At the age of 30, Gaby Mammone was diagnosed with multiple sclerosis (MS). Now, almost 17 years later, she’s an ambassador with the MS Society of Canada and has learned to lead her life with kindness and to find the positives in everyday life.
Tell us a little bit about yourself, your health journey, and your diagnosis.
I’m a mom of two beautiful kids. I’m self-employed and run a company that supports charities and non-profit groups. Everything that I do is very heart-centred, philanthropic, and focused on human-to-human connection. As I’m a very passionate person, I’m a voice for equity, accessibility, diversity, and inclusion.
In terms of my journey with MS, I noticed when I was in my 20s that I was having symptoms. I didn’t know what they were at the time. I was diagnosed when I was 30 and I’ve been living with MS for almost 17 years. I’m now in relapsing-remitting multiple sclerosis (RRMS) and feel lots of gratitude. I’m grateful because as awful as MS is, the disease has altered my life tremendously. I’m grateful because it’s also opened doors. I think that I’m where I am today because of MS. I’m a voice for people with disabilities because of MS. I feel like MS has brought me more than it’s taken away, as odd as that might sound. Having said that, living with MS is hard. Every day I have symptoms. Some days I have tingling in my hands or my feet, or extreme lethargy. I also often get itching and it’s not your typical itch, it’s like someone’s pouring millions of bugs all over me. It’s an awful feeling. I have incontinence and sometimes I lose my sight in my peripheral vision. I also have swallowing issues, and sometimes I’m challenged cognitively. It’s not a cookie-cutter disease, which means it’s different for everybody.
From the time you were diagnosed up until now, how have your symptoms progressed? Have you developed any new symptoms?
For sure it’s progressed. When I was in my 20s, I was falling a lot. Back in those days we were having fun going out and when we’d go to a bar, sometimes I’d fall because I had balance issues. The bouncer would think that I was drunk, but I don’t even drink!
I didn’t know back then but we were going through the process of evoked potentials, spinal taps, MRIs, and all the tests that are needed to diagnose MS. When I was diagnosed, it was hard for me because I was engaged at the time and I was afraid that I wouldn’t be able to get married. I was afraid that I wouldn’t be promoted at work. I was nervous that my life would be drastically different from what I was used to. I admit that I kept it silent for five years. I told my immediate family and of course my fiancé at the time (he married me by the way!), but that was it. I didn’t tell my employer or my friends. I’m not saying that it was a good decision. I’m saying that I know why I made the decision. If I could turn back time, I would’ve opened up sooner, because keeping it inside was this massive burden that I was carrying. I wasn’t proud of who I was. I wasn’t being honest with my employer at the time as to why I was late for work, saying that there was traffic when meanwhile I couldn’t stand up, but I was embarrassed to say that. But then came the day that I needed to open up and I was relieved of this burden that I had been carrying. To my surprise, my employer was very supportive — in fact, he was upset that I hadn’t told him sooner. They made some workplace accommodations so that I could be closer to the bathroom to help me with my incontinence, and I got some flexible hours so that I could get my work done on my own terms, when I was physically and mentally able to do it. My diagnosis didn’t hinder me from moving forward in my career. I was able to manage a career, although it became more difficult once I had my first child because being a new mom without a rule book and having to deal with my symptoms was very hard. Fortunately, I had support from my family, which was helpful. I really needed that support because with lack of sleep, my symptoms could exacerbate. I also started getting this new symptom of dysphagia, which is when you can’t swallow properly. It’s scary because you can’t eat or drink water without having problems. This symptom was a rude awakening for me because I could limp, I could live without vision, but not being able to talk or eat or swallow brought my fear to a whole new level in life.
With time, I learned how to practise self-care and how to reduce my stress and anxiety. When I focused on that and when I was in the right mindset, it really helped me. I think what also helped me manage my symptoms was giving back. What I mean by that is that the act of kindness isn’t new — you give, and you get. If I can impact people with my voice or with my actions, then I truly believe that it’s also helping me. I started feeling better by just giving without expecting anything in return. I then realized that I was dealt these cards for a reason. It wasn’t to feel sorry for myself and to jump on that pity bandwagon of thinking, “Why me?” It’s actually, “Why not me?” I still have symptoms and they’re still hard to manage, but I don’t know life any other way. I don’t complain about my symptoms. I manage my life around my symptoms. And I think when someone can shift their mind, their life will be truly fulfilled as mine has been.
What’s the biggest misconception about MS?
There are many. Some people think that all people with MS will end up in a wheelchair or scooter – that’s not the case. There are different stages of MS. The first stage of MS is relapsing-remitting multiple sclerosis. People in this stage do have nerve damage but it doesn’t mean they will progress to the second stage (secondary progressive MS). We don’t know if or when that could happen as it’s very hard to detect. But that also doesn’t mean that those who are in a wheelchair or scooter have lost their life. Their life has been altered, not shortened. We really must focus on the positives. In my case, it turns out that I’m still walking — even though science says that I should be in a wheelchair. Granted, it’s not always easy.
The second misconception is that people living with MS can’t have kids — we can still have kids! We can still be great parents and we can still make an impact in society and within our family. We just have to make the best of the situation that we’re in.
What advice would you give to Canadians who have recently been diagnosed with MS or who have a loved one who has recently been diagnosed?
Be informed. Align yourself with knowledge and resources such as other people who have MS, group forums, blogs, the MS Society of Canada, and so on. There are so many more resources people can access.
It’s OK if people don’t ask you how you’re feeling, because it’s our job to educate. When you’re ready, it’s OK to talk about it, but please don’t be offended if people don’t ask you. At times, it can be uncomfortable for people to ask because they don’t know what to say, and that’s fine! It’s our job to learn about it and talk about it when we’re ready.
Being diagnosed with MS isn’t a life sentence. In the most bizarre way, having MS is a gift. It’ll allow you to open up your mind and appreciate things from a different perspective. I can’t say that I appreciated waking up in the morning and being able to walk before my diagnosis, but now when I put my feet on the ground, I do a check and ask myself, “How do I feel, can I stand up slowly? Is today going to be a day where my knees are spastic?” It’s important for me to check in with myself and be grateful for the days that I can walk properly. Living with MS will enlighten your senses to truly appreciate life more than ever before.
Please try to find the positives in everything that you do. We all have something to be grateful for. It’s very important when you’re not feeling well or you have a symptom or you’re going through exasperation or an attack to truly think about something that you love. It’s really about identifying ways that you can feel better. Everyone has something to be grateful for, so find it and focus on it!
The MS Society has been integral to my healing. There are all kinds of beautiful events that they have — fundraiser events, awareness events — and I’ve been involved in as many as I possibly can. I love being a part of these events because it allows me to meet other people who are caregivers, who have been affected, and who are living with MS. It’s great because you can talk to people who can really relate to what you’re going through.
The MS Society also has amazing chapters with amazing individuals who work there, and you can chat with someone if you want to ask a question or just need someone to talk to for advice, referrals, or whatever’s on your mind. I really recommend that if someone gets involved with the MS Society, they reach out to their local chapter.