Welcome to Inside Vivek: a post for Mental Health Awareness Week
Writing about my journey through life with mental health has been a cathartic and liberating process. I’m usually quite hesitant to share my mental health issues, as I’m the type of person who likes to deal with those issues myself.
Speaking honestly regarding #MentalHealthMatters is crucial to facilitate change by breaking down unhealthy societal barriers. This topic is fairly easy to ignore as your mental state is not clearly visible. Similar to an iceberg, 90% of your mind is hidden underneath the surface.
We all have our demons to face, challenges to overcome and our minds to control. Unfortunately, many people have more hardships to cope with in life. A common misconception is that disabled people always have mental health issues connected to their disability, this viewpoint is (generally) incorrect. Disabled individuals face the regular challenges of life along with additional environmental barriers, physical limitations or lack of disability awareness.
Mental Health is not fixed to a singular point in time but a flexible continuum, I consider the baseline emotion to be stability. I try to keep my emotional state quite stable to prevent dramatic fluctuations either up or down. Feeling Anger, Anxiety or Excitement is physically tiring for me. I don’t have a large energy store so I have to efficiently manage energy levels. This does not mean that I’m an emotionless being (like Spock from Star Trek) because I do feel joy, excitement, sadness, anxiety & (at certain times) anger.
My tip for a good coping strategy or for staying positive is (I know this will sound clique) but you need to have a good sense of humour. Finding a glimmer of ‘funny’ in a terrible situation has helped me well over the years – a laugh is much better than feeling bitter or angry.
“Life is too important to be taken seriously.” – Oscar Wilde
Life has been quite challenging for me emotionally, psychologically and physically. On reflection, those earlier challenges have taught me invaluable lessons on emotional resilience, compassion, positivity, independence and self-respect. Without living this life, I would never have grown into the positive and confident man I am today.
I was born with the bleeding disorder Haemophilia so life was already a struggle, I had to be careful not to fall on toys or hurt myself. When I began to show signs of weak muscles I was referred to the neuromuscular consultant in Leicester who for 6 years wrongly diagnosed me with a curable condition called Polymyositis. It was a nightmare for Mum to battle with the consultant to find out what was wrong with her son. I was correctly diagnosed at age 9 which allowed me to access the correct care and finally receive a wheelchair. It was tough coping with the news but finally getting to sit down in a wheelchair and not struggle anymore with walking was welcomed.
I hadn’t fully understood my condition but as my body began to obviously limit my abilities, it hit me like a bus that my muscles would never function properly. I was really depressed/angry at that time so I didn’t care about school, playing with my toys or the future. What was the point of living? It wasn’t fair that other children could walk, run or even have a positive future.
My anger manifested when I couldn’t do an activity due to my progressive muscle weakness. I became jealous of my sister being able to do all the activities I couldn’t, like riding a bike instead I had to do physiotherapy exercises 3 times a day which were painful, exhausting and boring. The frustrating part was my inability to physically release those pent-up emotions properly. One day when I had an argument with my sister, I got angry so I decided to go to my room, I tried to close the door but instead, my footplate went through the door. That hole in the door is still there to this day as a reminder of what I was like.
“Unfortunately, unless we’re focused on building up our courage, which gives us our self-confidence and all that we need to make a quantum change in our lives, the voice of fear will always take the lead inside our minds.” – Debbie Ford
I had to leave the private school I attended because it was not wheelchair accessible so I had to be carried upstairs by the teacher. Leaving my friends was difficult. When I was finally provided with a wheelchair, I moved to a more wheelchair friendly school, I loved school as I made amazing friends (most of them were girls). Funnily enough, I had to say goodbye to friends again because we had to move from Loughborough to a bungalow closer to the Leicester Royal hospital.
I had to close my mind off from the past, psychologically manifesting the physical change I was enduring so I became a different person. I had lost all trace of my old identity, confidence, motivation and future prospects. I no longer thought of myself as a happy or confident boy only an empty shell. It’s only recently that I’ve managed to reunite both parts of myself. It was a difficult achievement as I had to learn to respect & love myself. At the time it sounded like an impossibility.
“Never expect people to treat you any better than you treat yourself.”
– Bo Benett
After my diagnosis, my parents got a divorce so Mum had to manage my care and run the home alone. As any child would, I blamed myself for the divorce but looking back it was the best decision for the family.
After scoliosis surgery at age 13, I spent most of my time isolated in my room – literally bed-bound. The reason was that my NHS provided wheelchair was uncomfortable as I was unable to alter my position independently which caused pressure sores and internal bleeds (due to Haemophilia). This meant that I was unable to attend my special needs school, so I was taught at home by the Hospital School whilst waiting to hear if the charity Caldwell Trust would fund my wheelchair. During this period, I learnt a lot about myself as it gave me the chance to look inside myself and try to work through my mental state.
“To know oneself is to study oneself in action with another person.“ – Bruce Lee
Attending Ashfield the special needs school in Leicester was good for me as I was around children with similar abilities and I received physiotherapy and hydrotherapy. However, in secondary school, they did not focus on academic achievement as the classes had mixed abilities. I felt that I wasn’t pushed enough to reach to my fullest potential, I personally aimed to get 5 GCSEs to enable me to attend my local college. After finally passing my GCSEs I moved on to college, however, the mentality from Ashfield that ‘college will be too difficult’ was engraved in my mind as I had issues with stringing sentences together and I thought I was not as intelligent as my able-bodied peers. I discovered that my fears were wrong – I could manage. I just wish that I was a student for longer than 2 years.
I battled with low mental health during my transition from children’s services to adult services as I was faced with so many overwhelming decisions. My Social Worker seemed to force me to move out of my family home. I felt that I was not in control of my life and living in the wrong way. This led me to decide to start taking more responsibility for my condition and care rather than relying on my Mum to make decisions. Gaining more autonomy of my life was the crucial transition into adulthood which meant that I was still independent living at home.
My Mum has always been a great support for me throughout life as we can discuss anything. Growing up she always made sure that I live a happy life but also prevented me using my disability as an excuse to behave badly.
“The greatest gifts you can give your children are the roots of responsibility and the wings of independence.” – Denis Waitley
Losing significant muscle function at certain periods in life has been difficult to cope with especially the loss of respiratory function & hand strength. I do still find those days depressing, having to accept another loss of function is almost like a continuing bereavement process. I now consider Duchenne that annoying friend you can’t get rid of so that it is easier to cope with.
I always try to let my negative emotions go by accepting them so that I can look at the loss objectively and try to find a solution. For example, after struggling to carry on gaming using the new PS4 controller I became frustrated and angry as gaming was my main hobby. However, after looking at the issue objectively I began to search for solutions which would help. This research connected me to amazing gaming charities such as ReMap and Special Effect who were able to help. Thanks to facing this problem I now focus my work on improving gaming and assistive technology.
“Small shifts in your thinking and small changes in your energy can lead to massive alterations of your end result.” – Kevin Michel
I’m generally a positive person when I wake up, as I check my mental state, try to understand the reason if I have negative mood and hopefully find a solution to the problem. I’m not suggesting that keeping positive is always easy for me, especially if there isn’t a solution available.
As I was growing up it was suggested that I see a Psychologist who could help me to cope and understand my emotions. After a few sessions, I felt that it was not helping me as they could not truly empathise with my condition without living with it. Initially, the sympathy was useful but it only took me so far. Therefore, I realised quite early on that somehow I had to find a way forward by myself. So I started to think of ways to help myself by looking into what I enjoyed doing which was reading. One day I visited the local library and was excited to find a new section filled with comic books. I think I have read every single comic book in Leicester. Suddenly I realised that I was feeling happier whilst reading because I could still physically turn pages or hold a book. My mindset started to shift away from my limitations to focus on things that I could still manage to do. I can no longer hold a book or turn pages but thanks to technology I can read online or on a Kindle eReader.
I think that finding a hobby or interest helps immensely with mental health. My passion for comic books began during my isolation in bed, it gave me the ability to escape my situation. I remember that the first comic I read was Star Wars: Outlander, learning about the Jedi code about controlling emotions such as anger, fear or hate really resonated with the emotions I was battling with inside. Green Lantern taught me the most, as he uses the willpower from his lantern ring to overcome his greatest fears. It’s only now that I’ve realised those comics/superheroes helped me to understand myself, morality and determination thus shaping me into the man I am today.
Through reading comic books I thought that I’d found a perfect coping strategy for anger, if I was reading then I’d feel okay. However this coping strategy was definitely not healthy, it was another way for me to detach from the reality I felt trapped in. I underwent extreme anxiety if I ever had to participate in the ‘real’ world. So my anger was replaced by anxiety, which affected my body in a different way – it manifested as a stomach ache and nausea.
“What lies behind you and what lies in front of you, pales in comparison to what lies inside of you.” – Ralph Waldo Emerson
Working with Trailblazers the young campaigner’s network from Muscular Dystrophy UK at the age of 20 was a big step for me, I was extremely shy, quiet and scared to speak. Trailblazers were really encouraging and gave me faith in myself. I gained vital communication and public speaking skills through active campaigning, asking questions at APPG’s, being interviewed by BBC, ITV Central, Leicester Mercury and Radio Leicester. It led me to win the 2012 Trailblazer of the year award. I’m now an East Midlands regional ambassador for Trailblazers, actively fighting to improve NHS provisions for the disabled community in Leicester.
Muscular Dystrophy UK has provided me with some amazing opportunities for growth over the years from work experience to my continuing work with Microsoft UK. I’m passionate about improving assistive technology from the top of the technology industry – it’s the future.
The next huge leap forward for me was in December 2017 when the Founder & CEO of The Muscle Help Foundation Michael McGrath chose me to become the third Muscle Ambassador, alongside Sulaiman Khan & Leah Booth. The Muscle Help Foundation is a small family charity delivering “personalised, transformative experiences called ‘Muscle Dreams’ for children and young people with Muscular Dystrophy and connected neuromuscular conditions.” Joining the tribe is a big responsibility but the opportunity for professional growth was hard to decline. Learning from Michael McGrath is invaluable, his motivation pushes you to not only make your future better but also the future for the next generation. Interacting/Speaking with fellow ambassadors, families and beneficiaries is why I joined, at that age I would have loved to have met an adult living and achieving with Duchenne. I really look forward to representing the MHF tribe at their annual Porsche Muscle Dream Programme in June.
Recently whilst listening to Michael McGrath’s powerful closing talk ‘The Power of the Polar Hug’ at the TEDx 2018 event held at the University of Warwick it struck me that by exposing vulnerability Michael dared to defy fear thus creating a bigger statement to the world. Exposing this truth means that Michael connected with hearts, therefore, the central theme of a hug which is kindness, compassion and love. I’ve never been able to hug someone for over 15 years, this has made it harder for me to express love especially since I now find smiling tiring. I reflect on those situations where I wish I could have given a hug, we all want that intimacy in our lives. As Human beings, we all need to rely on others, this is not a weakness but a strength. Community support is necessary to help with mental health issues.
“If you always put limit on everything you do, physical or anything else. It will spread into your work and into your life. There are no limits. There are only plateaus, and you must not stay there, you must go beyond them.“ – Bruce Lee
Thank you for reading – I’d love to hear your story, please comment below!