I am a January baby. I was born in 1986 during a cold winter in Canada. Seriously, is there any other kind?! My mama’s due date was in December but I decided that didn’t work for me. Clearly I was a procrastinator even in the womb. It’s been 27 years and nothing has changed. I get things done, but usually at the last minute. I start my Christmas shopping months in advance in the hopes that I have everything completed by the time it arrives. Inevitably, there are still the last minutes shopping runs on Christmas Eve. I am just fine with my procrastinator label, most of the time. The one place I don’t think I am a procrastinator is when it comes to my MS. (more…)
I wrote this article a few months ago but hesitated in publishing it. I think I hesitated because if I published it that meant everything I had said was a reality. It is a reality. It is my reality. It is my story and my MS journey. Each day holds something different. It’s not easy and that’s okay. I have invited this community into my MS journey and I need to honour that connection by being honest about where I am at. So without further adieu here is another chapter in my story.
Tuesday of last week started out as a day with such promise. Sure, this crusader had to get up at an hour she would rather not see but it was a bright and sunny day! How could a beautiful day not be an occasion worth smiling or enjoying? However, by late morning those smiles would be replaced with a few tears and a lot of frustration. Still more surprising would be the end of the week. It would bring more love and support than a crusader ever could have imagined. (more…)
By: Katia (blogger for Commemoi.ca – the French version of Someonelikeme.ca)
On October 18th and 19th, I was lucky enough to be offered a unique volunteering opportunity in Montreal. I represented F.U.MS, the foundation started by Billy Talent’s drummer, Aaron Solowoniuk, who himself lives with MS. Accompanied by my sister, my mandate was to sell F.U.MS t-shirts as well as distribute buttons for the MS Society’s www.someonelikeme.ca website. As fans of the band, we last saw them in Quebec City three years ago and were really excited for these Montreal concerts; we were going to have the chance to attend their concert, not once but twice, at the Metropolis!
In the end, our promotion of F.U.MS and www.someonelikeme.ca at the concerts created a lot of awareness. Young fans, when learning about Aaron’s condition, felt concerned. Back when I learned about it, I remember having a similar reaction: how can he have MS and drum in a band?? How did he make this work with the amount of energy that shows and tours must demand? I was immediately very impressed, but mostly inspired.
Thursday, October 17th, 2013 was NMO Patient Information Day here in Vancouver. I was invited to gave a presentation on the Health Mentors Program which went very well. There was alot of positive feedback.
My friend Nancy Reimer talked about being an advocate and organizing the first NMO 5 km walk/run (the first anywhere in the world!) this past May. She did a great job. When she talked about her 9 year old son’s battle with NMO, it brought me to tears. Little kids should not have to deal with life threatening illness!
Dr. Katja Van Hurle, from the Guthy-Jackson Foundation spoke about the work the foundation is doing. It’s easy to see from her energy and enthusiasm that she is such an asset to the foundation. Listening to what she had to say, it was impossible not to feel hopeful and encouraged about the progress the foundation is making. I hope to be able to attend GJF’s NMO Day in San Diego next year to connect with the larger NMO community in person.
The MS Society Lower Mainland Chapter also did a presentation on the support services they offer. Since the Guthy-Jackson Foundation is based in the US, the Canadian MS Society has kindly offered to take NMO patients under their wing and offer all their services to us as well.
I got a nice surprise when they were showing their slides. There, up at the top left of each one was one of my photographs! This particular photograph has been used on the cover of the Peer Support information pamphlet and now as part of their slide show header!
A big part of who I am is the fact that I am a university student. Especially since I live on residence, work three different positions on campus and I’m a full-time student, my university career is my entire life. I even want to work in higher education when I’m older.
However, at the beginning of my journey of living with MS, I didn’t know if that was in the cards for me. I knew I had to avoid stress, but I live off being busy. I call myself a professional busy bee. So how was I supposed to avoid stress, while maintaining the lifestyle I loved and thrived off of?
My philosophy on student leadership needed to be change. Now it is one that has been touted by many: You’re a person first, a student second, and a leader after. I can only be a student leader, and involved in so many things if I’m a student, and I’m putting my academics first. So that needs to be the focus after I’m making sure to take care of myself.
Billy Talent was here in Vancouver the last two nights, playing concerts at the Commodore. Loribelle and I were invited to come and help Aaron out by manning his F.U.MS booth. We had a great time meeting Aaron’s fans, sharing information about someonelikeme.ca and letting them know about Aaron’s new “Ask Aaron” section in the forum, as well as selling t-shirts to help raise funds for the Canadian MS Society. We did a lot of tweeting and even gave away a signed copy of their latest album to one lucky couple who saw the tweet to be the first to visit the F.U.MS booth to win it.
Last night Aaron came to meet Loribelle, her husband and I before the doors opened. It was nice to finally put a face to a name, after all this time. We had the chance to chat and I gave Aaron an NMO awareness bracelet, which he immediately put on. He very kindly asked us which of the band’s t-shirts we would like to have and then took them and had them signed by the entire band.
Loribelle and I had also never met before, so doing this volunteer gig was the first time we’ve crossed paths. It was great hanging out and getting to know her and I am sure we’ll get together the next time she’s in town.
THANK YOU Aaron for the opportunity to help out. Have a great time on the European leg of your tour!
So last week I was asked to stay late at work, no problem, I said. 4:50 rolled around and only then did I remember that I was supposed to meet a friend for dinner at 5pm. .. ugggh! This is the 2nd time in a month that I’ve done this!
One symptom of MS that never seems to leave me is the cognitive problems, difficulties with attention/ distractions and particularly memory concerns. At times it is embarrassing, especially when I can’t remember a name of someone I’ve met several times, or forget a dinner date! At other times it’s really frustrating and difficult.
I know that many others also experience the same thing. Over the years I’ve learned to make lists, use a calendar and try mnemonic devices. The best strategy I’ve found is to use a smart phone. I finally caved and bought a smart phone this summer. I got it strictly for other reasons and never thought it would help manage my life and be such a great memory tool, but it is. I love that it has everything I need, notes, calendar, and multiple alarms for reminders in one small package. It definitely is nice not carrying an agenda around everywhere. Now the trick is to check the calendar before making additional commitments so I don’t double book myself!
If any of you have any other creative memory tricks maybe you could leave a comment here! I know I could use them, and I’m sure others could too!
Yep we have only been living here a year, but time for an expansion … “by 2 feet” :) Yep that’s right, come January 2014 my husband and I will be expecting our 1st little baby to arrive!
If you think people have opinions about MS or ANY other illness/treatment you use, wait until you are planning on having a baby or are pregnant, then the questions REALLY come.
a) Are you sure you can get pregnant?
b) Are you sure you’re going to be able to look after a baby?
c) What if you’re tired all the time?
d) What if your MS flares up and you end up in a wheelchair with a baby?
e) What if both you and baby get sick and your husband is left to take care of you?
f) What if your MS doesn’t go into remission when you’re pregnant and you have a flare up?
g) Will you go off drugs before you get pregnant?
h) What if you get sick off your medication?
i) How will you live with yourself if you don’t get back to “normal” post baby?
You can see the pattern it goes in, all valid questions, but good thing there aren’t 50 letters in the alphabet or I was in for A LOT of questions!
I will summarize all these questions with ONE answer … “I don’t know, now be happy for me”.
The Ask Aaron section will be open this Oct 28th! Please feel free to stop in and ask any questions you have about being a young person living with MS. I’m really looking forward to this.
MS Society note: Aaron Solowoniuk is the MS Society youth ambassador and the drummer for the band Billy Talent. The ‘Ask Aaron’ section will be found in the forum.
A few weeks ago, the Vancouver International Film Festival (VIFF) screened a documentary that I wish everyone could see called When I Walk by Jason DaSilva, a graduate of Emily Carr University of Art & Design, right here in Vancouver.
Jason is a young filmmaker who decided to turn his camera on himself to document his transformation from able-bodied to a person living with a disability. It is a stunning piece of work.
In the first few minutes of the film, you see how totally by accident Jason captured the first real sign that something was terribly wrong with his body. He’s standing on a sandy beach while on vacation and falls down and then no matter how hard he struggles, cannot stand up. His friends come to help get him upright again but once they let go, Jason immediately crumples to the ground again. Stunned, my friend (who has MS) and I turned to one another and mouthed the word “WOW!” at each other. I cannot adequately express how deeply this opening sequence impacted us, knowing what we know about demyelinating diseases.