Swimming with Sharks

Bruce GW Shark2018 appears to be the year of growth change and acknowledgment. The year has offered unimaginable highs of experiences and a number of discomforts.

Malcolm and Goliath

I had a profound conversation with a supervisor about the Goliath that MS is. I described it’s ability to make me immobile, incapable of maintaining my balance, fall over my own feet, the indescribable fatigue and the effects of the dreaded brain fog and non-acceptance of the illness. As an African Caribbean man the illness presents as a continuing battle of identity.

Here I would like to highlight that Malcolm Gladwell has forever changed my perspective on the story of David and Goliath. David a trained marksman and Goliath a lumbering short sighted oaf who simply was nimbly struck down by a swift footed and clever assassin. For the purpose of the blog I’ll stick to the original telling of the story.

MS I shared is like a Gargantuan beast of a disease that strikes at will and takes no prisoners. It is merciless and has no rules of engagement. It strikes and I succumb to it’s malware like intentions like an affected computer system.

The Great White

I was invited to think of MS as a great white shark during the conversation. One can be swimming away in reasonably deep water blissfully oblivious. Under the surface of the water and at a time when one least expects it a crushing bite can unsuspectingly ruin that hard won peace. The shark attack bites and bites hard. There is seldom chance of escape, or hope of appeasement. There simply is the possibility of relapse and further degeneration as the disease kicks into a more progressive form. MS has no known cures. Rest, diet and a host of vitamins including vitamin D, B complex’s, C and A can have a supportive impact. I am currently trialing CBD oil and will write a more informed blog about it’s use.

Walking a Line

The conversation with the supervisor was unique as they have suffered with the illness for almost twice as long as I, and recognise the disastrous impact it has on mood, diet, energy levels, travel, work, friendships, career options and overall well-being. This was the first conversation I have had with a veteran of the disease. I have another friend that I haphazardly talked with about the disease, but they recently moved to New York city. There is something welcoming and nurturing about finding others who are walking a line that looks and feels like the one you are walking.

A New Story

GoliathThe summary of the conversation with the supervisor was that when all seemed to be going well with my career a blow by the hand of fate has paused my star’s ascent. In a moment that feels  both gruesome unkind and resentful my body is attacking itself – unwittingly I am destroying me.

No Running Away From

In That Thing You Seek I sarcastically noted of the gift of MS. I have wanted to kick it’s ass and prove to myself and it that I am not to be cowed by it, deflated by it, undone by it, denied by it. I have lost the ability to run (I used to love to run), have boundless energy, lost my sense of balance, have leg cramps and back spasms, lose my train of thought mid speech: mid-sentence, lose myself to a foggy mind, make miss steps trip and fall, no more shimmy shimmy ya on a Bball court with my sons or with my old Gladiators or Hurricanes basketball teams I once coached.

The Sharp End

Now I realise that this is a war of attrition. The numerous days ahead will be hard won battles just to make the what was a ten-minute walk home now a 15-20 minute one from my local train station. It’s the unseen losses and defeats that I feel will cause the most pain. Turning my imagination over to that uncertainty of a whirling dervish is a torture at this point I will not spend much time with.

For me now it’s a case of joining the MS society, locating a mental health professional to discuss the impact on my self-aspect, accessing the support a great many have offered (I have been too stubborn and too proud in accepting) and begin re-modelling for another type of future.

The last words from my supervisor are that of “I don’t think I do accept this MS stuff actually. Rather, on reflection, I think I treat it like that old adage of keep your friends close and your enemies closer still.”

For me it is a recognition that MS has me and I, like a shark bite, have it!

Taking Control of MS

Dick Gregory

Last Month (May 2016) I received an excited WhatsApp message from a friend who lives and Works in Malaysia – TK.

The message was about an article discussing a revolutionary concept of reducing calorie intake to stop the progress of Multiple Sclerosis in mice. A day later I received another message from my sister EH with the same link to the article.

http://www.telegraph.co.uk/science/2016/05/28/multiple-sclerosis-could-be-reversed-with-calorie-restricted-die/

A Challenge

I read the article which highlighted that mice that had a similar auto immune illness to Multiple Sclerosis were placed on calorie controlled diets and after a number of months showed improvements with their immune systems. In my estimations a challenge had been offered and I willingly accepted: Could I reduce the amount of calories consumed through my week?

The article suggested that the control group of mice that had their meals reduced showed marked improvement. From the article:

‘Results showed that the fasting-mimicking diet reduced disease symptoms in all the mice and cured 20 per cent completely.’

‘They also saw a reduction in the inflammation-causing cytokines – proteins that order other cells to repair sites of trauma, infection or other pain.’

‘And they found that white blood “T cells,” responsible for immunity were boosted.’ Sarah Knapton

2 worthy choices

Since June 2011 I have lived with the knowledge that I have a disease that could get worse limiting my movement and overall ability to perform regular tasks. On receiving the diagnosis I decided two things.

  1. Regardless of the diagnosis I was going to live as well as I could
  1. If I found a way to slow or stop MS from worsening I would in the least do whatever was necessary to limit the effect of the relapsing remitting strain of Multiple Sclerosis I have.

Can MS be Managed With Diet?

I was introduced to a book titled Managing Multiple Sclerosis Naturally in December 2011. The idea that foods could be involved with managing my autoimmune response was a new and challenging one. The aim would be to assist the T cells that attacked my nerve cells and myelin membrane around my nerves to recognise the difference between foreign bodies and my cells.

The Paleo diet and other MS diets were tested. The longest time I stayed with these diets were for 6 months. I stopped the diets for a few reasons.

1  I felt terrible,

2  I witnessed no upside to the strict diet of no bread, no cheese, little – no red meats, no legumes or modern pulses, certain fruits were also off the menu and I lost a considerable amount of weight.

3  As a slim person, the thought of losing even more weight and being called Skeletor by one of my sisters CF, was enough to halt this experiment.

Experimentation With Diet – Cut

I had tried and failed to heal myself with diet. December 2012 – May 2013 was a useful length of time to try something new out. What I found funny was how fastidious a new diet enabled me to become. I often had friends ask if I could or would eat this or that food. In all honesty I had become a pain. Which was a problem for me. Being obtuse and by being awkward about what I was and was not eating I saw as not a good cause for friend’s and family’s discomfort. This dieting nonsense was not what I had signed up for. I brought the experiment to an end and ate what I wanted to, the disease progressed as it would have done had I not interrupted it’s ruining affect with the annoying diet.

Multiple Annoyances

My experience of the illness is mainly challenged by fatigue, brain fog, spasms in my legs and back, weaknesses in my hands and forearms, dizziness on standing and changing my heads direction when walking, stairs have become my nemesis. Tripping stumbling and falling have become a pre-occupation and a daily experience.

TV – Dashed Hopes

Earlier this year a TV show highlighted that if an MS sufferers immune system was rebooted there was a large chance their symptoms of Multiple Sclerosis could be halted or even reversed. The treatment costed the NHS between £25-£30,000 and is currently on an experimental basis for those that screen in to the study. If I had been asked, I would have jumped at the chance to be involved with the experimental procedure to live with a reduced or no continuing symptoms of the disease.

Another Way???

However, the reduced calorie diet was immediately accessible and I thought I could at least give it a try. On Monday’s Wednesday’s and Friday’s I do not eat until 12:00 pm. Effectively not breaking my fast for between 14-18 hours 3 days a week. Just like those mice! A few years ago I read ‘Callus on My Soul’ by Dick Gregory. (Picture Insert, above) The book, a Christmas Present – from Ananta (cousin), observed Dick Gregory’s life. The book inspired me to think differently about food consumption, protest and activism. Mr Gregory wrote about engaging in hunger strikes for various humanitarian causes. The book was like a wake up call for me. I was fortunate enough to see Mr Gregory speak at a community centre in Harlem in 2000. As a comedian he had the room in uproarious laughter.

I chose to engage on my first fast during the time of Ramadan in the winter of 2001. I successfully observed the 28/29 days of Ramadan and gained a new level of respect for those who are able to successfully give up various comforts for a higher ideal for a specific period of time. For the next 3 years I observed Ramadan and did not eat or drink during the fasting period. I gained strength from the knowledge that others all over the globe were also fasting.

What If?

I am to observe a 6 month fast to relieve the experience of Multiple Sclerosis. If it works and reduces the inflammation, brain fog, tripping and falling, spasms, and dizziness then the effort will be a worthy venture. If the experiment causes nothing more than a slightly better way of appreciating food and overall health then that will be an outcome I also can acknowledge as being a beneficial one.

As I enter my 6th week of the experiment I have noticed a few things that are not like the Paleo diet. I haven’t lost as much weight, I am continuing to eat what I want,  chocolate, bread, red meats, cheese, nuts, fruits, and everything that I would have eaten pre 2011 are joyfully consumed.

Noticing my energy levels remain high, especially during the fasting periods, and do not have me look for a pillow a quiet and dark place to catch a nap in – have been wonderful. The brain fog that had besieged me since before the diagnosis in 2011 has dissipated. It feels like I can think, and create at a high functional level. Before, it felt like I had to pull my thoughts through thick treacle to get any degree of coherence together and then be spoken.

I have noticed that I am tripping and falling less. The dizziness/vertigo and occasional spasming remains but I feel more hopeful about the illness and how I am tackling Multiple Sclerosis. My aim is to again complete 6 months of a calorie controlled diet and note the effects on my experience of Multiple Sclerosis during this period and into the New Year.

Whatever the outcome, I recognise that change is a sought after part of the experience, and I look forward to whatever that may be…

Belonging v Fitting In

Confusion 2015-05-25 15.32.10

There are many reasons that I have wanted to write a regular blog. Mostly to share a perspective on things I experience from bewildering and conflicting perspectives. These perspectives include myself as a thinker, a past time of mine since I was a young man.

  • A black male psychotherapist, three words that cause me to pause and reflect on the meanings that are associated with each and how these three words interact with each other and with the social fields I come into contact with on a daily basis. I suspect a blog about being a black male psychotherapist is to be written in time.
  • Being a father of 2 young black boys the responsibility I am presented is to support their development in being able to simply just be. With Janelle Monáe’s Hell you Talmbout I recognise that my involvement with my sons’ lives is of primary importance and one in which I am invited to be an educator, coach, listener, artist, co conspirator, chef, journey planner and Doctor. Ta Nehesi Coates speaks and writes well on this subject in his book Between the World and Me.
  • Some of the other roles I engage with are; as a member of a mental health organisation working alongside probation and with service users, as a husband, as a lover of jazz, a reader, a former interior designer, youth worker, comic book reader, movie goer, longboard rider, podcast listener, basketballer and coach, friend, walker, facilitator and multiple sclerosis sufferer. This list is not exhaustive and there are probably at least 5 or more subjects I could add.

Fitting in, Belonging

For this blog I wanted to discuss an awareness I sensed but hadn’t fully brought into full consciousness until I came across it whilst reading Brené Brown’s ‘Daring Greatly’. One of the concepts she was able to describe was a simple concept of either fitting in or belonging. At the time of reading ‘Daring Greatly’ in Oct – Nov 2015 I was experiencing what it meant to either ‘belong’ or to fit in.

2014 into 2015

Working for a large organisation with a group of people one knows vaguely who each have slightly differing roles and responsibilities to yours, there can be points when you are offered a chance to either fit in, or if lucky to choose to belong. When I joined the organisation I attempted to go with the flow and fit in.

Fitting in often does not cause great offence to others ‘no boats are rocking’. Perhaps in oneself the effect is of losing grip on what is important – oneself and one’s reality. Losing sense of oneself can be unsettling and what could be worse is not realising that your way is lost until you are saying and doing things that you don’t recognise.

In December 2014, I left an experience of belonging to a staff team in a high security prison and joined the organisation I currently work with in January 2015. The mental health team I left consisted of Psychiatrists, Social Workers, Nurses, Counselling Psychologists, counsellors , an EMDR counsellor who was also my line manager and supervisor, Occupational  Therapists, and counsellors on placement.

HMP Belmarsh’s mental health team was a robust co-operative, co-ordinated group of professionals that met every week to discuss mental health referrals. It took me 2 years to get used to the quick fired nature of the referral process and dissemination of potential clients to departments within the mental health team. In the last 2 years of working at Belmarsh I gained a sense of how valuable these differences amongst the mental health team were as Social workers would have a different perspective to Psychiatrists or CPNs another opinion to Occupational Therapists and counsellors to counselling psychologists.

With these differing opinions in relation to treatment options, barriers for individuals seeking treatment were overcome and mostly resolved. The experience I had was of belonging to a staff team who were willing to work together for the greater good of those seeking mental health support. I was able to recognise that differing viewpoints can be supportive rather than only negative, that can appear to slow or block progress.

A reminder

Whilst training as a counsellor 2008-2011 I had experiences that were of not being able to neither fit in nor belong. I was one of a few minority ethnic people on the course and one of only 3 males that completed year 1. Struggling alongside 18 other students on a bewildering counselling MSc course, I would have thought would generate a sense of belonging or camaraderie. My experience was that of being outside of a group of people who were able to exist in a quasi-understanding of fitting in with each other.

I made a choice in October 2015, which was supported by Daring Greatly, that fitting in was not going to be how I operate whilst working with others. Belonging was a better coat to wear. I had been in a number of previous working experiences pre Belmarsh were belonging was a part of the fabric of the organisation.

Currently I find myself reminded of my training to be a counsellor and the discomfort of attempting to fit in amongst a student populace that I was to belong to, but was different from.  The knowledge of being an outsider from a group is not a new one and has the possibility of offering me an internal conflict which can lead to personal growth.

Reality

The reality is that the experience of belonging or fitting in will repeat in whatever work context I find myself involved with. The interesting thing for me is that I will attempt to gain a sense of belonging wherever I work. The cost of attempting to fit in I find too great. It’s the experience of not sharing your perspective on subjects you care about, of fearing that you will be ostracized by people you work with, finding that you stand out and being uncomfortable with this.

Belonging

Being amongst a group of others I would find it important to relate and talk about any number of subjects on a number of different levels and not be judged or ridiculed in my sharing. Depending on a person’s background and family of origin the aim could be to gain a sense of belonging similar to that of a family system. Perhaps without some of the negative aspects of a family group. For me it’s about the feelings that come with the experience of recognising that one belongs. Which feels very different to fitting in.

I would liken belonging to hearing a favourite song by chance whilst out doing something innocuous. The song I would be happy to hear would be Ooh Child by the Five Fairsteps and something like love spreads throughout your system like you’re in a hot bath.

My experiences of belonging are many-fold, for example attending my first BAATN mens group and mentioning that unlike Ralph Ellison’s Invisible Man I WAS being seen and heard by the group, and that I also belonged. Coaching basketball in a number of settings was the epitome of gaining a sense of containment attachment and belonging for every team I coached and for all that attended. My sense of the Experiential Group even though I was the facilitator, I felt part of the group not apart from it, lastly, when my family get together we express our love in volume but each member receives that warm bath feeling…

Belonging.

Daring Greatly

Admitting defeat.

Ignore

Be so

In September 2015 I spent a few days reading a book by Brene Brown called Daring Greatly. The book offers the idea that owning our vulnerabilities makes us stronger, or better at not fearing our lives. Daring greatly as an idea has struck several chords for me as I have lived in fear of discovering that my disability might prevent me from doing my job well enough.

I have spent the last 6 years developing my craft as a counsellor and Mental Health professional; working in the community in private practice, at a University as a Student Mentor, in a prison as a counsellor / psychological wellbeing practitioner and as a Forensic Mental Health Practitioner for Together. I thought I should aim to be better than good. Better than I thought that the disability would somehow stop me from being. In the profession this type of thinking is identified as over compensating. I can put my hands up own that I do that.

I have Multiple Sclerosis. It is a disease I have struggled to live with for 6 years since being diagnosed in 2011. I can remember the day that my doctor at Moorefields Eye Hospital reluctantly told me. I felt huge waves of anxiety lift. I dreaded that I might have a terminal disease like brain cancer. I might not be bright enough for that. I was also intensely angry and sad. As I imagined that my dreams of being a brilliant professional had dimmed due to my understanding of what Multiple Sclerosis is.

My struggle has been, I have not wanted to admit to myself or anyone that, I have an incurable disease. A disease that has enabled me to take a good look at myself and reflect on the past 30 years of my life. Over the years there were signs of the disease which hinted at a serious nervous system malfunction, that just wasn’t identified after multiple misdiagnoses. The most frightening was at 22-23 I suffered with a 6 month experience of the left side of my body going into spasm after exerting myself. A doctor I saw identified that I might have an inflammation in my lower back that flared up when over stimulated this part of my body. He requested that I hold my breath through these episodes and either sit or lie down until the spasms had passed. The humorous thing for me was this was a sign of MS and it was missed but his advice worked.

I looked into the mirror on a particular morning in October 2015 and said to myself “I am going to have a great day.” On this particular day I struggled to make it to work on time and tripped and fell hard on pavement, partly due to the fact that I was rushing and partly because of my balance and co-ordination and tiny calculations in gait and flagstone pavement height that I struggle to compensate for felled me. This morning was not what I had in mind as a “Great day”. But a day is 23 hours and 59 minutes and 59 seconds long, I just had to wait for the rest of the day to unfold. It did get better.

For 6 years I have wondered about not letting my secret out as I had not wanted to give others insight about my weakness. But as the book ‘Daring Greatly’ describes, admitting where you are weak is a strength that is indescribable for what it offers: release – a sense of liberation. It feels like for a long time I have lived in a cell with a high barred window. I could hear and smell the seasons change and birds chirping, but the scant amount of daylight that entered my cell was not enough for me to grow strong. I have hidden my illness as a result of how I believed others who may never meet me might judge me. Now I am beyond the cell, and striding into sunlight.

On the day in October where I said to myself “Have a great day”, I attended training at the head office of the organisation where I work. The training was on motivational interviewing and I was invited to share a real story with a colleague about something I had wanted to stop doing. I mentioned that I wanted to stop living in fear of this secret of my MS secret getting out. My colleague EK allowed me to think about what changes I could implement. Owning my flaws, my weakness, bearing to be vulnerable could actually be my biggest ‘to do’.

It scares me as to what this may mean for me and my family, my business and my future. However I already realise that by writing this and then sharing this a huge boulder that I have been pushing much like Sisyphus is now gone. I no longer need to hide it. I have accepted that I have a disability and it does not define my star’s ascent.