Where to even begin? Things have really been an absolute shit show; and only occasionally this time, has that involved real shit. There’s been big positive changes, like work and driving again. I’m desperate to share that joy with you but this month other things have eclipsed that. I’ve needed some solace; which has been hard to find in the storm. I haven’t had the time, or mental strength to talk through things, but I’ve also had to take time to consider what I’m going to say.
I’ve shared so much on here. Deeply personal things, that haven’t always been easy or pretty; still the things I’m about to talk about are difficult because they involve other people’s decisions, and of course I’m only telling half a story. I intend to be fair, but I also believe in the Anna Lamott saying ‘You own everything that happened to you. Tell your stories. If people wanted you to write warmly about them, they should have behaved better.
My fiancé and I ended our engagement a few weeks ago. I intended to make this brief out of what respect I harbour for him, but at the same time there is a lot of issues that are relevant to living as a disabled person and the pit falls of self-worth and self-image.
Firstly, I will never be able to repay some of what he did for me, especially when I was first discharged. Literally wiping my bum and helping me dress, emptying catheters, ferrying me to appointments… I will always be grateful for that. In the end though it became too much for him to handle. It is no-ones fault per se. He gave what he could. However, it hurts a butt load.
You may recall that, at the very beginning, I gave his ring back to him. I did not choose this life and wasn’t going to hold him to a commitment, when the life we imagined had now become so very different. He refused, and he kept refusing. I was asked to stop offering an ‘out’ when he found it hard. He saw it as me pushing him away; as if I was saying I didn’t believe in his love for me. What he didn’t see, is that I was offering him an out because I loved him. Because he wasn’t really coping when I was living in hospital, and I knew that on discharge the real grittiness of day-to-day life would begin. Because I knew him so well that I knew looking after me in the early stages, supporting my mental health as I grieved, not to mention running a household, (when before me he had only ever lived with his parents), was going to be a real challenge for him. Especially to a standard that, I didn’t only want, (if my house gets too messy I get anxious and crotchety), but that I now needed.
Things can’t be left on the floor because of my wheels and transfers. Things have to be clean because of my susceptibility to skin and water infections, not to mention you do NOT want to know what sickness and diarrhoea are like with an SCI. Transferring onto a special chair to use a toilet and get trousers out from dead legs just isn’t practical in a rush; unless you want to end up falling on the floor and opening your bowels there, usually it involves incontinence pads and frequent sheet changes. All of this is part of the life I now lead. Trying to prevent getting sick, or stuck, or falling, but also preparing for all such eventualities. It’s f**king hard and exhausting. Not just for me but for him. He may have wanted me, and all I was before the accident, but the accident changed me. It was no ones fault but if we were gonna end I wanted it to be on good terms, with no bitterness, no disappointment.
I would never have blamed him then and we could have remained fast friends, and who knows maybe, when I got better, (because it all WILL get better), maybe we’d try it again. He wouldn’t hear it, and set about to convince me he was never going anywhere – no matter what, no matter how hard. While I had my doubts and reservations, I watched on with awe as he kept rising to the challenge and he continued to convince me. He struggled, and we argued but he always stayed.
Still, the demons of uncertainty remained. The thought of anyone wanting to live their young years, that should be filled with… …hope …and sex …and passion …and travel …and adventure… with someone who had to rebuild her life in all of those respects, seemed unlikely. He’d become unhappy, he’d resent me. Losing my legs didn’t just change my mobility. It changed my hygeine, my body shape, the ‘predictability’ of my bladder and bowels, my self worth. I haven’t really touched on sex in the blogs yet because, if I’m honest, I’m still figuring out how I feel about it all. I’m still grieving so much. There aren’t just the physical blocks – decreased sensation, possibility of shitting or pissing during the act, pain, fatigue positioning – but MASSIVE mental blocks. I haven’t felt ‘sexy’ in a long, long time. I was just coming round to the idea of building that part of our lives again, when I got a string of UTIs and had to have a catheter put back in. Long term.
The guys among you may not realise this – hell, some of the girls I know don’t even understand their own holes – but the uretha, (where the pee comes out and where catheters go in), is hella’ close to our baby escape hatches. AKA ladies and gents, having a catheter in makes me even less comfortable with sex. When this problem came up it needed to be a no brainer. I had a shit quality of life at that time. I was peeing myself every few hours, meaning not just extra faff with wheelchair cushion, bed and clothes changes, but also because urine buuuurrrrnnnns, almost like acid, and my skin would be more likely to break down and give me pressure sores, which is a big thumbs down. Still, it wasn’t such an easy decision. I was marrying this guy, he needed to be involved. My body and health ,yes, but OUR relationship and quality of life. There at least needed to be a discussion. I remember phoning him from my Mums and telling him what needed to happened, but that it was gonna mean sex would have to wait again. It wasn’t fair on him, after recently getting his hopes up that I was ready to explore that part of our life again, it got taken for reasons beyond anyones control. I tried to keep him happy, and on my dark days I’d feel like a failure; that the affection I gave was not enough. I knew sex was important to our relationship, to him, I kept trying. My head was a bit of a mess to be honest. I struggled between not wanting to force myself, because he’d be able to tell it wasn’t genuine, and wanting to ‘repay’ him for staying. Moments of genuine passion were rare and he’d cling to them with hope. It hurt us both to keep clinging on, and that’s why I kept having the dialogue of going separate ways.
The point in all these ramblings is I can forgive him for struggling, but I was an emotional, angry wreck. He was clearly so unhappy, and that broke my heart, but also made me angry in a weird way. I felt the things he was unhappy with were beyond my control, or at least understandable! They upset me too, of course they did. After all, they were physically happening to me not him. He struggled, we argued, we had therapy. He was working full time nights as well, and he was often tired and stressed and I understood, but there wasn’t much I could do to help.
Actually no, there was, and I did. I made lists and charts to help him organise, so that he got more time to sleep at least. I tried to encourage him, but the more I tried to help the more it felt like I was nagging him. I’d try and plan fun things, so we had time together. I knew he needed down time, and despite what his friends think I tried to give that to him. I even started taking myself away for weekends at my parents to give him a break. So yes he was working full time, in the old house he was cooking and doing most of the household chores – it was hard but it wasn’t going to be forever. The end was in sight. A bungalow where I could start cooking again and doing more chores; a dishwasher, a tumble dryer, a guest bed if I needed it in the day and wouldn’t need to break his sleep, a car so I could take myself to appointments and get things done for us…
The end was in sight. The hardest bit was nearly done with. I was so excited, but he started getting distant and depressed. The things that should have helped, and that I was happy about, seemed to get a ‘whoopy fucking do’ sort of response. It may seem little but being able to finally help him and take the pressure off, was massive for me. I started doing more and I was proud of it. It was new though, and I would get really tired. Sometimes he still had to cook, some chores were still far easier for him to do half, (or more), of the time. I was always thanking him, always feeling guilty on the days I was in too much pain still, but I felt our life was about to get better. He just didn’t seem to see it. Some days when I’d ask him to do something for me, (usually in the interests of time), he’d genuinely strop. I started feeling more and more like a burden. I kept telling him I loved him. I kept telling him I appreciated all he was doing. I kept hoping. When he told me he felt like my carer and not my fiancé I was devastated. It hurt. Couldn’t he see how hard I was trying?
I was progressing so fast. I got back to work. I was getting stronger. I was standing in physio. Yet, somewhere along the way he stopped celebrating with me. He maintained that he loved me still, that he just couldn’t keep up with me. The more progress I made in life, the less happy he started to seem. I didn’t know what to do to help. Small things seemed to hurt him. He lost all drive. Then he stopped sitting next to me. I started going home more, I asked him to go to the doctors but there are some things you cannot do for people. He seemed to genuinely believe he couldn’t organise things for himself, because I ran our weekly timetable, as if I wouldn’t move things around. Honestly I would have been happy to go with him to the doctors, or to visit his family. I would have done whatever I could.
It was around this time our finances were becoming a problem. I was paying our gas, electric, rent, water, council tax, internet. The rent took all but £45 of my benefits each month. I just put my head in the sand. It’ll be okay. I’ll be upping my hours soon. I had to ask him to contribute more. He had made it clear at that point that he felt like he had nothing to enjoy anymore and he couldn’t give more. He’d stood by me, maybe this is the least I could do... I tried to stop smoking to ease the burden. It wasn’t until I had maxed out my overdraft and couldn’t pay the rent that I had to confront it. This final stressor was breaking point for him.
The following days were awful. Full of I don’t knows. Both of us had made some mistakes, but the worst thing was somewhere along the way we’d begun to resent each other. I didn’t need as much help anymore, (and I think I’ve proved that by coping alone for the last few weeks, my mum stayed a little while, but honestly with a very hands off approach), and yet he’d started making me feel like more of a burden than ever. He felt I didn’t care about his mental health, but couldn’t see all the effort I was putting in. We just weren’t speaking the same language anymore. Finally he said he thought he was giving everything and getting nothing in return; he couldn’t be happy anymore. I couldn’t keep him anymore. I had been clinging on to the last part of a future I’d imagined before the crash, but I couldn’t salvage it anymore. If this is what he wanted I shouldn’t try and hang on anymore. Things had got better, but it hadn’t got easy, and he couldn’t cope.
Within an hour everything he owned was in the back of his car. I was left with a wedding to cancel by myself, a broken heart and with some (hopefully final) bloody big hurdles. What could I do but get on? I re-applied for benefits, re-arranged the house, drank a lot of wine, cried a lot of tears and now I am trying to accept and move on – because what else can I do? I went to the two family weddings the week after with a bloody huge smile, and a heart filled more with love than sadness. The couples I witnessed get married deserved only positive energy and love.
I’ve been angry too. In fact I’ve been fucking livid. Mostly because he had told me so many times he wouldn’t leave, because he’s still telling me that he loved me more than I’ll ever know, and to me while I will never take what he did do away, in the end the love had gone. Also because some of his friends have painted me as some slave driver, that I didn’t care about his wants and needs, that nothing was ever good enough. They are bound too I guess, all I would say is they weren’t there, and they will never know how I felt or what I was simultaneously going through. I will be the first to admit I put a lot on his plate; but he wasn’t alone. I was in it with him, but when someone can’t see what your trying to do is love them there is nothing left to build on; you can’t help someone when you’re falling apart, and you can’t help someone who won’t take the steps to help themselves.
To his credit he still offers to help when I’m in trouble, but I’ve lost my faith. Why be happy to help me now? But I thank him anyway. There will be those that will criticise this post as airing dirty laundry, but this blog has always featured any hurdle I came across. He is aware of this post. He knows what I was gonna say, all of this I said to his face and we can agree to disagree with the way we saw things. I’m not painting him as a bad guy. I would please ask that no one posts negatively on this, from either side. It isn’t worth it. The relationship is over and all him and I want is to be civil. No more negativity is needed, it’s already a sad thing parting ways, especially with someone who has gone through something so life-changing with you. Anyway, I tried and he tried; all there is left to say is in the end it wasn’t enough. I will always care about him, I will cherish our happy times, I will love those I met through him. I hope he finds the love he needs.
Now is the time to refocus and rebuild. If we hold onto pain it destroys us. So here’s to the triathlon I’m doing next month. Here’s to celebrating my milestones. Here’s to building a career path. And… here’s to love. In this shitty time I have had the love and support of a tribe; and that will always see me through to the next challenge. I have so much more to tell you, and I’m hoping now this is all out, my typing will once again flow to share with you all the joy, (and sorrow), I’m finding in this new life of mine.
The devil may have whispered in my ear, ‘you are not strong enough to withstand this storm’, but today I am whispering back, ‘I AM the storm.’
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