The past year hasn’t been the easiest for my family. In the winter of 2016, I was on the phone with my parents, when they first mentioned something might be wrong with my sister Jessie’s eyesight. My phone signal was bad, and I was on a break at work, so I didn’t really get the full message. I guessed she probably just needed glasses – most of us in my family do.
It was only a few weeks later when I found out she had a referral to Moorfields Eye Hospital, that I really realised the severity of what was happening. By that time, her identical twin had also been to the optician’s and they had found similar symptoms with her – an unusual area on the back of her eye. It was the first of many appointments at Moorfields, one of the leading providers of eye health services in the UK. Each time, there was a little bit of hope that maybe it might not be that bad after all.
I remember the day of their final appointment pretty well. This was the one where we would be getting a definitive diagnosis, as well as an idea of how severe it would be. I was meant to be in lectures for my Master’s, but I didn’t feel I could sit through it without panicking. As a distraction, I ended up heading to the cinema to watch ‘Beauty and the Beast’ – but when I left and headed to meet up with them post-appointment, the dread had set in again.
When I got to their hotel, they gave me the news. They were both given a diagnosis of Stargardt’s Disease – something that we had suspected for some time.
What is Stargardt’s Disease?
Stargardt’s Disease is a recessive, genetic disorder, that causes fat to collect on the back of your eye – specifically, the central part of your retina, called the macula. It’s the most common form of inherited, juvenile macular degeneration, and symptoms commonly appear in childhood or during your teenage years but can go unnoticed until later in life. In the beginning, central vision becomes blurry and loses colour, before losing sight in that area completely. It is rare for those with Stargardt’s to become completely blind, but many are left with only peripheral vision. It typically starts slowly, before becoming more rapid and then tapering off in later years.
The news broke our hearts, but obviously, the primary impact was felt by Amy and Jessica. They are both currently in their final year of university, and both previously took time out of their degrees because of poor mental health. The news came just as Amy was returning to her second year at Cambridge University to study Veterinary Science. Jessie was starting her year out from the University of Exeter, where she is studying Animal Behaviour. Both of their plans have had to drastically change following the news – Amy will not be able to practice as a vet (unlike doctors, vets must be able to conduct surgery, which you cannot do if you are visually impaired.) Jessie has always wanted to work with big cats but now has to decide what she can do with impaired vision. She recently had the opportunity to go to Africa with her university, which we made sure she could undertake – because we didn’t know if she’d be able to see them again.
Doing things because we don’t know if Amy and Jessie will be able to see them again is a common thing at the moment. And not something we ever thought we would have to consider in our family. At the end of the day, we are glad that we are in a position as a family that we can make these things happen – we know some other people aren’t fortunate enough to have these opportunities. We’re a strong family unit, that can support them, and each other, through the uncertainty ahead.
We will be taking part, as a family, in ‘Eye to Eye’, a sponsored walk raising money for the Moorfields Eye Charity. They support many individuals and families going through a similar experience, as well as funding new research that aims to make blindness a thing of the past. We are proud that as a family we can participate in an event like this to not only raise money for a worthy cause but raise awareness of sight problems like Stargardt’s.
I understand that money is tight right now – no one has as much of it as they would like! But even a couple of pounds thrown in our direction can make a difference towards our goal of £600. So please, if you can, make a donation. We would really appreciate it – and it would make walking for nearly four hours (with my family) seem worth it!
You can make a donation by clicking here.
Can you believe January is over already? The only silver lining is that it’s nearly February – which means my birthday, and I’m off to see to see Hamilton on the West End! But before that, let’s have a look at how I’ve been getting on with my goals so far!
Where has 2017 gone? I can’t believe it’s December already! As everyone gears up for the holidays, I’m looking back on my 2017 goals. So, let’s dive in!
1. Finish my Master’s Degree
This one was always a dead cert unless something went drastically wrong. There were a few weeks in August when I began to think about deferring my final essay until 2019 (this has been the year of continuous fatigue) but I manage to stick with it and get everything in. This was despite that fact that by that time I was basically working full-time! (More on that later). I knew that I probably hadn’t done enough at that point to get a distinction, but was happy with what I had achieved. I finally got my results back a couple of weeks ago, and not only passed by got a mark high enough for a merit – except my university doesn’t do them! Boo! Regardless, I am proud to have gone from a lower-second Bachelor’s degree to a Master’s degree, whilst also working crazy hours. I will be officially graduating on the 11th, and have basically been told I have to go because my family wants to come! I don’t particularly feel the need to spend a whole afternoon socialising and waiting for my name to be called, but there we are!
2. Fit in More Crafting
This goal has been a little bit up and down! I have added ten minutes knitting to my daily to-do list (although don’t really time it, I just finish one row of whatever I’m working on!). This has definitely helped, as it’s one of the easiest things I set myself to do. But, I’m still not managing to do it every single day, and non-knitting crafts have really fallen by the wayside. I’d love to be able to do some more papercraft and cross stitch, so think when my current knitting project is done I’ll have to mix it up again!
3. Develop My Career
This one has been a little bit of a rollercoaster this year! Way back in January, I was working as a stage manager for a brilliant new show. This was a fantastic opportunity to return to my first love, theatre. Shortly afterwards, I stage managed another show, this time a devised ‘dramatised tour’. Both experiences were great, I loved them – but they were so stressful. My anxiety and depression were all over the place, making it difficult to get anything done that wasn’t work. Not what you need when you’re also trying to finish a Master’s! I began to see that even though I loved the career, it wasn’t working for me. On top of my mental health, I’ve had more physical health problems during the year that, as of yet, the doctors have refused to diagnose. A job that requires lots of running around and late nights just isn’t healthy for me. I think I knew this four years ago when I first left, but because I had never loved anything the same way, I didn’t know where to turn.
I got lucky though. On a whim, back in February, I applied to do a marketing administration work placement for an arts organisation. I figured it would be good experience whatever I ended up doing. Well, soon after that placement started, their Student Recruiter left, and I was offered the position until that contract ended. Then, their Marketing Assistant left, and I was asked if I wanted to take on that role for an additional two days a week. Meanwhile, my previous experience working with adults with learning disabilities and driving minibuses meant I was asked if I would like to work with our after school disability programme, with the occasional Saturdays. ‘Why not?’ I said, suddenly working five and sometimes six days a week. By this point, I’d fallen in love with the organisation, and had found a new passion in marketing – something I never thought I would enjoy! But all of this was only until the end of 2017, when they were recruiting a full-time Marketing and Communications Officer.
Of course, I applied for the full-time role, really not expecting to get it but not wanting to let go of the job I’d fallen in love with. Much to my surprise, I found out last week that my application was successful! Plus, my manager wants me to continue my work with the disabilities programme, allowing me to be flexible with my hours to make that happen. I really couldn’t be happier, and am still riding on the high from the news!
Safe to say, I have achieved this goal for 2017!
4. Make Some Friends
This was always going to be a hard one. I did start off the year really trying, but as socialising isn’t always something I enjoy, it’s pretty easy to talk myself out of it. Now I’m starting to get a more regular timetable, I will continue to try to do this. I have been talking to people at work, and going out on our work socials. I just always struggle to trust people! But all I can do is keep working on it. I have been trying to at least maintain current friendships, which I guess is something?
This will have to be a goal that comes with me into 2018!
- I passed my Master’s degree, and didn’t just scrape through like I expected!
- I applied for and gained a full-time job at an organisation that I love.
- I’ve nearly finished another large craft project – this time, crochet, which I’m really not good at but determined to try!
Tune back in at the end of the year, when I’ll be outlining my goals for 2018 – and let me know if you have any suggestions or goals of your own!
Saying goodbye to the best stupid dog
It’s quite obvious that I am a cat person. If you didn’t know that already, then where have you been? I do have a special place in my heart for all the dogs we have had through the years though. One stupid dog in particular. But more on her later.
Offie (full name Othello), was my first dog. It took an exceptionally long time to realise that no, he hadn’t gone to live in the attic (a place four-year-old me wasn’t allowed to go). My parents had made the heartbreaking but wise decision that an ageing dog in the same house as four children under four wasn’t the best living situation.
It was a few years before we got Dizzy (full name Desdemona), an amazing Nova Scotia Duck Tolling Retriever. I have an image in my head of Dizzy being quite a serious dog, but I know that in reality she probably wasn’t. She was certainly pretty well skilled with the ‘Toller scream’ (see – and hear – below). When she was a few years old, we decided to get a second dog, Mabel (full name Mabel.)
Mabel: The Best Dog Ever
I remember the day we went to get Mabel. It was quite a drive from our home, but I was so excited. It was unfortunate that when we got there we discussed she’d had a bit of a dodgy tummy, but because of the long drive, we had to take her home that day.
The smell of doggy diarrhoea is one I can remember vividly to this day. It didn’t help that my and my sister refused to put her in the boot because we wanted to play with the cute puppy.
Mabel seemed to stay as a puppy for most of her life, both in appearance and behaviour. When Dizzy was still around, Mabel was always beta of their pack of two, so never really needed to grow up. After Dizzy went over the Rainbow Bridge, we got Hector and Cassie. Mabel seemed happy to bow down to her feline overlords rather than acting like an adult dog. Even now, she has a cheeky smile as she climbs onto the sofa next to you, and she gets overexcited about any little thing.
She is getting older though. It’s what surprises me most when I go to my parent’s because I’m not there to see the gradual decline like when I lived there. When I visited last weekend, even sitting up made her pant. She wasn’t eating her food (although she was eating plenty of ice creams when offered) and would look at me in confusion when I tried to send her into the garden to go to the bathroom before bed. Whilst we’ve joked for many years that she was a dead dog walking, it became apparent that the date was fast approaching.
When I left my parent’s last Monday, I made my last goodbye to Mabel. I was half expecting her to still be dragging herself around the house when I return later in the year.
It’s a weird thing with pets, isn’t it? That sometimes we know they’re going to die before it happens. It’s written into the calendar as something that will take place at a certain time.
My mum phoned me on Thursday to let me know the veterinary appointments have been made. One on Wednesday, for a checkup. One on Friday for the procedure. Part of me hopes that the vet may still turn around and say ‘Don’t be silly, she’s got years left in her.’ But it’s unlikely.
I know it’s not a decision that has been lightly by my family. It’s a topic we’ve come back to again and again. It is a kindness, to have her put down. But it’s still heartbreaking.
Mabel has been around for half of my life. I don’t really remember a time before her. She’d been a constant companion – one of the best – and she’ll be greatly missed. Here’s hoping that my parent’s give her a good send off this week – with lots of ice cream.
A Good Send-Off
I’m going to be posting my favourite pictures of me and Mabel over on my Instagram throughout the week, so please check it out.
Love you Mabel, my stupid dog. Cassie, Moët, Chandon and Dizzy will meet you on the other side of the bridge.
Update: Good news! When Mabel visited the vets, they said they felt that there was one last thing they could try before putting her down. Something nmust be working, as at time of updating this post (1st Dec.) she is still with us! Fingers crossed we get to spend one last Christmas together.
We’re nearly a quarter of the way through 2017, so now seems as good a time as any to review the goals I set myself for this year. This is also a chance to share my 2017 Achievements so far with you all, and for you to let me know how you’re getting on with you own in the comments below.
1. Finish My Master’s Degree
Back in January, I submitted my first essays for my Master’s degree. I’m not going to lie, it was terrifying. I barely scrapped through my Undergraduate degree, so have been going through some serious imposter syndrome since I got accepted onto the course.
All of this taken into consideration, imagine my surprise when I more than passed my first two modules. My university doesn’t do merit grades for Master’s degrees, but if they did I would be well on my way to getting one. I honestly couldn’t be happier! I’m holding onto my achievements so far as I head into the Easter break – the time to get my next two assessments done and dusted. A distinction isn’t completely out of the question if I score well on these, so I’m going to be throwing myself into the work to make it the best that it can be!
2. Fit in More Crafting
I’ve been a little up and down with this goal. Some weeks I’ve been doing loads (generally when I have something to procrastinate from),and others I haven’t gone near anything craft related. I’m slowly improving though, remembering to make time for myself. I’ve also been reminded that I always feel better when my downtime still seems productive. With this in mind, I’ve taken to adding craft projects to my to do list, so that I feel like I’m getting stuff done whilst still making time for myself to relax. I currently have a couple of projects on the go, which I hope to share with you all soon. I’ve also just finished a huge cross stitch project that I’ve been working on for over a year. I’m hoping to post about it soon – it just needs to get to it’s recipient first!
3. Develop My Career
I started the year by returning to a career I thought I had left behind me long ago. In hindsight, adding a full time job on top of full time studies probably wasn’t the wisest of choices. Regardless of this, it went really well, and I began to question why I had ever left it in the first place.
So, since then I have been seeking out stage management work again. It’s been a little difficult, as I’m restricted by my contact hours at university, but I’ve been making a couple of applications a month. I even have a job interview this week for a perfect sounding job that would combine my stage management experience with my growing applied theatre knowledge. So, fingers crossed for that.
In the meantime, I’ve been continuing with my work placements for university. On top of my pre-existing one from last term, I have a new placement each Wednesday. This one focuses on Marketing and Administration; Two areas I have very little experience in but which will be essential in my future involving an amount of freelance work. On top of my work placement, I’ve started doing some paid reception work with them, which should help make ends meet!
I’m still not sure where all this is leading me. I suspect though that I might be heading towards a series of odd jobs to make ends meet, interspersed with the work I want to do. When I work out what that is, exactly.
4. Make New Friends
I kind of hate myself for putting this on my list of goals for the year. It’s not that I don’t want friends – it wouldn’t be on my list if that was the case. It’s just so difficult! I hate having to put myself out there. Years of social anxiety and trust issues have built a massive wall I have to climb over whenever anything remotely friendship like comes my way.
That being said, I have been making baby steps in the right direction (mainly with help from my lovely ‘Mental Health Specialist Mentor,’ courtesy of the university.) I met up with an old work colleague. I’ve been pushing myself to join more conversations between classes at university. Most scarily of all (for me, at least) I went along to a London Craft Club meetup earlier in the month. The bonus of this is that there was very little pressure to socialise, as everyone was engaged in their own crafts. Plus, it helped me towards my second goal of making more time for my crafts. I haven’t managed to go back since then, but I’m hoping I will some time soon.
So basically, no huge leaps of progress towards any of my goals as of yet, but a couple of little achievements worth mentioning. I’ve listed them below, mainly for personal bragging reasons. It also helps boost my mood when I’m feeling rubbish to remember everything I’ve achieved. Don’t forget to add your own achievements and goals in the comments!
- I have received good marks for my Master’s degree assessments so far.
- I worked on a show as a Stage Manager for the first time in three years. The show got great reviews, and I received high praise for my part on the show.
- Pushing myself to the edges of my comfort zone, I went to a craft group meetup.
- I completed a super secret craft project that I’ve been working on for over a year. Hopefully you’ll hear more about this really soon!
I’ve never been a fan of New Years resolutions – If you want to make a change, why wait for a new year to do that? But I do like setting myself goals, and the new year does make a good landmark from which to measure my progress. So, here are my 2017 Goals!
1. Finish my Master’s Degree.
All things going well, this should be a dead cert. What I’d really like is to graduate with a distinction, but we shall see how that goes! But I’m proud of myself for even working for my Master’s, and know that a distinction won’t be worth it if it comes at the cost of my mental health, so will continue to just do my best without sending myself crazy!
2. Fit in more crafting.
Whilst it is something I love, crafting is also the first thing pushed to the wayside when things get tough. But as I know from many rounds of therapy, reading and personal experience, times of high stress are precisely when I need to make time for pleasure activities. What’s the point of living a life with just work? I did that for two years, and look where it go me. So, at least one hour of crafts, please and thank you.
3. Develop my career.
A vague goal, but since I still don’t know at nearly 25 exactly what I want to do (who does?), I can’t get much more specific right now. I want to continue to look at theatre and mental health, but I want to keep stage managing too. But, part of me is always tempted to just find a job at a cattery in the countryside. So, we’ll see where I am at the end of 2017 – just so long as I’m not standing still. (And, you know, have some money. Roxy still isn’t contributing to the rent bill.)
4. Make some friends.
It’s not that I don’t have any friends. I have some great friends. But I really don’t socialise often. Part of that is because of the crippling social anxiety, but at the end of the day, that’s not going to improve by sitting in my flat alone. And living in a capital city really doesn’t give me any excuses to not make more friends – there are hundreds of clubs and meet up groups in the area, I just need to make the step. So, by the end of the year I want to be doing at least one social thing a week. Maybe. That sounds very scary.
And that’s all I have right now, although I’m sure I will continue to develop my goals as the year chugs along. How about you? Any resolutions or goals? Share them with me and we can be accountability buddies!