It Takes Grace

On the weekend, my auntie and uncle visited. They live in Australia and are staying nearby. I had already seen them a couple of times since my brain damage but it was a little nerve wracking because of how I get so emotional. I was totally fine but it is so weird how..when I initially see people,I get so emotional. I guess I don’t know what they will expect and I am not the Grace they remember.

The thing is.. I said this yesterday, I have said it before and I’ll say it again today…physically, I am different..but mentally..I am still very much the same person ❤️

This morning, I went out for a coffee with She is also my wonderful Pilates instructor. In Hamilton, I was very focused on my physical health. Getting stronger,fitter and my physical rehabilitation 💪 Now that I have moved to Palmerston North, I am having a big focus on my mental health. I am closer to my family and friends which is great. Being able to see my new niece often is so good! A large focus this year, is establishing new relationships and maintaining old ones. When this brain damage happened I thought that it was the end of me ever making new friends. Who would want to be friends with the disabled girl? I am realising,though,that although I am physically different.. I am still me.
I am just so grateful to for taking the time to get to know me ❤️

In May 2021, my friends and (who are also married) ran ‘The Goat’ run and fundraised for me. It was such tough terrain and they trained for months. We hired a big house and all stayed together. It actually makes me emotional even when writing this. I am so so grateful to them❤️ This is a photo from when they had finished. We are all wearing a T-shirt that my sister designed…more detail in a separate post!

Every three months, I get Botox. The right side of my face is paralyzed so the muscles on the left overwork and it is so obvious! When I don’t have it , my eyebrow is constantly raised. I hate it..especially in photos. I had thought about Botox but it was and that gave me the final push..and i am so glad!❤️❤️❤️
1st photo is before Botox
2nd/3rd photo is after

This was my first ever videofluoroscopy. I have since had quite a few. Mum was there and she had to wear a funny apron-like outfit because there can be some radiation. It is an X-ray of the upper airway with the use of contrast. Essentially, it’s an X-ray to see how I am swallowing. This is what told us that I required thickener in any liquids. Thickener was like a white powder that was added to my drinks that once settled, made them thick. It was like PVA glue. I had have it so thick (like the spoon would literally stand up in the drink) otherwise I would cough and aspirate. I remember having a tea with thickener and it was so yuck. I love coffee so I didn’t have any until I was using way less thickener-I didn’t want to ruin it! ☕️ 💫

This picture is so sad. My face is so droopy and the tape on my glasses (to stop my double vision) looks aesthetically really bad. I am so so glad to be out of those days!

When I was told that I was going to be discharged from hospital, I was so naïve and confused. I had been in the stroke rehabilitation ward (because my condition was so rare, they didn’t have a place for me 😂) The people around me were recovering much faster than me (slow for them but fast for me) I thought ‘but I am supposed to be able to walk out of here.’ I felt sad..like I was behind in my recovery but that I was being kicked out because I had been there too long. I would hear of inspiring stories where people recovered through pure determination. I would say ‘but I am determined!’..I have since learned that everyone has a different recovery journey. My brain damage was seriously bad and I am just lucky to be here ❤️

Yesterday,mum and I went to the warehouse. When we got there..no disability parks were available..annoying but fine. Luckily there was a park with a space next to it so I could get out. Inside, we were getting pots, potting mix and plants so we needed a trolley. Unfortunately, the motor on my wheelchair isn’t working. I can usually push myself. When time is of the essence,though, I am extremely slow. My left arm has spasticity, is really rigid and gets really sore. Mum used the trolley to push me. In a line, it was me in the wheelchair, then the trolley,then mum. We would have been a sight! Of course there was alot of laughs 🥰

Picture: Me at The Warehouse a different day with the mobility scooter.

I don’t drive. With my ataxia (uncontrollable random movements) and my eyesight, there’s absolutely no way that I could. Mum drives me to all of my appointments. It does make me sad sometimes and I wonder if I will ever drive again. I miss driving so much. The freedom of being in control of where you go. At the end of the day,though, it wouldn’t be the end of the world if I couldn’t drive. How cool would it be to get to the stage when I could wander off and get the bus on my own ❤️

I got my trike In February of 2022. It was nearly a year of trying very hard to get the funding for it. It has power assist and is made specifically to my needs so it was quite pricey. It was shipped from the UK. When I said that getting the mobility scooter was life changing…well this is another level! The scooter allowed me to go outside but this allows me to move my body too. I can’t go fast because I lose control but I can go with someone walking 😂 in May 2020 I actually did a 10k ‘walk’ in the Hawkes Bay. I love going out on it so much.

In October 2022, Sophie and Petra came to NZ. Me, Jean, Sophie, Mum and Petra stayed in Rotorua. It was pouring down so we went to . It was so great because being in a wheelchair, there are so many things I can’t get involved with. All the paintings were done on the floor or walls so I was able to just get down. Often, when I can’t get involved, I just know (out of the kindness of their hearts) that people are trying to include me. I can often feel the people I’m with..looking at me..to check I’m okay. I hate fuss and being the centre of attention 😂 It’s really nice to feel included and not feel like everyone is trying to include
you❤️

For the last three New Years..People have said, “this is your year to shine!” And yes, there have been some absolutely fabulous times but there have also been some incredibly hard ones, and just life on a daily basis. Here I am saying 2024 is going to be my year. Life is going to slowly get easier and I have already met some wonderful people that are going to make my year go well! 💪❤️

Again,sharing a photo that I really don’t like but this was the reality for me and the people around me. I used to get excruciating cramp in my calves. At that point I had a little bit of movement, but not much. I couldn’t reach down to hold them in pain. I remember a psychologist would come to see me and he would get me to sum up everything I was feeling with one word. I couldn’t speak so using the alphabet board I spelt ‘CRAMP.’ I just wanted someone to help me but they couldn’t. I was trapped and it was horrible.I know that it will be hard for the people that were around me to read this. Unfortunately though..it’s the truth. However, I am very lucky, that through all the pain…the people I loved were right there with me❤️

In 2021, mum and I went to the zoo in Hamilton. This was before I got my mobility scooter and mum had to push me everywhere. At one point there was a big hill and thank goodness people are often kind because a man offered to help push me up. I really don’t think she could have done it! When we first got there, there were no disability parks and it is needed so that we can fit the wheelchair down the side. She got me out first and then parked in an able bodied car park. At the end, mum had to go get the car while I sat (feeling silly) in the carpark.

Today after Hydrotherapy, I was able to get into the spa. There were three steps but using the bar and mum.. I was able to walk up. Then I sat on the side and slipped in ❤️

Recently, I have been waking up quite early. This has meant I haven’t been in a big rush to get ready..like usual! I have been doing my own makeup (just foundation, bronzer and blush). My eyesight isn’t good though so I have to get mum to check that it’s okay! So far, so good 😊 The other day I timed myself and it was thirteen minutes. Three of that was because I had moisturiser on my hands and it took me that long to get the nozzle down and sq**rt the foundation 😂 I don’t think thirteen minutes is too bad, though!

I got my mobility scooter around May 2021. It has been a complete life changer! Before I got it, I couldn’t do walks,bush walks and steered clear of things like sport fields etc.It has given me so much more freedom and it even goes in the heavy items on the plane! When I first got it,though…I fell off on the river path.. I am honestly so lucky that it was an area where there was a grass bank..traumatised for life!

Picture from when my friends Ashleigh and Paris visited in Hamilton ❤️

Sharing photos like this is so scary because I am at my complete worst. This was reality,though. I want this page to be completely raw and honest. My right eye. The one that is paralyzed. Doesn’t produce tears so it gets really sore and dry. I use a good eye ointment now, but for over a year I was using eye drops. These clearly did not lubricate my eye enough and I would honestly be in excruciating pain. The only thing that would help me feel relief was when I manually blinked so I would use my finger to blink. This only provided relief for literally one second. I often had to have my eye taped shut. I have terrible vision out of my left eye,though. It was horrible and I honestly don’t know how I got through 😂 every time I had my eye taped, I felt as though I had failed. I would try to keep it open for as long as I could. I remember looking at the clock and trying to make one minute before manually blinking. I couldn’t do it though. In hospital , I learnt to apply the eye drops myself but I went a long time needing other people to do it. Now, I use a different eye ointment. I do need someone to do it but I hardly ever manually blink and I only put it in once or twice a day..it is life changing 💫

Merry Christmas everyone! I’m not going to do one of my normal posts. I just hope everyone has had a good day and stayed safe. For those people that are finding today tough, for whatever reason, I hope you can find at least one reason that makes you happy/grateful ❤️
Picture is of me,my sister and brother

In hospital, there were three affirmations that I said in my head literally over and over again. My sister gave them to me. I often said them if I woke up at night. Nights were the worst. My family weren’t there and I would wake up to the night nurse with other patients and wouldn’t be able to get back to sleep. I would repeatedly say:
‘I am a survivor’
‘I am recovering’
‘This too shall pass’
I feel like saying these to myself, over and over again, truly got me through the six months I was there ❤️

Yesterday, it was my birthday. I had a picnic at the park with family. Then later my sister and I went for dinner and a cocktail. There were tough times, yes. For example the ground at the picnic was on a slight lean..so I had to lean against my scooter for stability. Otherwise I felt as if I would topple over. Then later, Jean had to sit next to me and hold my glass steady otherwise it would spill everywhere. Eating the pizza…well that is a whole new post! Times at the moment are pretty tough but I have so so much to be grateful for ❤️

I have a new motor on my wheelchair. I have been practicing to use it in public but due to my ataxia (uncontrollable,wobbly and erratic movements), I often lose control. The other day, mum had me and my three year old nephew in the supermarket. I was trying my hardest to be independent and use the motor but I lost control a couple of times which resulted in some 360s. After about twenty minutes the tears came..although these daily struggles are so hard, and I am so self conscious of people looking/staring..I still think ‘oh stuff it’ and do it anyway.

Yesterday, I went with mum to pick my nephew up from daycare. When I went in, it was like I was an animal at the zoo. I was prepared for it though. All the children literally surrounded me, curious and staring. I actually think it is so good for children to be exposed to diversity. It was very clear that most of them had never seen a person on a strange chair with wheels. A while ago there would be absolutely no way that I would have gone in. I would have gotten extremely emotional and not have handled the staring. Even though I still find it tough, I can see that I am getting braver 💪
Picture is me and Emmett hanging out in my new cabin❤️

Transporting items.

I wanted to wrap some presents and mum was out so I had to carry everything myself. I was in my room but needed go to the lounge (literally like 10 steps). I had a bag with presents which I hung on the back of my chairI had things on my lap and was rolling so slowly so that things didn’t fall off. (I always do this but without doubt, I constantly drop things!) I got halfway and realised that I didn’t have my reading glasses or Ipad. This is so frustrating! Honestly, moving from one room to another can take so long and so much thought. Luckily, mums partner was home and able to get them for me. Once I got to the lounge, I had totally forgotten what a mission it was. I had to roll over to get the wrapping paper, then go find the scissors and the cellotape. When I finally got to the table, I realised that I needed a pen for the labels. I didn’t time this but I am going to take a guess and say it took half an hour to get prepared. On a good note, last year it took me 2 hours to wrap 4 presents..this year, 1 hour 40 💪 it’s the small wins!

I can shower myself. As long as the shower is roll in with bars,so that I can transfer from my wheelchair to a shower chair. I have always had help to wash my hair though. Yesterday, I tried doing it myself (with mum there). I managed to do %100 of it myself. Once I had dressed myself, I looked at the clock. It had taken me about an hour. I don’t care though - however long it took..it was achieved!

When I was in hospital, my speech was so bad that when people talked to me I would be thinking ‘I wish I could reply…’ but it was just too exhausting to speak so I would just reply‘ k’. It was so hard because I would do a lot of video calls and I could see my poor family/friends thinking about what to say. They were basically just talking at me. Instead of saying a whole sentence, I would say one word and hope people knew what I meant. For example, instead of ‘I need to use the toilet’…I would just say ‘toilet’. My speech progress has been painfully slow but I record myself every few months and the progress is definitely there.

Photo of me, my nephew and my brother ❤️

This post is very difficult to write..but,so far everyone on Instagram/Facebook has been so kind and supportive. I don’t want my family & friends to be afraid of telling me their news. I generally really am happy when they do ❤️ I feel so sad when I think of what I have lost. I know you should never really have a life ‘plan’ but I had a general one. I thought that by my age I would at least be engaged and have a child. I really want to be a mother. I’m not saying that it won’t happen. I do have hope, but there are days when I wonder what the future holds for me. Even though those days are hard I’m so lucky to have supportive people cheering me on ❤️❤️ I will not give up💪

I don’t have many photos from the early days of hospital. My family, Theo and his family didn’t know if I would survive so pictures weren’t on their minds! It’s so sad for me to think about these times because while I was sleeping and unaware of what was going on, trauma was slowly trickling down. I know that what I am dealing with now sucks,but the pain people had to go through when they didn’t know if I would live, makes me feel so sad. ❤️

It wasn’t until my brain damage that the world of disability really opened up. I have never taken notice of wheelchairs before. I had never thought about accessibility. Now I constantly notice things.Things like rolling down the street and noticing how uneven the paths are or being unable to reach things at the supermarket. Yesterday I was at a cafe and yes,they had an entry outside for wheelchairs but inside the toilets were up a couple of stairs. I had an appointment the other day and when we went to say I was there, I don’t know what the woman looked like because I was staring at the back of her computer. At most receptions, it’s so degrading because they have to stand and look down in order to talk to me. It makes me feel exactly like a child. I must remember though, I’m grateful to be alive and grateful that I can move,eat,swallow and talk. All things I couldn’t do, but now I can ❤️

It takes me so long to get ready. Today , I went out and was given an hour and a half to get ready. I was still running late. Even though I was going as fast as I could. I am extremely slow at everything. It takes me about 30 minutes to shower and then another 10 minutes to get dressed, then there is brushing my teeth,hair,washing my face. It takes me a couple of hours.Having breakfast is always a big event. With food that I need to chew/break down,
It takes me forever. I eat porridge because I don’t have to chew it so it’s way faster. On days that I’m not in a rush, I eat other foods though. I’m pretty sure that over the past 3 and a half years though…I think I have gotten faster!

Went to the Christmas Lights with Mum last night❤️it was heaps of fun. Then on the last house, reality hit. There were two buses so people were everywhere. My eyesight has been severely affected so for me all I could see was random lights and heaps of people. The wheelchair being low doesn’t help, I feel like a child that can only see the back of people. The concrete was all uneven so my wheelchair kept getting stuck. I get easily overwhelmed and I just started crying and said ‘get me out of here.’ The good thing is that whenever mum and I are together, we are always laughing so pretty soon those tears were gone!