I can.

This woman ran a marathon every single day for a YEAR. On the final day, just for funsies, she ran two!

Oh, did I mention she has MS?

http://cphpost.dk/sport/marathon-woman-crosses-finish-line

Tangentially related, there are many great things about the person I share home with but one of the greatest is that she doesn't let me say no to exercise. If I'm kinda tired or don't really want to, I don't get a look of disapproval or some elaborate attempt to change my mind - she chooses the only approach that works for me - she ignores me. She goes to the closet, puts on her sneakers and stands there until I'm ready to go too. I could be a stubborn ass about it, but I know that "I don't want to" is not a good reason and I'd only be mad at the missed opportunity later in the day.

So, while I'm no Annette Fredskov, be active with me. Come geocaching. Let's go on a hike. Grab a leash and help me walk the dog. If there's snow on the ground, bring your snowshoes. Life's a journey and journeys aren't all about sitting still.

Mind the gap

"You don't understand! My family doesn't understand. My friends don't get it."

I hear about this all the time in the MS forums I read and moderate. There is a disconnect between those with MS and the people we love and that gap can cause the breakdown of our most prized relationships. Where is the short in the cord? Communication, of course. 

In many cases the people around us have been healthy their whole lives. Colds? Sure. Maybe some itchyashell hayfever, the odd flu, or other aches and pains. Granted, some have faced the fear of having cancer. But all in all, most people don't have experience living in a body that doesn't work as expected. It's pretty specific to MS and autoimmune issues. So, how do we let them in? How do we help them understand the world as we see it? Or, on the far end of things, how do we allow people to see past the big red billboard of disability that has long been associated with MS?

I think the answer is in compassion. Not everyone else's compassion towards my own personal situation - that's a bit obvious, I guess. People traditionally try to show compassion to those who are seen as sick or weak. Otherness. Rather, I'd like to find a quick route to compassion for the people around me who don't get why some days I'm smiling and comfortable and at other times it takes a while for me to warm up. 

If we, as people with MS, want others to be able to understand, we have to take the same steps towards understanding  After all, it's not anyone else's fault they haven't had to work through getting their legs to cooperate and not jerk in the wrong direction like a drunk Disney character on stilts. People can't relate when we don't let them in.

If we can refocus our own feelings of being devastated when others don't understand, and stop indignantly insisting that others should get it through osmosis or black magic, we can communicate more clearly and with purpose. I can tell you from my own experience and the experiences of those around me that when people don't get it, they feel impotent and that cut off can build rifts and isolation on both sides. Taking a few moments to explain why you can't make it to a bbq extends more than information; it offers a very clear connection rather than a mumbled message that leads to confusion.  

Subtlety isn't always helpful and stating what may not be obvious to others takes some of the responsibility off of those around us. Instead of feeling resentful towards others when they don’t face the same physical or cognitive issues, or disgruntled over their lack of understanding, hopefully, I can redirect my anger and conjure some compassion towards them. With a little luck, the magic words needed to let them in will stem from there. 

“…feelings like disappointment, embarrassment, irritation, resentment, anger, jealousy, and fear, instead of being bad news, are actually very clear moments that teach us where it is that we’re holding back. They teach us to perk up and lean in when we feel we’d rather collapse and back away. They’re like messengers that show us, with terrifying clarity, exactly where we’re stuck. This very moment is the perfect teacher, and, lucky for us, it’s with us wherever we are.” 

― Pema Chödrön

Happy World MS Day!

What better day to update than today?

With your help, I raised $1340 for the Halifax MS Walk. Thank you all so very much.

The walk was good. It was very well organized with lots of signage and plenty of volunteers. It was a sunny day in Halifax, but the wind (and a few water stops) kept the walkers cooled off nicely. Yellow dog was excited to be out in such a big crowd of people and seeing other dogs. It was her longest trek in months, and all the people + distance + heat = one tired pup that evening.

I have to admit, I was a bit confused at one point at the event. Nance tried to register because of this blurb on the MS Society's site:

On event day, all participants who have not raised funds in advance will be asked for a donation of $20. At this time you will also be asked to sign a participant waiver. 

Upon trying to give her $20 and sign a waiver, she was told by a volunteer that she didn't have to register. If she was walking with someone she sponsored, she didn't have to do anything but walk. Nance had already generously sponsored me, but it seems kind of silly for a fundraiser to be turning away money, doesn't it? It's not like they can keep the general public from walking along for free, so you'd think they'd take whatever funding came to the tables that day. 

No real complaints about the event, though. It was great to have a little posse there with me. I'm happy to report that I have never had to walk alone. I doubt I ever will.

All in all a great day - I got to see family that I don't see nearly often enough, and there was time to show kids that not all big dogs are scary and mean. 

These walks are always a bit emotional for me. People with MS can choose to wear a red participant bib and every time I'm at one of these events, I find myself wandering the venue alone to take a look at the red bibs. One thing I've gained from these events is the knowledge that we MSers are of all walks of life. It's a hidden disease for so many, which makes awareness that much more important. This year, a lot of the red bib wearers were young, fit, and looked vibrant and happy. Some walked with their children. Some walked with their parents. Every one of us had faced that same diagnosis phone call or doctor's visit. None of us were broken by it. 

Goal met!

Thanks so much for supporting me in the MS Walk. I am touched by the generosity of those around me.

Very fortunate.
xo
N.

awareness

Next weekend, I am making the trip to Halifax and have decided to do the HRM MS Walk while I'm there. 

I've recruited Nance, yellowfoot, and possibly one of my many relatives in the area to join me for the walk. [Sidebar: I asked her if she wanted to meet up for a beer while I'm in town and then did a switcharoo and asked if she wanted to walk 7 km instead. My bad. I hear cold beverages are refreshing after walks.] 

In preparation for the event, I shot up my fundraising flare yesterday and am nearly at my goal! I have 9 days to get the remaining $45, so fingers crossed! I have a fantastic support system and they/you definitely come through for me for this cause. I get all teary and overwhelmed when people donate on my behalf. I hope you guys know how appreciated your gestures are. See? Teary.

May month comes with a lot of MS thinkery for me. Campaigns are cleverly tagged with mottos about "raising awareness" because it's become gauche to say "raising money" even though fundraising is the major player in organized events. What does it mean to raise awareness? I have MS. What awareness am I working on?

As I'm writing this, my friend Brian got me closer to my end fundraising goal. I haven't spoken to him in person in over a year. Yesterday Mary donated, and I'm fairly certain we haven't spoken face-to-face since the mid 90s. My point? If I put my face out there publicly as "someone with MS" great people like this get extended the opportunity to help us. We are humanizing MS. Showing the world that people with MS cover all walks of life. Hiding MS is no longer an option. To get the help we need, we need to shine the light on that patch of darkness.

This kind of personal awareness helps create and maintain support initiatives and educational programs on the community level, not just find research. By connecting real faces - our faces - with the disease we raise the level of compassion and understanding among those in the non-MS population. Those people volunteer and become the backing we need to work on employment measures, caregiver support and an endless list of other services that are desperately needed. 

I can say for sure based on my work with an MS forum, that not everyone with MS wants to be known as someone with MS. Some see public blogs and fundraising as putting the focus on the disease rather than the person. There may be some truth in that, but I'm pretty sure my friends and family still see me as a real person and not just a walking creature of demyelination. For me, this is my way of saying that I have MS and people with MS are real people who don't always have the means to advocate for themselves. I don't think I'm doing anything selfish or all that courageous here. I just want change and sitting on my ass and doing nothing gets me nowhere. 

Even if I stumble, I'm still moving forward.

Ring Theory, oh how I love this article

The LA Times put out a great little piece on how to talk to someone struggling with crisis.

You can read this bit of awesomeness from Susan Silk and Barry Goldman here.

I cannot begin to tell you how much this article speaks to me. When I seek support about losing my vision when I get migraines, please don't take the commiseration angle and tell me about your own headaches in an attempt to normalize my MS. This isn't about you and that approach belittles my state of being. I assure you, when you're looking for support, I'll try my best to make you feel supported and heard. I may not be able to help, but I will try my best to employ this theory when others look to me for empathy. Crisis is not a competition. We all own our little bits of darkness. I'm not looking for you to make things better. Just listen.

Stranger Feet, the sequel

This post is potentially upsetting to those close to me and to those of you have MS and are newly diagnosed. Consider sitting this one out.

Saturday was a great day - had a little doggy hike, supper with friends, and a keg party fundraiser at a pub. 

And it all torpedoed in an MS moment. At the bar, I went to the washroom - wait, to clarify... granted, I had had a number of frosty beverages, but I was by no means completely sozzled. I like that warm, tipsy feeling, but don't like the loss of control that comes with drinking too much, so I try to moderate myself. So, I went off to the washroom and took a step from the stall towards the sink and Left Foot sneered at me, "You want to walk forwards, eh?" and it yanked me sideways. Right Foot wasn't much help. It shuffled off a little waywardly and then ignored me. Stranger feet had returned.

Fuck. (sorry, mom)

There was no one around, so I stayed there a minute, composing myself. I knew I hadn't had all that much to drink and my feet were telling me this wasn't from the booze. MS moments aren't all that common for me and when they happen, they take some emotional grappling. After a minute or two, I told Left Foot that I was going the hell home, with its cooperation or not. So, my feet got their act together somewhat and I was able to take a few steps. I ambled back and forth in the washroom until I was fairly certain I'd not fall down, and then headed back outside. Nancy had noticed me missing for a while and was on her way to see if I was okay. Left Foot decided to take yet another snooze, no matter what signals my brain were trying to send to it. I told Nance I had to leave. My brain to foot transmission was sincerely messed up. So, without a word to a small group of friends, we left the pub and hit the sidewalk. Each step a misguided, misdirected crapshoot.

By the time we made it to the sidewalk, I had started crying. Overwhelmed. A random, friendly drunk man stopped to make sure everything was okay. Not sure what he thought was wrong, but it took a little convincing for him to keep walking. I love Atlantic Canada. Even the drunk people are polite.

We grabbed a cab home and I was pretty much a sobbing mess by the time we stopped outside our doorstep. I was crushed. 

See, not being able to walk a straight line from a few too many beers? Well, that I can handle. Not being able to walk a straight line nor predict which direction your foot will move? Incredibly unsettling. Left Foot was a wobbling, lurching entity every third or fourth step.

Thankfully, Nance helped me inside and sat with me while I blubbered and snivelled. Grieving normalcy begins again with every big MS moment - never the same twice, but the emotion has to be processed anew each time. I'd love to be able to tell people that you get used to it, but you just don't. The stairs were too daunting, so I bunked on the couch for the night. I laid awake, contemplating the unpredictability of MS for a while, finally lulled to sleep by the heavy purring against my side. 

I woke today with a tiny headache. No stranger feet. Dark emotional cloud.

Lesson learned: If I say the phrase "I am so tired" BEFORE heading out somewhere for the night, I should 1. stay home, or 2. nap, ffs. I need to respect fatigue and the results tiredness can wield. This isn't the first time that being tired has brought a sticky onslaught of symptoms.

Had a sea glass picking beach stroll with friends today to take my mind off of my body. Nothing calms me like being on a beach. I can't remember a time when that wasn't the way.

In much better news, it's 10 weeks until my very dear friend visits from the other side of the Atlantic. Lots of fun planned. With naps.