When Your Body Takes Another Road

Statistically, there will come a point in nearly all our lives when our body stops behaving in a “normal” way and doesn’t stop. Sometimes it’ll be sudden, some times it will creep up on us, and for some it will have simply always been that way. The thing that we have in common is a sense of loss for that normality, and a completely human need to grieve for it. This post is going to be primarily aimed at those that have acquired a long-term condition/impairment or had one worsen, as that is an area I have experience in.

Loss can be categorized as either physical or abstract, the physical loss being related to something that the individual can touch or measure, such as losing a spouse through death, while other types of loss are abstract, and relate to aspects of a person’s social interactions.

We all grieve differently, it’s far more complex than just feeling sad. While yes, some do feel sad, some also get angry, some withdraw, some cling, some seek justice, some seek to keep the memory of the past alive, some hunt for meaning, some wish to campaign for better, some choose to support others, some try to make a new normal as quickly as possible. Most will travel through a mixture those different states before “recovering”. Of course recovery is an odd one when what you are grieving is an abstract loss of normalcy. Gone is the “normally” functioning body and/or mind, gone is the normal way of doing certain things, gone are the “normal” expectations about how you fit into the world be it with friends, family or with your paid/unpaid work, gone are you hopes of being “healthy”, gone are the ways you learned to navigate certain challenges, gone are the dreams you had that relied on being able to function “normally”, and most hurtfuly, gone (or at least severely dented), is the idea that you are “normal”.

It’s painful. So much has been lost, or at the very least feels lost. The world is a different place, all the rules have changed and you have to find the energy to start to find your way through it again. However now you feel battered by circumstance, tired and generally less able to manage that feat than you feel you would have done before the loss. It’s just not fair. This is the time you want comfort and protection, not an uphill fight to find a new way forward.

Eventually though there comes a point where you find you need to start moving forwards with your life. Normally it’s not until you have some stability medically, as basic survival is normally a far stronger need than thinking of the future. However, once your life isn’t immediately on the line, when you start to discover what your new normal is, you can start thinking about what comes next. Where do you go from here? If you are anything like me that of course starts off a new wave of grief. Accepting your new life is different is like hammering the nails into the casket for old one. It’s another reminder of that which is no longer there, and by now you’ve probably started to experience the new trails and tribulations society throws at you for having diverged from normalcy. Be it steps suddenly posing a problem, a lack of accessible communication formats, new challenges & stresses navigating relationships, or people treating you in weird and rarely all-that-wonderful ways.

I think it was at this point in my journey with grief I realised that I didn’t want to live grieving the fact I wasn’t normal so I tried to find ways to deal with it. I, someone who never wanted to describe herself as disabled, discovered solace in the disability movement. I realised that I was disabled by being perceived as abnormal because of the way my body functioned. I realised the idea of normalcy was a flawed one, and one that pernicious idea made life harder for people like me as well as for all those non-disabled people who are terrified of no longer functioning normally. My grief was sublimed into a desire to make the world a better place (…some get angry, some seek justice, some seek meaning, some campaign for better…). To challenge normalcy and disablism, to highlight and do my bit to remove disabling barriers. It was great for a time. I still had the odd cry over not being able to do things like I used to, or not being able to defeat all barriers in my path with an acerbic tweet and a willingness to write that complaint.

Of course then my health went down the pan. I had a mental health flare up that lasted nearly six months, during which I withdrew from the world a heck of a lot. In came another wave of grieving. All that hard work, all that campaigning, the nice accessible world I had built for myself and still I was not functioning like a norm… Oh. I see what happened there. My insides still had me awake in agony, my sleep was still punctuated by either nightmares & parasomnias or those dreams similar to the ones where you suddenly find yourself needing the loo and wake up bursting, but in this case instead off needing the loo I’d wake up drenched in sweat and tears, screaming in pain as my nerves kicked off. I still had my mental health issues kicked off at the slightest provocation. I had not campaigned my way into recovery. There was grief here, but now it focused less on having stopped being “normal” (or having stopped having non-disabled, then non-visibly disabled privilege) and more on feeling sorry that I had a lifetime of pain both physically and mentally ahead of me as there was, and still is no way of remedying them. I was tired of it all, any novelty that had existed was so long gone I couldn’t remember it any more, and I just wanted, no needed things to be easier for a while.

The next strides forwards involved really working hard to accept that while yes, the world was disablist and oppressive way too often, and yes, my body often felt like a traitor, I had to accept that was how things were right now. I was never going to accept that the world had to be disablist forever, or not believe that in 20 years time some new way of dealing with my impairment might arise (even if it involves being downloaded into a kick ass robot body – please let it be a kick ass robot body). This changed things. I really worked harder on managing my well-being, making it part of who I am, not something I do half-heartedly because I still hope that a magic return to normalcy is around the next corner. I should say that I didn’t consciously think that most of the time, but I realise that deep down it had kept burning away in my subconscious. Suddenly moving forwards became a reality. I had help where I needed it, or I at least knew where to get it. I had space where I needed it. I had independence wherever humanly possible. I still hit sad spots, but no longer was the grief such a powerful force. The way I could look back on my now passed grandparents and think about their lives with happiness and love, I could often look back on my “previous” life without feeling bad about it having come to an end. Don’t get me wrong, being treated badly by a disablist world still sucked, but those bad feelings were by and large no longer attached my grief. Nor were the sad feelings attached to feeling rubbish during flare ups.

When cancer struck I honestly expected to hit another wall of grief for the loss of my “health” and “normalcy”, but it didn’t ever come. Sure I was upset I might die, being told you have cancer out of the blue is a really big shock to the system! However I found I was able to grieve for the cancer without the rest of my health issues coming into play. The realisation that I had really taken some big steps towards accepting who I was so that I could move on from grieving and start living was really kind of freeing. Especially because it made the grieving I did for no longer being someone who didn’t have cancer a lot easier.

Coping with loss is a journey, and one that is made harder when you live in a world that tells you to strive to be who you were before you lost that thing. When all the focus is on not being who you are now, and being who you were. What are you supposed to do? Somehow travel back through time, possess your old body and miraculously stop it becoming the way it is now? Get a witch to cast a spell? Click your heels three times and say “There’s no place like my old body”? Not particularly realistic. You are who you are now, and while that might be harder than many others realise at times, it’s who you are, and you are awesome. Or at the very least someone with excellent taste in blogs. Be easy on yourself, if not for you then for me and those who care for you. Dealing with this stuff involves walking (metaphorically) along a long, twisting road that will constantly fool you into thinking that you are near the end before showing you that you are not. It feels endless at times and so very, very tiring. There is hope however, it can get less painful; and if it anyone deserves for it to get less painful, it is you.

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