Sunday, 26 July 2015

A Confusing Condition

I am just returning to work after two weeks on leave. Not that we were away (other than a day or two here and there) but it was good to have the break. In the middle of this fortnight there was a family wedding. What a great day it was. A real joy!

I enjoyed reconnecting with family and with friends (some of these friends I have known since childhood, but I see only rarely, and usually at such events).

For various reasons I have been feeling particularly well these last two or three weeks (since my last post here). Indeed, I have enjoyed a consistently better level of health than I have done in the previous two and a half years! There may be several reasons for this, but whatever they are, I believe that God lies behind all of that, so I am grateful indeed to God!

Yet, I made the conscious decision to take a walking stick with me to the wedding. Lately I have used my walking stick only occasionally and when I have it has been an indication that I have not been feeling so steady… in every sense!

Sometimes (not always) my balance is a little compromised; sometimes (not always) my legs feel heavy, tired and sore and to have an additional aid can help; sometimes (not always) stairs can be a challenge and (if a lift is not available or convenient) a stick can assist.

But, none of these things have been true over the last few weeks.

However, even when I am feeling well, I know that standing ‘unpropped’ for long periods of time can be a difficult, draining and debilitating experience. Don’t ask me why standing has such an effect when I can walk or cycle… but that is my reality (when I consult physios regarding this they try to explain it, but it still seems odd to me!).

So, knowing that the early part of wedding receptions can involve long periods of standing, and being aware that this reception was to be in a marquee (and so no walls to prop oneself against!) I took my walking stick. Just as well, as I had to spend a considerable time before the meal standing without the means of leaning on something and with no chairs in sight on which to sit!

And, I was fine. I had my walking stick!

And yet, the number of people who said to me the likes of ‘But, you are looking so well’, or ‘lose the stick!’ and who looked confused and a little askance when I managed (one only!) dance…

Yes, I know it looks confusing, and it appears that I am well and that it seems to make no sense.

It does not make a lot of sense to me either.

And I would do almost anything be well again, not to have this condition, or consider energy depletion, or where the loos are, or what I can manage today because of what tomorrow holds; not to have to think ahead about walking sticks, or if there will likely be walls or chairs or other furniture against which to lean. Or just simply to be able to manage what I once did.

Years ago, when I heard about reports in the newspapers (usually the Daily Mail or Daily Express!) regarding supposed ‘benefits frauds’ who were videoed dancing or whatever when they were claiming benefits for disability I used to agree with the critics and get very annoyed with the ‘cheats’! My annoyance was partly because they were (as I thought) turning public opinion and sympathy against those with genuine need. I am still irritated at those who exploit the system. And yet, now I wonder if it is as simple as it seems.

How could I – a man with a walking stick – also manage a dance? Yet I can… one at least.

And I know the reality that I dearly and deeply wish was not mine. But it is.

I also know what my immediate family witness when I return from conducting a wedding or funeral where unpropped standing is almost a necessity and I am utterly wrecked and unable to function for several hours.

But, then, nobody else sees that.

These last few weeks I have been attending the MS Therapy Centre in Leith where I have had the privilege of meeting with many folks who also have MS.

One of the things that strikes me is how different we all are. Some (like me I guess) appear unaffected to the casual observer while others (possibly most) of my new friends need sticks or wheelchairs.

On some days at the Centre, I have felt like a fake and a fraud. On other days, I have connected with several who – like me – seem outwardly / visibly ‘well’.

This was something on which I had already reflected, as I have two close relatives with MS whose experience is very different from mine (thus far). When they hear that I can cycle, walk the dog etc, they are amazed. And yet, in relation to another family wedding coming up next year in California, one of these relatives will be attending while I have decided I cannot. My symptoms (although less obviously disabling or visible) mean that the flight would be unbearable and the potential ramifications too great. Following our last trip to the States (and that only to the East Coast) and my utterly dreadful experience on the journey back, I doubt that I will be able to again make that trip, far less to the West Coast.

‘But, you look so well’.

Yes, I do. And thankfully I have been very well the last few weeks. I hope it continues and I remain deeply grateful to God.

But judging simply by outward appearances is rarely if ever the best way of approaching another person or situation.