Starting again.

Before I can start again I need to take stock of what I have lost.

Up until October 2018 I was living in a one-bedroom flat I had owned for 10 years. I was working full time as an assistant head for the pupil referral units in West Sussex. I drove an adapted car which I used for work, visiting family around the country, day trips and short breaks.

I was able to be stood to my feet with the aid of one person and transferred to a wheelchair, the car, the sofa, the bed and the toilet. I could stand on my own with a walking frame and take a couple of steps. The rest of the time I used my powered chair.

Since the end of my long-term relationship I dabbled in online dating and was very surprised to find guys up for the company of a disabled woman and I had a lot of fun, including a lot of physical fun!

But from November 2018 onwards I found myself no longer able to stand up without two people and a mechanical aid, I couldn’t walk anymore, my hands and arms became weak and my left hand clenched into a permanent claw. I had a catheter inserted and my bowels no longer worked. I was eventually moved into a nursing home.

My flat has been on the market for over a year and several sales have fallen through. In January the buyer insisted he could move quickly. I knew I had to empty the contents of the flat so sold everything possible on Facebook marketplace, donated everything else of any quality and sent everything else to the dump. Then the sale fell through. I now have hardly any possessions at all. There isn’t really room for anything in my single nursing home room. A couple of friends are kindly looking after the bits I couldn’t bear to be parted with.

I sorted through all of my clothes. The majority went to charity, I have a small selection here and a small suitcase full, which at some point I will try and sell.

I returned my Motability car.

So, my physical belongings are very sparse indeed. A lifetime of items gone.

But, there are losses that cut much deeper than material items.

I can no longer swim which is a huge heartbreak. I was a good swimmer in my youth and rediscovered it as a disabled person after watching the 2012 Paralympics. It was an absolute joy to discover I could still swim and the only thing I could do non-stop without help for up to 45 minutes. I would swim once a week. Complete freedom! I’ve not ruled out ever getting in the pool again but it’s going to be very complicated and I won’t be able to swim as such.

Since January my right arm has been getting worse as well and is now as clawed as my left hand. Using my phone, the TV remote and the controls for my hospital style bed is getting harder by the day. I can no longer pick up a drink and I can barely feed myself – I can certainly never eat in public again – it’s very messy!

I have recently had two operations. I now have a suprapubic catheter and a colostomy. No longer having to use the toilet has definitely improved the quality of my life but my body feels very mutilated and completely signals the end of any hope of a sex life. Having only recently rediscovered the joys of it I am certainly not ready for it to end, but end it has.

Even harder to bear is the knowledge that I will never have a relationship. ‘You never know…’ is the most unhelpful and painful phrase I can hear in response to this discussion. Only those who know and love me know as well as I do that I will never have a relationship. I have a progressive disease which has taken away so much of me and is only going to get worse. I know I am loved by many people and I’m so grateful and lucky for that but it doesn’t stop the immense heartbreak I feel knowing I can never be loved in that special, intimate way. I crave intimacy, affection and the sharing of joys and troubles that you can only have with that one special person in your life.

I feel robbed of so much – the love of a partner, the love of children, the freedom to do whatever I want whenever I want to. It’s damned difficult.

Three weeks ago my ill health retirement came through.

So, in summary I have lost my home, my possessions, my car, my career, my ability to walk, my ability to swim, my ability to travel easily including visiting my family, my ability to use my hands and arms very much, my privacy, my sexuality and my ability to be in a loving relationship, and most of that in the space of eight months. Jeez.

I have now got to start again. I have got to find the energy to start again. I need to seek opportunities and find a purpose in life in order to keep going.

I’ll start with what I can still do at the moment. I have a powered chair and once I’m in it I can travel about quite freely and alone for a certain amount of time. I can get on the bus and go wherever I want. I can travel up and down pavements and in and out of any accessible shops, theatres, cinemas, cafés and so on. I live by the sea so I can go down to the seafront whenever I want.

The warm weather makes life so much easier. When it’s cold I am unable to take off hats, gloves, coats and scarves if I go indoors so have to have someone with me.

I can’t pick up items in shops but shop assistants are brilliant at helping me, including opening my handbag and taking out my purse and cash or cards then packing my purchases.

Now that I have the colostomy I will need someone with me who is able to change it if I wish to be out for a longer period of time, but I’m going to make this happen.

I’m going to start researching the possibility of a short break and travel further afield. My original plan when I considered retirement was to do travel writing from a disabled person’s perspective and I would still love to see if I can make this happen even though I’m not supposed to spend my money on anything but the basics.

I can dictate and enjoy writing so this is something I need to pursue further.

I have considered accessible architecture consultancy but haven’t yet begun to research how to start that!

I would also like to develop some sort of curriculum to teach young people about the difficulties they may face in having children so that they may be better prepared to cope with the terrible challenges and grief this can bring. Avoiding unwanted pregnancy is essential but understanding the other side of the story is as well I believe.

A lot of it is finding the energy. From waking up to going to sleep every bit of my day is exhausting. I am physically handled from start to finish with a body that doesn’t want to move at all. I’m never really comfortable. I’m either lying on my back in bed or sitting in my powered chair. Both are adjustable and I am constantly adjusting the position of my back or legs to try and find the best position.

I have to grieve for everything I have lost safe in the knowledge there will be more loss around the corner. I have to find the energy to start new things. I have to find new things that bring joy and excitement into my life. I need to be making plans so that there is always something to look forward to.

Maybe my flat will sell and I will be able to look at housing options beyond the nursing home. It’s going to be very challenging but potentially exciting.

The biggest joy is that I have the most loving family and friends a disabled, single, childless, jobless 46-year-old could ever wish for and it is them that keep me going through the bleakest of times. There are times when I am unable to reach out to them but just knowing they are there keep me going and when I do reach out they carry me in their arms.

I don’t really know how I’m going to start again or what I’m going to do but I do know I have no choice. It’s pretty overwhelming and scary. Wish me luck!