Tag Archives: walking stick

Priority Seats

Many things in this world irritate me. At the moment, not just at this moment in time, but in limited life, my biggest irritant is the public perception of my disability and the concessions they do not make for it. Right now*, I know that I am particularly angered by it because I opened the WordPress app to tell you about many things that do not involve how I walked into a hospital waiting area to find no seats free and nobody willing to give up a seat to me.

I am now looking at the many faces in this room having disregarded half of them as poor people whose bodies are riddled with cancer like me and thus are entitled to a seat, imagining the quick deterioration of the days of the rest of them with expensive burst water pipes resulting in days of cold showers, broken favourite dishes, accidentally soiling themselves in front of their colleagues, lost heirlooms and cheating spouses. That is what the healthy visitors deserve for not giving up a seat to a cancer patient with a walking stick. Actually, in my mind, that is the absolute minimum of what they deserve for not giving up their seat.

Perhaps if the room I was in had windows to the outside world, rather than to a white corridor, I would feel more tranquil right now. I would have no desire at all to take people’s legs out with my walking NHS issue walking stick. Of course, if I did give in to that particular impulse, they may then have a genuine need of a seat and that would do me no good at all.

Just an update for you, I am now in a seat. Not because somebody who did not need it gave up their seat, but because I was assertive and stormed towards a seat the minute it became vacated. The next thing I knew, the seat next to me had a new occupant and I had to listen to a gentleman drop several hits about why his wife needed the seat more than me for five minutes. I responded to this by removing my earphones and telling the gentleman and his wife that I too had cancer, and moved my walking stick into plain sight. I then really showed them, by moving to an empty seat when one became available so the gentleman’s healthy wife could sit down next to her husband. Fools.

Fat and young does not make me less worthy of assistance, especially when I accidentally missed last night’s MST dose.

If it is this difficult to get the public to show sympathy or is it empathy, in a cancer centre, how the hell am I expected to survive in public? In the public I see signs for priority seats, but does anybody else? I am not elderly, I do not need a wheelchair and I do not visibly have a part of my body missing. Myeloma can be invisible. Just like, it would seem, as invisible as many people’s manners.

For the first time since my relapse, I found myself on the tube last Saturday Within five minutes, I knew it would be an experience that I would not be repeating for a while. It was an experience where people push and shove and hold onto a seat like it is the their only child. Of the three trains I had to get for a 30 minute journey, none of the stations had stair free access, and only on one of the trains did somebody give up a seat for me. On the first train, I had to contend with somebody who would not move to allow me to disembark, which resulted in my twisting my back and suffering for doing so for the rest of the day. The next day, I got on the 38 bus where somebody had just sat down in one of two free priority seats, before I sat down on the other. The person in question was in her twenties, and audibly tutted as my bum touched the patterned upholstery next to her. She then got up, and moved to another seat behind us with her boyfriend who I did not see behind me. I felt evil. Should I have explained why it was difficult for me to climb up a step to access these seats on a moving vehicle? Should I have to?

I know people manage this type of aggressive travel everyday, but I, to put it simply, cannot do it anymore and I hate everybody who makes it impossible for me to do it. It makes me feel so sick. Sick of this stupid myeloma.

Having an invisible disability is the pits. It is just the pits. Pits. Pits. Pits. I am convinced that a number of people who see me with my walking stick think it is related to my girth and just deserved. I am also convinced that there is a much larger majority, especially in London, who just do not see the stick at all. It all makes stepping outside my front door unpredictable. I have had 26 months to get used to it, but I am still scared by the dangers that lurk behind people not knowing that I have myeloma, let alone the dangers of people not knowing what the dangers of myeloma are (e.g. drunken fool at wedding).

I think I am as strong as I can be. I do not live solely in my flat and I try not to shut myself away, despite home being far safer and more comfortable for me than anywhere else. People, and I do use that term generally, do not see the struggle I face when I leave my flat. I get taxis to make it just that little bit easier, but I am on benefits now, so they have to be limited. Do I give up going out or do I brave the outside?

Travelling and my entitlement to a seat over a healthier person, an entitlement that I am aware some might not agree with, is not the only prejudice I face as a Disabled. I call myself that now. A Disabled; it’s worth it for the cheap cinema tickets. You might have read all of this thinking I just need to be a little bit stronger, a little bit more assertive, have thicker skin and maybe drop a few more Diazapams to chill out before I venture into the outside world. If that is indeed what you do think, I have one more story for you…

Two weeks ago, I found myself walking with my stick at my usual slow pace, alone through Leicester Square. If you are not familiar with said square, it is not the safest place if one needs to avoid crowds and people stopping unexpectedly to take photographs of the M&M store. Anyway, necessity made me go there, and I was managing that, the way I manage most things, by pretending I was not scared of it. As I made my way from one end of the square to another, I walked past a badly dressed, but seemingly popular street performer. As I walked past him, he interrupted his performance to draw attention to me, and said into his microphone, “see that woman, she’s faking, she does not need that walking stick”. The crowd laughed and I felt humiliated. My humiliation resulted in cowardice and I just continued walking pretending that I did not hear what he said, nor the laughter of the crowd. Two days later he and I were there again, but this time, instead of taking the shortcut by him, me and my walking stick took a long detour, to save any more potential embarrassment. I was a chicken.

Since the incident, I have obviously rehearsed what I should have said to the man on that day. I should have explained why I had a walking stick and explain all the reasons why I was not faking. I could have just lifted up my shirt to reveal my radiotherapy scar. Of course, the opportunity has long gone, and boy oh boy does that make me angry or so very angry. On a very personal level I am punishing myself for my cowardice. I fight something very difficult everyday and I could not stand up to a bully who makes his money in an upside down hat.

More broadly, what does it say about people that the man thought it was okay to say what he said and the crowd of people thought it was acceptable to laugh at me? I suppose it says much the same thing as people who sit in a Priority Seat when they do not need to, and the same as people occupying seats in a cancer centre and not giving them up to somebody who has cancer. I just do not quite know what that is.

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Of course it is ‘ruddy hilarious’ when you don’t need a priority seat

I will finish with this thought… The priority of My Myeloma should be my treatment, but more and more with this relapse, I am finding so many other things that cause more unnecessary stress and anxiety. They are things that not unlike treatment are out of my control, but could be remedied if People (that general term again) were more aware of our rights. If People did not want to give their time to consider our rights, then the least they could do is show some manners, or on a more basic level, know right from wrong.

EJB x

P.S. My newfound concerned for the rights of disabled people, is in no way, selfish. Mamma Jones just installed me with manners, that is all. I’m speaking out to all 46 of you for the benefit of others.

* To be clear, the ‘right now’ in question was yesterday… I got a wee bit side tracked with medical information, being impressed with the installation of my cannula, getting a dose of Zometa, getting a train (which highlighted the issues raised in this blog) and going to a seven year old’s swimming lesson.

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Reliance

I have spent a good five months telling myself and anybody else who would listen, that I could walk without my beloved walking stick and that He was only needed in my palm to tell the general public that I had issues, so I did not have to. I am a strong, independent woman, who absolutely positively can walk substantial distances without a walking stick.

Sadly, this is not the case. It surprised me. I might be able to walk unaided, and frequently walk short distances without it, but as I discovered on Tuesday, there is a price I pay for doing so. I rarely go anywhere without my walking stick. It is true. I may walk around my flat without Him, but if I am leaving my front door, he is in my palm, and we are together. On Tuesday, I did leave my flat without my walking stick, I did so because I could not take Him and my luggage and I calculated, that as I had no intention of going on public transport during my holiday, I would not need Him. On Tuesday, as well as leaving my life to have a stem cell transplant, I also walked a great deal, around the hospital’s unofficial campus, unaided. Until approximately 18:45hrs, I thought absolutely nothing of it. Why would I? I never normally think about it, and on Tuesday, my brain was preoccupied with my transplant, to spend time thinking about my back pain.

That is the problem with my disease, my focus this week should have been solely on fighting this wretched thing, and not having to worry and let’s face it, experience severe pain, from my lower back. Pain is a byproduct; it is not the cancer. Even this week, I have to balance the two and remain cautious of the pain. When the illness sets in, everybody will be looking at the side effects, but I know what my neck and back will feel like after days of lying in bed. It will not be pleasant.

Anyway, by the time I realised why I had spent Tuesday night feeling like a horse had kicked me in my lower back, it was Wednesday… Not knowing how long I will be expected to walk around before I am sentenced to solitary, meant I had to get a replacement, which was much easier than anticipated thanks to my favourite receptionist. It is a ‘temporary’ replacement. I do feel like I am cheating. I am cheating on my beloved walking stick, with a younger, cleaner model. The new one still has his stickers in place and there is more of a spring in his step. And yet, I am yearning for my love.

Now then, if this wasn’t enough evidence for me to get a Freedom Pass, then I do not know what is.

My name is Emma Janes Jones and in addition to having myeloma, I, unfortunately, am disabled.

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The Lover’s Tiff

I have made no secret of the fact that I harbour a little torch for my walking stick. My feelings may be stronger than that. We are in a relationship. It’s ideal really, because He does not talk back to me.

Since the start of our relationship, there have been a few instances where He has decided to run off. Perhaps it’s because I am high maintenance, I don’t know, but He has these occasional disappearing bouts which leave me heartbroken and in need of Magic FM’s Ten at Ten. For the rest of the time, we are very happy together. We hold hands and He feels valued. I am sure of it.

This week, we had an episode. We had gone out for dinner and on our return, we decided to pop into Sainsbury’s to buy some orange flavoured ice lollies. I thought everything was fine. We had spent some quality time together; things were good. So, imagine my surprise the following evening when I went to leave my flat for an excursion to the BFI, and I discovered that my stick was not there. He had disappeared. He had gone. It was over.

Two days went by. I retraced my steps and I could not think where He had gone. I thought that the end was here. Our relationship was done and I was going to have to confront the outside world by myself. In that two days, I did confront the world by myself and let me tell you something for nothing. Public transport, without my anchor, is terrifying and dangerous. Without Him in my hand, nobody knows I am sick and nobody was willing to give up their seat. Walking down the street, I felt alone and I knew that I am not at the stage in my illness yet, where I can venture outside my front door completely alone.

Fortunately, by Friday, I remembered. I remembered getting so excited that the orange flavoured ice lollies and if I am honest, the Ribena ice lollies were on offer, that I put them in my basket and left Him learning against a glass door staring at the choc ices. I went on to google, I got the telephone number for the Sainsbury’s in Dalston and I dialled. I then asked the embarrassing question.

Me: Um, hello, I know this sounds strange, but do you have a lost property and if yes, has somebody handed in a walking stick?
Sainsbury’s Customer Service, Dalston: No.
Me: [silent devastation]
SCSD: Actually, we have something, it’s silver. Can you describe what it looks like?
Me: Yes. It is silver…. It’s a standard NHS issue walking stick, with a grey rubber handle, and there is a cap missing on the handle so you can store things in it. I love it. It has a rubber bottom as well.
SCSD: Yes, it is here. Just come to the Customer Service Desk.
Me: Thank you so much [exhale].

He was collected later in the day. I approached the desk unaided and left limping. To the passerby, I must have looked like a benefit cheat. I did not dwell on this, for I know why I need my beloved. And let’s face it, if it were not for me, He would have no purpose in life.

People may wonder how I could mange to leave my stick in a store and not realise. It’s not because I am absent minded. No way. It’s not because I cannot multitask. Not even. It’s not because I lose things all the time. Think again. It’s because I am a fool in love with a big, long stick.

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Every relationship has its ups and downs right?

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Englishness

Today I found myself on the tube or to go by its official name, the London Underground. I have never been a fan of the tube, it’s the sweat aspect of it really, people’s sweat in my face and my sweat on my pits. Anyway, I was on the tube because I was running late and even though I do not like it, and there are more changes, which does me no good at all, it is faster than the bus. Practical.

So there I was on the Victoria Line, with my walking stick. I walked through the sliding doors into the carriage, rattling my stick, to find all the seats taken. People looked up and me, but nobody was budging. Bastards. This threw me into a dilemma. The only reason I travel with the bloody stick is to avoid situations where I have to ask somebody for a seat. In terms of my manners with strangers, at times when I do not have steroids pumping through my veins, I am the most English of English people. I say sorry to people when they bash into me, I like to queue if there are seats, and as it turns out, I do not ask people if I can have a seat on the tube because I do not want to appear rude.

Ordinarily, I think I could have managed the 15 minute journey standing, but somebody on my train was taken ill, which added a further 20 minutes to the journey. People tutted. I rattled my walking stick some more and sighed. People did nothing. Instead, I had a couple who both needed to wash their hair, shove their instruments in my face.

I then had a hot flush, one really needs to sit during one of those bad boys, if only so there is something else there to absorb the sweat from my butt. And still, my fellow commuters, travelling outside of rush hour, were oblivious to my plight. Perhaps they were all afflicted with an invisible disability like me and were brave enough to face the world without a visible symbol of weakness, but the odds of that are pretty slim, like getting myeloma. I will take a gamble however and say that the majority did not have an invisible disability. The longer I stood, the more I could feel my back, invisibly poking me. Perhaps I need a badge, like the ‘Baby on Board’ badges that says, ‘Cancer. Weak Bones. Take Pity’. I did contemplate theatrically removing my hat, because I thought that my head plus walking stick would definitely result in somebody giving me there seat, but I vetoed that, because it would have meant that I had to carry my hat as well as my coat, stick and handbag. The longer I stood, the more I believed that everybody in my carriage was evil, and I mean urinate on puppies and kittens type of evil. By Oxford Circus, I was convinced that there were so evil, that they might actually defecate on those puppies and kittens too. Bastards.

All of that venom and anguish because I was too polite to ask for a seat. I say polite, you may say something else.

I’ll have to learn…

My name is Emma Jane Jones and I have a disability.

Fortunately my faith in humankind was almost restored on the District Line when a Mr Darcy-esque male with manners, offered me his seat without prompting when I changed tubes. I felt a bit sorry for him, not because he was wearing a pointy loafer, but because I was only on that train for a stop. But my, did that seat feel good. I sighed with pleasure. Trust me, that’s not a pleasant sound for anybody. I then felt sorry for everybody on the carriage. Well, the people not listening to their iPods.

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Relief

Phew.

When I awoke this morning, I ran (that’s right, ran) to the front door by my coat stand to ensure that my handbag and purse were safely contained in my flat, and what do you know, hidden behind my collection of coats was my beloved Walking Stick standing there like nothing was wrong. Man, he is loyal. Grieving over. Half my heart is mended. https://ejbones.wordpress.com/2013/03/04/farewell-my-friend/

I knew life couldn’t be that cruel.

If you ever wonder where I find my never ending pit of inspiration and positivity, then look no further. This song gets you through all of life’s shit showers. By shit, I mean myeloma. You incurable beast.

http://m.youtube.com/#/watch?v=cdFcHc2yDQ0&desktop_uri=%2Fwatch%3Fv%3DcdFcHc2yDQ0&gl=GB

As you know, I am a 28 year old, ultra mature line manager… with myeloma.

22 days left.

I am embracing the freedom. I knew I would.

EJB x

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Farewell My Friend

I am a grown up. I am a 28 year old with multiple myeloma and I try everyday to do what any normal 28 year old person living in London would do…. So forgive me.

It is then, with sadness, that I announce that something that has been with me since I started my journey has been lost. He held me high when I could not do it myself. He supported me when I walked. He supported me in those early days when I could not stand up from the toilet. He was there when I needed to go to Sainsbury’s to buy my Soreen. He got me out of bed when I could not stand by myself. He told everybody that I was poorly. He held my hand nobody else would.

He, is my Walking Stick. My beautiful NHS issue Walking Stick with the broken handle. Dewy eyed. I am so sorry I left you in my taxi. Remorse. I am so sorry I got drunk and temporarily forgot that I had cancer and I needed you. I am so sorry I forgot you were my amour. You were there when I needed you and I just left you, I forgot about you because finding my hat, at the time, was more important. It wasn’t. You were a part of My Journey. You should have been in my shrine. You represented my progress every time I looked at you or every time I held you and realised I didn’t need you anymore. You became a nuisance, a liability. You made it clear that the Zometa had progressed my bones to the humping Starfish, and what did I do? I showed you my gratitude by forgetting your existence.

I genuinely do not know how I will cope without you. You were my treasure. You were my silver. You were adjustable. You made my life easier for so long. I am 28 with myeloma and you protected me.

How am I going to get on a bus tomorrow without you?

Sigh.

Bye bye My Love. You will never know how much you meant to me.

😂

EJB x

P.S. I totes just vomited.

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Walking In Dalston

It surprised me when I woke up this morning and realised that despite regularly leaving the flat, I have not walked anywhere completely by myself since I was diagnosed. I very much miss this independence, an independence that the majority of human beings have. To begin with, my reliance on vehicles and friends was through necessity and somedays this is still the case. I cannot walk very far and definitely cannot carry a great deal. It is my reality. On a good day, my mobility is such that I can walk some distance. It does scare me though. I like the security of walking with somebody else. What if I were to fall over? Who would help me get up? What would happen if my left shoulder decided to be an arse and I could not hold the walking stick and a handbag? How would I get home if one of my vertebrae decided to fracture again? So many fears… So this morning, I realised that I was being a wuss and it was definitely time to bite the bullet. I cannot do anything about the medicine, but this sort of progress is within my control. There is no need to sugarcoat it, I was being a sissy. And thus, after a bath, I decided that I was going suck up the fear and venture into Dalston proper, by myself, to buy some face wax (seriously, the steroids) and a salt beef bagel.

Venture I did. It is a walk I have done hundreds of times, but there was something quite exciting about doing it today. I felt naughty. I felt like a naughty, brave person. It is a grey day, and I know this is a cliche, but I was looking at Kingsland High Street through rose tinted glasses and I wasn’t wearing glasses. It is quite strange to romanticise the Kingsland Centre, but that I did, because I was by myself, headphones adorned, buying stuff, just like normal. Normal. Well, reasonably normal, my right hip is being a pain in the arse today and the act of walking was quite difficult and the stick was actually required rather than me simply using it to keep my public at bay. I didn’t let it spoil my fun though, nor the fact that the bagel shop did not have salt beef.

This then, is how I saw Dalston today, through my special glasses and my iPhone.

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It is so pretty.

EJB x

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The Number 30 Bus

Okay. It was an accident. I was out, in public, socialising. I needed to get home. There were no available taxis on Mare Street, London, England. There was however a bus, the number 30 bus. So, I bit the bullet and got on the bus for all of eight minutes. I sat on a Priority Seat. I then walked from Balls Pond Road, London, England to my Flat, London, England, Earth, The Universe.

It was accident. I know I have a cold and I do not want to catch anything else. I also know that buses are not the places for people with wobbly spines, but, I just got the frickin’ bus. The last time I got a London bus, or any bus in fact, was on the 12 August. I was in so much pain during that particular journey, I cried. I didn’t cry today. I am not going to make a habit of it. People are dirty. Before you take offence, I am also dirty for I am a person. But, I got the bus. The number 30 bus. I prefer other bus routes, but beggars and all that.

I do apologise to all those people, well, the three of you, who told me not to get the bus today. I promise, it was a £2.30 accident. Really.

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