Mona has an ultra-rare neuromuscular disease.
So rare, worldwide prevalence is estimated at one person in 1 million people. Apparently, there are only 40 reported cases in the UK, out of these 40 she only knows about half of them.
Life wasn’t always this way.
It was only when she was pregnant that significant symptoms developed which eventually revealed that she has a condition called GNE myopathy (GNEM). GNEM causes muscles in the arms and legs to become increasingly weak. Symptoms usually occur in early adulthood, just as one is beginning to make major decisions about their lives. There is currently no treatment or cure for GNEM.
Today, 17 years later she is still the same Mona: lively, funny, stylish, generous, a social butterfly and world traveller. The only visible difference to the other person is that she is in a wheelchair as a result of the condition.
In conversation she casually said, ‘I used to feel a lot of shame, but it doesn’t bother me at all now’. As a follower of Brene Brown’s research on shame and shame resilience, I asked Mona to dig deep into her heart and mind to reveal her resilience as shame transformed in her life story.
The story goes like this:
Initial signs started with random trips and falls which were not relatable as neurological concerns to the average person. Family and friends would laugh it off as clumsiness or as though it was all in her mind. This was okay for a while until she started feeling in her gut that it was more serious. The push back and lighthearted dismissal from people continued until rushing into work one day, she had another bad fall. Her knees were bleeding, her trousers were torn and she felt embarrassed, angry and distressed. When she reached her office, a couple of colleagues tried to console her of the shock and then she broke down. One of the colleagues, a professor, advised her to see her doctor as her symptoms were unusual. This was the incident that led her to seek medical attention. This took about three years of never-ending tests, painful and uncomfortable but necessary.
Before the diagnosis came in, and seven months pregnant, she had had a car accident due to the neuromuscular condition. Luckily, no one was hurt, but Mona was shocked, ashamed and scared. She wept and her husband comforted her. They both cried. For the first time in their relationship, he shared a vulnerability story of his own, and how he did not wish for her to be in this difficulty. An authentic moment of love, unity, and sorrow. This moment was a turning point, she knew she had the support she needed. Then, his next words had impact: ‘I don’t want you to be sad about this ever again, because that will not change anything. Whatever happens, we will deal with it together’.
And so they did.
Her body movements and walking ability had started to change. When she received the diagnosis, she was relieved of the certainty as this meant that she had means to explain to people what was going on for her physically. However, emotionally the diagnosis left her feeling isolated and vulnerable. Pragmatic by nature, she didn’t get down but was experiencing an internal panic about how she will cope with her life if the condition got worse affecting her independence.
The disability insensitively progressed. Stage-by-stage she had to find the equipment and aids to support herself - a walking stick, then two sticks, a walker, a scooter, modified cars, adapting her house, her workplace – it seemed endless. She really didn’t want any of this but eventually it was about safety. The idea of eventually needing an electric wheelchair troubled her until a disabled friend said to her, ‘Don’t worry about that, you’ll have more energy’. And she was right.
Mona made a decision to be honest about her condition with family, friends and colleagues so that they didn’t make assumptions. As she expressed her truth she understood that no one was judging her. They had been sad for her situation, but they were genuine also. The idea that this was her new identity was just a notion in her mind, others still saw and valued her for who she is as a person, not her condition. When this aspect of guilt, shame and stigma peeled away, she decided even if it’s more effort, nothing will be compromised. So her contributions to her career, voluntary work, family, friends and travelling, remains her way of life. Her message conveyed:‘I have a disability without it taking away my spirit’.
A deeper exploration into the mindset:
Shame:
Manifested just before and after the diagnosis. Attached to the thoughts of not being able to fulfil being a mother, wife, daughter, daughter-in-law and friend in the way she had imagined she would. She wanted to care for them and now they would have to care for her. Not only is she dealing with the loss of a ‘sense of self’ but also the ripple effect on loved ones.
What Shifted Shame:
When she began to understand her condition better and was able to manage how she informed others about it. Recognising: ‘I am still loved and valued no matter what’. Others made her feel like she can still be herself and this gave her a chance to trust again. When the trust increased, the shame dissipated. When she realised that shame was her issue and not anyone else’s, shame just left. Now, there is a clear path of determination to fulfil her purpose.
Thinking Strategy:
Despite the emotions, Mona knew this was a time for using ‘mind over matter’. Her internal thinking strategy was to tell herself that since her condition is rare, in some way, she is unique. If she is meant to have this condition, then she is meant to do something about it.
Purpose:
Mona is an activist, she is a patient advocate, raising awareness and fundraising for GNEM. She brings people together to be part of a collective 'patient power' movement and is a spokesperson for patients in the UK encouraging others to use their voice in order to impact internationally to support the research for a treatment or cure so we can live in a world without GNE myopathy.
Be an intersectional role model by inspiring people that they can have a disability/be a woman/be a minority and still be happy, just as others have been role models for her.
Uplift and empower others to never give up hope. ‘Alone we are rare, but together we are stronger’.
Acceptance:
In the past, she used to avoid showing her disability aids or anything that revealed her disability condition on social media or photos. As her inner strength evolved and her shame disappeared, she opened up and became her authentic self. Once in a while, she will express her fears, feelings or an image of a new gadget she’s had to acquire in order to adapt to the changes. She is surprised to find that more people respond and engage with those posts than any of her others.
Thankful For:
Healthy heart and lungs. ‘I can still live and breathe’.
Sense of knowing that she has her mind, senses, expertise, and resilience enabling her to flourish and help others. ‘I have my faculties’.
In addition, she feels the condition has helped to know authentic connection. “The disease is a filter because it allows me to recognise those who will help me to ‘climb a mountain’ with them, so I can see experience the view on the other side alongside them”.
'No matter what life throws at you, look deep in yourself, find your own value and happiness so you can be the best version of you'
~ Mona Patel ~
Questions:
What Wisdom Can You Impart?
Don't be so hard on yourself and avoid wasting energy getting angry. If I knew 20 years ago what I know now, I wouldn’t have worried about the small stuff - how I look, my weight etc. Focus on what you can do and do it well, with 100% gusto. Don’t cut corners. Do it from your heart with and positive energy. That is when you will do something to the finest possible standard. The best people I know are like that.
Also, learn from your mistakes, keep adapting and don’t stop developing.
The key is to not to feel guilty asking for and accepting help, as many people are inherently compassionate and it can be gratifying for them when they see you achieve. Stay close to those that encourage you and uplift your soul.
Lastly, keep a sense of humour!
What Do You Want To Be Known For?
This sounds cliché, but I would just want to be remembered for being a good human being and for making people feel - loved, valued and happy. I’d like to be known for transforming adversity into optimism.
What Are You At Peace With?
Embracing my disability and using my limited energy into making a difference. I never think ‘Why me?’, instead I think ‘Why not me?!’
No matter what life throws at you, look deep in yourself, find your own value and happiness so you can be the best version of you.
MONA IS THE 2019 RECIPIENT OF THE INSPIRE WOMEN 'HER-ABILITIES' AWARD, CELEBRATING INSPIRATIONAL WOMEN.
The ‘HER-Abilities’ award at the 2019 Inspire Women Awards for her outstanding commitment to promoting inclusivity in her professional and voluntary work. More about the 'HER-Abilities' award here.
(Left: Mona with her mom. Right: Mona with her mom, daughter, and friend.)
Links & Social Media Support Groups:
UK:
GNE Myopathy here
GNEM Facebook Support Group here
International:
GNE Myopathy here
GNEM Facebook Support Group here