The weather last Tuesday couldn’t make up its mind. As my Dad drove us through English countryside, I marvelled at the increasingly unlikely rays of concluding summer, draped on a landscape that, not two minutes before, had been kissed by gentle showers. The greenery’s dewy sheen spoke of life and breathed energy into the air. It was an appropriate state of affairs as we were on route to say a farewell to a man who had a love of the forest and a vibrant energy. I didn’t know him as well as I would have liked, but I was incredibly fond of him. Having considered members of his family, as my family for years, on the occasions we met he fell right into place as the Grandaddy of our rag-tag gang. It doesn’t ever make things easier, but it was a good send off, and I’m glad I could be there. The undecided weather also mirrored my mood. Of course I was sad, but I was also pensive and, despite the somber order of the day, I was grateful to be with people I love; reminiscing with a warm smile, and supporting them – like they have supported me – in a difficult and devastating time.
Despite distance and my being in hospital, I had never considered not attending, until we were nearly there. The reason for that momentary waver, was something I previously experienced attending a family occasion; I didn’t want to draw any focus away from the point of the day. A stupid concern, (as if a wheelchair could upstage a casket), but when you can feel like there’s a neon ‘Cripple’ sign above your head and see some people look at you with sadness and concern, you can truly feel like a distraction. Essentially, it’s a matter of feeling extremely self-conscious; that you stick out like a sore thumb – like being the only one sat down when the coffin was carried in, (even if your Dad tries to make it funny so you don’t feel it so keenly). You also don’t want people to be worrying about you, when they are supposed to be focused on something more important; or even worse making people feel uncomfortable. There are still people in my family’s circle who haven’t seen me in the chair more than once, or even at all and I appreciate it is somewhat of a shock for those who care about me. Not because they don’t know all to well what has happened, but because knowing my circumstance and seeing it for the first time are somehow different. There was one in particular who I knew was finding the idea hard, so much so that she’d been worried about coming to visit. She’d already be upset today, and I just worried about adding to her, (or anyone else’s), distress. My concerns were ill founded of course; people were glad I’d come, even the ones I’d worried about; but feelings like this are all part and parcel of coming to terms with the wheelchair as an extension of myself, instead of a burden or inconvenience. I’m still adjusting.
Sometimes dealing with the weight of other people’s feelings ,about what’s happened to you, is hard. They don’t do it intentionally, but it’s still a difficult thing to see someone hurting because of something that has happened to you. When it first happened, I found myself trying to comfort those around me. I remember calling a friend and saying, ‘Hey Beautiful, I’ve got some bad news. I had a car crash, I’ve broken my spine and we don’t know if I’ll walk again’, at which point she started to cry and tell me how sorry she was. I was crying too, but I remember telling her it wasn’t anybody’s fault and ‘it [was] gonna’ be okay’. I just didn’t want anyone to hurt because of me, which I realise now was never going to happen. When you love someone, you hurt when they hurt, and I am lucky enough to be surrounded by people who love me. I have to stop feeling bad that I can’t protect them from this. I have to stop feeling guilty, that I’ve caused them heartache. There was a time after it first happened that I kept saying sorry to my parents, fiancé and best mates. Although the accident wasn’t my fault, I just hated to see them upset and feeling powerless to make it better – sorry just felt like the only thing I could say. The S word has been banned by a number of my nearest and dearest, but it doesn’t stop the feeling.
There is a flip side though. It’s an ugly thing but when I started this blog I wanted to be honest; whether it was embarrassing or painted me in unattractive light. After the bravado left and the pain set in, I have been angry at close ones for ‘not handling it better’. For still being upset, when I was battling between trying so hard to accept it and starting to fall apart. It was around the same time, that I’d snap when they’d try to help me do things, or treat me like I was made of glass. At the time it made me feel like an invalid, now I realise it was because they felt helpless. They couldn’t make my situation better, so they just wanted to feel useful anyway they could. The S word feels appropriate here, because I am sorry for being short and snappy with my family; especially my parents, brother and fiancé. I’ve said sorry to them - most of the time - about 20 minutes after being a bitch and they’ve – most of the time – understood that the anger isn’t at them: it’s inner frustration, it’s pain. I’ve also been angry with people who ‘couldn’t face’ seeing me. I have thought things like ‘suck it up!’ and ‘this isn’t about you!’ but seeing the lady I mentioned earlier and hearing her say these things about herself, made me realise anger is not the response to have. She cares about me and she was scared of crying in front of me because ‘she doesn’t get to be upset when [I’m] the one going through it’. I looked at her, and told her it was okay. She cares about me, of course she can be upset, but the important thing is now she has seen me, she knows she doesn’t need to be worried about the next time. Maybe it was a good thing she was forced to ‘suck it up’: that she had to see me – even if it was a shitty occasion. My point is, if there are those reading this that haven’t been to see me, either cause your scared of being upset in front of me, or scared that I’ll be upset in front of you, or worried you’ll say the wrong thing, or dunno what to say at all, or think you’ve left it too long and I’ll be pissed at you: just come. Of course I am upset – but not all the time. I laugh just as easily as before. As for saying the wrong thing, what’s the right thing in this situation? The worst thing you can do is treat me differently or avoid me, because – as I’ve said so many times – I am still me. Let’s go for coffee and talk normally about life. Let’s go shopping. Let’s go get ice cream. Let’s go get pissed.
Still, I do realise that I have a long way to go in dealing with my own feelings; I’m not ignoring them, but I have a good support network that I’m starting to share things with, and of course I get a lot of therapy done in writing this blog. It took a while to realise I didn’t have to say ‘I’m okay’ all the time, but that some people genuinely wanted to go through it with me; I didn’t have to pretend. That took some getting used to, not because I ever pretended, (anyone who really knows me, knows I say it how it is), but because this was so huge and my feelings about it were intense and violently erratic. For one thing, I didn’t want anyone to carry the weight of it, but more importantly I didn’t want to feel it myself. It’s only the past few months that I’ve opened that door, just for a little while each day and started to process the enormity of this shit thing that has happened to me. Before that I went through periods of denial – not ever fully confronting the idea of being in a wheelchair for life – interspersed with moments when that door just couldn’t hold my feelings back anymore and they’d knock it down and give me a solid right hook to the jaw. Those days hurt. Days where each breath would feel like a kick to the gut ,while you wondered how many more shaking sobs before you became too tired and let the tears roll silently to your pillow instead. I’d lie wondering ‘how many tears can you cry before dehydration sets in?’ Some of these days were the ones that I would lash out at those close to me; days that I would be bitter and sometimes even hurtful. I remember my fiancé trying to reassure me, (in his own clumsy way), that we were in this together and screaming at him ‘BUT YOUR NOT THE ONE IN THE F**KING CHAIR! YOU COULD WALK AWAY FROM ALL THIS! I CAN’T!’ Admittedly not my proudest moment, but I remember feeling at the time that, (even though I knew he was devastated), he was implying that he knew how I felt. It isn’t a competition, but as much as he hurt for me, as much as I understood he was mourning the loss of our plans and coming to terms with an altered version of life that he never thought he’d have to deal with… to me no one could understand my pain.
It is steadily getting better. In the last month the hurt just sits in the background and aches. It’s a heavy feeling that grows and shrinks, but it only occasionally holds me down – I think that is called progress – and my friends and family gracefully take on a piece of my hurt somedays. Whether they realise it or not, they have been invaluable to that transition. The last day I had in which it all got too much was about a week ago. When I first realised I’d be in hospital for a long stretch, I made all these plans in my head… I was gonna’ study, do an online course, prepare for an exam, get more involved in teaching – and I am still going to do all of these, (actually, I presented at a University Open Day this weekend), – but I soon realised that just recovering and building myself back up little by little, often took more energy than I had and so 6 months down the line and I haven’t managed all of that. Instead of looking at everything I have achieved, I started beating myself up for not working hard enough. Around the same time my little brother moved to the city, to start a new chapter in his life and I was so proud of him for having that courage – plus absolutely made-up that he was nearer – yet for me it was bittersweet, because I couldn’t do the things I wanted to; help him move in, take him out to celebrate, buy him his first set of groceries or things he’d not realised he might need. Some were due to lack of money, others lack of physical ability, but all of it felt like a failure of my ‘big sister’ job. On top of all this was a multitude of little wars with the benefits system, finding a GP, securing a house, returning to work – I just felt so negative and overwhelmed. The progress I’ve referred to is that I am slowly learning to be kinder to myself and so I took a deep breath and I’m now slowly chipping away at the things I can control; hoping the things I can’t, settle down and start behaving. I’m coming to a point in rehab where I could be discharged soon – and that is f**king scary. Exciting? Yes, but still f**king scary. However, I know that eventually storms have to pass and with everybody I have on my side, things will steadily be okay.
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