everything was lined up. I didn’t even need an agent or publisher—I was getting press.

Ritika: So you went out to celebrate, of course. You had spent four decades working towards this milestone.

Sunshine: One night, I went out with some friends to celebrate the book, and life in general. We went to this place in San Jose, in Silicon Valley, where there are little food stalls. There's a picnic table in the middle of a plaza.

We went there to sit, and it was kind of cold. So I sat under one of the big heat lamps that they use to keep people warm outside.

One of the workers came out to change the propane tank. He lost control of it. It fell on my head. It threw me forward.

I didn’t know what was happening. I didn’t pass out. It continued rolling and hit my friend in the face. Everyone was worried that he had been injured. Nobody was worried about me because I seemed fine.

But then I felt some tension in my neck. The EMT came and checked me out to see if I had a broken neck. They thought I was fine — just a sprain. I went home. But I wasn’t fine. There was something seriously wrong. It got worse and worse. I had to cancel all of my TV and radio appearances. I started having vertigo. I couldn’t work. Everything went haywire in my life.

Ritika: What happened next?

Sunshine: We were in a downward spiral. It felt like everything was spinning out of control. I was losing weight. I couldn’t find the necessary doctors in-network for my insurance plan, and had to pay a whopping $20,000 deductible. I relied on out-of-network doctors. All of a sudden, we were broke. I couldn’t work. I was sick all the time from the vertigo, and no doctors were able to figure out what was wrong.

My MRIs were normal. My CT scan was normal. The doctors thought that I was having emotional problems — some kind of psychosomatic reaction to trauma. Nobody wanted to treat me.

So I sank like a stone. I was falling through the cracks. My husband Leor was going out of his mind trying to help me. There wasn’t a straightforward treatment plan because there was no diagnosis. We tried going to alternative practitioners. Things got worse.

Ritika: What happened next?

Sunshine: I had a friend, Dr. M.R. Rajagopal (“Raj”) a prominent physician who runs a nonprofit palliative care organization, Pallium India that serves people who are dying or disabled. I had volunteered for this group, spending time in India.

Raj was visiting his son in San Jose, and we met up. He didn’t realize how bad it was. So he sounded the alarm to everyone in his network. He helped me get into the University of California, San Francisco (UCSF) medical system.

They saved my life by giving me much needed pain meds and muscle relaxers. But they still couldn’t figure out what it was — maybe my brain was having a phantom reaction. There wasn’t anything physically wrong with me that they could find, and they didn’t refer me to their neurology department even though it’s one of the best in the country. Had they done so I might’ve gotten diagnosed and treated right away instead of it taking years.

The vertigo was under control, so I started working again. By then, I had lost so much more weight. I worked for my highest paying client, from a hospital bed in my bedroom. There were nurses and social workers coming around.

Eventually, the client had a management change, so I lost them as a client. It was tough for me to network to find more opportunities. I hung in there. I ended up back in the hospital and spent a summer there.

Eventually, I was diagnosed with something that you can’t see on an MRI. It was a neurological condition similar to Parkinson’s, dystonia. A year later i was diagnosed with a second condition, stiff person syndrome, a rare autoimmune immune disorder. Both can come on after an accident.

Ritika: What happened next?

Sunshine: I had been up and down physically. At one point, I was doing so well that I could get out and about. I was able to meet with clients on-site.

One day, I went to go meet with a client at Stanford University campus. We had lunch, and I had a cup of tea and some food with me. She didn’t have any awareness that there was something wrong with me.

We decided to go upstairs. Suddenly, I was cradling everything in my arms, grasping on to the bannister. I was barely able to get up the stairs. I realized that I had been in the closet about being disabled. I was able to pull it off.

Ritika: What happened next?

I moved into a teaching career. There was a CEO of a known tech company who decided to step down. He wanted to learn how to blog rather than hiring a ghostwriter. So he hired me to teach him how to write. I really enjoyed working with him. That got me thinking seriously about teaching.

I’m not as sharp as I was before the accident. But I’m still able to write. I need to be more vigilant about staying focused. It doesn’t come so easily anymore, but I still put in the work. I still keep going. It’s hard to maintain a career with disability and chronic pain.

Sometimes, I take a step back and think how amazing it is that I became a writer. I pursued a childhood dream. I failed so many times along the way, and people told me I wasn’t good. I’m amazed that I pulled this off.

The book is still doing well. It still continues to sell. At one point, it was on a list of top memoirs.

Ritika: What inspired you to keep going…and continues to inspire you to keep going?

Sunshine: I’ve always known that my purpose on earth is to be a storyteller and writer. Even when I fumbled around and failed, there was something about just knowing that I was going to do it anyway that was powerful. It never went away, even after the accident.

It’s just still there. It’s a basic sense of who I am and what I’m here to do.

One of the great things about my book is that it’s been a resource for people with family members who are going through a gender transition. It’s helpful and affirming to them. I receive touching emails from people who the book has helped. Not to mention, it’s a nice story. It’s romantic.

I love what I do. I always have. My passion in life is something that has never changed.

Ritika: So what did change?

Sunshine: Most of my friends evaporated when all of this happened. Like most people in Silicon Valley, I had a super busy social life. I had friends. I had girlfriends—you know, people with whom you’d go out.

But they all just disappeared. There was nobody there. A few people from the palliative care community volunteered to help us. But it was all really bleak. The people who I assumed would be there for me just backed away. They were scared.

I was 47 when this happened. I was in perfect health. I wasn’t someone that you would ever imagine being in a wheelchair. But it happened.

People are scared of this stuff—very scared. I didn’t understand it at the time. I do now, but back then, I was just devastated.

It was horrible at the time. But it’s a gift, in hindsight. I didn’t have to wait until I was really old to find out what it’s like to be really vulnerable. I figured out who my friends were. I was no longer living in a delusion about people—I’m now far more careful about who I allow into my life.

Knowing these things is a gift. I no longer feel that I’m floating along, allowing others to take up my valuable time.

I remember I used to tell my husband that I wasn’t a strong person — that I couldn’t face what I was going through. But it turned out that I was a strong person. I could face it. That was an important thing to discover about myself.

I began to develop more of a spiritual life. I had always had one, but it was never a consistent thing. I meditated a lot.

There was one point in which I was in the hospital and couldn’t move. I couldn’t read. I couldn’t watch TV. I couldn’t work. I was just lying in bed, in pain.

At that point, my spiritual life was all I had. I began to realize that there’s a consciousness beyond ordinary everyday thinking—a kind and wise presence that will support you through the hardest of times. Without that, I don’t know if I would’ve made it.

Ritika: Do you ever wish you could go back?

Sunshine: As the years pass, I do wonder if I could have done without this gift. It’s been six years, and I’m still in it. I’m not sure, but it looks unlikely I’ll ever get out.

I wonder why I needed to go to the restaurant. Or why I made certain decisions. I have those kinds of thoughts. But I’ve stopped crying. The suffering is just there.

Would I rather be the person who runs when a friend gets sick?

Would I rather be afraid of suffering?

That, to me, is so much worse.

When I go out in public, I look at people. They all have this look on their face that I know very well. I just look at old pictures of myself, and I see it.

I see things in other people that they can’t see in themselves. Most people don’t have this ability. It takes a period of suffering to see it. People lack awareness of their own mortality, you know?

It’s something that I think about all the time. It’s a gift. I don’t know how long I’ll live. I don’t know if it’s going to get worse.

I’ve had periods of time where the pain was so intense that I couldn’t think. All I could do was essentially pray, which wasn’t a normal activity for me because I’m not religious. But I found myself in complete connection with the universe.

These are the peak experiences in my life.

After I was in the hospital, I was released to a nursing home type place—a rehab facility. In the hospital, I was in a room with no windows for three or four months. Then, suddenly, I was in a room where there were windows and fresh air. There were women speaking in Russian outside.

I lay there. I couldn’t move. I was basically paralyzed at that time. The sounds of the women talking was like listening to the most beautiful music.

It was one of the happiest moments of my life.

And then, when they got me sitting up, I saw a crow fly from a branch. Just seeing this crow, something so common, felt like the most beautiful thing I had ever seen.

Ritika: Do you see yourself as a role model?

Sunshine: I think anyone who gets up and gets through the day is a superhero.

So many people are struggling — with depression, physical stuff, or something else entirely. They have this super-human strength to get out of that.

Sometimes, I look back at the person I was before this accident. I feel jealous of her. I think, “Oh, come on, you could just leap out of bed.”

I had no problems. I’d wake up, exercise, and do all of these things. That could have been me for the rest of my life. But more often, I accept this. I’m grateful for the many gifts it’s given me. Empathy for those who are suffering. Patience. Understanding that the world we think we’re in is a delusion.

I did a lot of volunteering. I really thought that I understood people and had empathy. I did have some. But now I realize that what I had wasn’t empathy. It was sympathy. I felt sorry for others. I didn’t know how to step into their shoes and understand what they were going through. I didn’t get it at all.

Portrait illustration by Kat Cao