MS, marriage and kids

My wife and I were dating when I was diagnosed with MS. We were pretty close to getting married and had already talked about it. I asked her to think long and hard about the worst-case scenario of me with MS before we got married, and I told her she should walk if she had hang-ups. She didn't, of course, but I've always thought that was unfair of me. She'd already been seduced by my charms. She didn't have much hope of being able to walk away :)

I won't say much about dating, as I didn't have that experience of meeting and determining when to tell. I suppose it would be much like what I do with employers, though. Once they can see the value I bring, they should know what the whole package is. I suspect single parents have the same issue. Perhaps we should ask one of them. If you're a single parent with MS, you've got a fantastic set of filters to weed out the undesirables.

Kerri and I were anxious about having kids. Of course, the odds are a little higher that they may contract MS, but it's nowhere near certain. The prognosis for someone diagnosed with MS today is also really positive. By the time they're of the age to get it, I'm thinking their story would be much different.

We were also worried about whether I'd be physically able to parent. There's already some things I won't ever do with them, such as playing basketball or teaching them to downhill ski. That's pretty small potatoes, though. We decided that parenting and the joy of children had a lot more to do with being present than being physically capable. We haven't regretted this choice for a moment and we never will.

MS and the job

I'm in positions that require me to use my brain, not my body or my hands. I don't know that anything I say applies to someone who does physical labour. I think if I had a physical job, I'd be figuring out a transition to something that only requires that I have a brain.

I've always told my employers about my MS right away. When I was diagnosed, I went back and said "I've got MS. I don't know what course it will take, but I'll keep you informed. In a worst case scenario, you may need to make some accommodations. It never occurred to me to be anything but upfront about it. I add value, and they were going to want to keep me.

I've carried that confidence into each job since. I don't simply announce "I have MS," just like I wouldn't when I meet someone. Rather, if they opportunity arises, I definitely tell my employer. I'd rather have them aware (and responsive) than unaware. If they're unaware, they'll do the perfectly human thing and blame your tardiness, your slow response or your being different on some evil source, rather than your health.

I also don't mind if they know before they offer me a job. I'm not desperate for employment, I'm desperate for a meaningful, happy work environment. By law, I'm allowed to pull the "bait and switch" and not tell them about my illness beforehand, but I don't really want to work for them if they would make a different choice if they knew.

How do you consistently do the injection?

People always seem surprised to hear that I've been on Copaxone since I was diagnosed and that I've given myself a daily injection for the last ten years. It's beyond routine now, so I don't even think about it, but I know some people can't stick with it. Why have I been able to?

The first injection was the most scary. It got a lot easier after that. After that first injection, in fact, I was a bit light-headed and had to lay down for a while. I had concerns that I'd had some strange reaction to the medication. Looking back, it's pretty funny... I know I was just experiencing anxiety. It's a pretty foreign experience for most of us to self administer an injection.

For the first period of being on Copaxone, my mantra was "My odds are better on this stuff." That was enough to overlook the inconvenience and sometime discomfort that comes with the medication. Statistics alone made it a given that I was going to do it.

After a while, say after a few years, I started having a confidence that the medication didn't just carry a probability of success. It was actually working for me.

After ten years, I'm wholly convinced that taking Copaxone has dramatically changed the course of my MS. If you're waffling on using a medication, especially if the hang-up is a mental block about poking yourself, do it anyway. After a while, you have to work to remember if you've done it that day or not. This brings me to a more practical tip, make sure you do it at the same time each day. My injection is now the last thing I do before I go to bed. It used to be first thing in the morning, which was fine, but evenings work better. Definitely that's just a personal preference thing.

This gives me a chuckle - In the first year or two, my wife used to ask me from time to time if she could "practice" administering the injection in case there was a day that I couldn't. My standard answer was that she could practice on the day I couldn't do it. I certainly have no problem giving myself the injection now, but if my wife wanted to practice a "refresher" injection every month or year, I'd still be getting the sweats.

My Olympic Triathlon experience

I did something I've never done in a race when I completed an olympic distance triathlon last weekend. I didn't time myself.

Sure, I knew my exact time and all my splits would be available for review by the evening (they were, by email), but there was only one measure I was interested in. Would I complete it, or would I not?

It was a pretty good test of willpower, but quitting really become an option to consider. I swam 1.5km, biked 40 km and ran... well, ran is an overstatement... 10 km. I was plodding, but comfortable for all but the run. Other than the soreness and the tired body, it feels pretty good.

I like these races as a very visceral way I can "fight MS." MS tries to take away some of my physical abilities, I try and keep them. It's not the whole picture of my life, it's not even the biggest piece. It is, however, something I'm careful not to neglect. Having physical ability and mobility keeps life pretty easy. I might not always have it, so I'll use it now.

Your circle of influence

There are many things in this world that can take away your power. They may not even be aware that they're doing it. I love the quote, "Take control of your life or someone else will."

If you don't get deliberate about what you want to do or how you're going to act, there are plenty of cues and suggestions that will tell you what to do. We all were raised by somebody, for starters, and we learned a style. It's pretty easy to fall into the routine of parenting the way we were parented, or to talk to wait staff at the restaurant the way your dad did. Micro-managers, politicians are also pretty good at pretending they know what's best for us all to do. If you don't have an intention, they will swoop in and make suggestions for you.

Stephen Covey's 7 habits, particulary his 1st habit be proactive takes on new and more significant meaning for me when I think about having MS. His first habit is best understood by considering your circle of influence and your circle of concern. Habitually, we get these two mixed up. We tie ourselves in a knot worrying about our nation's behaviour in reducing greenhouse gas emissions (Circle of Concern) instead of choosing an alternate transportation method for our commute (Circle of Influence). We complain about how morale at work is low and the boss doesn't get it (Circle of Concern) instead of organizing a lunch-hour pizza party for our coworkers (Circle of Influence).

When it comes to MS, we can get fixated on the cost of medication, the probability we'll stay mobile, the way our employer reacts to our relapses or the way we tend to list to the left when we walk. For the most part, these are concerns out of our hands. We can observe them, even state that we don't like them. If we wake up the next day and announce our dislike for them again, we're getting dangerously close to wasting our energy and disempowering ourselves from doing something useful.

On the other hand, your circle of influence always contains some pretty powerful tools to improve your life. You can always choose your attitude, where you put your energy and how you'll treat your body.

Next time you're frustrated, please take a moment and do a little exercise. Separate your frustration into two piles: the stuff that's not within your control and the stuff that is. Just to be fair, I'll do this exercise, too. Then I'll start working on the stuff that's mine.

Why write this?

As I celebrate a successful ten years since my diagnosis, I'd like to document some of the things I've learned. This will be where I do it.


Here are some motivators for me:

• MS can be a physically debilitating disease. Nonetheless, the most challenging problem I've faced isn't physical, it's mental. MS sufferers are in danger of letting the illness set the rules. I was in danger of settling into a helpless victim psychology when I was afflicted. This is a bit of mental shield. When I talk about my fight out loud, it's easier to hold myself to live it.


• This is like a snapshot of my philosophy at this moment in time. It might be interesting for me or my kids to look back on it some day.


• With all seriousness, having MS has improved the quality of my life. I need to give back. I hope my observations can help others.

My email to RONA

sent to their sponsorship address.

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Hi,
I’ve been diagnosed with MS for 9 years. On May 16, 2010, it will be the 10 year anniversary of my diagnosis.

I’m planning a series of events for 2010 to celebrate. The cornerstone of the celebrations will be a fundraising event on Saturday, May 15, 2010. All proceeds will go to the MS Society of Saskatchewan.

The culmination of the evening would be a draw for the top raffle prize, a custom-built deck. I’ve confirmed some experienced deck builders to undertake the work.

My request is that RONA be the materials supplier for the event. I would acknowledge your sponsorship in all ticket sales, in any advertising and at the event itself.

With your donation of deck materials, you would of course get title sponsorship. The working title is Nevin and Kerri’s RONA Backyard Deck Party.

I’m excited at the prospect of bringing a unique fundraiser to my community, having some fun and promoting a message of "success despite MS." As a long-time MS Bike Tour participant, I have seen first-hand the effort and passion RONA puts into supporting the MS Society. I hope we can work together on this exciting event.

If this sponsorship opportunity is of interest, I would suggest I could organize the specifics with a representative from my local Regina RONA, determining such things as appropriate acknowledgement of RONA sponsorship, materials to be donated and deck size.

Here’s my contact info:
Nevin Danielson
*****I don't really want all this on the 'net. I'm at ndanielson at sasktel dot net*******

Thanks for the consideration. I look forward to hearing from you.
Nevin

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stay tuned! I'll post their response.