The Invisible Rain Cloud

I’m of the opinion that TBI sufferers or any alike know best about how they feel daily more than any human experts using human intelligence. They maybe able to know better if the findings are aided by some superior algorithm intelligence or as such.

Only you can hear the whispers of your aunthentic self. Lastly it is within you to enlighten the world by sharing your invaluable dark secrets.

Unstoppable María

As much as I write about my brain injury, I sometimes feel like I can’t really explain exactly what it’s like. Everything I read says different things about what it feels like but that’s not always what I feel. I don’t know if others feel the same way but as much as I try to share and be open about it there are still some dark spots I’d rather not share.

What everybody sees is the outside, not the darker things inside, and sometimes it’s better to not share those parts.  Then when you read things it feels like you’re going through something completely different than everybody else with the same diagnosis.

Until you hear something that sounds familiar. I found that in The Invisible Rain Cloud, a story about what it’s like to live with a Traumatic Brain Injury. It was like reading my mind, it’s a video truly…

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Recovering from TBI (Traumatic Brain Injury)

The brain is complicated, for instance I sustained a brain injury. When I look in the mirror, the left hand side of my head near the forehead, is where my skull fructured. Due to the Brain injury, movement in my right upper and lower limbs was affected. Yet science acknowledges that the cerebellum, which is located below the cerebrum, is the part which controls balance, movement, and coordination (how your muscles work together).

Traumatic Brain Injury (TBI

brain injury from www.facebook.com tbilifecoach

picture from http://www.tbilifecoach.com

Also see https://traumaticbraininjurytbi.wordpress.com/2019/01/02/traumatic-brain-injury-survival-guide/

https://recoveringfromtbi.com/

and

https://recoveringfromtbi.com/great-traumatic-brain-injury-doctor/

doctor

from a Google search (my “filing system” to rescue me from “sheer utter chaos”, thanks “BIG G”)

https://www.google.com/search?rlz=1C1CHBD_enNZ767NZ767&q=marc+macialek+brain+injury&sa=X&ved=0ahUKEwjlqvaGz9XfAhVZdXAKHUn0Aj4QgwMILA&biw=1024&bih=355

neurons.jpg

You may also find this link to be of interest

https://traumaticbraininjurytbi.wordpress.com/2018/12/28/the-immediate-aftermath-and-consequences-of-traumatic-head-brain-injury-tbithe-immediate-aftermath-and-consequences-of-traumatic-head-brain-injury-tbi/

“We share what we know, so that we all may grow.”

“Sharing, supporting, informing,  enlightening, “entertaining”(??), encouraging, empowering, enriching, challenging, igniting, uplifting (and perhaps even) inspiring”

enough there for now, c!

My other blogs in this area are at

and
“We share what we know, so that we all may grow.”
“Knowledge is the gateway to understanding…and understanding is the gateway to a better life.”
– Jeff Sebell
Shining a light of hope  in the darkest corners
Helping promote better understanding and awareness of what is often termed “The Silent Epidemic” (and/or “The Hidden Handicap”)
“Inform, educate, inspire”

PS

“We didn’t have…

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Headfirst Thrills on Wheels

Have you ever read a non fiction thriller?

Independent wheelchair globetrotting feels like one. Search my name “Max Mteliso” on Amazon and buy the suitable edition for you. I will recommend people to buy the kindle edition. For paperback I encourage you to buy it from lulu.com- simply enter Headfirst Thrills on Wheels or my name. Enjoy the unputdownable novella: thrilling, enthralling, inspirational, motivational and above all enlightening. I think I just wrote a new and perfect blurb for it.

Find it here:

https://www.amazon.com/dp/B07L9FWWB9

Headfirst Thrills on Wheels (wheelchair globetrotting and dealing with the Consequences)

Kindle: https://www.amazon.com/gp/aw/sitb/B07L9FWWB9?ref=sib_dp_aw_kd_udp $4.99

lulu: http://www.lulu.com/shop/max-mteliso/headfirst-thrills-on-wheels-wheelchair-globetrotting-dealing-with-the-consequences/paperback/product-23849403.html £9.99, Paperback

Amazon: https://www.amazon.com/Headfirst-Thrills-Wheelchair-Globetrotting-Consequences/dp/0244415498 $12.43 Paperback

Eventually, my novella is out: “Headfirst Thrills on Wheels”. The best words to describe it are thrilling, enthralling, inspirational, motivational and enlightening. A non fiction thriller. An account of my independent travels across the globe as an ordinary wheelchair user. The book highlights the challenges that I encountered as well as the enlightenment.

It might not be a hit but I guarantee you that somewhere and somehow, it will touch the minds of think tanks. The novella is also a good read packed with humor and impeccable English. Above all it inspires the wheelchair users and disabled people alike to travel further afield independently.

NB. I would encourage people to it on kindle while it’s selling at a reduced price of £3.99. The paperback is not yet available on Amazon. However I prefer it if people purchase the paperback on lulu.com £9.99.

*Success is a community effort therefore I need your support.

TBI Effects: My view point

Intensive Care Unity, Leeds General Infirmary (LGI) with Juliet Dube (sister)

People who have experienced the mercy of God first hand after a near death experience feel obliged to share a message from the other side. Actually I stared death in the eyes, the traumatic brain injury (TBI) would have rendered my life pointless if I had let it.

As a result of the acquired brain injury I sustained in November 2002, I can’t recall the events leading to the ruinous car accident. However I recollect waking up from a coma in an intensive care unit after a several number of weeks. My right arm was constantly clenched and numb, neither could I seat up nor feel my legs, lo I was freaked out. I thought to myself I must be in a South African hospital. Rationally, I knew that I wasn’t in Zimbabwe because the hospital staff were predominantly Caucasian. Many white folk had left Zimbabwe following the seizure of white farms. However even before that there was hardly any white people working in the public sector. I couldn’t ask because I had lost the ability to speak (aphasia), the only way to draw attention was to conjure up cacophonous racket with the lingering breath in my lungs. When I was transferred to a ward with other patients my bed was next to a white bloke who introduced himself to me as a South African (SA) which coincidentally reinforced the notion that I was in SA.

In January 2003 after I learnt how to speak a little coupled with gaining a little bit of strength to at least press a buzzer I was transferred from Leeds General Infirmary to Chapel Allerton Hospital, Leeds for further rehabilitation including speech therapy. My speech therapist was called Tory, a lady from Scotland. She wanted me to pronounce words in a certain way and I remember easily getting frustrated due in part to my brain injury. As a result I gave up “Tory you are Scottish and there is no way I will be able to speak like you, all I need is for my family and doctors to understand me” I recall quitting speech therapy. Quitters never win and winners never quite, I wish I knew that at the time but my mind was deleted, premonitions and vagaries were the order of the day. My thoughts were plagued by misery and despair thusly moods used to rage like a storm. I used to become sad just thinking about my sad life, that was the saddest, darkest and lowest point of my life I had hit ‘rock bottom’.

Slowly I started to feel my legs and I commenced Physio sessions as well as Occupational Therapy. At first I learnt to be up on my feet using a Zimmer frame, boy I loathed it because I had never seen a young person gliding on one before, I was only a teenager but on the eve of adulthood. I wanted to be cool and I couldn’t envisage the young me running an errand in the morning pushing a frame through the alley ways. However, physio gave me a glimmer of hope, henceforth I became courageous and worked hard aiming to walk independently. “To be honest with you, you will never ever be able to walk without a walking aid” Amy my physiotherapist said after I asked her to give me a candid opinion. I guess she was right wasn’t she because I tried and tried again but I was never able to put my foot in front of the other without a walking aid. Crutches are now part of me like my limbs. My Occupation Therapist was called Nicola from New Zealand about the same age as me. Cool I thought she was, disappointedly it wasn’t until Community Rehabilitation that I started having occupational therapy sessions on a regular basis.

Urinary Catheter and Constipation

Admittedly I didn’t know if unconscious folk poop or not, so after I googled I found the following answer on Reddit:

Ex hospital tech here.

I used to work in a lot of ICU’s and was the person in charge of cleaning up sh*t. Literally this encompassed half of my daily job duties in an ICU.

When people are unconscious whether it be medically or chemically induced (some patients are given drugs to induce an unconscious state) they still poop. Most are given a stool softener so it will pass easily. So 90% of the time their poop is the consistency of gravy.

However after the comma I remember suffering from chronic constipation and I had a catheter for a long time which I used to go to Physio sessions with. It was a funny site to see other patients coming from Physio walking with the catheters dangling on they legs. However, one guy in particular was very tall and gangly wore shorts revealing his disgusting thick piss because he hardly drank any liquids unless encouraged by the nurses. On a lighter note I loved it because I didn’t have to visit the bathroom so often particularly when drinking, back in the day beer used to loosen my tongue. I remember when my friends took me to a pub in Chapel Alleton, “how come you are not going to the toilet?” One of them wondered because he couldn’t see the catheter concealed under my baggy attire.

Ward 2 Chapel Alleton

This is a special ward to rehabilitate acquired brain injury sufferers both traumatic and non traumatic such as stroke & meningitis. During the coarse of my stay there I had the opportunity to live with brain injury survivors alike all with different behaviours. I seek to briefly analyse their behaviours by using only their first names so as to keep their identity anonymous. Where I can’t remember the name I will use a manufactured one.

It is said that brain injury survivors may experience a wide range of Neuro-psychological problems such as Behaviour problems; Personality Changes; Memory Problems; Establishing Structure; Lack of Emotion, Emotional Liability; Aggressive Behaviours; Self Centred Attitude; Poor Concentration; Lack of Awareness of Deficits and Inappropriate Sexual Behaviour. The fortunate survivors may make a full recovery simultaneously the unfortunate ones may loose their lives.

Help to Care Givers

When I was transferred to ward 1 my bed was next to a chap called Peter from Bingley. He was a lovely old chap (55+), he used a Zimmer frame to glide. He couldn’t speak properly hence he muffled and waffled most of the times but could vividly utter the phrase ‘cup of tea please’. In one single day he could use the phrase more than 24 times. He would seat up in his bed like Undertaker who has risen from a knock down and gracefully drink his tea.

When Peter got discharged his bed was occupied by a guy called Guy in his late 20s or early 30s. He was smart and very articulate, one day I listened to his conversation talking to student doctors and was inspired. I was curious and I wanted to find out more about him unfortunately he didn’t seem interested in making friends in the ward. He only seemed to be interested by the company of his hot wife and the practitioners in the ward. Im sure he was a nice guy, very serious and goal driven anyhow he didn’t stay long in Hospital, he came in with a walking stick and didn’t need it when he was discharged.

Steve came from Pudsey he was a middle aged man talking like a hard man like Ray Winstone. Actually he was hard save for his left upper and lower limbs. He used an electric chair with a golf ball as a joy stick to enhance his grip. I used to be envious of his chair it gave him freedom to go outdoors and smoke all day. Hence I wanted to try and use one, after pleading my case I was given a few lessons to learn how to control it. I passed my driving test but disappointedly it was taken off me after I suffered a seizure. Lo I was upset and my anger triggered yet another seizure. Steve liked to make people laugh occasionally picking on me, fair play I now realise it was banter. However I used to take it personal. He was organised in what he did and wanted to be the voice of reason in the ward (alpha male) better yet for him he used to get on well with Billy the Charge Nurse. However I saw the relationship as teaming up against me I didn’t want nurses to take sides, unfair I thought. Therefore I was jealous of their relationship and rightfully so. Frans de Waals a Dutch primatologist found out that monkeys don’t like unfair treatment. Similarly people are creatures with intuitive for fairness. Empirical study using monkeys.

Harry was a nice guy and he also used to live in Pudsey as a result he was best buddies with Steve. The head injury affected his left-side regardless he could walk without a stick dangling his left hand which looked overbearing. His speech wasn’t clear but it wasn’t hard to tell what he said. He had a chevron moustache like Freddie Mercury and had a long term lovely girlfriend called Sue. The couple liked me, likewise I enjoyed speaking to them. Later I met him at a Community Rehabilitation Centre and we shared a room. One day out of the blues he tried to kiss me on the lips but told him “nah man I don’t get down like that”. I couldn’t fathom his actions his lovely girlfriend had just left the the room.

Mike was a quiet man because he had lost his capacity to speak thankfully his lovely wife never left his side and used to help him out with conversations. I would say Vicky the wife was in her mid thirties and Mike was in his early forties. They were a solid couple almost everyday Vicky was the first visitor to come in the ward and the last one to leave. Occasionally she used to book the side family room to spend some time with her husband. They made friends with my sister because every-time she came to see me she would have a good chat with Vicky. I liked Mike he used to push himself to the limit to try and get better, he had something to look forward to. I could see it in his eyes that he wanted to get well and be the patriarch of his family.

When I first saw Melvin I thought this guy has a head with no screws, an absolute nutter. Physically he looked normal and active apart from his lazy eye. Actually he was hyperactive, restless and a wanderer throwing swear words left right and centre. My bed was the first one on the left hand side as you enter the ward. Therefore every body who entered the ward used to see me. Every-time Melvin passed me he used to blurt the phrase ‘f*cken monkey’ spitting on the floor in disgust. I detested this dude I thought he was a racist, too often I reported him to the nurses and I was told to ignore his remarks because it was the brain injury which made him that way. To me he knew what he was doing because by and large he offended me in the ward because I was different. At the time I remember arguing that take away the brain injury facade and you will find out that the guy is a racist and now revealing his ugly side which was concealed at the back of his subconscious mind. However extensive research on brain injuries highlights that it can change people’s personalities.

Brian was a family man he never stayed long in hospital. The wife told us that he used to have a top job and unfortunately the brain injury had slowed him down, feeling woozy oftentimes. Looking at him seating on his chair was deceiving at best, he looked healthy and sophisticated. Unlike Melvin he was calm and soft spoken.

Stephen was a young dude same age as me I think, his brain injury was due to drug abuse. As a result his legs were severely affected and used to cry all day.

As for me my speech continued to improve by the day and was feeling comfortable oblivious to the harsh realities of the out side world. Nothing could have been better than beating nurses at chess. Other than that hospital life was monotonous, mundane and the food sucked. I recall one of the Dinner Ladies giving me extra portions thinking she was treating me but it was more bland food I had to endure. The occasional tasty treat from family was like manna from heaven, I remember Tau bringing me box of KFC it was like the best thing I ever had.

“Max we thinking of discharging you in a couple of months” speaking to me and my sister the charge nurse said. My stomach clenched worryingly “but I’m not ready and I have no accessible house to go to”. The nurse reassured me that my sister was getting help from the Local Authority to find an accessible dwelling for me. Finally I got discharged as an inpatient in June 2003 and continued further stints of rehabilitation as an outpatient at the Community Rehabilitation Centre, St Mary’s Leeds. Two weeks every three months I used to go there.

Life after hospital

when I got discharged from hospital reclusive sociability was the order of the day, all the kids went to school and my sister went to university coupled with work commitments. However I had two carers who visited the house twice a day for a total of 1 hour per day. Therefore I spent most of my time playing chess and nothing but chess against the computer. I started playing the middling level & gradually proceeded to play the hardest level and occasionally surprised myself by beating the computer. From this perspective it could be argued that chess played a big part in my rehabilitation particularly mentally.

2004/5 were the years of community rehabilitation and attending a community centre in my local area.

2006/7 I employed my first outdoor support worker, a student at Leeds Metropolitan University. 20 hours of support throughout the week so I joined a gym for working out as well as having swimming lessons. That period is when I started to attend Headway Leeds social events (a charity set up to help brain injury Survivors). I inquired about getting back to studying and I was told to prove myself that I could do it. So I enrolled for AS in Psychology at Joseph Priestly College (night school). Notably 2006 is when I became a member of the Church of Jesus Christ of Latter Day Saints, happy days.

Started my independent living trial in 2008 and eventually moving to my purpose built home in 2010. In 2008 I also commenced a programme in Human Geography & Planning from 2008- 2011 at Leeds Metropolitan University (now known as Leeds Beckets University). As a result I was crowned Headway UK Archiver of the year, to my elation. Consequently I studied a Masters in Town & Regional Planning and graduated in 2012, worked as an intern at Leeds City Council from 2013-14. In 2015 I started travelling world wide independently to find out the challenges faced by wheelchair users and disabled people alike on a daily basis by having the first hand experience.

Award ceremony at The Dorchester Hotel in London with two Irwin Mitchell solicitors, Jane Horton & Jane McNair (left to right)

Pursuing my dreams

Throughout my journey the magnitude of support from my sister and her kids as well as family friends was great and will forever feel grateful. However when it came to pursuing my dreams in the aftermath of my accident I took the initiative I didn’t wait for someone to tell me what I can and can’t do academically. It was within me to know what I was capable of. In general if you think you can do something ‘Just do it’ like Nike, wether you think you are right or wrong you are right, Henry Ford.

As highlighted earlier that head injuries affect people in different ways. Myself I lost the ability to do many essential physical things like walking. However many tell me that I have accomplished outstanding things despite my brain injury such as obtaining my MA in Town planning.

Therefore I encourage brain injury survivors and people at large to live to reach their full potential by sustaining a positive mental attitude because if people focus on their problems and limitations they become disempowered.

Acknowledgements: first and foremost I want to convey my gratitude to my sister and her kids, relatives and friends. You helped me when I was rock bottom for that I appreciate you more than you know. Trying to walk again I fell several times and Shelton you helped me up on numerous occasions. Throughout the road to recovery I was helped by many professionals pointedly: Dr Paul Chumas thank you for believing that I would make a considerable recovery alongside my sister and to overturn the decision to switch off the life supporting machine. To Amanda thank you for your continuing support work. Tom and Katie thank You for playing chess against me in hospital so too I convey my gratitude to NHS particularly staff for showing a brother some love. Shout out to the retired lecture from Leeds Becketts University, John Seacomb you believed in me and gave me a chance to prove myself. Headway Leeds cheers for giving me a social platform to meet other brain injury survivors alike. I’m also grateful that I became a member of The church of Jesus Christ in 2006, lovely folk. Last but not least I want to give a massive shout out to Irwin Mitchell Solicitors for being my financial pillar and for being my voice when I lost it.

The power of an early morning shower

What a better way to start the day than feeling Victorious? Every morning the shower deos not only rejuvenate my body but also gives me strength and courage beyond measure, I learnt the secret from elsewhere. In July 2017 when Andy Murray (British tennis player) was interviewed after winning the Wimbledon Championships he acknowledged that he had ice baths every night to be fit for Wimbledon. From this point of view it could be argued that the occasional and strategic subjection to the cold hardens a man. I for one I know that if I brave myself in the morning and overcome my fears, come what may through out the day I will conquer anything (please don’t try this at home). Afterwards im armoured with invincibility to dare to tap into any potential within my extremities. In general in life we are not rewarded for the comfortable choices but for great efforts and the will to explore things outside our comfort zones. Similarly the bible acknowledges that strait is the gate and narrow is the path which leadeth unto life (Mathew: 7 vs 14). Better yet the exhilaration of victory after taking the cold shower is beyond measure.

Without hardening ourselves we become soft or worse.

Even Kanye said that what don’t kill me makes me stronger. It is written in James 1:2 “My brethren, count it all joy when ye fall…”

however this was referring to temptations and trying of faith. Knowing that the trying of faith worketh patience teaches us to embrace temptations. The same could be said about the challenges that we face. After braving myself in the shower taking that one step off the shower chair is paramount to me, the floor coupled with the shower chair will be wet susceptible to slipping knowing that one mishap could land me on the floor which could have dire consequences. However if I make that sometimes after careful negotiation I never look back and the whole day I will sustain square shoulders like a victorious male lobster high on serotonin (popularly thought to be a contributor to feelings of well-being and happiness). Aubrey Marcus cited that a great ancient Japanese swordsman Miyamoto Musashi said:

Today is victory over yourself of yesterday; tomorrow is your victory over lesser men.

Therefore if I’m victorious in the morning I know that to some extent I can conquer anything.

Practically, Radisson Blue Nice, France is the best international disabled hotel room that I have ever stayed in, despite that the shower principle still applies. Disappointedly there is no emergency buzzer in the shower and the wider room.