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  • #41028
    Strokefocus Admin
    Participant

    I am reading “I can not read my mind”, a riveting book detailing the journey of a recovery by Bill Hrncir.

    Bill wrote: “As stroke survivors, the best thing you can do for yourself, and to inspire other survivors, is to get out there.”

    Very well said. Share our stories even concerns. Help new survivors to get up to speed with their new life. Get out there. A lot we can do.

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    • Faeezah Storer
      Participant

      Hi all.

      Agreed.

      Thank you.

      Faeezah.

    • Joyce Hoffman
      Moderator

      Most important, hug all those you love! That says a lot about what’s in
      your heart.

    • Avashna Moodley
      Participant

      I had to give this much thought .

      Many survivors would agree, that acceptance is the main challenge but there were several challenging episodes ….
      My son witnessing my first seizure . As a mother , you are the protector your kids and I wanted so badly to turn back time so he can unseen my seizure. He was just 13 years old . My husband refused to seek professional counselling for him or I. This was the last expense that one wants to incur . Your physio, OT, Speech therapist takes precedence over counselling .
      And I could not articulate my thoughts in a coherent manner . So my most challenging episode was the loss of my voice , my power house . And this carried for a while . This frustrated me and my frustration transferred to my family unit .

      After 18 months , I found the courage to fight my case and , as a family , we visited a psychologist.
      Unfortunately , there were no support options in my province .

      Regards
      Avashna Moodley
      0837881641

    • Strokefocus Admin
      Participant

      Avashna, this is very inspiring. You said you recovered 99.5%. This would
      be a dream to most people.

      In your path to recover, what was the most challenging episode? How did you
      get through?

    • Bill Hrncir
      Participant

      Thank you Daniel!

      Sent from my iPhone

      • Strokefocus Admin
        Participant

        Bill, what is the most important thing a survivor should do when working with other survivors?

      • David Huntington
        Participant

        Bill, in your book, you indicated, sometimes we try too hard to return to who we used to be instead of adapting to the new norm. And this may not help. Tell us more.

    • Avashna Moodley
      Participant

      I was asked to to be the Patient voice for The Heart and Stroke Foundation (SA). It took me 3 weeks to write this and I was so emotional that I considered opting out . I forged through and by writing down my feelings , I healed myself. Ever since my stroke ,I was unable to sleep, leaving me frustrated and lacking energy during the day. After letting my feelings out onto a page , I have a solid 6 hour sleep per night.

      The best thing a survivor can do , is share their story , might help a fellow survivor or help themselves .

      This is my story……….

      I am Avashna Moodley and I am a stroke veteran. Why veteran … I’ve got the scars , had a meaningful life pretrauma , didn’t have a road map to recovery and definitely had the long service . My stroke happened 9 years and 10 months ago.

      My life pre stroke was like any other , we were a family of 4 , me ,my husband and 2 kids in primary school. Like most young families , we lived on our own , this meant we didn’t have a village to raise our children. This meant a routine filled schedule .My husband ran his family business . My business was at its peak , I either sell or franchise . I was young ,ambitious and loved the adrenalin so I decided to franchise my business that I started on my own strength & intelligence . Together with my precious family this was my empire , big or small , it was my success .

      I planned out my whole life to never be where I am right now .

      I awoke on the morning of Christmas Eve (2011) then quickly realized that I could not move . I tried to get off the bed to walk to the bathroom , to tell my husband that something was wrong – my body was frozen in time . I was so confused . What was happening to me ?

      After almost 10 years , I still can’t believe this day ever happened. It’s like I’m watched a true story movie , and I’m the main actor .

      At 41 years old I had a stroke . My empire was turned upside down . There was no warning signs , no time to get my affairs in order , to prepare my kids for their mother who could no longer walk , talk , read , write or recall her life .

      For the next 19 days in ICU , I would beg the nurse on duty to call my husband so he can bring my clothes to take me home . I would pull out all the drips in preparation to go home …. My safe place .

      The doctors discharged me very reluctantly so that I could see my eldest child off to his first day of High school. Reality hit me , the first night at home and the next few days , I wanted to go to my new safe place …. The hospital.

      I wasn’t prepared , my family wasn’t prepared . All of us expected to return to normal, after all that was my home . I felt alone , like I didn’t belong .

      My head was like a freight train with the brake off. Thoughts and questions rushing around.

      I could hear myself speaking clearly to my family and friends but the sound coming from my mouth didn’t match those formed in my mind .

      My family could only visit me in ICU during set periods of time . They were totally unprepared and unable to read my desperate attempts at communicating through body language and other non-verbal cues . The frustration went both ways and we all soon realized how unprepared we were to tackle the after effects of a stroke .

      According to my neurologist , I had the worst stroke on the scale – 3 in 1 and today I am pleased to say that I have recovered 99.5% of my physical and mental abilities .

      I look at my stroke as I was stripped of my stuff , I had to rebuild , layer by layer. It was almost an initiation of sorts. Through my experience I’ve realized that recovery from any life threatening condition is not something you can do on your own , because when you are ill you become mentally, physically and emotionally deprived of the fuel you need to recover fully. This was the catalyst in setting up a non profit organization called Coming Home .

      Once you stop using your pain to navigate your world , you set your recovery in motion .Meaning your recovery takes place in your mind and then your body will follow .

      This is 1st step that me and my fellow stroke veterans show you.

      Your doctors play a crucial role , your rehab team play an equally crucial role but they don’t have first hand experience. We talk to your team and help map out your recovery road , we know how you feel, we don’t see your mood changes as stubbornness and laziness. We get you , we get your every need and we know your needs will change cos so has ours . Once you join our Coming Home family , you are never alone and your family is never alone

      I view my stroke as a tree under whose shade I did not plan to sit . Nothing grows in the shade .

      Do you choose to sit under your stroke tree ? The only power you have , is the power of choice .

      You’ve have a meaningful life before and you can have a meaningful life now .

      It’s your choice.

      Regards
      Regards
      Avashna Moodley
      CEO
      http://www.hospital2home.co.za

      • Thobeka Marumo
        Participant

        wow very inspirational I also found that accepting that things have changed for me, helped me to refocus on my new journey with no set deadline on recovery. thank you for sharing your story.

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