Thursday, August 14, 2008


Over the years I've had a chance to interview a number of professional singers and musicians, sometimes live on air and sometimes taped to air later. I usually have some time to prepare for an interview, though not always. If I don't have time to do some research, I feel like I'm floundering.

I am a "go to" person for the local office of the MS Society so when the newspaper or TV folks want a quote or soundbite from someone with MS, they often go to me. I love it when someone is prepared with questions for me and when I don't have to explain the basics of MS. One of the best interviews I ever gave was to a TV reporter who has since become an instructor of media studies at a local college. (She also happens to be the wife of a former colleague. We see each other about once a year at social gatherings.)

Yesterday, I was interviewed by a young woman from a communications company that is doing the PR for an upcoming campaign by the MS Society of Canada, and I happen to be the spokesperson for this campaign in Halifax. This woman was prepared and what a treat to speak with someone who had done their homework. She knew what I did for a living and she had discovered my blog. She googled me. A very simple thing to do. Very basic research, really, but it made the interview that much easier for me.

She had one question for me at the beginning. After finding my blog she asked: Who or what is the Wookie?

That cracked me up, as it did the Wookie when I told him later. I explained that the Wookie is my boyfriend/partner/whatever-they're-calling-them these days. The reason for the nickname is that he is the hairiest guy I've ever dated. Not the hairiest I've ever met, but the hairiest I've dated. "And he doesn't mind being called the Wookie?" Well, no, he knows he's hairy.

That set the tone for the rest of interview. I talked for half an hour about living with MS from diagnosis to now. 10 years condensed into half an hour.

One of the questions she asked me had to do with what I would ask researchers or government. Well, when I have questions to ask researchers I ask them. I send e-mails to the MS clinic staff
when I need something explained to me, I talk to pharmacy students when I need someone to research and explain certain brain chemistries to me (students love to do this stuff), I even send e-mails to the researchers themselves on occasion. As to what I would ask government, I do that, too, though not as often. I ask them to support initiatives for the disabled, but asking government to spend more money on research is like shaking your fist at God. Ineffective. So I leave those questions to lobbyists.

But the surprising thing I came away with from the interview was my feeling that researchers really have to concentrate on the more progressive forms of MS. Right now I have a wonderful life with MS. I have gained more than I have lost with MS. I truly feel that way. But I am also aware that most people aren't as lucky as I am. I am also aware that I may not always feel this way. Even now, some days I get pissed off at MS. But I am more pissed off at what MS is doing to my friends and their families. We need to find a way to combat the more severe forms of MS. I am living a very good life with what I've got right now. And if this is the worst I experience I will consider myself truly blessed. Some of my virtual and real life friends aren't so lucky or blessed. It is for them that I do what I do. It certainly isn't for the money or the glory.




Girl, you are one of my heroes. I want to be you when I grow up. Thank you.

Shauna said...

Isn't it funny how I've thought the same about you? Which goes to show we all have our own specialties that only we can do.


Blinders Off said...

Wookie should be proud that he set the stage for a good interview :)

You know it is going to be a good interview when the interviewer makes you feel comfortable.

Shauna said...

Blinders Off,
I could have spoken to that woman all evening. She was very good.



You go girl...keep spreadin' the love as only you can do!

(And have I mentioned some of my best friends are Canadian? LOL)

Linda D. in Seattle

frNBtoTO said...

Hi S,

Thanks for the shout out;)

I wanted to thank you for your patience and candor in answering my questions regarding your personal journey with MS.

Before working on this project with the MS Society, I had no experience with MS and really had no idea what it was.

Now that my contribution to this project is nearly over, I am happy to say I have accumulated a few tidbits of MS knowledge.

After speaking with several people with MS, what stood out to me the most wasn't the symptoms or limitations but their unwavering ability to push through scary episodes, remain optomistic and passionate for the MS community, and most of all to never let a disease, its limitations or a previous life define them.

I asked one woman how she faces constant uncertainty and anxiety about the future. She replied,"if you look for the silver lining, you'll always find it." I think that's great advice for anyone...


Shauna said...


Thanks for coming back to say hi!