Paul Isaacs' Blog

Autism from the inside


In The Last Ten Years

Looking Back

The last ten years have been very intersting in 2009 I was recently out of the Mental Health Services with two personality disorders, auditory hallucinations and psychosis, I was self harming and attempted suicide.

Early Infancy

By clinical observations I was serverely autistic, I was profoundly meaning deaf, meaning blind, body disconnected, oral apraxic and didn’t gain functional speech till later in infancy. I was and am thankful to my parents who had no means of any interventions (in the late 80s many were dated).

In 2010 I was diagnosed with autism and OCD and my speaking career started off in which I went freelance in 2015.

“Standards of Success”

By “non-autistic” standards I “made it” in many ways I suppose. I was considered “retarded” by the village I lived in and was targeted and bullied by the children and adults till my mid-teens.

Education

I was targeted and bullied at school from primary to secondary when I finally left in 2002 (with an isolated incident of sexual abuse) in the latter.

I went on to do an ICT coursecfor a year and had the greatest experience of my life from and educational perspective it proved I could be educated.

Bullying and Employment

The bullying in employment started in 2002/3 so multiple jobs were lost and gained.

I was thankful to the autism base in Chinnor in around 2008/9 for supporting me as well as the start of my speaking career in 2010. Over that period of time I wrote and authored 5 books.

The bullying in employment stopped in 2015 when I went freelance and started working for My World.

This is longest time in employment that I have been safe, comfortable and seen as a part of the team.

I Am A Person-First

People wonder why I use “person-first language” this is why because I do not want to be defined by a “label”. I do not like serperatist “them and us, us and them” rhetoric we (as beings) are all a part of the human race

From 2013 onwards to now I am pleased to have met some of the most wonderful and friendly people in both my personal and professional life.

Love and Life

I lost my Gramp in March 2017 due to metatastic prostate cancer, one of my dearest friends and mentors Polly (Donna Williams) in April that year also to metatastic breast cancer and my Nan in December 2019 due to pneumonia. I shall always cherish my fondest memories of them.

I almost lost my Dad in 2011 due to chronic lymphocytic leukemia and then meningitis in 2018 as well as my Mum in May 2019 due to a complex thrombotic disease.

Creative Mindsets

I have had great fun dabbling in art, poetry and what I call “insta-modelling” in which to my surprise and support from my friends up north has been rather enjoyable!

I have been interested in androgyny for many years prior and have been told I look as such.

One of things I can do well is pluck my eyebrows which I consider an achievement as much as anything else! ūüėČ

Conclusion

So look beyond what is here, look beyond what is heard, what is seen, what is touched and sense people because every cherished little person is special and of equal valor and humility in this world.

Paul Isaacs 2020


Leave a comment

A Journey With Cancer, Treatments & Side-Effects

Dad in his 20s 2

 

Cancer is a hard thing to talk about my Dad was diagnosed in 2009 with a type of blood cancer called Chronic Lymphocytic Leukaemia which attacks the white blood cells and comprises the auto-immune system. Early warning signs included fatigue and hard node underneath his armpit. After this diagnosis he got a second which would change the outlook of mortality and treatment in which he had genetic mutation of the p53 gene which is called the “guardian angel” gene for cancer. He in 2010 had been given three months to live if he didn’t have a bone marrow transplant (which came from Germany and the person had the same genetic deletion) it was then he had chemotherapy the the transplant.

He told me that one of the most difficult things prior was signing a piece of paper acknowledging that there is a 25 percent risk of him dying through this procedure. I am sad to say it but one of the worst things about the experience was the wards lack of knowledge on Autism and Asperger’s Syndrome and by letting staff members know actually made an already compromised and critical situation much worse he was name-called, laughed at and escorted out of his room during the his last day he belongings stuffed into black bags and told to wait in the communal room despite him almost dying almost three times in the 12 weeks due to fungal pneumonia. I trained them in autism for an hour.

The team gave him too much of the bone marrow donor swapping a life threatening disease to a chronic disease called Graft (donor) vs. Host (the person) disease which attacks the soft tissue, eyelids, foreskin, lips, mouth, gums etc leading to tooth decay, gum recession in my Dads case

The drugs he takes now is something called perdnisolone which was created in the 1940s in is a type of immune-suppressant which in the short term is very good but in the long term can have dramatic and even life-threatening consequences. My Dad has been on this drug for over six years and the effect on his life have been drastic mood swings, mania lasting days, explosive and odd reactions to sometimes the most trivial of comments, impulsive behaviours, personality changes (narcissistic and self-centred ideals quite the opposite to my Father’s kindly nature), psychotic episodes and paranoia. The hardening of the trunk of his body means he finds it hard to breath (dermatological disease), high blood pressure and muscle spasms and the constant flip-flopping of drugs (if you go over 20mg of pred you must take additional tablets to counter the side-effects of this). His body is steroid dependant meaning that I feel there should be alternate looks into helping a person safely ween off this drug.

Recently my Dad went “cold turkey” for over a month because of these side-effects his nervous system went into shock in the second week causing him to vomit, blood pressure to drop and so he self admitted to the triage in which he was giving pred as the only option. Chemotherapy, Radiotherapy and Predisoalone are all legal but destroyed and suppressed my Dad’s immune system to the point that he wasn’t my Dad anymore. I know there are other family members going through this I would like to say you have my sympathies.

I would to point out that my Dad is a positive and assertive person and through continued self direction, realist attitude, objectivity he strives to live his life as full as he can.¬†ūüėä

#disablityandcancer #immunenology #autoimmunedisease #CCL#p53GeneDeletion #Aspergerssynrome #autism #sterioddependant #life#cancersupport #cancercare

Paul Isaacs 2018


Leave a comment

When Your Father Has Cancer And Life Is Comprised It Puts Things In Perspective.

20160708_194624My Dad is a foundation of why I do not wallow in self pity for too long, he is a trooper with a good sense  humour and a positive  outlook on life itself, for five years he has been in constant pain due to his leukaemia and graft vs host disease.

I am constantly reminded not only of the fragility of someones mortality but also the inner positivism of the human spirit, he seldom moans, complains or feels sorry for himself he is always pushing himself to the limit supporting the family as and when needed.

He takes 90 tablets a week all to aid his fragile immune system and he has weekly checkups and is on a high dose of steroids and has blood cleaning once a week also.

He is tired a lot with pain or high and emotionally unbalanced due to the psychological fallout of having a high dose of steroids. I am glad he is still with us and I am so glad I can spend time with him we support each other he is a practical, down to earth man, takes no bullshit and shoots from the hip. I respect his worldly wise advice giving  good foundation for accepting failure as normal, taking ownership of situations and humility. He is highly spiritual.

His life may well be shortened ¬†but he is adamant to live it to the full. ūüôā I think we could all learn from this.

Paul Isaacs 2016

 


Leave a comment

When People Have Cancer And Others Are So Selfish

Dad 2012Think About This?  

I like this a lot me Dad gets this all the the time you “look well”, “you seem well”, “you look ok”, “you look healthy” or the best on “you can take a tablet for that?” well when my Dad is

  • In Perssiant pain
  • Fatigue
  • Depression
  • Reacting to drugs on a daily basis
  • Blood infusions (cleaing his blood) on weekly basis
  • Muscles that tighten on a weekly basis
  • Soft tissue that is so damaged that he has scarring on his lungs
  • Graft vs host disease that leaves him in pain and fatigue
  • Nearly dying in hospital on five separate occlusions
  • Leukaemia that effects his auto-immune system and has done for over 6 years

Then maybe just maybe will people think about my Dad ‘s or our family’s reality? Rather than ignoring him on the street or where he lives (yes that has happened on more than once) even if you don’t speak to him. don’t be so selfish, narcissistic and ignorant to think that everything is going to be on your terms and is always about you.

My Dad is a humble, easy-going, socially accepting man and is still a very positive man despite the difficulties listed above. ūüôā

What is Sick Supposed To Look Like Anyways? Video Link 

Paul Isaacs 2016


Leave a comment

Spirit Of The Wolf

Dad's Tatoo 20152My Father is a spirited person and is very positive and assertive in his outlook on life he is a very balanced individual and knows that having leukemia and graft vs host disease means to him everyday is a blessing, every moment is precious and making use of what you have have got (rather than what you haven’t) is so needed he wants no pity from others nor feels sorry for himself nor wallows in lament or self pity. It puts trivia in its place and makes me at least value the now.

Paul Isaacs

Adult With Autism 2015


Leave a comment

Donate For Donna – Please Read And Share

Lindsay Meetup 2014 Hi-Def2This is from Lucy Simone

“Hey! Please check out this page me and Zaffy Simone made for Autism Rocks! Zaffy Simone’s fan page cousin… she needs money desperately. She has advanced cancer all over her poor body and she cant afford the costs of treatment. She has a little girl and we want her to stick around as long as possible for Summer’s sake. Please help if you can. xxx”¬†

For more information of Donna’s story please visit the page – the link is below

Donna’s Donation Page

Please Share Folks.

Paul Isaacs  2014


Leave a comment

Mesothelioma¬†¬†Awareness – Heather Von St. James

Heather Von St. James 2013

Heather Von St. James

Cameron & Heather Von St. James

Cameron Von St. James contacted me and talked about his wife Heather‚Äôs amazing and inspiring journey with Mesothelioma a form of cancer ‚Äď through awareness we can reach out to those who are touched by cancer the people, their families, friends and loved ones and help.
I urge people to become aware and share their stories, moments and hearts to this cause and spread awareness, knowledge and hope.
 

Mesothelioma that affects the pleura can cause these signs and symptoms:

·         Chest wall pain
·         Pleural effusion, or fluid surrounding the lung
·         Shortness of breath
·         Fatigue or anemia
·         Wheezing, hoarseness, or cough
·         Blood in the sputum (fluid) coughed up (hemoptysis)
 
In severe cases, the person may have many tumor masses. The individual may develop a pneumothorax, or collapse of the lung. The disease may metastasize, or spread to other parts of the body.
 
Tumors that affect the abdominal cavity often do not cause symptoms until they are at a late stage. Symptoms include:
·         Abdominal pain
·         Ascites, or an abnormal buildup of fluid in the abdomen
·         A mass in the abdomen
·         Problems with bowel function
·         Weight loss
In severe cases of the disease, the following signs and symptoms may be present:
·         Blood clots in the veins, which may cause thrombophlebitis
·         Disseminated intravascular coagulation, a disorder causing severe bleeding in many body organs
·         Jaundice, or yellowing of the eyes and skin
·         Low blood sugar level
·         Pleural effusion
·         Pulmonary emboli, or blood clots in the arteries of the lungs
·         Severe ascites
 
A mesothelioma does not usually spread to the bone, brain, or adrenal glands. Pleural tumors are usually found only on one side of the lungs.
Copyright Wikipedia 2014

Useful Links