What it's like to be an Orthodox rabbi with SPMS during Hanukkah

30 November 2021


Hanukkah (the Festival of Lights) is an important celebration in the Jewish calendar, lasting eight days. We caught up with Gideon, who trained as an Orthodox rabbi while living with secondary progressive MS, to find out more about it and how he's adapted to life with multiple sclerosis. 

Can you tell us a little bit about your MS diagnosis and your initial symptoms?

I suppose I'm not dissimilar to a lot of people in that it took me a long time to be diagnosed. I was probably having symptoms back when I was 17 or 18 and doing my A Levels. I had fatigue and then while at university I got pins and needles from the waist down and in my hands. I went to the GP and the GP said, "It's probably just stress and it's all in your head."

It was a relapse so it did go away but I didn't think it was because I was stressed. It wasn't until another couple of years later when my eyesight went and I had optic neuritis that I went to an optician and he told me to go to A&E. They did all the tests, referred me to a neurologist and then I was diagnosed.

One of my biggest challenges is probably fatigue. It's kind of like having a three year old with a light switch.

Are there any major changes you've made as a result of your diagnosis?

I learned early on that stress exasperated the symptoms I had so I made an effort not to get into stressful situations. I started learning about meditation and yoga and tried to include that into my daily routine. I also tried to shift my diet to one that was generally healthier, this included removing gluten and dairy as I was also diagnosed with IBS.

One of my biggest challenges is probably fatigue. It's kind of like having a three year old with a light switch, whose just playing and switching it on and off and on and off, and you have no control over it. You can have a really good night's sleep and wake up shattered or I'll be busy all day and not get tired at all. There's no logic to fatigue. I have a full time job and I've been an international HR director, which involved lots of flying but I adapted by flying the day before and staying a day longer.

Alongside working full time, you've also trained to become a rabbi. What was it that led you to do that?

I've always been quite a spiritual person and my faith is important to me. I grew up in a traditional household where Jewish and community values were very strong so I always had that in my life, and I wanted to build on that.

There was a lot of learning involved, and it took years. Although I'd done some learning in my teen years, it took nearly seven more to complete all the studies. The final written exams were 12 hours long and that's all before the oral exam. It was heavy going and a serious commitment but it's not just a job as it changes who you are, how you think and conduct yourself. Although I'm not a community Rabbi, I'm now able to use my abilities to support others.

One of most important things about being a rabbi, I think, is being able to give back.

What are some of your favourite things about being a rabbi?

One of most important things about being a rabbi, I think, is being able to give back. It's having that knowledge and experience to be able to support other people. I've been involved with lots of things over the years. I've been a trustee and a chair of governors at a college. That's all about how I can help other people but I think part of the benefit of being a rabbi more than, say, a trustee, is that you can see the benefits and work more closely with people, building personal relationships so that it's much more meaningful.

Some of the highlights have been training other people so they can sit their exams to become a rabbi too. I've had the pleasure of seeing a couple of former students be ordained and that's been really special.

Also, I've been involved with important life events such as weddings or coming of age ceremonies like bar mitzvahs for boys when they're 13 or bat mitzvahs for girls when they're 12, because they're more mature. I've had the honour of being able to officiate some relatives' funerals, which actually has been really special. When people come and say, “Thank you, that really helped,” or “I remember when you spoke at this funeral.” and they remember what I've said, I find that really meaningful. 

You were quoted in the Jewish Chronicle as saying you didn't think you'd be physically able to do the training to become a rabbi, because MS affects your cognition and energy levels. What were some of the things you did to help you get through it?

As I said before, my worst symptom has been fatigue and I also get brain fog so I had to pace myself. I couldn't have done it at the same pace as everybody else. They were doing it full time or devoting every spare hour they could. I know if I'd done that, I would have burned myself out completely.

I worked out very early on in my MS journey that I could still achieve everything I wanted to but things would just take longer and I may have to take a different path. Ultimately, if you want to achieve something, you can, but you've just got to accept that you're not the same as everybody else and find what works for you.

Hanukkah is a key time in the Jewish calendar. Does that tend to be busier for you as a rabbi?

Hanukkah is one of the easier going festivals compared to things like the Jewish New Year which includes the Day of Atonement where you have a 25 hour fast so you're not eating or drinking for 25 hours. You have a lot of praying and while it's all very meaningful and important, it's very heavy.

The good thing about Hanukkah is that, while it's very spiritual, it's eight days of enjoying yourself. Hanukkah is all about celebrating the miracle of the Maccabees managing to get back to the temple. In the temple they only had enough pure oil to last one day but managed to light the menorah every day. The miracle is that it lasted for eight days, so that's what we celebrate.

As a rabbi, it's very much a family and community time. I'll be speaking at various parties and events as well as eating fried food so it does get quite busy. The downside for me is that I was diagnosed as being coeliac a few years ago so no donuts for me unless you've got a gluten free recipe.

It's about prioritising what I can do and managing that.

How do you manage things like your fatigue during these busier periods?

I have to make sure that I don't over commit myself to too many things. It's about prioritising what I can do and managing that. Unfortunately with things like travelling around London, traffic is always busy so that's tiring in itself. I have to consider things like if I want to be driving somewhere or whether getting a lift will help. There's nothing worse than having to let people down so sometimes you have to choose one or two events to go to, rather than a full week of them.

Are there any things you've learned from your MS diagnosis that you might carry with you on your journey as a rabbi?

The thing with MS is that you don't know what you're going to wake up to every morning. What it does give you though, is a greater level of appreciation for things. When I wake up, I don't know if I'm going to be able to get out of bed, what my energy levels are going to be or what MS symptoms may come. Small positives can have such a big impact and as a rabbi, I think that does build empathy and understanding.

With my MS, I wouldn’t be able to walk to the synagogue but I have a special modified scooter, so I can get there on a Saturday.

Are there any parts of the Jewish faith that you have to give more consideration to due to your MS?

There are various rules within Judaism that say when it comes to life preservation, that overrules most commandments. There are multiple fast days a year, for example, but if it's going to cause harm, you don't have to do it.

When it comes to the Sabbath, you're not allowed to use electricity on the spot. You can have your lights on a time switch, your ovens on a time switch and you can prepare your food for the Sabbath but you can't get in a car or watch TV. With my MS, I wouldn't be able to walk to the synagogue but I have a special modified scooter, so I can get there on a Saturday. It works by you having indirect control of it. In effect, you press go and it sets off a process but you don't know when it's going to go so you're not directly controlling it. I definitely get some strange looks as I'm going down the street but I have a special sign on the back that says, 'This scooter has been adjusted for disabled people for Sabbath use.' There are lots of adaptations that are allowed, and which make it easier, and my scooter is an example of that.

What one piece of advice would you give to someone else with MS who is perhaps thinking of making a change or looking to learn something new?

Don't be afraid of doing things. You can achieve whatever is on your bucket list, you just might not be able to go the linear route everybody else does. If you really want to do it, you'll find a way and you'll find other people to help you. In the same way as Hanukkah is about coming together with your family, friends and community, make use of the networks you have, they really do want to support you.