Learning who the new "Altered self" was!

Sarah Miles
Sarah Mileson Tuesday, July 6 2021
8 Comments

Monday July 6th 2020... 12 months on and it still felt like it happened yesterday!

Aged just 33, I had suffered an ischaemic stroke (clot), which landed in the occipital lobe (vision) leaving me with a Right Homonyms Hemenopia (peripheral vision).

Here is where my "Altered self" emerged... Being stripped of so much, so quickly and learning new limitations was just so foreign to me! I had no choice but to ride a very uncertain and rocky roller coaster ride of emotions, with no guarantee of light at the end.

Tough Lockdown restrictions, home schooling 3 children, caring for our 6 month old and the regular day-to-day jobs around the house, all came ahead of my recovery. I had to hit the pause button on everything until it all came crashing down on top of me again! Reality sunk in and it felt like I was back at square 1.

Along the way I had to learn harsh truths about myself and the people around me, acceptance for my new "Altered self" was definitely not 100% guaranteed! Another roller coaster ride of Emotions with learning to let go of those who were absent, perhaps unable to deal with change!

Learning to just focus on yourself, after spending your life always focusing on others was difficult and often, at times, felt selfish.

Living with an invisible "disability" is incredibly frustrating and a challenge within itself. Sometimes I think about creating my own personalised clothing saying "I'm vision impaired, please be patient"!

It's the simple things in life we often crave the most; the stranger down the street greeting you with a smile and a "Good morning"; the shop assistant that comments on how well behaved your children are; the family member that sends you a message of love and asks how you are. We re-learn who is genuine in our lives and THAT is what's most important during such a crucial part of your ongoing recovery, surrounding yourself with those who love and support you NO MATTER WHAT!

Every day is very much different from the last, I try my absolute hardest, I stay as positive as I can, I continue to learn my limits and triggers and deal with them in a productive way. Above all else, I remain unapologetic about my "Altered self" because deep down my heart and soul has, and always will remain un-altered!

 

8 Responses

Sarah,

I am sure that you're going to get a lot of comments, as I think you will have described what's in hte hearts of many.

You're not alone, we're here for you.

Diana

Oh Sarah, its been a year since my trauma as well. I am 62 and had a totally "put of the blue" stroke, a cerebellar bugger, which I felt was a bit of a rip off surprise, as I have looked after myself, never as white as the driven snow, but in good shape. A year on, I am still getting used to the "new me" .... what a journey, and it is hard to tell and convey, even to those around you, how this actually "feels" ... I am doing OK, but there are parts of me missing. Life is different, but it can be very abstract. My mortality is now very real, and profound. I always felt about 18 in my mind, now I am 62, and have to handle the trauma that invaded my brain. At least I won't be days / weeks in Intensive Care any more, but the treatment I received was a most humbling experience. All the very best for and to you. My main issue is the "motivation" for life's issues, on a daily basis, "wind out of my sails" Fatigue is profound. Mick.

It truly has been quite a profound journey in so many ways than one. I too, have the sudden onset of fatigue that cripples my motivation. Explaining those helpless feelings to loved ones truly is exhausting, on the outside I am no different but on the inside I am constantly fighting a silent battle with myself. Facing the harsh reality that I could have left behind my 4 young children has been tough, however I don't let it consume me because I am very much still alive and well. 

Thank you for sharing a part of your story with me, I truly am grateful for those brave enough to do so. I too, wish you all the strength and love in the world to help you continue along your pathway to "Happy"

Can I firstly just say how well that was written Sarah. So much of what you wrote resonates so strongly with me. I too was 33 when I suffered an ischemic stroke due to a spontaneous dissection of my carotid artery.i only have one son and my biggest failing is that I never communicated with him him what I was feeling. It took me a long time for me to accept what had happened and four years down the road to recovery my biggest challenges are the emotional. I’ve lost many friends and family over the last four years but the new me has also made many new friends. Once again thank you for sharing and good luck on your journey. 

Can I firstly just say how well that was written Sarah. So much of what you wrote resonates so strongly with me. I too was 33 when I suffered an ischemic stroke due to a spontaneous dissection of my carotid artery.i only have one son and my biggest failing is that I never communicated with him him what I was feeling. It took me a long time for me to accept what had happened and four years down the road to recovery my biggest challenges are the emotional. I’ve lost many friends and family over the last four years but the new me has also made many new friends. Once again thank you for sharing and good luck on your journey. 

Sarah,

Like you I also have homonymous hemianopia, but my left side is the one missing in action. It's a pain but 18 months on I am slowly adjusting to it. I have a "I Have Low Vision" badge from Guide Dogs Victoria and there are several types available from the Vision societies in your state. I am also scheduled for an appointment with a Neuro Ophthalmologist later in the week. These doctors can produce a wide variety of lenses to help correct vision changes cause by brain trauma e.g. Prism lenses. I'll post a report in my blog when I have some results.

Hi Sarah,

That was very well written and exactly how I feel. I had an ischemic stroke 2 years ago, I was 32. My son was 3 months old, and my daughter was 2. 

My biggest challenge is tiredness amd anxiety, but I can't complain Im.alive and here for my children and husband. 

Thanks again for sharing your story 😊

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