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.
E.J. Bones 
Well I’m not tilting my head (I have to say that because I know you can’t see me, my webcam is switched off). Personally I like reading all the stuff on your blog, whether it is about the big M or you best friend EMan. How is EMan now?
Emma, I love reading your blog. It gives me some insight into my daughter also. She does not want to be known as Sara, 32, with Myeloma. I think now almost a year after transplant things are about 80% back to the way before. Of course no roller coasters or bungee jumping. As her mom it’s hard sometimes not focusing on how she is feeling, or what the doctor says but I try very hard not to talk about it all the time. As her mother it is constantly on my mind & that’s the hard part for me.
I asked my doc about fairground rides and abseiling, the other week. He told me to get on and live a little. Me! With my back broken in 4 places and my ribs in several more! So I reckon rollercoasters aren’t a complete no no, you know.
“It will now, forever be, that way”. Actually, with a bit of luck, that may prove not to be true. It is changing for me, as time goes by.
I only know you as and because you are “Emma with myeloma”, but your personality (and we are all much more than this effing disease) shines through, believe me.
I think “how are you?” is, in our context, a shitty greeting. Even when I say “good”, I’m liable to then groan or moan a few minutes later, and people say “I thought you were having a good day”, and I have to explain that its not quite as straightforward as that. I was thinking of restoring the old English habit of “how do you do?” to which the response is never an answer, just a repetition of the questions “and how do you do?” Would make life much easier for us. (I’ve been planning to blog this idea for ages, just hadn’t got round to putting it down yet.)
Chin up! And ears level.
Alex with myeloma. And I’m fine thanks. Except for the achy bones.
“Lord Darlington: How do you do, Lady Windermere?
Lady Windermere: How do you do, Lord Darlington?”
Lady Windermere’s Fan – Oscar Wilde
Or you could just say, in the words of another Englishman (I think he was…) “I’m not dead yet!” (Monty Python) People who are nosy will be put off, people who really care might say, “Oh, I’m so glad.”