We have very few occasions in life to be truly inspired so getting to spend time with Notre Dame Women's Head Basketball coach Muffet McGraw and her amazing staff and players was truly a once in a lifetime opportunity. On Friday my daughter, two granddaughters and I drove over to Notre Dame where our 6 ft. 7 in. niece Sedona Prince is being recruited. After touring the beautiful campus, we were invited over to Coach McGraw's home for dinner, team building games and what turned out to be lots of laughs. What thrilled me most about the evening other than seeing Sedona so happy was to witness the actual moment when my granddaughters got to meet a coaching legend and one of the most influential feminists of our time. It may not sink in until they are older but having strong female role models who make no apologies for being successful at what they do will inform them for years to come of the importance of following their dreams in life. My sincere wish for them as they grow up in this male dominated world we live in now is that they are inspired to go after all their goals in life while never, ever feeling inferior to their male counterparts.
I’m siting here at Metro Imfusion getting my yearly dose of steroids. I don’t love the bad headache and sleepless nights that always come along with this 3 day dose of powerful medicine but I really appreciate the extra energy that accompanies it. I have to go off the disease modifying medication Ocrevus that I’ve been on for almost 2 years so as much as I dislike steroids, I’m out of other treatment options. Life is not slowing down so neither can I.
With Father's Day weekend approaching I can't help but think about my own Dad who's been gone for 19 years now. I had only been diagnosed with MS for a short time when he passed but he was devastated when I initially shared the news with him as most fathers would be. Like many of us 22 years ago, my Dad's only point of reference for someone having MS was Annette Funicello who was wheelchair bound by the time I was diagnosed. I think my Dad would be proud of the way I've navigated this disease over the years but as much as I miss him, I'm relieved that he doesn't have to see me on my bad days now. As a parent of young adults myself, I can only imagine the frustration and helplessness he would probably feel by not being able to "fix me." My Dad died suddenly of a heart attack but I often wonder if his cause of death wasn't really a broken heart from witnessing his oldest child battle a baffling illness which there was and still is no cure for.
Breathing should be something that comes naturally but we all forget how especially when we're stressed. When I'm pushing myself in physical therapy or even working hard at the gym, I find that a quick reminder to breathe makes whatever exercise I'm attempting easier to accomplish but at home there's no one to call me out for not breathing properly. This is exactly why I've found meditation so incredibly helpful in starting my day off on the right foot. Anxiety can be debilitating for me at times but simply taking slow, measured breathes can instantly lower my heart rate while putting everything in perspective. There are so many really effective meditations at our fingertips but I really enjoy the soothing voice of Deepak Chopra. Even though it should be a no brainer, don't take breathing for granted like I did for way too long.
After years of experiencing "invisible" symptoms of MS the good news is that I no longer have to deal with the dirty looks and nasty comments that came my way when I chose to use my handicap sticker outside a restaurant, store or any other destination. There were plenty of days where I might have felt strong enough to get into a place but knew that exhaustion could come on fast and getting back out to the car would be challenging. I will never forget the time that my oldest daughter and I parked outside a movie theatre and a rather nasty man confronted us about parking in disabled parking. I was already used to these kind of comments by then but my daughter went into full-on attack mode, fiercely protective and keenly aware of my daily struggles. The bad news is that scenario rarely happens these days as I am obviously disabled but as a public service announcement, I want to remind readers not to be so quick to judge another person because you never know what they are dealing with. Funnel that concern you have that someone might be cheating the system into more productive action like volunteering with organizations that help the disabled or elderly.
Hello World. This is a blog we created to give any one affected by MS in any way a constructive way to communicate with others going through the same challenges.