“So sorry, Jade!”

Dads visit 779[1]

I wanna talk about the stress and strains caused by stroke – and its effects on relationships. And for this, I’m going to be completely honest while trying not to sound self-pitying. A tall order judging by the way I feel just now.

The thing is, everybody sees my situation, looks at my beautiful wife and possibly thinks, “It’s ok for them!!” Well, let me tell you; it’s been hell. I’ve screamed and shaken like an epileptic – a common effect of stroke if you get upset. Jade and I have had to sleep in separate beds so I can get my 5 hours undisturbed sleep, which I desperately need, as I work and push myself so hard.

Because of my speech in the early days and sometimes even now when I talk to Jade, there’s no tone in my voice so I sound like I’m moaning all the time, even if I’m not!! As a result, a lot of situations end up in arguments and, slowly but surely, it chips away at your partner. It’s sheer hell!!

In my case, I’m over the worst now but I’ve left Jade wondering if I’m her man anymore – or am I a totally different man to the one she fell in love with?

Well it’s like this: I don’t think you can walk away from a stroke without in some way changing the person you used to be when you may have been carefree, enjoying life and never really worrying….But the shock of losing your independence or ability to choose to move a limb or not is the scariest thing in the world. BELIEVE me!!

Luckily enough, I’ve had a lot of help and support from both mine and Jade’s family and friends. And I’ve had the will to fight to recover, for which I’ve had to be an obsessive, annoying, pain-in-the-arse guy to achieve!

This is why I have to say this to Jade:

“My wonderful, beautiful Jade,  I  am sorry for all the pain of these years since locked-in syndrome devastated our lives, sorry for not being able to give you the attention I should have done, or listening to you as much as you deserved. For not being calm instead of snapping as I normally did through the sheer frustration of not being a man; for not bringing the money in, for relying on my wife to pay the rent.  For not being able to forget about the movement I lost in my arm instead of stroking the hair over your ears.
I am sorry for everything, Jade. I’ve had to be in survival mode ever since I woke up from my coma.

I must get back to my wife!
I must get back home for her!
I must get walking!
I must get strong!
I must fix things!
I must stop thinking “I MUST!”

It’s become an obsession, see? And now I’m almost there,  I smell it!
It takes a long time to be happy with yourself after a life-changing event like stroke, but I feel I’m getting there at last.

I hope you can forgive me, Jade. Thank you for sharing my journey and for helping get back on my feet. You are an amazing woman!”

 

 

 

 

 

 

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6 thoughts on ““So sorry, Jade!”

  1. Hi Peter, I have been trying to write you for days, weeks. What you have done for LIS patients is wonderful. You have courage and determination, and such a good insight into what is happening. As when you spoke of people with muscle conditions that are deteriorating as yours improves with practice. My son had a near fatal asthma attack February 28, 2013 and was revived with a LIS and a do not resuscitate bracelet on his wrist. He and his wife live 7 hours away from me, so it has been frustrating. He has had many miracles but is left with double vision, and is so sad. he doesn’t remember hid first month in the hospital. He was a music teacher. Very frustrated at guitar, piano and drums because his hands won’t cooperate. He had physical therapy March to Dec 2013, and was told to just work at home. He was 38 when he had the locked in syndrome stroke.

    I sent him your book and links to You Tube. His voice is getting stronger. He gained a lot of weight on the thickeners they had to put in water, juices. and i think on the antidepressant citalopram, which the neurologist gave him for neurogenesis, not depression. (i think it made him depressed). I have never seen him so bored. i wish his friends would visit him, they don’t understand him i think. he used to be so outgoing and friendly, was in several rock bands, got a scholarship to the University, speaks many languages, travelled the world. i try to tell him a joke to remember. His wife says he has no short term memory, but i don’t hear that. (How do you get an octopus to giggle? 10 tickles) i make him guess the joke punch line if i get his answering machine. (How do bees comb their hair?……….)

    Thanks for all you do. i miss hearing from you when you are busy! Best wishes,

    Julie

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    • Hi julie thanks for telling me my blogs are helping
      If feel I must try and talk about situations and although I am nolongerlockedin I am helping
      Other BELIVE too
      If there is will to change things I BELIVE we can
      It’s at a price some times as I found out this week !
      But the struggle will or can
      Improve a standard of life
      Feel free to email me at anytime
      And we can talk
      Intheblinkofaneye@hotmail.co.uk
      Pete x

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      • Hi Pete, and to all mums out there who have experienced Sroke and Locked in Syndrome with their Family. Pete, you have NOTHING to be sorry for. You did what you had to do to get out of the prison you found yourself in. It would be impossible to remain the person you were after that. Probably the most terrifying experience a person could go through. You had to change your life, you had to change your lifestyle. Yes, living with that change was hard for family and friends, but we knew why it was happening. My sunny, happy go lucky son changed. How could you not? Try living with anyone who has had a major injury or disability! Even a long illness. Snappy, bad tempered, want everything yesterday, but thats what keeps you going. Being so totally dependant on people is humiliating. Especially for someone like you, fiesty, independant, self sufficient, a great mate to everyone. You were always there for your friends and family Pete, and however you got there, your recovery was the main thing. We all knew you would become different, but all we wanted was for you was that you could ultimately function by yourself. And you have. You still drive us crazy with some of your ideas, but keep them coming Kiddo! I remember telling you in the early days that even though you felt that all your dreams had come crashing down around you, you would have the chance to dream again if you had the courage. You had that courage Pete. I admire you for it. There isnt a chance on this earth that I would have seen you forever as you were when you were Locked In. You know that, its in the book. You will never face a tougher battle in your life as you have been through, and so what if you want to be different now? As a mum, having a child changes your life forever. You dont care that all your friends are still out there having fun while you are sleep deprived, exhausted, feel fat and too tired to enjoy everything you once thought was fun. All you want to do is be the best parent you can be. As you want to be the best you can be as a person, a provider, and you are so close Pete. Marriages fall apart for a whole lot less than what you have experienced. But please, never feel that you have been a failure in this one. You are amazing, and if if ever asked who my hero in my lifetime was, It would be you my son. I know that if i wasnt here in the next few years (not that I have any plans for going anywhere soon) that you are able now to earn a living, keep a roof over your head, and you give an amazing contribution to other families and to your community. You have found out who your true friends are, The ones who sruggled with your word board, the ones who fund raised for you, the ones who are still your best mates. We all love you Pete, and Life will be what you want it to be. You can do it!

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    • Hi Julie, Pete Coghlan”s mum here. Obviously we have been going through a very hard time as mums…I’m very sorry to hear about your son. It sounds as though there has been improvements though, which is positive. Any progress is great progress when you have been told there would never be any? I’m so glad that Pete has been able to give you and your son some hope and inspiration. Im so sorry you live such a long way from him. I was very lucky, Pete lives 10 mins away from me, and his hospital was literally 6 minutes from my workplace and was round the corner. My daughter and his wife worked in the hospital he was in for ICU and the stroke unit before he was transferred. We were never far away. Thank you for you lovely message to Pete, Mums have a hard time with this. We want our boys to be whole, and happy, and the way they were before all this awful trick of fate happened. Yes Pete is doing great, he works very hard to help other families, Talking at lectures etc. But yes, he is different now. Im sorry I dont know your son’s name, but hopefully, he will gain enough confidence and determination to get through this awful ordeal. Your son sounds like a pretty amazing talented young man. If he was driven enough to have achieved so much, he won’t give up easily. As far as friends etc.go, that can take a long time. People are scared, embarrassed, dont know what to say etc. Put the call out there! remind people that your son is alive! They should just be themselves, Treat him like the mate he used to be. Pete lost a few mates along the way, but he gained so many more than he ever thought possible. His friends dont need to avoid the obvious. Pete had sometimes dangerous moments of laughter with his friends, when he would laugh so much he inhaled his food and had to go to theatre to have his lungs cleared. It was worth it! They laughed and cried together. Crying didnt help in the end for Pete, cos again, he inhaled the fluid, but my God, It did him good. Im so sorry you live such a distance from your son. I wish you well, and hope the next few months leading up to Christmas get better for you. Contact me any time. Take Care and God Bless 🙂

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      • Thank you so much! Pete has helped me so much. There have been so many nay-sayers in this experience. And so many counter-indicated drugs and tests. Trying to find out the cause of his LIS for example. my son Dave called an ambulance because he couldnt breathe, not because he was having a stroke. came later when he didnt have enough oxygen to pump his heart the blood thickened and either his next breath or the oxygen sent 5 blood clots out. Still they kept anesthsizing him and testing. The doctor in the first hospital said that, but the next 3 hospitals went surgically searching… I meant to be brief. You and Pete are both wonderful writers.
        i watched every you tube over and over, thrilled with the progress and bravery it took.
        Dave was just 38. March 1 2013, I am sending Pete’s books to family and friends and asking they donate to libraries or stroke rehab facilities, Pete says so often ‘dont believe it when they say “never”‘ and so many well meaning hospitals havent worked with LIS. I have discussed with Dave that the biggest change besides his vision and damage to his hands (people would think slight, but he was a genius on the guitar, still is but with a pick not fingers) is boredom. A kid i never saw at a loss for what to do. it is his not wanting to relearn i suppose.

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