“I look at the human life like an experiment. Every new moment, every new experience, tragic or otherwise, is an opportunity to gain a more accurate perspective and helps lead me to clarity.” – Steve Gleason

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May is ALS awareness month. May is Mental Health Awareness month. May is also Cystic Fibrosis, Lupus, Arthritis, Hepatitis Awareness month … and many more.

Earlier today I posted on Facebook and Instagram about ALS TDI’s campaign “Ask me about ALS”. It’s amazing idea, but most people who are on my “friends” list have seen me posting about ALS for years. They know I am available at any point to talk about and give information about the brutal disease. I assume people in my circle are inundated with information about ALS. The facts and stats are things most of these people have heard, seen and know, they supported me through Duane’s battle, they learned as we learned. So if I post on my platform where does the information go? I am not educating anyone new. 

So instead of just talking and sharing about ALS I opened it up. Ask me about caregiving, death and grief. Ask me about what caring for you dying husband does to your mental state. Ask me what caregiving does to your body, your energy, your health. Ask me what death does to family dynamics. Ask me what telling people you are a young widow is like. Ask me about people’s judgment. Ask me about hospice. Ask me what death looks like, what it feels like to observe it. Ask me what grief is like. Ask me anything. I am an open book. I want to help educate you on anything I can.

Yes, May is ALS awareness month, but there is so much more to ALS than the disease. Ask me about the love. Ask me about the beauty in holding someone’s hand to help calm them. Ask me about the sitting in silence and being at peace. 

For the last few years I have had people contact me weekly asking about ALS, about caregiving, about death. After my post tonight new people contacted me, with questions and their stories. I love hearing them, I love talking to you. I love helping.

I am always here to answer your questions – not just in May.

– xoxo Victoria

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One thought on ““I look at the human life like an experiment. Every new moment, every new experience, tragic or otherwise, is an opportunity to gain a more accurate perspective and helps lead me to clarity.” – Steve Gleason

  1. Victoria you are so brave and strong – although I hate that phrase, everyone says that – but it is true, even if at times you want to scream “I am a grieving young widow who has gone through a nightmare no one can imagine!” But your love, compassion, humor, and willingness to share not only your story – but also your heart is a blessing to so many people!! Thank you for being a voice for so many – although I know it is not the role you envisioned for your life. You are a wonderful woman

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