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The Truth About Me (& My Health)

Updated: Jan 29

Think back to March 2021 when we first revamped the original NBWN website, myself, our ambassadors, patrons and technical partners were delighted to cut the virtual ribbon and throw open the doors on our incredible new website.


So sure were we about it, we even wrote a blog!


It was the shot in the arm the network needed at the time and it was intended to be the stepping stone to bigger and better things for us and our members.


When we relaunched all those 31 months ago, I had big plans for what the site and the network would evolve into over the years ahead.


We had loads of ideas to really turn the National Black Women's Network and eventually SistaTalk into a strong, vibrant, engaged network that would deliver everything our members, including you, had been asking for over 20 years.


So what happened? What was the delay? What happened to those plans? Why didn't we deliver what we said we would? There's one simple reason for all of it.


Me.


Let Me Explain.

The NBWN and SistaTalk have been an important part of my life for nearly two decades. Those that know me, even a little bit, will know me as a dynamo, a go-getter. Someone with seemingly boundless energy and a drive to connect with and to people and help them get ahead in business and their careers.


I've spent my life fighting for equality and inclusivity, not to mention pushing the agenda to support Black women, and women of colour in general, into business and further up the corporate ladder.


Once they were there, I wanted to help push them higher and higher to reach the summit, to be all they could be.


That's what I wanted the new-look NBWN to be when we relaunched over 18 months ago. A beacon of hope and ambition in a world that had changed beyond all recognition in recent years.


We wanted to build a safe, supportive place where we could come together as a community, empower each other and push on as a unified force for the betterment of us all. A foundation on which we could build an online platform to help us to fight harder and stand stronger, somewhere to make our voices heard in this ever-changing world.


For all the plans we had made for the website, life had a very different one for me.


After an incredibly busy (and yes, admittedly stressful) couple of years, I became exceedingly depressed.


My mental health had taken its toll without me even realising it, or at least acknowledging it. There were feelings of acute frustration and disappointment with almost everything I did, both professionally and personally.


Nothing felt good enough, in my mind; our events weren't organised enough, concepts weren't big enough and my hard work just didn't deliver enough for me or the network.


Looking back I see that depression had crept up on me like a black cloud, engulfing me gradually, when I was looking the other way.


As anyone who knew me well would tell you, in recent years my effervescence and my drive were lacking.


I might have put on a happy face, but the depression was always there and gradually it turned to trauma. Trauma grew from behind the mask I had been wearing for far too long.


I woke up one day and found I was simply unable to walk. Literally. I couldn't move my legs at all or get out of bed.


I was in agony. I was lost, terrified, confused and alone. But above all I was angry!


In the week and months that followed, I had what seemed like endless appointments with all sorts of Doctors, nurses and specialists,


I had countless blood tests, MRI scans of my brain and spine. I had CT scans of my chest, abdomen and pelvis and a lumbar puncture, which thankfully eliminated Multiple Sclerosis – phew!


I never imagined my later life in a wheelchair, but for all the tests I'd undergone, the Doctors still could not work out why I was still not able to walk.

So in comes the Neurology Team, headed by the wonderful Dr Dassan at Ealing Hospital (and later, Dr Pritchard, Charing Cross). Dynamic, intelligent and someone you felt you could trust with what was going on when you are in this situation.


I was still suffering from reduced sensations in my lower limbs and Dr Pritchard, the Nerve Consultant, explained I had 'predominant peripheral neuropathy.


In other words, I was diagnosed with something called Guillain-Barré Syndrome, a very rare and pretty serious condition that affects the nerves.


For all the medical terminology being thrown about, it basically meant that my brain was not connecting to my hands, legs. In addition to the pain lI was so weak I could barely move. When I did, it was absolute agony.


On top of that, the blood tests showed signs of Neutropenia, Lymphopenia and Acute Anaemia.


Dr Dassan was clear.


This condition had been building up for a long time, I was hiding behind too much wine and I was in denial. I had to admit that I was in a vulnerable state.


Of course, I made it clear to family and close friends that I did not want anyone to know what was going on and we had to keep my ‘mask’ on.


After a few hospital stays, I ended up in a critical care unit just so I could learn to walk again. My life had been turned upside down.


Now my journey really began.


So What Were the Signs?

Prior to this, I had been bed bound for about eight months with back spasms (pain) which led to a severe form of atopic/discoid eczema.

Atopic / discoid eczema on the legs of Sonia Brown MBE
Atopic / discoid eczema on my legs

Now that was not, and is not a pleasant experience for anyone. As someone who was very proud of my skin (a family blessing on my mother’s side), I was now faced with not only dark, itchy marks, but open lesions.


I tried everything from a range of steroids to wet bandages and still no change. The lesions were now creeping up my neck and heading towards my face.


There was no option but to go 'Rambo style' and storm the Dermatology Department at Ealing to get answers.


Finally, a solution seemed to work. Phototherapy three times per week (and more wine!) ;-)


With that issue solved, I was back to Neurology.


What was becoming very clear to me was that, when I entered Ealing Hospital in a wheelchair, there was an explicit expectation in my mind that they would deal with this condition.


When the NHS works, it works!


I applaud all the Nurses, Doctors, Consultants and even Porters across different departments who gave me the best treatment possible over three stints in the hospital.


I'd never spent so much time in an ambulance on such a regular basis!


Whilst we'd established the symptoms, the cause was still not clear. I was deteriorating fast.


Next stop, Kings Lodge Complex Care Centre (Redhill) courtesy of our amazing Patron Chris Bailan. I started structured physiotherapy with Sid Desian and some counselling sessions (which I ended up quite enjoying).


Although there were people with different levels of trauma, I was impressed with those who were independent albeit in their AI wheelchairs.


They were making the best of their situation with great support from the staff to ensure that not only were they getting medical support, but the social events were over and above what I believe other centres would offer.


My best memory was Christmas Day when I decided to assist the carers to hand out presents to the residents.


Getting ready to distribute presents to residents of Kings Lodge Complex Care Centre

I found it really emotional and also made me more determined to walk (at some level) out of that building.


After playing Santa Claus I sat down to dinner with some of the residents and we talked, reminisced and finally decided to watch the Queen’s Speech together.


It was a bittersweet day of emotions, but I realised it was the best Christmas Day I have had in the UK in over two decades because I am normally out of the country at this time. Albeit my hips would differ!


Leaving Kings Lodge was emotional for me because I was not able to fully walk, but I wanted to be back home to deal with this, with help from Ealing Hospital.


So back to physiotherapy, counselling and consultations. It was difficult at first to manage on my own, but I had to get back on track and I wanted to get rid of the walking stick.


So What Has This Trauma Taught Me?

I had been emotionally angry for too many years and hiding behind the wine and smiles. This strategy was not cutting it anymore. But now….


I am grateful.


Why?


I had to stop and, of course, the NBWN and SistaTalk had to stop too (or at least slow down to a crawl).


You probably noticed fewer posts, fewer interviews, fewer campaigns, fewer blogs and less 'Sonia', but now I hope you understand why.


Although this introspective period of time has been very painful physically, mentally and emotionally; it took this knockout to acknowledge I was out of control.


I'm grateful that I eventually began to understand it was time to regroup, reimagine and reflect on who I was, who I wanted to be and what I wanted to do. Grateful that I had the opportunity to do something many of us don't get the opportunity to do.


There's currently no cure for Guillain-Barré Syndrome and I am still learning to walk again, but I'm getting stronger. A little bit every day.


There are days when I feel good and others when I don't, but I'm grateful that I'm here at all.


If nothing else, this experience has shown me that I have not been operating at my best for a long time. I need to change how I look after myself, physically and mentally, in every aspect of my life. The wine is no longer serving me well.


I have tested relationships which have caused varying levels of tension and anger. Consequently, I fell out of love with the work, the same work I had been blessed to do for so long. I realise now I had become the Queen of Self Sabotage.


However, once I removed my ‘mask’ and owned my truth, I fell back in love with myself, my networks and the exciting prospect of the work that lies ahead. Who couldn't be grateful for that?


This trial and tribulation have made me understand it’s my purpose and mission to do this work, irrespective of the setbacks and health challenges. I understand that I need to respect and become a better steward of the networks.


I am grateful, blessed and motivated to be working with the amazing team at CubeSquared Digital again, who have worked tirelessly translating and implementing my new vision, with energy, passion and patience into NBWN v3.0! They take ownership and drive it forward when I can't.


They've built tools that help me manage the site, with new workflows and new processes to make my life easier and more efficient, so I can focus on myself when I have to and the network when I need to. I couldn't wish for a better team behind me.


It's no easy task because this whole 'life' thing is no easy challenge.


There are still big plans ahead for the site, but we're taking them slowly, doing them in a more time-efficient manner and getting them right for you and me.


Memberships are first, but that's not all of it. We have a new online store coming and new events planned. It might not happen as quickly as we (or you) want, but it's going to be worth our time and patience.


The new site is going to be great, with an amazing new look which we'll unveil soon, so watch this space and make sure you're subscribed and connected with us on social media (including our new YouTube channel).


We will be sharing lots more details soon, but rest assured the resources offered will allow us to better support not only established business owners, but everyone from aspiring start-ups, C-Level executives, business and community leaders, those working from home, those (still) working in the gig economy and those transitioning from the workplace and, most importantly, each other.


Finally, I just want to say that we appreciate everyone who has supported us since 1999 and we hope we can count on that same support going forward.


You belong here and so do I. I'm not out of the woods yet and the coming years will be tough at times, but I'm so grateful and blessed to still have you as part of the network.


If you're ready and willing, let's try this again in the only way it'll work. Together!



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1 Comment


Wonderful to see you back on the horse, Sonia! xxx

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