Tag Archives: sympathy

How Not To Greet A Myeloma Patient – Part II

I feel for the people in My Network. I suspect, though I am not entirely sure of it, that with regards to me, they have to reach and maintain the delicate balance of treating me like normal, as the person they have always known whilst acknowledging that I do have an illness that is shitter than shit and for this reason, I do need the occasional TLC because I can be emotional and sensitive. Emotional and sensitive. Believe it sisters. I wish I was neither, but hey ho, life is not that kind. If I am honest, I do not know what the right balance is, so deity help The Network.

With some people it’s easy; it’s a given. Housemate for example, could tell me that I look like a sack of potatoes and smell like farts, and I’d still wash his pants. For others, I think it is more difficult, but after ten months, I think we are working through it and I am comfortable with the way things are. Bar the occasional bout of paranoia, anxiety and self loathing, but this existed long before I contracted this deadly disease. These people have seen me multiple times since I was diagnosed and have a good working knowledge of My Myeloma and what it and the changes mean, and I am most thankful to them for that. It doesn’t take a genius to work out that a knowledge of the cancer and my treatment, would assist people with knowing how to manage my mood and what I need on any given day.

For people who I do not see regularly and who do not know a great deal about myeloma, perhaps even, how to spell it, it is more difficult. I do not know how I would be if the situation was reversed. By ‘being’ what I mean, is I do not know how I would show that I care about somebody if they were 29 and had myeloma. It too is a delicate balance.

For me personally, there are certain things that I hate when it comes to me coming face to face with another human being, who I knew once upon a time. Loathe it actually, to the point where if I can predict it coming, I will not go. It is an inevitability that on seeing somebody who I have not seen for a while, My Myeloma is going to monopolise the conversation. It will now, forever be, that way, and there is not a great deal to be done about it. People care about me, I assume so anyway, and want to know how I am, yadda, yadda, yadda, blah, blah, blah. Blah. It is nice that they do obviously, but like I said, there are certain things, in regards to this, that I hate more than I hate cherries and I hate cherries.

Firstly, if you approach me and tilt you head to the side, I am automatically going to think ill of you. If the head tilt is accompanied by a frown and/or something that resembles a sympathetic noise, you would have lost me for the rest of the conversation. I have witnessed this on many occasions since I was diagnosed. At the start, I could stomach it, but now, ten months on, I cannot. Yes I have myeloma, and yes, I have a shortened life span, but, I do not want to see that in people’s faces when they talk to me. There is a difference between sympathy and pity, and the head tilters fall into the latter category and that is just not healthy for me nor for them. It’s a look, which makes me feel like a dead woman walking. Every time. I hate to point out the obvious, but this makes me sad. It makes maudlin thoughts set up camp in my head.

What follows, in this particularly scenario is the ‘how are you?’ A simple, caring question to be sure, but again, if during my whole response to said question, if the person continues to look like they have one ear heavier than the other, I am going to get frustrated. The frustration grows if their concerned demeanour switches to confusion. A week or so ago, I happened to find myself in the situation where I was confronted with several people who had too much wax in their ears. I am no stranger to the roadshow, but around every corner was a head tilter intent on talking to me like I have had a lobotomy. This brings me on to the second thing I loathe. They would not leave me alone, nor drop the subject of myeloma.

Myeloma, myeloma, myeloma, myeloma, myeloma. Bloody myeloma.

Way back when, many moons ago, I said that I did not want My Myeloma to define me. At the time, I was referring to me and my personality, my being. I did not consider what other people’s perception of me would be, and whether in their mind, I was going to be become my illness. I have been thinking about this for a fortnight, and unfortunately, for the people who would not take my standard briefing about my illness and demanded more, in their eyes, I am no longer just Emma. I am Emma with myeloma. I could basically be myeloma. Correction, I could be cancer, for myeloma may be too specific.

I have spent months trying to perfect the polite response to the ‘how are you?’ and then move to subject on.* I even practice it at home. Two weeks ago however, I learned that in some cases, this was not sufficient. When I responded saying I was fine, people doubted the sincerity of my reply and said, ‘no really, how are you?’, whilst looking at me like I was having a nose bleed. My internal monologue’s response to this was straightforward, it simply said ‘I do not want or need a counselling session, go away (or something um, similar).’ What actually came out of my mouth was ‘I’m fine, I manage and I cannot ask for more.’

The point I am trying to make, and I am using a lot of words to make it, is that the inquisitive head tilters make me feel like I am dying. Not only do they make me feel like I am dying, but they make me feel like I am a child dying only after my personality and 29 years of life have been brutally murdered, buried, eaten by maggots and forgotten. And all the time I feel this way, I look back at them smiling, because I do not want to appear rude or weak. I freely acknowledge that myeloma has made me boring, and it stops me from doing what I want to do 80% of the time, but it has not become all of me. Not yet. I have more to offer than My Myeloma, for I am not and should not be defined by it. Some people, just did not get this message.

In all honesty, I would be upset if somebody did not acknowledge ‘the situation’, but there must be a better way than making me feel like I am less than I am. There is a better way, I just cannot quite put my finger on defining it, but it does exist. If it did not exist, I would go about this earth irritated by everybody and everything, when in reality, there are only a handful of people who have made me feel like the end is nigh. The best meetings I find now, are the ones in which I do not think about them afterwards.

Talk to me about My Myeloma by any means, but be aware, there is more to offer. Maybe, and this is just a suggestion, we could talk about you? Just for a little bit.

My name is Emma Jane Jones and I am an ungrateful monster. With myeloma.

EJB x

* There are still several occasions in which I find the need to talk about my illness and I do. Like a said, a delicate balance.

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Empathy

It took longer than I anticipated after my diagnosis to be able to empathise with the lives of others.

From the start, and I know this because I wrote a blog about it, I said that I did not want things to change with my friends or family, I said that I was the same and I was able to support people if they needed it. I am not talking about supporting people in supporting me, that would just get complicated, what I meant was, in spite of My Myeloma, I could still be a friend.

The problem with this sentiment, as true as it was and still is, my mind, at times, has been otherwise engaged. And then some. As much as it pains me to admit it, when your existence has just been turned upside down and you are taking an obscene amount of medication, the trials and tribulations of everyday life, in the grand scheme of things, do not seem that important, and even on the occasions when I knew they were, getting my brain to engage, was difficult. I am referring to other people’s problems here, I readily admit that My Myeloma exaggerates everything in my life.

For a long time, I genuinely believed that I had lost all my empathy, in particular, my ability to sympathise. For a long time therefore, I feared that My Myeloma was turning me into a rather horrible person. The kind of person I only allow my family to see… I would look at people being happy or sad and, predominantly, all I would feel was a blankness that I knew was wrong. It is not that I did not care. I believe the fact that I knew what I was feeling was wrong, shows that I did care, it’s just I did not know how that worked alongside my self preservation mode, which has a big sign on it that says ‘my life is worse than yours, so get over it’… Evidentially, I *may* have felt a little bit of something other than the blankness. Something green. I continued to worry and dwell about people alone in my bed, like I have always done, being careful to never actually show them that I care (you really are lucky if you get a text message, the man hours that go into one of those puppies is immense), but for a lot of the time, I did not know how those thoughts could possibly fit in with my new life. I feel it is important to make note of the last point, in case you are reading this, thinking that I am a selfish monster. I promise you that that is almost certainly not the case.

Are you confused yet? I am and I have been thinking about this for months. It’s like peeling an onion. Multilayered.

I have discovered that celebrating with others is far easier than commiserating with them. I actually like it when people get good news or indeed, if the people I love are happy. It is rather pleasant to see a smile on a face now and again. After the initial shock of my diagnosis had worn off, I actually found comfort in it. Let us be honest, if I could not be happy for other people by now, I would never be happy in Mylomaville would I? So, as I have seen friends fall in love, buy houses, move in with their pumping partners, get a new job, release an album on iTunes, get engaged or build a Lego airport, I am genuinely pleased for them and it makes me smile, and it most definitely gives me something to talk about, which is always a bonus.

It also means that I am not a total disgrace to the human race and that I am a nice-ish person. Score.

Happiness therefore, is not the problem.

The crux of the problem therefore, really does hinge on my levels of sympathy for others or the lack there of.

I do not speak for all myeloma sufferers when I say that when something happens like getting a cancer for which there is no cure, all the stuff you used to over think and worry about, while they may still be present, pale in insignificance compared to The Diagnosis. They no longer keep you awake at night and only rarely do you cringe with embarrassment when you recollect previous indiscretions. That alone is a learning curve and unfortunately, it is a journey one has to take by themselves.

For me, in my life, I am the only one suffering from myeloma, nobody else in My Network is, and so their lives continue. People can support me, but ultimately their barometer stays the same. The bar for them, of what is shit, has not been raised (or should that be lowered?) like it has for me. What matters to them and keeps them up at night, whilst it may seem trivial to me now, it isn’t for them and strangely enough, that fact is not a personal attack on me. Getting my head around this was beyond difficult and it continues to be so.

For a long time, I did not believe that these two realities could coexist.

I have made many a song and dance about how I wanted people to treat me in exactly the same way as they did before my diagnosis, but my desire for normality, did not really take into account that things had changed. What would have once been normal conversations about a crappy week, were perceived by me to be thoughtless gloating about the lives of fabulous twenty somethings, something that I cannot even aspire to. The anger and jealously this created within me, made me bitter, paranoid and more angry. Garnering any sympathy after these little worms had wrapped around my brain, was next to impossible.

After a while, an undisclosed period of time, because even I do not know when it all suddenly clicked in my head, I realised I could be sympathetic and I could be the friend I remembered. Only if I tried really, really hard. Actually, it is possible if I throw away the bad thoughts as soon as the creep in to my head. Sensitivity also helps. FYI.

Until this happened, I could manage tales of woe if they were presented to me in such a way that acknowledged my situation. I know this sounds self indulgent, but I could not have somebody using adjectives like ‘worst’ to me about their lives, because they don’t know what ‘worst’ is. Perhaps I don’t know what it is either. We know our ‘worst’ and that is it. To prevent myself from being in a situation where I had to challenge my compassion, I avoided certain people, I had to. Yet another thing to make me doubt myself and my relationships, but that self preservation mode is there for a reason. It stops me from screaming at people, telling them that they are lucky and they should just shut their faces and enjoy the weather/their bad date/their day at work/the crappy pub/their train journey/their dinner, because there may come a time when they personally long for a time, in a galaxy far, far away, when these are the biggest issues of their day/week/year. Issues, which leave no lasting mark and can be healed quite easily. Probably with a Twix.

You see, I am like, so totally over it.

I guess, very inarticulately, what I am trying to say is that the sheer weight of My Myeloma overpowers everything else. I want to act and feel a certain way, akin to how people treat me, or once treated me, but the myeloma seems to always want to pull me in another direction. I could just about manage its shadow if my life were just me, but it is not. My Life includes The Network and everything that happened to them before I was diagnosed still happens to them; people still get sad and people still get happy for genuine and superficial reasons and I want to be a part of that. I have to remember that I was once one of those people who would cry over spilt milk.* Somewhere deep in my memory, I have to remember what I was like, so I can metaphorically hold my friends’ hands because I would never actually hold their hands, whenever they feel blue. It is always going to be difficult for me to sympathise because My Myeloma is so much bigger, there is no escaping that, but I hope that I am getting somewhere closer to a point where My Myeloma does not polarise. In terms of my friendship and what I can offer, out is the irrational anger at inconsequential pastimes and in, is cautious reinforcement fitted with an emergency sympathetic noise button. I hope.

Unless of course you have a cold, but that is worthy of another blog completely.

EJB x

P.S. Myeloma may have sucked out all my sympathy, but it has strangely replaced it with an unhealthy dose of over sentimentality. It’s a true story. You should just hear all the nice things I say about you behind your backs.

* To be clear, before the diagnosis, I would never have actually cried over spilt milk. It was a turn of phrase. I probably would have just gone really quiet and hid under my duvet for a bit and/or got drunk.

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