My Changing Life

Agnes Daniel
What Agnes Did
Published in
10 min readJul 24, 2016

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Hi, I’m Agnes,

I’m a 26 year old violinist and teacher and I also run a music school in West London. I love to cram too many things in, teach, cook, eat out, dance, travel and discover new places.

I’m also recently disabled.

A year ago I was walking around without a care in the world, then, suddenly, within the space of a month, both my hips stopped behaving. They started making this horrible clunking feeling/sound every time I walked, and because of this my lower back has gone on strike. I’ve had every scan under the sun….. twice, injections into every part of both my hips and more recently a tendon lengthening operation.

So far, nothing has worked.

My doctors say they’re still working to fix me (amazing) but there’s no time frame (not so amazing), it could take anything upwards of another year. I’m now trying to make the most of my new normal. I take pain medication everyday and split my time between my trusty crutches (indoors), wheelchair and newly acquired mobility scooter (outdoors).

I know people always say a year is no time at all, a moment in the grand scheme of your life which you’ll look back on as a tiny spec. However, a year is 12 months (I realise this isn’t news to most people), 365 days, 8760 hours of my life. These seem like pretty big numbers to me.

The problem with hip conditions is that a lot of patients are of a certain vintage. Lets just say I spent a period of therapy at the Chelsea Pensioners Hospital. I wanted to talk to someone or get comfort that someone understood the twists and turns my life was taking.

Facing the next 8760 hours seems a steep mountain to climb but I think the last year has taught me a thing or two. In the spirit of reaching out I wanted to share some of my thoughts. Perhaps they’ll resonate with someone else in a similar position and make their first 8760 hours a little easier.

The 5 Stages of Grief

I know right? not the most cheery title, but bear with me.

Having lost someone close to me before, I wouldn’t dream of saying this is the same emotional journey. However, the feelings I’ve experienced as I’ve lost the parts of my life I took for granted are clear, all too real and do share a lot of similarities.

Denial

When I was in the initial sharp decline of my hips going, I would focus on every scan, every appointment, every treatment as if it was the one that would fix me. This kept me going for a while but I don’t think I really realised or accepted what was happening, or how much I would need to adjust my life.

I didn’t tell friends or family what was going on. I didn’t want to ring up with a “Hi how are you? I’d love to see you soon, by the way I’m now in a wheelchair…” but in hindsight I think the main reason I didn’t want to talk about it was because I didn’t understand it myself.

I was absolutely determined my partner and I would go camping with his family in the summer and I was damn well sleeping in a tent on the floor like we always did. MADNESS! It wasn’t until a week before that we finally told his parents what had been happening and altered the plan.

Denial has also helped me, it’s made me fight to keep doing the things I wanted to for as long as possible. It meant I still ran my business, taught the violin and put on concerts, even when I probably shouldn’t have. It may not have helped my body, but denial helped my mind, it kept me fighting.

Anger

Muhammad Ali vs George Foreman

I’ve been a Muhammad Ali fan ever since I was a kid. While everyone else at boarding school owned long-blonde-haired Orlando Bloom posters, I proudly hung a print of “first minute first round” above my bed.

Sometimes I imagine that I’m Ali and my hips are George Foreman, embroiled in their fight “Rumble in the Jungle” and my hips have got me on the ropes, hitting me round after round. Every appointment where they say “we’ll have to wait and see how it develops” or “we’ll have to try something different but the waiting time is several months” then ding ding ding next round, get ready to absorb some more punches.

I’m so angry and the desire to scream it all away, hit something, kick something (not such a good plan in my current condition, granted) just to do something is always there. I want to shout at my hips, hold them accountable, ask “why me?”. I get angry with myself, angry with how I react to things, angry with the things I accidentally snap at my partner when I’m in pain, angry that it takes me forever to get my bloody jeans on!

But thats ok, I’m allowed to be angry.
Angry is good.
Anger fuels my fighter.
My Ali……and Ali walloped Foreman to the ground in the eighth round, after being beaten again and again.

Bargaining

I have made so many deals with my body over the last year you wouldn’t believe.

“Please keep the pain at bay until I’ve done this one concert then I PROMISE I’ll stop for a few days”

“If you don’t clunk today, I’ll buy steak for us?”

“Please let me sleep, I will do anything…”

I’ve also bargained with the people around me, mainly my partner.

“Pleeeease can we travel to France for a wedding 10 days after my operation? I won’t complain about my pain once I promise”

“Pleeeease can we organise an orchestral music weekend for 80 children in the middle of a field?”

Bargaining doesn’t work because you can’t control any of this. If you try to make deals you tend to end up disappointed. Instead, cut yourself some slack when you have a bad day, and grab hold of the good ones with both hands!

Depression

Mum’s inspirational gift

Gosh aren’t we getting cheery! But seriously, people/medical professionals ask me if I think I’m depressed or anxious all the time.

I always reply with roughly the same thing: “yes, but wouldn’t anyone be if they suddenly couldn’t walk to work, go to their favourite pub or tie their own shoelaces?”

After my operation I was probably the lowest I’ve been this whole year, I felt totally out of control of my body and totally reliant on my partner. To top it off my symptoms started returning whilst I was still in hospital and the fear that the surgery had been a failure and the whole thing would go on for years was overwhelming.

And let me tell you the sadness I feel is truly all encompassing and exhausting.

One of the hardest things to deal with isn’t just your own sadness, but the sadness of those closest to you. To see the person you love more than anything, your teammate, suffer at the hands of your disability is heartbreaking. If you let those feelings run unchecked they drown you in a vicious circle where you feel shit because they feel shit because you feel shit because … aaaaargh!

My mum helped me most with this, she sat down next to me one day when I was sitting in the garden crying and essentially told me to snap out of it. Whilst this might sound harsh (and felt it at the time), she was right.

She wasn’t telling me to never be sad, just not to let it take over my life. If you let it envelop you, there’s no light, no fun and no space to get strong enough to win.

She showed me that I needed to be positive for my partner sometimes, because the situation was sapping his energy as well and occasionally he needed me to be his support.

For this advice I am forever grateful because even though sometimes I am still gut wrenchingly sad, I can also laugh, have fun and find ways to roll with the punches.

Acceptance

I want to start by saying I don’t think I’ve accepted everything, and thats ok in my eyes. I know I should probably be working on developing some kind of zen which exempts me from any undue angst but this optimism works for me.

I’m not saying its easy and in reality about once a week (or Pete would argue more) I wobble… but:

  • I have accepted that at the moment I have to sit down a lot.
  • I have accepted that at the moment sometimes I will be sad and thats ok.
  • I have accepted that at the moment my partner can’t always be positive because this sucks for him too.
  • I have accepted that at the moment however pretty heels are, they are just not a good life choice right now.
  • I have accepted that at the moment I have to phone places to find it if they have a toilet without stairs.
  • I have accepted that at the moment roof bars in London are 9/10 not my friend.
  • I have accepted that at the moment I can’t move much, so my clothes won’t fit as well if I want to continue eating nice things (which is a sacrifice I’m willing to make).
  • I have accepted that at the moment I have terrible gallows humour and it probably makes everyone nervously laugh rather than actually.

I accept those things at the moment, but I don’t accept them as my life story. Until someone tells me otherwise, I’m fighting until my eighth round and beyond that, I accept nothing.

There is one other important thing left which makes those 5 stages easier to bear, carries you through and ensures that in the long term everything is OK.

Love

Love is your family, who let you cry down the phone even though it breaks their heart.

It’s them getting a carpenter to build an intricate ramp system so their old farm house becomes the most accessible place you’ve seen.

It’s flying over in a matter of days when they can sense its all got too much.

It’s bringing restaurant lunch when your sitting in hospital to avoid the cheese sandwich you were offered.

It’s them telling you when you need to start being your own cheerleader again and toughening you up.

Dancing the night away

Love is your sister who’s endless optimism is the greatest thing she can give you.

Who will turn up and potter and suddenly, washing up will be done and a meal will be on.

Who will insist that chair dancing is a very real and possible thing and spin you round the dance floor until you can’t smile any wider.

Promenading.

Love is your extended family who support you unconditionally.

Who find the only B&B with a disabled room so you can all stay together.

Who come up and help you organise 35 children under 13 from a wheelchair and make sure you eat.

Love is your friends who always insist you smile.

Who wingman you to events when you’re nervous of being there in a chair.

Who spend 12 hours in ikea with a wheelchair and help you move the office you had to move downstairs.

Who let you cry into your wine but make you laugh 2 seconds later.

Who make sure you are the most prepared inpatient in hospital, and come with the most luggage.

Love is your partner catching you every time you falter, who sticks around by choice, and lives every moment with you.

Love is taking you to the toilet, and shaving your legs and helping you shower.

Love is celebrating the wins however small as if they were the olympics.

Love is not showing the sacrifices they make everyday for you.

Love is being your champion every moment and being a team.

In the last year, my life has changed more than I could have imagined, but not everything has. The same things make me laugh, the same things make me smile, I have the same drive, the same ambition and the same dreams.

The next few rounds of this fight will no doubt be just as tough as the last ones but I’m going to use them as an opportunity to write about the challenges involved, the wins and all the things I do.

Then, one day, I’m going to write about my eighth round.

Country side scootering.

I’m not naturally a sharer and this is my first foray into writing something personal. I’d love to hear what you think in the comments and if you could give it a below I’d really appreciate it.

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