Secure your own oxygen mask first: Living with MS

Guest post by Samara Bleiwas, who says living with MS means learning to secure your own oxygen mask first. 

I’m a mom, wife, business owner and a volunteer – things don’t just stop when you receive a diagnosis of multiple sclerosis. What’s most challenging for me is that I never fully gained my vision back – my right eye is at about 30 percent, and what I see is equivalent to watching a blurry black and white movie. Most people get their vision back within three months, but after almost two years, I’m resigned to the fact that my vision will remain the same. I’m just a little bit more cautious when crossing the street and driving. It’s amazing how I got used to limited vision, and my brain just adjusted to my new normal.

Two summers ago, I woke up at the cottage and took my kids to camp with my sister. While we were out, my eye started bothering me. I thought I must have put my contact lens in wrong. Over the course of the weekend, my vision seemed worse. I went to see my optometrist first thing Monday morning. He took a look and said that there was nothing wrong with my eye, but I still couldn’t see anything. That same day, I went to the ophthalmology department at St. Mike’s where it was confirmed that I did not have a problem with my eye. I was admitted to the ER immediately. The doctor who was on call that day said it could be a few things – one of them being multiple sclerosis. I knew very little about MS and my first reaction was to envision myself in a wheelchair and unable to live my life to the fullest. Three weeks later, I was diagnosed with MS.

I like to think that I’m a positive person. I’m young, I workout, and lead a healthy and active life. I remember thinking what is happening to my body? I felt like I had no control over what might happen. My neurologist was hopeful and assured me that we’d be able to look back on my diagnosis as no big deal. Living with the unknown is very overwhelming. Some days I allow myself to go there, to THAT place – but I try to remind myself that we all live with the unknown in some regard.

The way that people experience MS is so individual, it’s like a fingerprint – each case is unique. My advice for those living with MS is to remember to take care of yourself first – just like when you’re on an airplane, you need to put your oxygen mask on first. Although I tire easily, I make sure to still do the things that I enjoy doing, and that make me feel good. I love being with my family and friends, working out, spinning and doing Pilates. When I feel tired I rest, and if I’m too tired to get dinner on the table, I order pizza. With three boys, Jack 9, and Ryan and Max who will be 7 in May, life can sometimes get busy but I make sure to take the time I need to feel well, and keep them well. I have a huge support network and I’m grateful for my supportive husband Mark, my kids, my family, and friends. I’m appreciative of my health and I’m thankful for it everyday.

Project Give Back is one of my passions. It’s s a year long program where teachers go into classrooms and teach children about the importance of giving back to their communities and finding their passion. Children choose a charity that is close to their hearts and they have to write a speech, create a display and organize a “Funraiser” that is related to their charity. I provided the students in my class with an example by doing a presentation on MS. It included activities where the children had to put on glasses with Vaseline smeared on the lenses, and wear an eyepatch and try to do a simple task. I love being a part of this special project and seeing how children are inspired to make a difference.

When I was first diagnosed, we didn’t tell our boys, but last year as we began raising more and more money for MS Walk, I knew people were going to start talking about my MS in front of them. When Mark and I told the kids that I had MS, I didn’t say “multiple sclerosis” because it can sound really scary, but we explained that this is why I can’t see out of my eye, and why I take a pill at breakfast and dinner. They took it really well, and asked if they could go back to playing in the basement, which is exactly what I wanted to hear.

Last year was my first MS Walk. I personally raised around $25,000 and our team raised over $60,000. Initially, my husband and I were planning on walking together with our boys, but when I sent an email out to my family and friends asking for donations, they wanted to come support us at the event. I was surprised at the response when I shared our fundraising page on Facebook.  We received over $1,000 in donations within an hour and thousands of dollars overnight – I really don’t know how it happened. Our story was shared, and we ended up being the top fundraising team and had a great time walking with our 70 teammates.

I own a sports clothing company called The Teeshirt Mafia.  Last year, we created a limited release shirt for our team to wear on the big day and people loved them! The Teeshirt Mafia has just released a new t-shirt where proceeds from the sale of the t-shirt will go towards fundraising for Team Bleiwas. Walk day is a very special day, and a great way to give back to the community. I’m inspired by others personal MS stories, and I hope they are inspired by mine. My goal is to turn my lemons into lemonade. If I can turn my diagnosis into a way to inspire others to give, then there is a silver lining. On a broader scope, every dollar raised is another dollar going towards MS research and a cure. I’m doing what I can to help end MS in Canada. The MS Walk is one way I am fighting against this disease, and on walk day, surrounded by family and friends, it’s moving to see I am not in this fight alone.