Needing to know


question markI called the hospital today as I was surprised that I had still heard nothing a couple of weeks after being discharged. Whilst the consultant  who provided my diagnosis had been lovely, and pandered to my need for information, no one else had thought to give me any information prior to sending me on my merry way. I was told I would be sent for, my results would take a few weeks, and I should come to terms as best I could with this new information. Trouble is, the information is sparse. I have MS. My options are to do nothing or to find out for myself. A teaching career spent advising students to use only reliable sources of information has been a good grounding to ensure I’ve avoided horrendous forums of scare stories and misinformation, so I’ve turned to MS UK and the MS Society. I have lost count of the number of hours I have spent perusing the vast array of pages. “Newly diagnosed”, “Types of MS”… the challenge has been what to look at first. I know I am arming myself with information in the way that a frightened victim might arm themselves with small rocks to throw at a violent oppressor – I need to know stuff and I needed to know it all. Now. This way there can be no nasty surprises. I am ready for you. I am armed.

Yet the more I read about this condition, the more I am realising that the over-riding theme of all of the leaflets and website information pages is this – you’ll just have to wait and see. Nobody knows. It is different for everyone, and it will be different for each person from one month, week, day, hour to the next. My endless list of questions are all yielding the same response – wait and see. But I need to know- what will happen? Wait and see. It could be this one thing or it could be any one of these other (approximately 100, or maybe more, perhaps a thousand…) things. In what order? Oh you want some sort of timeframe? Yeah, no, we can’t give you that either. You’ll just have to… oh, I see the pattern here.

So I am getting my head around the concept of this disease being different for everyone, no two are the same.

But there IS some information out there -my MRI. And I am convincing myself that this will hold some answers. Yes, everyone is different, but you have photographs, scans, pictures. And every picture tells a story. So I need to hear this story for myself. I need to speak to someone who can decode the illustrations, someone who can navigate the map of my journey that a magnetic image of my brain and spinal cord has provided, and tell me where this is going.

So I call. And I am told that there is a waiting list to see the only Neurological Consultant that practises at my local hospital. He visits on Mondays (only) and the list is 6 months long. I give my name… I am not yet on the list. The results of my LP can take “a few [Grrr – what happened to numbers?!] weeks” and I won’t be placed on the list until my LP results confirm my diagnosis. “But I have my diagnosis!”, I plead. Apparently the diagnosis where they tell you that you have MS is not the ACTUAL diagnosis because, even though they know, and you know, that you have it, “We have to tick all the boxes before you can go onto the list”. Don’t get me wrong, the secretary informing me of this bureaucratic idiocy is a lovely lady, and maybe it’s the fact that I detect a slightly apologetic,embarrassed tone in her voice that makes me just break down. Full on sobbing. The sort of sobbing where you are not sure you can breathe in without making that hideous toddler tantrum type of sound. I didn’t care. I was frustrated and feeling helpless and, my worst nightmare, uninformed. Not knowing is my most feared state. I cannot bear surprises, especially of the “I have a surprise for you” variety (which I translate as, “I know something you don’t know” chanted as if a playground taunt. Also translated as, to my inner psyche, “I have power over you. So there.”) Another six months of not knowing what would come next. No, wait, another six months plus the “few” weeks for my results to win my the prize of a place on the waiting list. I could not bear it.

I have also done myself no favours by deciding that I won’t tell “people” until I have seen the consultant. I see this as the MS equivalent of waiting until after the 12 week scan in pregnancy. I have no rational explanation for this, but I have drawn a line in the sand and I am not shifting it. It is one small way in which I can maintain some control, over who I tell and what or when. But this stance, combined with the waiting list revelation being uttered down the phone, fills me with a sense of limbo. I have MS but I cannot (ok, WILL not) discuss this with anyone outside of my very closest circle of friends and family.

All of this is flashing through my mind as the lovely, apologetic secretary utters the words, “Hold on a minute…”, and through my next series of sobs I hear her offering me a cancellation appointment on Monday. This Monday. Three days away. This angel from Neurology has offered me a way out of the darkness of despair and mystery, and I might, just might, get the answers I need.

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