Now you see it, now you don't.

[immisceo]

With a disease wherein very little is guaranteed (expect the unexpected), one of the skills I'm trying my best to hone is that of adaptability. Things will change, perhaps for short spaces of time, perhaps permanently. People will change, perhaps for the better, perhaps not.

This piece showed up in the weekly email from one of my favourite sites. It manages to both resonate and give me some serious perspective, a feat not often encountered in one short commentary. It's both 'I'm with ya!' and 'I can't possibly imagine'.

This post is from a woman who was born profoundly deaf and has recently learned her vision is now, permanently failing. What I recognise? The fear of becoming a hermit, of finding people around her reacting to her differently, of not wanting pity, of hiding the extent of things sometimes. What I can not begin to comprehend? Life without a sense I've always been able to depend upon (hearing) and knowing that any vision loss I've experienced is uncorrectable or temporary, the amount of adaptation that would be required of me.

It's a powerful, short read that I felt I should share. http://www.quora.com/Cristina-Hartmann/Posts/A-Confession-of-Sorts

[HVAC]

I have learned adaptability. I was almost deaf and had my hearing restored as an adult which was different. Then I found out my  permanent double vision, cognitive issues, vertigo, etc were a lifetime of MS.  I was hospitalized for a Neurological illness in 1965 when I was two, the Doctors now think I had MS my whole life. I was put in mental institutions as a child because no one understood it was Neurological. They were not nice places. Then I found I had PPMS a year after I was finally diagnosed with MS. Two years later I was diagnosed with an incurable cancer. My future is dying in my 50's or a Progressive form of MS. I choose the MS and its uncertainty. Either way I only have today.

My life is good today.

Alex

[kwarendorf]

The "don't want to talk about it" thing presents an interesting dichotomy. I don't want MS to be the center of every conversation I have. There are also things that my GF might not understand, so talking to her about them would be unsatisfying for both of us. And yet I do want to talk about it, with like minded people. Things that would frighten her, might make us laugh :-)

[immisceo]

It's really only at certain times I'm susceptible. That took me a while to admit to myself, as like yourself, I'm fully functioning 99% of the time. It's not the headspace I inhabit in my day-to-day life.

That's the perspective-lesson of this. She knows it's coming, but I know that most of my issues (at this stage in the game) will get a reprieve. I also agree with the 'don't focus on what you can't control, get on with what you can' mindset.

I was also pretty quick to tell friends and family, though I try and keep it out of conversation. It's one of the reasons I finally joined up here; turns out, I did want to talk about it, and with people who 'get it'.

[kwarendorf]

A very interesting read, one with many parallels to life with MS. One big difference is that she knows what's going to happen and we don't :-)

I am very able at the moment. If you didn't know I have MS you'd never suspect it. I know. I am doing everything I can to keep the MS wolf at bay. I am keenly aware of what might be, but don't allow those thoughts to occupy much of my thinking. As the writer points out, there's not much we can do about it.

Virtually everyone I know knows I have MS. I don;t present myself any differently than before MS, so there is no reason for them to treat me any differently. And they don't. I may wake up tomorrow unable to walk, or use my left arm, or with serious urinary incontinence. If I do I'll deal with it then.

MS seems to have focused my attention on today. I will do everything I can to fight MS, but I will not surrender to the fear of its endemic What Ifs.

Kyle