Who are you without your MS? Loss of identity essay that touched a nerve in me.

[Lazarus]

Don’t Let MS Become Your Whole Life
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By Matt Allen G—February 3, 2016
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After I was diagnosed with multiple sclerosis in 2010 I told myself that MS would not become my identity. It would not keep me from doing the things I loved; I would always find a way to beat MS and if I stopped doing something simply because MS was making it hard for me that would mean that MS won. I don’t like to lose. At first, I did really well at maintaining my hobbies but then again, at first, my MS really was not that bad. Occasional pins and needles, drop foot, stuff like that. My attitude was as positive as ever!


Now let’s fast forward to the present; I am sitting in my office chair browsing Facebook when a thought crossed my mind. Who am I? What do I mean by that? I mean what makes me ME? What is my identity? I decided to write up a list; I made 2 columns, one for “who I am now” and one for “who I was before MS”. First I attacked the “who I was before MS” list and that was easy, in fact, I had to stop because there was just too much. Then I moved on to the “who I am now” column. There was significantly less in that category and what was really depressing is that when I took away anything that had to do with multiple sclerosis there really was nothing left.

I have let MS become my identity.

I feel like I am in the middle of a huge identity crisis, without MS I don’t know who I am! When did this happen? After some thinking, I realized it was a very slow change over the years. Something got hard to do and instead of trying harder to find ways to keep doing those things or exercising my abilities to gain that function back I just let them go. One at a time until that “who I was before MS” list was gone. I sat down for a while and looked at all my old composition books from years ago that I used to sketch and write in. I looked at old folders full of writing, little ideas and sketches for fictional stories my friend and I were working on. Even a novel I was working on! Old pictures and “souvenirs” I kept from different places I have been or different things I have done. It made me feel like I was looking at someone else’s life. I was jealous of “this person”.

So now I have to figure out how to slowly work some of those things back into my life but instead of working from a 6/10 to get back to a 10/10 (or at least an 8) I have to work from a 1/10, maybe even a zero. It’s going to be much more difficult to start all over. “If you don’t use it you loose it.”

So what is my point here? Certainly not to just say, “Oh poor me”, no, I simply feel I should warn others of this slippery slope that is so easy to fall down. Learn from my mistake and spare yourself the extra amount of work I will have to do to get back to feeling like an individual who happens to have MS. Is something getting harder? Something as simple as writing with a pen and paper? Well, don’t just give it up because once it’s gone you will all of a sudden realize how much you miss it and could use it. I wish I could still write with a pen and paper and produce writing a little better than a kindergartener who needs that giant lined paper with the dashes down the middle. Practice doing what you can every day to keep it alive because if you don’t? It will die. Again, “if you don’t use it you loose it”.

Sure, there are many things I used to do that I physically just can not do anymore but at the same time, there is so much more that I could still do if I had been willing to accept that they would just be more difficult. I realize now that it would have been worth the extra effort because feeling like you have no real identity besides a disease is a pretty horrible feeling"

[agate]

Interesting article. I wonder if women are often a bit luckier than men here.

Many of us have been housewives and/or moms at some time in our lives, and even if we haven't, the chances are that we've usually felt we had to do our own meal preparation, cleanup, laundry, "tidying up," mending, shopping--the little jobs that have to take up so much of our time.

With a disabling condition, those little jobs don't seem so little any more but since we're so used to doing them anyway, we probably have our own system going, and we modify it as we go along, knowing we can do that because it's our time and our life and we're still in charge of that part of it (what we eat and how we fix it and when we eat it, when and how we clean up our surroundings and our clothes and ourselves).

It's not that men don't do these things. It's that to them it's often not very important. For some of us it's been important enough for us to read the women's magazines for tips on removing stains or doing away with clutter, recipes, household rearrangement ideas, and on and on.

I'm just saying that just being is often important enough for many women that we don't feel the loss of our other identities quite so keenly as men do.

I knew a man with MS who had worked in the airplane industry until MS came along in midlife. He lapsed into dependency very easily, relying on first a wife, then (after a divorce) on his aging parents to look after him. At his very disabled stage, he was probably unable to cook anyway but I knew women as disabled as he was who were still cooking.

That's what they'd always done. So they kept on doing it. They modified their kitchens and the way they cooked, but they did keep on. This man was up a creek when his parents died, and he spent his last years in a nursing home.

This one example isn't everyone, of course, and here we have Howie who is soldiering on and making his own meals without a complaint. But he may be the exception. Howie paid attention to his mom and his grandmother too, by all accounts, and how they did things. Not every guy bothers to notice what the women in the household are up to.

[Virginia]

Very good article and very true. But for me, there are things I can fight and things I just can no longer fight and have to give up. I am trying to accept that that is true for me.

[Lazarus]

Interesting article. I wonder if women are often a bit luckier than men here.

Many of us have been housewives and/or moms at some time in our lives, and even if we haven't, the chances are that we've usually felt we had to do our own meal preparation, cleanup, laundry, "tidying up," mending, shopping--the little jobs that have to take up so much of our time.

With a disabling condition, those little jobs don't seem so little any more but since we're so used to doing them anyway, we probably have our own system going, and we modify it as we go along, knowing we can do that because it's our time and our life and we're still in charge of that part of it (what we eat and how we fix it and when we eat it, when and how we clean up our surroundings and our clothes and ourselves).

It's not that men don't do these things. It's that to them it's often not very important. For some of us it's been important enough for us to read the women's magazines for tips on removing stains or doing away with clutter, recipes, household rearrangement ideas, and on and on.

I'm just saying that just being is often important enough for many women that we don't feel the loss of our other identities quite so keenly as men do.

I knew a man with MS who had worked in the airplane industry until MS came along in midlife. He lapsed into dependency very easily, relying on first a wife, then (after a divorce) on his aging parents to look after him. At his very disabled stage, he was probably unable to cook anyway but I knew women as disabled as he was who were still cooking.

That's what they'd always done. So they kept on doing it. They modified their kitchens and the way they cooked, but they did keep on. This man was up a creek when his parents died, and he spent his last years in a nursing home.

This one example isn't everyone, of course, and here we have Howie who is soldiering on and making his own meals without a complaint. But he may be the exception. Howie paid attention to his mom and his grandmother too, by all accounts, and how they did things. Not every guy bothers to notice what the women in the household are up to.

Agate,
You wrote a very thoughtful response. Interesting analysis. Since I had no chilfren and have lived in the male world of farming, tractors and mud and machines, I think you give a lot of very valid points. So, I should be happy that the only one who dusts, scrubs and straightens is me!

[Lazarus]

Very good article and very true. But for me, there are things I can fight and things I just can no longer fight and have to give up. I am trying to accept that that is true for me.

Perfectly said. AMEN.

[Sunshine]

I am grateful you posted this Laz. I was thinking about it this morning as I ate breakfast.

Today was to be the first day I returned to the public heated pool since my pool is too cold now. I was focused on my fear and all of the “what if’s”and thinking of just giving it up and not trying.

Then I read your post Laz and reframed it as”let me see what ai can still do.”

[Cat Dancer]

Until I got really sick now 4 years ago, with these pressure sores, esophageal ulcers, etc., I was one of those folks who did my damndest to not let MS affect what I wanted to do. For some years I worked full time, then part-time, did a lot of volunteer work. When I finally quit my job, I was still active: there was a time when I was president of a big city League of Women Voters, head of a committee at my church, member and chair of the board of ethics of that major city, a volunteer at a news organization finding poll watchers for all 72 counties in Wisconsin -- all at the same time. And maintained a household (cooking, cleaning, etc.) for me and my husband.
I
But then I got sick. Really sick. And now...well now...I 've lost all ambition. I just don't feel like doing much. Husband gets me out of bed in the morning, I play on the internet, fix a couple of meals, read a lot...but that's about all. I have a new dollhouse that I'm working on...a bit...but even there, I just cant get motivated.

So I need to ponder this article more, I guess.

[agate]

Fixing a couple of meals is huge! You didn't mention and some may not know that you really cook. Some of us here may fix meals but they consist of shoving something frozen into the oven or microwave.

[Sunshine]

Is it because you can’t, or is it Depression?or something else Cat?

[Lazarus]

Until I got really sick now 4 years ago, with these pressure sores, esophageal ulcers, etc., I was one of those folks who did my damndest to not let MS affect what I wanted to do. For some years I worked full time, then part-time, did a lot of volunteer work. When I finally quit my job, I was still active: there was a time when I was president of a big city League of Women Voters, head of a committee at my church, member and chair of the board of ethics of that major city, a volunteer at a news organization finding poll watchers for all 72 counties in Wisconsin -- all at the same time. And maintained a household (cooking, cleaning, etc.) for me and my husband.
I
But then I got sick. Really sick. And now...well now...I 've lost all ambition. I just don't feel like doing much. Husband gets me out of bed in the morning, I play on the internet, fix a couple of meals, read a lot...but that's about all. I have a new dollhouse that I'm working on...a bit...but even there, I just cant get motivated.

So I need to ponder this article more, I guess.

Me too. Which is why I posted it. I wish it didn't but it spoke to me.

[Cat Dancer]

Oh, I suspect for me it's depression. I can sink pretty low sometimes, and "moderately low" most of the time! :) Yes, cooking...I do like to cook and bake. I keep tossing TC's stuff out of *my kitchen* so I have room to do that. I think his stuff all over is a big depression trigger for me -- I can't move through much of the house, anymore, because of his stuff... (he's a hoarder).

[Sunshine]

You’re a saint for living with hoarding. That would send me to the psych ward. Or a diff home.

[Lazarus]

Oh, I suspect for me it's depression. I can sink pretty low sometimes, and "moderately low" most of the time! :) Yes, cooking...I do like to cook and bake. I keep tossing TC's stuff out of *my kitchen* so I have room to do that. I think his stuff all over is a big depression trigger for me -- I can't move through much of the house, anymore, because of his stuff... (he's a hoarder).

My husband John is your husband's missing twin. Depression, hoarder husband and no control over what my house looks like because of it, and identifying as a farmer almost totally now. ☹️

[nuthatch]

I find frustration my biggest issue with MS. It is always getting in the way of my ambition. I had big plans of doing the things I wanted to do when I finally had the time, once the kids were out on their own and I no longer had to work. I am have mountains of sewing and other projects to do, but because being confined to a wheelchair, I can no longer spread out fabric on the floor to lay out a pattern to sew, let alone operate my sewing machines using foot pedals, when I can't move my feet or legs at all. I continually seek out new creative outlets, but am often frustrated that disability gets in my way, be it fatigue, dexterity, accessibility, ect.

What used to be the simplest thing to do, is now so difficult and takes much more effort and much longer to do. Housekeeping is a huge frustration for me. DH does not have the same standards as I do. It bothers me that he can watch me struggling to do something that can take me 2 hours, and he can do it in 5 minutes. It reminds me about the "spoons" story I read here years ago.

Anyway, I feel it's all about adjusting, adapting, accepting and refocusing, rather than fighting and mourning losses.

[funnylegs4]

This is a fascinating essay. Thank you! I know people who let their disability utterly consume their identity to the point where it is unhealthy, I'm somewhat guilty of this too. I think people confuse external aspects of themselves like what they do or what they look like etc with Who They Are, instead of maybe approaching it from an internal aspect like a spirit or soul or what have you. As a person with brain damage from CP I also happen to think we are more than our brains, like there is something beyond those circuits that make us human and gives each life value.