May is ALS Awareness Month and I think we can all agree that SunnyStrong gave it everything we had.
The ALS Association used the theme of “Raise Your Voice” for this year. There are many things that ALS has taken away from me, but my voice is loud and persistent in the fight to end this disease. We learned at conference about exciting technology that is coming so that even after I lose my voice, I’ll be able to have a replica downloaded to my devices. This means that for as long as I am able, I will raise my voice in the fight for those that no longer can. This is much, much bigger than me, bigger than SunnyStrong.
I recently made a friend at clinic named Matthew Campbell and he shared this with me:
“Sunny, please ask our congress people to take great consideration of people with ALS and our lack of ability to contact 911, when I am in sling and if my wife were to fall I would be completely unable to call 911 local. I don’t know what a good product to have would be. Amazon echo will not call 911 yet. I still have my voice, so echo would work but if power were out echo will not work. I can only use my cell phone when in wheelchair at kitchen table. my hands barely can operate phone at table.”
This is a real problem, how can help come if you can’t call for them? This is just one of many, many examples of how this disease destroys lives, destroys families. I’ve been given a powerful platform to utilize and focus my efforts towards, for those who can’t advocate for themselves, for my future with this disease, for Kenneth as he watches his wife deteriorate.
This has been an exceptionally difficult month for me. I’ve shared with you my struggles with depression and anxiety. I’ve shared with you my heartache for the friends I’ve lost to this horrible disease. Bringing awareness to ALS forces me out of my “blissfully ignorant” hiding and into the reality of this disease, what it has taken from me already and what I still have to lose. I share these struggles as a choice, as many choose to fight silently, and as a motivation for you, for me, for all of us to live our best life. I have no doubt that I’m exactly where God wants me, and putting my pain into a purpose is so much more “Sunny” rather than a constant pity party.
I told you at the beginning of the month that my hearts desire is to live in a world without ALS. Faith is what gets me out of bed every day. Faith is what got me on that 6AM flight to DC. Y’all are what fuel my fire to fight, to keep the faith, and to continue to advocate for those who no longer can. So thank you for a great month, for your encouragement, for buying raffle tickets and shirts, for hugging and loving me through this journey.