Matt Cavallo on having tough family conversations about Multiple Sclerosis

Hard Family Conversations and MS – MSAA ReBlog

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**Originally posted by Matt Cavallo on MSAA Conversations on 2-11-2015 at http://blog.mymsaa.org/hard-family-conversations-and-ms/**

Me and my Auntie

Me and my Aunt Angie, Loretta’s older sister, December 2015

During my initial hospital stay and subsequent diagnosis of MS, one of the biggest challenges that I faced was talking to my family. We had a history of multiple sclerosis in my family. My dad’s sister, Loretta, was diagnosed with MS in the 70’s and she passed away in 1981 due to complications of the disease. During that time, there was little in the way of treatment available to help her. Not only that, but the disease progressed very quickly. She passed when I was only four, but I still can remember her. She was in a wheelchair and she couldn’t talk, she could only mumble and moan.

While I was laying in my hospital bed contemplating my diagnosis, I was thinking that I shared the same fate as my Aunt Loretta. The whispers around my bed from my family members supported my fears. As a result of these fears, the conversations changed. Family members started treating me differently. They were walking on eggshells around me, careful not to divulge any of their true fears of my future. Even with treatment, as my functionality returned, everyone held their breath for MS to strike again.

Six months later I had another drastic exacerbation. Then, twelve months after that another one. It seemed like I was following Aunt Loretta down a perilous track. And my family treated me that way. It was to the point where I didn’t want to have conversations with them because I wanted them to remember the person I was and not the person I had become with MS.

However, there were a couple of things I had going for me that my aunt didn’t have. One was timing. In 2005 there was a lot more knowledge about the disease and many more treatment options available than when she had it in the 70s. The second thing was history. I knew my Aunt Loretta’s story and I didn’t want mine to end the same way. Family members told me that she didn’t like the advice she received from a doctor, so she never went back to that doctor. I used that information to motivate myself to learn as much as I could no matter if the news was good or bad, scary or hopeful. I just wanted to get the most objective, up-to-date information available to fight. Lastly, I had hope. In the seventies there was little known about the disease. Today, there is research and scientific breakthroughs, social support networks, and hope.

If I could go back in time with all I know today about living with multiple sclerosis, the fear and egg-shell conversations with my family would be dramatically different. I would use the resources around me, like My MS Journey, to educate myself and ease my family’s fears instead of staying silent.

Today my family conversations are no longer about the horrors of MS. My family and I now talk about my future and my kids and all of the awesome stuff that normal people talk to their family about. Today we are a normal family and I just happen to carry the torch of multiple sclerosis. I have had it for approaching ten years now and I am still working, playing, being a dad and living the life I always wanted to live. That makes me proud to talk about my MS journey and how I have lived a great life despite my diagnosis.

Resource:
http://mymsaa.org/journey/

One thought on “Hard Family Conversations and MS – MSAA ReBlog

  1. Hi Matt,
    This is my first time on your blog 🙂 I also live with MS. Like you, I live my life despite the diagnosis. MS stops me only when my body won’t allow me to keep going, otherwise my mind is on living.
    It must have been awful for you in the moment of diagnosis, to remember what it was like for your aunt. I don’t have a family member with MS but I worked in a support centre for people with disabilities for about five months after I graduated. I spent a lot of time with a lady with MS. She had a rapid progression. A year after diagnosis she was in a wheelchair, unable to feed herself, had a catheter fitted and her husband had to hoist her in and out of bed. That was my first image when I was diagnosed, so I understand what that’s like. Since I couldn’t walk at the time of diagnosis, it made it worse. Now, I walk and make the most of every step. I appreciate the good of the moment and live in the present.
    When i was diagnosed, my Mum had just started chemo. I was staying with my parents to support them and I ended up in hospital diagnosed with MS! My first thought was, “how on earth am I going to tell my parents this news?!” I was more worried about their response and their pain at that moment. Family reactions can be a significant stress after receiving a horrible diagnosis I think.
    Anyway, great to meet you and I look forward to reading more of your blog, Rachel

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