Hello my lovely readers!
An extra post this week. Why? Well, if you know me 'in real life' (and actually online, too, since I've mentioned it on this blog before), you're probably aware that my birthday is rather earlier than it was meant to be. 13th November, in fact - whereas my due date was almost three months later, on 29th January. This means that today is the day I was supposed to turn twenty-five.
The keen beans among you may have noticed that I didn't post on here on my 'real' birthday, and you may also know the reason that I didn't - I was feeling pretty mixed about my quarter-century. This is partly because it marked a decade since two events in my life that had a profound effect on me both emotionally and physically. It was also because twenty-five is the age at which we are supposed to have our lives sorted. I definitely don't have many aspects of my life sorted - whilst lots of my friends are engaged, married, or have kids, I can't even wipe my own bum. Frank, but true.
Of course I am incandescently happy for my friends, and it is the hugest honour to have been asked to play a significant role in some of the ceremonies. (Bridesmaid duties for the Passfield-Ridler extravaganza of 2018 begin in earnest very soon, and I'm so excited!) I also know that I am incredibly lucky to be doing a PhD. Moreover, the 'expected age' is generally getting later and later as time goes on, because there is greater understanding that different people are ready for different things at different points - and my Critical Theory brain reminds me that it's all a social construct anyway.
However (and it is a big however) I have become increasingly acutely aware over the last few months that for me to live the life I want to live, with my body the way it is at the moment, just isn't feasible. Due to a combination of the somewhat bizarre fact that I don't 'qualify' for a twenty-four hour care package (even though I need it) and difficulties recruiting enough Personal Assistants (said with deep gratitude for the wonderful support system I have around me), I am having to structure my time on a micro-level - and mostly commuting from London.
Whilst this has in many ways made my research richer, because I am dealing with issues parallel to those encountered by actors with disabilities and thereby writing by immersion in my topic (Method writing!?), it isn't ideal. Actually, it's exhausting, both physically and mentally. It also isn't great for my future career prospects, because what academic faculty would hire me if I can't guarantee that I'll have help to get out of bed to teach seminars and lectures?
Mostly, though, it tires me out - and I've been wondering for a while now just how much longer I can keep it up. So, in an effort to prevent myself from doing something drastic and to insert some hope into my life as a response to both personal and political drama, I've spent the intervening period between my actual birthday in November and this one thinking about and working on ways in which I can become more independent. Consequently, I am now in training to make some pretty significant changes to my physicality - and not just with the aim of collecting my degree on foot.
Whether you have known me all my life or are a more recent presence, we have probably had conversations about just how much I want to walk. Although I am extremely grateful for my chair and the certain level of independence its electricity gives me, walking has always been the ultimate goal, and the idea of it is so embedded in my soul that it is how I move around when I dream. It is also why, since childhood, I have identified so strongly with characters like Clara from Heidi, Ariel from The Little Mermaid and Nessarose from Wicked. For where my disability-activist self is perenially and passionately commited to promoting pride and emphasising that things like walking are not the be-all and end-all, my private self knows that it would make a fundamental difference to me personally.
Of the three fictional women mentioned above, the one who best articulates my feelings, and is most similar to me (in that both our disabilities result from premature births), is Wicked (the musical)'s Nessarose. In a scene where she can no longer hold back her frustration that her sister Elphaba has helped many others with her magic, but seemingly ignored her own flesh and blood, Nessa sings:
All of my life, I've depended on you,
how do you think that feels?
All of my life, I've depended on you -
and this hideous chair with wheels!
Scrounging for scraps of pity to pick up.
Longing to kick up... my heels!
As will hopefully be obvious from this post, as well as earlier posts and the central position of my chair in this blog's Wordy and Wheely title, my emotional response to my current mode of transportation is not quite as vehement as Nessa's. I don't think of my chair as 'hideous', by any means - it's actually extremely useful, since without it I wouldn't really be able to leave my house. That said, one of my favourite things about Nessa is that she doesn't conform to the 'sainted' ideal that frequently surrounds characters with physical disabilities. Other people think she does, especially in the first half of the show, when she's repeatedly called 'tragically beautiful' - but she makes it very clear that she possesses the full range of emotions, just like anyone else, and the plot emphasises that she has the same, every day desires, too. Even more interestingly for me, it is the bursting of this frustration from inner turmoil to outwardly-expressed emotion that is the catalyst for her to get what she wants most. Of course her walking is nominally the result of Elphaba's magic, but even after the spell she is wobbly - and it's always seemed to me that it's her own determination that keeps her upright. I'll return to the significance of that in a moment.
Given that the role of Nessarose has thus far been played by able-bodied actors (largely, I think, because of the walking), I chose her (and Wicked more generally) as one of the central points of analysis for my thesis. As a result, I had the pleasure of doing an interview with both my dear friend Savannah Stevenson (who played Glinda until September) and the wonderful Katie Rowley Jones (the original London Nessarose, who has been reprising her role and celebrating the tenth anniversary). Not only have they given me over 12,000 words of precious material, they have also been incredibly supportive outside the realms of my research, since they know how much the show means to me. Moreover, just as Sav was with me throughout my degree-collecting journey and provided me with inspiration by way of Chariots of Fire, and the impetus to give a supported standing ovation on the last night of that show, so too Katie (probably unknowingly) gave me the idea of standing on my own for her last night.
This came about once it was announced that the first cast change following the tenth anniversary would be last night (28th January). Due to the fact that Katie would be leaving, and the date's closeness to today, it seemed important to capitalise on the significance of the connection to what would be my 'real' twenty-fifth birthday and to use it as an incentive to be able to get out of my chair on my own. Consequently, after counting the days between my November birthday and this one, I set up a regime to get myself stability, strength and stamina - the practicalities of the determination to stay upright that I observe in Nessa above, since I did and do not have the benefits of magic to assist me. This had the extra effect of helping me to feel happy about spending so much time at home, because I could then fill my time with London-based appointments to further my mission.
The thinking behind this task was that, if I could accomplish it, it would give me proof (for myself as much as others) that it is both plausible and possible for me to regain the level of physical ability that I once had - and maybe even to exceed it. I could then allow myself to hope that soon I will be able to take myself to the toilet and get myself in and out of bed. For, as much as walking will always be my ultimate ambition, it is the ability to fulfill these basic needs myself that would make the most immediate difference.
I am very pleased to be able to write here that I did it! Thanks to a helpfully-placed safety rail in front of the wheelchair space at the show, I could lean forward to pull myself up and out of my chair so that I stood perching on the edge of my seat. All on my own. Both feet flat on the floor. (Excuse the specificity, I'm just reliving the moment.)
Not only did I leave the show on a high, but it's given me the confidence to take things further. So, given that today is my 'real' birthday, I decided to try something that I haven't done comfortably since before I walked to collect my undergrad degree in 2013. I got back into my walking sling and stood with my feet much more firmly on the ground than they have been in a long time - I just need to stretch them out to reclaim my tall-girl credentials! I can report that this was also great (as you'll see from my smile in the photo below) and that I'm now feeling infinitely more secure in being twenty-five. I think this is going to be a significant year, though what exactly that will entail, I'm not sure yet.
For the moment, I'm just so grateful to have you all tagging along - thanks for putting up with my lengthy post and congratulations that you've made it this far. I'm now going to leave you alone and go on the hunt for a doughnut, since we've always called this my zero birthday.
Much love,
Jx
The keen beans among you may have noticed that I didn't post on here on my 'real' birthday, and you may also know the reason that I didn't - I was feeling pretty mixed about my quarter-century. This is partly because it marked a decade since two events in my life that had a profound effect on me both emotionally and physically. It was also because twenty-five is the age at which we are supposed to have our lives sorted. I definitely don't have many aspects of my life sorted - whilst lots of my friends are engaged, married, or have kids, I can't even wipe my own bum. Frank, but true.
Of course I am incandescently happy for my friends, and it is the hugest honour to have been asked to play a significant role in some of the ceremonies. (Bridesmaid duties for the Passfield-Ridler extravaganza of 2018 begin in earnest very soon, and I'm so excited!) I also know that I am incredibly lucky to be doing a PhD. Moreover, the 'expected age' is generally getting later and later as time goes on, because there is greater understanding that different people are ready for different things at different points - and my Critical Theory brain reminds me that it's all a social construct anyway.
However (and it is a big however) I have become increasingly acutely aware over the last few months that for me to live the life I want to live, with my body the way it is at the moment, just isn't feasible. Due to a combination of the somewhat bizarre fact that I don't 'qualify' for a twenty-four hour care package (even though I need it) and difficulties recruiting enough Personal Assistants (said with deep gratitude for the wonderful support system I have around me), I am having to structure my time on a micro-level - and mostly commuting from London.
Whilst this has in many ways made my research richer, because I am dealing with issues parallel to those encountered by actors with disabilities and thereby writing by immersion in my topic (Method writing!?), it isn't ideal. Actually, it's exhausting, both physically and mentally. It also isn't great for my future career prospects, because what academic faculty would hire me if I can't guarantee that I'll have help to get out of bed to teach seminars and lectures?
Mostly, though, it tires me out - and I've been wondering for a while now just how much longer I can keep it up. So, in an effort to prevent myself from doing something drastic and to insert some hope into my life as a response to both personal and political drama, I've spent the intervening period between my actual birthday in November and this one thinking about and working on ways in which I can become more independent. Consequently, I am now in training to make some pretty significant changes to my physicality - and not just with the aim of collecting my degree on foot.
Whether you have known me all my life or are a more recent presence, we have probably had conversations about just how much I want to walk. Although I am extremely grateful for my chair and the certain level of independence its electricity gives me, walking has always been the ultimate goal, and the idea of it is so embedded in my soul that it is how I move around when I dream. It is also why, since childhood, I have identified so strongly with characters like Clara from Heidi, Ariel from The Little Mermaid and Nessarose from Wicked. For where my disability-activist self is perenially and passionately commited to promoting pride and emphasising that things like walking are not the be-all and end-all, my private self knows that it would make a fundamental difference to me personally.
Of the three fictional women mentioned above, the one who best articulates my feelings, and is most similar to me (in that both our disabilities result from premature births), is Wicked (the musical)'s Nessarose. In a scene where she can no longer hold back her frustration that her sister Elphaba has helped many others with her magic, but seemingly ignored her own flesh and blood, Nessa sings:
All of my life, I've depended on you,
how do you think that feels?
All of my life, I've depended on you -
and this hideous chair with wheels!
Scrounging for scraps of pity to pick up.
Longing to kick up... my heels!
As will hopefully be obvious from this post, as well as earlier posts and the central position of my chair in this blog's Wordy and Wheely title, my emotional response to my current mode of transportation is not quite as vehement as Nessa's. I don't think of my chair as 'hideous', by any means - it's actually extremely useful, since without it I wouldn't really be able to leave my house. That said, one of my favourite things about Nessa is that she doesn't conform to the 'sainted' ideal that frequently surrounds characters with physical disabilities. Other people think she does, especially in the first half of the show, when she's repeatedly called 'tragically beautiful' - but she makes it very clear that she possesses the full range of emotions, just like anyone else, and the plot emphasises that she has the same, every day desires, too. Even more interestingly for me, it is the bursting of this frustration from inner turmoil to outwardly-expressed emotion that is the catalyst for her to get what she wants most. Of course her walking is nominally the result of Elphaba's magic, but even after the spell she is wobbly - and it's always seemed to me that it's her own determination that keeps her upright. I'll return to the significance of that in a moment.
Given that the role of Nessarose has thus far been played by able-bodied actors (largely, I think, because of the walking), I chose her (and Wicked more generally) as one of the central points of analysis for my thesis. As a result, I had the pleasure of doing an interview with both my dear friend Savannah Stevenson (who played Glinda until September) and the wonderful Katie Rowley Jones (the original London Nessarose, who has been reprising her role and celebrating the tenth anniversary). Not only have they given me over 12,000 words of precious material, they have also been incredibly supportive outside the realms of my research, since they know how much the show means to me. Moreover, just as Sav was with me throughout my degree-collecting journey and provided me with inspiration by way of Chariots of Fire, and the impetus to give a supported standing ovation on the last night of that show, so too Katie (probably unknowingly) gave me the idea of standing on my own for her last night.
This came about once it was announced that the first cast change following the tenth anniversary would be last night (28th January). Due to the fact that Katie would be leaving, and the date's closeness to today, it seemed important to capitalise on the significance of the connection to what would be my 'real' twenty-fifth birthday and to use it as an incentive to be able to get out of my chair on my own. Consequently, after counting the days between my November birthday and this one, I set up a regime to get myself stability, strength and stamina - the practicalities of the determination to stay upright that I observe in Nessa above, since I did and do not have the benefits of magic to assist me. This had the extra effect of helping me to feel happy about spending so much time at home, because I could then fill my time with London-based appointments to further my mission.
The thinking behind this task was that, if I could accomplish it, it would give me proof (for myself as much as others) that it is both plausible and possible for me to regain the level of physical ability that I once had - and maybe even to exceed it. I could then allow myself to hope that soon I will be able to take myself to the toilet and get myself in and out of bed. For, as much as walking will always be my ultimate ambition, it is the ability to fulfill these basic needs myself that would make the most immediate difference.
I am very pleased to be able to write here that I did it! Thanks to a helpfully-placed safety rail in front of the wheelchair space at the show, I could lean forward to pull myself up and out of my chair so that I stood perching on the edge of my seat. All on my own. Both feet flat on the floor. (Excuse the specificity, I'm just reliving the moment.)
Not only did I leave the show on a high, but it's given me the confidence to take things further. So, given that today is my 'real' birthday, I decided to try something that I haven't done comfortably since before I walked to collect my undergrad degree in 2013. I got back into my walking sling and stood with my feet much more firmly on the ground than they have been in a long time - I just need to stretch them out to reclaim my tall-girl credentials! I can report that this was also great (as you'll see from my smile in the photo below) and that I'm now feeling infinitely more secure in being twenty-five. I think this is going to be a significant year, though what exactly that will entail, I'm not sure yet.
 |
| Yay! |
For the moment, I'm just so grateful to have you all tagging along - thanks for putting up with my lengthy post and congratulations that you've made it this far. I'm now going to leave you alone and go on the hunt for a doughnut, since we've always called this my zero birthday.
Much love,
Jx
Oh Jess! I have tears of deep joy and love running down my face! Thank you for your candour, wisdom, courage, humour, intelligence, and for just being you!
ReplyDeleteHello dear Lee. I just wanted to say thank you for this lovely comment, it means such a lot. I realise it's been a while since you sent it (my blog seems not to tell me when people comment) but it is very much appreciated!
Deletebe proud of your determination and fighting spirit! You have so much to share with the world, and as frustrating as your current situation is -keep hope alive. (that's a trite Americanism my friends and I use when there really is nothing else -it always makes us laugh, and sometimes that's enough.)
ReplyDelete