my sister

Sisabilty- An Interview with my sister

This is my sister Jenny, who is today sharing her personal story of how in an instant she found herself in hospital fighting for her life.

Today she reflects on this and chats about just how far she has come.

Fourteen years ago, at the age 21, I suffered a massive brain stem haemorrhage that changed my life forever.

In an instant, I went from a fit and healthy young woman to someone who was on life support fighting for her life.

Although my injury didn’t affect my memory or intellect, it severely affected all my motor skills, leaving me with a physical disability. I was in hospital for 18 months whilst my body tried to recover, and by the end of 18 months I was more than ready to return home and to ‘normal life’.

my sister

Q1. Do you think that the disability sector needs improving and if so in which areas?

A. Yes of course – there is always room for improvement! But is it a hard question to answer fully because the sector is so broad and covers so many different disabilities. I think the most important thing that disability organisations and Government providers need to remember is that it is about the person – the individual. And everyone’s needs/wants are so different so you need to treat the person not the illness.

Q2. How do you maintain your mental health is balanced? Do you have any tips that you are willing to share?

Mental health unfortunately was not made a priority after my injury. The focus was only ever on my physical recovery so I have had to work really hard at making both my mental and emotional health is in check and well-balanced. I do that by making sure I make time for myself each week. It might be as simple as 10 minutes listening to music, reading a book or doing yoga & meditation but honestly you’d be amazed at what just 10 minutes can do. But you have to be fully present and focused. My other tip – find a place that makes you feel relaxed and where you can be comfortable. It might be your bedroom, the garden or the lounge. Make it your space. And above all enjoy it!

giphy

Q3. With regards to your continuing rehabilitation do you feel that those in the sector are knowledgeable when it came to aiding you with your recovery?

Yes, I have had the opportunity to meet and work with lots of fantastic therapists all there to help me with my recovery. I’ve also meet some not so great ones!  The majority have been very knowledgeable and have had a great understanding of rehabilitation. But ever brain injury is different and I have found that sometimes I need a therapist to think outside the box, to break the rules and to not go on past experience but to try new things. I know my body better than anyone and if I think I can achieve something (even if it sounds impossible) I like to try!

I think there is so much work going on in Neurology, especially behind the scenes and we are discovering things about the brain that we never knew were capable.

For example, Neuro plasticity has really taken off in the last few years and it is still such an unknown territory but that excites me as it offers hope and new options in recovery.

Q4. To someone else who maybe in a similar situation as your own, what would be the first piece of advice that you would give them?

Wow that’s a hard question. Unfortunately, there is no guide-book on how to recover from an injury like a stroke. It really is such an individual and personal process. Over the years I had a lot of good (and bad) advice. I suppose everyone has an opinion but if I had to share on piece of advice it would be this. Just believe in yourself. Truly. You know yourself better than anyone and when you truly believe in yourself and your ability you will be amazed at what you can do. The medical profession is very good at going of experience, knowledge and education and whilst that is important I think we are all unique and we are all capable of so much if we just believe in ourselves.

Q5. I understand that you are in the process of getting a blog together, has that been scary opening up and laying bare what happened to you?

It has been a long time coming. In fact, I should have done it years ago. I’m new to the game but so far I’m excited by what I can create and what I can share. I am a perfectionist though so I want to get it right and perfect which is probably why it’s taken me so long. Lots of bloggers say the same. I think if you’re opening up, telling your story and being vulnerable you want to do it properly but it also has to be organic. You can worry that you might not be any good or that people won’t want to read it but until you give it a go you’ll never know. Everyone I’ve spoken to has said ‘just start’ the rest will follow!

Q6. What do you want to your blogger followers to take away from reading your blog posts?

I’m in a place in my life where I really want to give back and I thought I could do that by sharing my story, hopefully educating the medical and disability sector as I think the best way for them to learn is from the people who have lived with or are living with a disability and what life is really like. I’d also like to help motivate and support other survivors in reminding them their not alone. There is something special in having support from someone who knows what you’re going through.

Q7. Do you aspire to a becoming a disability advocate?

I don’t know that I aspire being an advocate but if it happens organically then that is a privilege and a pleasure to be a voice for so many who are also living with a disability. It’s a big responsibility though!

Q8. Currently where are you with your recovery progress?

Since moving to a new state and a new home, I’m still finding what I need, but these days it’s more about being as independent as possible, having a healthy and happy life. I do Physio, Pilates and swimming every week to try to keep up my strength and to continue working on my mobility. I’ve still got a long way to go but the focus is on my walking and my left arm.

Q9. What are you setting out to achieve this year?

This year I’d like to try to get back to driving to give me some independence and I want to access the community more. I’m doing a 7 week Jamie Oliver cooking class plus getting my blog up and running and hopefully I’ll get to do some cool guest blogs. I’m also hoping to help my brother with his not for profit organisation. Plus, as this is a new state I’m looking forward to doing some sight-seeing. So a busy year ahead!

Q10. Are you in favour of the NDIS rollout coming in WA? And what do expect to gain from being a part of it?

Yes, I think the NDIS will be a really good initiative for WA. I think anything that gives people more control and independence over their life is a great thing. I’m interested to see what it can do to further improve my quality of life and what opportunities I will gain from it. I’m sure there will be lots of teething problems but that’s to be expected.

Q11. Finally, I hear that you enjoy online shopping? Care to name any of the companies that you currently shop from to see if they’ll send you some freebies?

Unfortunately, that rumour is very true. I am a fan of shopping and enjoy retail therapy! My favourite go to shops would have to be ASOS, Topshop, Sportsgirl, Cotton On and H&M. And if any of those want to send me some freebies I am more than happy to accept!

And as our interview comes to a close this happens 

giphy

Delivery time! 

 

On a personal note I would like it to be known that I am extremely proud of Jenny and all that she has achieved and conquered from when she was 21 until now.

I wish to thank her for allowing me to interview her and for her to be honest and open about her disability journey.

To me she will always inspire me to be my best self. 

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