The metamorphosis of a butterfly: in conversation with Joy Alliy

  • The effects of a stroke can be devastating and can differ from person to person. Today, the incidence of stroke in parts of Africa is among the highest in the world. In some countries, including Tanzania, stroke victims face prejudices, and access to the necessary care can be a challenge.

    About Joy Alliy: Joy is a successful lawyer and her law firm, Novita Law, is an Afriwise contributing firm in Tanzania. Last year a stroke left Joy without the use of the right side of her body and unable to speak or swallow. Since then, it has been a long and hard road to recovery, and her story is one of hope and transformation.

    Joy Alliy

    Steven De Backer caught up with Joy to hear more about her inspiring recovery - from the difficult early days to her recently published book, The Metamorphosis of a Butterfly: A Journey of Rebirth, Hope and Transformation.

    Why did you decide to become a lawyer?

    I first became interested in law when I was 12 years old. I read an article in the local newspaper back in Tanzania about the death penalty. I didn’t know much then about the law, except that I knew the idea of condemning a person to death for a crime they may or may not have committed was wrong.

    I formally started my legal career in February 2002 as a legal officer at the age of 25, at one of the best-known law firms in Tanzania at the time, Mkono & Co Advocates. I slowly rose in the ranks and was made junior partner after seven years.

    I was suffering from burnout during my ninth year, and I always wanted to become a dual qualified lawyer. Therefore, I quit Mkono and I took the opportunity during my hiatus to go to law school in the UK.

    After a two-year break and trying for months to get a training contract from a UK firm, I decided to go back to Tanzania, and I joined a smaller law firm. I was there as a senior associate for three years and left in 2015, to start my own firm, Novita Law.

    Shortly after celebrating Novita Law’s 5th anniversary, your life changed dramatically when you suffered an ischaemic stroke. Would you mind telling us a bit more about what happened and your amazing journey since then?

    I started experiencing fatigue around July 2019 but thought nothing of it. I saw doctors on several occasions and they all warned me to slow down. But it’s hard to do so when you are running a business and I tried as much as I could to take it easy. But this was hard for me, as a perfectionist I set very high expectations for myself.

    During the first wave of the pandemic when I was living in Dar es Salaam, I was sheltering and working from home as I am asthmatic. I found myself working up to 11 pm on most days as if was very easy to lose track of time when you live alone. That was when the dizzy spells started. I had a funny spell late one night, which was followed by a series of dizzy spells which occurred throughout the days and nights. I managed to control the dizziness with medication and soldiered on.

    Several months later, when my partner Ross Methven who lives in Edinburgh came to stay with me, I started experiencing moments where I would lose my vision for several seconds. I later came to understand that the dizzy spells and loss of vision were transient ischemic attacks, also known as mini-strokes.

    I woke up around 4 am on 27 September 2020 to use the bathroom. As soon as I turned on the light switch I realized something was wrong. I couldn’t see my reflection in the mirror but my vision was still intact. It was as if my brain was trying to block out my reflection so I would not see what was happening to my face. I tried to speak but no words came out. I convinced myself that I was having one of those vivid bad dreams and crawled back into bed.

    Around 8 am Ross tried to wake me up, but I was not making any sense. He says it was like I was speaking in a foreign language, and my lip looked like a response to an allergic reaction. I was also struggling to walk as the right side of my body was weak. Ross’s initial reaction was that I had suffered a stroke, but he quickly dismissed the idea, as I was too young at 42 years old to have one. The hospital did however confirm his fear, even though I was as healthy as an ox, exercised religiously and did not have any underlying conditions, like high blood pressure or diabetes.

    It has been a long and arduous journey filled with a lot of trying moments. From being able to enjoy fine dining one minute to having a feeding tube down your throat, and 5 weeks of eating blended food.

    I lost mobility on the entire right side of my body, and many cognitive and motor skills, which I had to relearn. I developed aphasia which is the loss of language and communications skills. This affected my speaking and reading which meant I had to learn the alphabet again and recognise colours and numbers as well. I have voice coaching every weekend to help strengthen my throat muscles and give my voice more timbre.

    I also had difficulties swallowing food and it took seven months for me to feel comfortable enough to eat normal food. This of course affected my weight, given that I was already slim before the stroke.

    Additionally, I also suffered from anxiety and post-traumatic stress disorder (PTSD), which Ross managed to catch early. The PTSD was treated with a form of interactive psychotherapy known as Eye Movement Desensitization and Reprocessing (EMDR).

    I understand that since this happened, you have become actively involved in helping people in Tanzania who have suffered a stroke. Can you tell us a bit more about your findings in a country like Tanzania, what is missing? What more can be done?

    I spent the early part of my recovery in Tanzania and noticed that there is still a lot of stigma attached to disabilities, be they stroke-related or otherwise. I witnessed this myself whenever I went out for walks or to restaurants and met people there. We need to normalise disabilities and learn to embrace those who are suffering.

    When I moved to Edinburgh in April 2021, I decided then to set up an Instagram page as a stroke survivor. I was amazed to see that there was a huge online community of survivors who were going through the same emotions I was.

    I also came across a lot of information from stroke organisations in the UK, America and Canada which helped me better understand what I was going through. I decided to share this information on my page as I realised many people including Tanzanians have limited knowledge about strokes.

    The few people who were aware of my condition at the time thought that the stroke was due to high blood pressure. People are not aware that there are other factors that put you at risk of suffering a stroke such as:

    · smoking;

    · being overweight;

    · excessive drinking;

    · having an unhealthy diet with a lot of salt and sugar;

    · not exercising regularly;

    · high cholesterol levels;

    · an irregular heartbeat; and

    · using illegal drugs

    Other health conditions besides high blood pressure and diabetes which also increase the risk of strokes are sickle cell disease, stress, anxiety or depression and sleep apnoea.

    Many doctors are also not familiar with the common signs of a stroke which can be identified using the BE FAST test. The acronym Balance (dizziness or sudden fall), Eyes (blurred or sudden loss of vision), Face drooping, Arm weakness, Speech problems and Time (BEFAST) can help emergency units respond to strokes as quickly as possible. Time is of the uttermost essence when it comes to strokes.

    Do you have any learnings from what you went through for lawyers – young or old – that you would be happy to share with the Afriwise community?

    I would advise lawyers to watch out for the warning signs I mentioned above. Even though mental health is still not receiving the attention it deserves, people should focus more on their mental wellbeing and try not to stress too much. I would also advise lawyers to get good quality sleep and use their vacation time well to properly recharge their batteries.

    Why did you decide to write The Metamorphosis of a Butterfly: A Journey of Rebirth, Hope and Transformation, and what do you hope to achieve with this work?

    I started off by writing a journal as I wanted to remember in real time what I was experiencing. Writing was like therapy for me.

    The more I spoke with my physiotherapist about stroke survivors, the more I came to realise that many of them are not treated well by their families and do not receive the sympathy they deserve. That was when I decided to be brave by sharing my own experiences with the world.

    I wanted people to know, even if it was at a very basic level, the struggles that stroke survivors go through.

    Themes such as empathy and compassion are evident throughout the book, and I wanted to give hope to survivors (especially those who have suffered recently). A lot of motivation is required, and it is very easy at times to want to give up. That is when the metamorphosis comes into play. One does not become a butterfly overnight. It requires a lot of work, patience and dealing with the ugly side of recovery (the mental and emotional struggles).

    Is there anything else you would like to share with the Afriwise community about your road to recovery? And, what does the future hold?

    Many people think that stroke recovery is simply about physical therapy. This is just the tip of the iceberg and there is also a lot of emotional healing involved.

    There is also a lot of pressure on the stroke survivor to get back to work as quickly as possible. Depending on the severity of the stroke and the level of care the survivor received, it is possible for the survivor to return to work within a couple of weeks or months. But each survivor’s journey is different, therefore those who are used to working with the survivor should respect their need to heal in their own time.

    As for what the future holds, I am currently focusing on my recovery and taking things a day at a time…