Hidden Disability

It was another morning but like no other due to the fact we were in a pandemic.

An autumnal day, relatively mild.

Yet he was different, a little restless.

He went to the bathroom several times but did not explain fully… how could he.

I asked if he wants to stay at home today he said “No”.

What was obvious was that he was a bit off that day. I was considering calling his personal assistant to let her know he might be coming down with something. Not the first time he had a tummy bug.

Maybe no day centre today.

Something wrong

My phone was charging in the sitting room as I watched him tieing the curtain by his bedroom window as he always does in the morning.

Then he let out a sound that I will never forget.

I ran towards him as he collapsed to the floor.

My first thoughts were a seizure.

I turned him to the side calling his name.

He was not responding.

Panic and adrenaline set in and I instantly knocked on my neighbour’s door and ran back to the bedroom. I will always be grateful to that neighbour. She could not be more than 20 years old and her mum was not in. However, she got the paramedics on her mobile phone. She later directed the rest of the team to where we were.

My hands were shaking

The paramedic on call instructed me how to do CPR (I had never done it before).

I did not stop to think, I just wanted him to wake or respond. I kept going until he appeared to be snoring. The paramedic arrived and the rest of the team came shortly after, there must have been 5 altogether in his bedroom.

His personal assistant arrived in shock, thinking the ambulance was for someone else.

It must have been 20 minutes but it felt a lot longer before he was moved to the ambulance. I went with him. My hands were shaking when one of the team asked if I could write basic details about him, name, age, allergies etc etc.

I later found out he had a couple of heart attacks while he was in hospital but was stabilised and put into an induced coma.

It was touch and go at the ICU with a chest infection. 

He made it.

After some routine tests he had a pacemaker implanted.

My brother

He is my brother who lives with me and I am also his carer. He cannot read or write and has learning disability and is autistic.  It is one thing to witness someone having a cardiac arrest. It is traumatic not being able to communicate fluently what is going on with your body when it is fighting for its life.

I am eternally grateful to the paramedic who instructed me how to do CPR. The clinicians have been extraordinary considering communication was not easy with my brother and in light of the pandemic.

They and family members are amazed at his recovery. He is walking, talking smiling and laughing. He still is improving and taking baby steps. I would rather he did not remember what happened that day and I doubt he does.

As he was generally healthy and test were done, consultants are baffled as to why it happened and assume it is hereditary. So family screening is needed.

Time will tell

Not sure how his cardiac arrest affects his memory. As much as he is returning to his usual routine at home. He does not remember a lot of Makaton signs.

He is still trying to work out which fruit is which and the same with vegetables.

Time will tell if this is long or short term or he can relearn.

What I do know that we all carry disabilities of some kind or other and sometimes we are not even aware of it.

My brother now has two hidden disabilities, his autism and his heart.

Feature Image by Gerd Altmann from Pixabay

6 thoughts on “Hidden Disability”

  1. Hello Loren,
    I know exactly how you feel, I had the same senario with my husband, I had to run next door for my neighbour, and we did CPR until the medics came. So pleased your brother is doing well, my husband had an ICD fitted and is also doing well. You should feel very proud of yourself, you have saved a life! Take care of yourselves and keep safe. Regards Jean

  2. Hi Jean,

    Thankyou for kind words. He is at home and it is like it never happened. It is a combination of timing, the human body response to trauma regardless of your health, the paramedics, the clinicians at the hospital and aftercare. I guess me being at the right place at the right time (neighbour included).

  3. Thank you for telling this story, which I can empathise with. A long cardiac arrest left me with both physical and mental problems which I deal with on a dayly basis. Next week will be my 8th anniversary of the event, which I have no memory of, so hold strong and keep taking the tablets as things can improve. Oh, and humour really is the best medicine.

  4. Well done Loren, you’re a true star. I survived my sca nearly three years ago because of someone like you. Your brother may not fully understand what happened, or why you might get a little frazzled at times, but there are plenty of us in here at sca-uk you can rely for support xx

  5. Thank you Brenden.
    I am so glad you are alive to tell me your story. Eight years strong you too keep going. It is really baby steps at the moment for him.

  6. I really appreciate that Brian. It is not easy but we persevere and it is good to know there is support here.
    We do have our funny moments and him smiling is worth a lot.


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