My Whole Expanse I Cannot See…

I formulate infinity stored deep inside of me…

Jun 25

I was on The Last Word!

Category: Life

So, on Thursday I posted a tweet after watching folks on MSNBC talk about how Trumpcare is basically going to DESTROY Medicaid, mentioning who would be affected by the cuts… everybody but people with disabilities. Even after the brutal video showing disabled protesters being dragged from Mitch McConnell’s office, we still weren’t getting much coverage. I posted my tweet, and it FLEW! Rachel Maddow did a story on the protesters, a really spectacular story, and my tweet REALLY FLEW. Then, it was Friday, trach day.

Now, I never sleep a wink the night before trach day, so I’m pretty beat before the fun even starts, and the fun started much later than usual. I didn’t get into the O.R.  until after 4pm. It was actually just as we were headed to the O.R. that my mom got a phone call from a producer from MSNBC… Apparently, somehow, we got invited to talk about the Medicaid disaster on one of my absolute favorite shows; The Last Word with Lawrence O’Donnell (though, Friday night, the equally badass Ari Melber had the helm). I really don’t know how much my tweet had to do with anything, there’s a lot of behind-the-scenes stuff I’m fuzzy on, but nevertheless, I was on The Last Word!

I ended up having to have two trach changes, as the first one didn’t take, so I didn’t get out of recovery, out of the hospital, and back to the house until after 7pm. Normally on trach day, I’d eat a little something, take some more pain medicine, an Ativan, and check out for awhile. Friday was extra trying because of the double traches, but I wasn’t going to miss The Last Word. A little juice, Ativan, some medicine after we got to the studio just shy of 9pm, everything was running as smoothly as my Apple Watch. Except… I totally hadn’t written what I was going to say to Ari. Fortunately, words always come to me when the chips are down, I finished typing with, like, fifteen minutes to spare. I simply wanted to convey that we all have hopes and dreams, and though none of our hearts’ desires are guaranteed, the Founding Fathers gave everyone who participates in the beautiful American experiment the right to be free to pursue their happiness. I hope I used the right words.

At any rate, locking people with disabilities away in institutions destroys  the image of America as the Shining City on a Hill.

Being on The Last Word was one of the Top Seven coolest experiences of my really, really, really unusual totally usual life.

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35 comments

35 Comments so far

  1. Shawn June 25th, 2017 12:56 pm

    You wrote that statement on the fly?!?!? Wow. You are an even better writer than I thought. It was magnificent. I hope some of the people in power saw it. It could create the tipping point in our favor.

  2. Georgette June 25th, 2017 1:02 pm

    You had quite a day! You did an awesome job representing all who’s lives will be effected in such a devastating way, by the cuts that will be made. Thank you for continuing this fight for the rights to health and happiness!

  3. Kim June 25th, 2017 1:29 pm

    They were all the best words, Michael! Thanks for sharing some of the happy parts of your life and reminding us how we all want the same things whatever different forms they take. So inspiring!

  4. Molly Watson June 25th, 2017 2:12 pm

    You were incredible, Michael. My mom and I watched together and we just sat there kind of stunned at the end of the segment, in silence (unusual for us). We knew we had just witnessed greatness.. Thank you for sharing your story so bravely. And for going into rapid response mode after your tweet took off! All of that on a double trach day?? You and your mom are an inspiration to us all! Thank you!!!

  5. Johnny Johnson June 25th, 2017 4:02 pm

    Micheal you were fantastic on The Last Word that is one of my favorite shows. I’m a retired Respiratory Therapist so I know what you went through with a double trach. You are a very brave and inspirational. Micheal you are strong remain focused and continue to inspire others like yourself. I hope the politicians saw you on The Last Word and change their votes and save Medicaid save and improve the ACA (Obamacare). May God continue to guide, protect and bless you and your mother.

  6. Ari Melber June 25th, 2017 4:14 pm

    Mike, As we discussed, I’m so thankful you joined us and shared your story — I think you used the right words. And now I know you picked them right off the top of your head, wow. All best, Ari

  7. Susa June 25th, 2017 4:53 pm

    Ditto to everything said already. You did a great job. Your mom did a great job. It was powerful. I hope that Senators Murkowski, Capito, Portman and others saw you and it hit a nerve — a No on the senate healthcare blll nerve. Best, Susan, DREDF

  8. Rhonda N Polinsky June 25th, 2017 5:03 pm

    Dear Mike,

    How can a mere mortal tell you how much your being on The Last Word meant to me, and so many of your new devotees. You make me feel humble just listening to your words. I have enlisted everyone I know to call, repeatedly, our senators to voice our utter dismay and heartless Ness in their health bill. Fight on.

  9. Christine Queen June 25th, 2017 6:59 pm

    Aloha, Mike,
    My husband and I watched your eloquent statement and were very, very impressed and moved by your story. We were both choked up, as well, as was Ari. Trump could never express himself so beautifully, not even in his dreams! I emailed the link to that segment of The Last Word to my Senators and asked if they could have it shown in the Senate. I hope that’s possible. I also wrote a diary at Daily Kos to encourage others to write to their Senators and attach the link. You are a warrior for all disabled Americans and for Medicaid in general. Mahalo nui loa, and we send all our best wishes and aloha (which also means “love” in Hawaiian, besides “hello” and “goodbye”).

  10. Sharlene White June 25th, 2017 7:12 pm

    Michael, you are amazing!! You not only picked the perfect words to say, you also made THE statement that needed to be made regarding this horrible attempt to undermine our health care in order to give the wealthiest bigger tax breaks. MSNBC should use this segment as an ad to speak out against the inhumane Republican-sponsored Trumpcare bill. You are my hero!

  11. Denise June 25th, 2017 7:14 pm

    I couldn’t have come up with that much eloquence & heart with humor if I had had a week! You have a brilliant writing future! Write a book! Your mom was fantastic, too!! I also love The Last Word; & I love both Lawrence & Ari!! I bet you will hear comments from Lawrence, too! Your words should echo through Congress next week! Much love & support!

  12. Janell Pense June 25th, 2017 7:29 pm

    Hi Mike! What a blessing you are to this world – you touched my heart with your eloquent words. You are my hero and I’m so thankful to know you! God Bless you and your family – what an amazing mom you have, you could tell how proud she is of you. You have made my heart bigger and my life better and I’m sending lots of love and prayers and hugs this day and every day!! #yay

  13. Kathleen June 25th, 2017 7:42 pm

    You are an inspiring human,Sir! My mom and I watched the show on Friday. If what you said doesn’t change hearts and minds, nothing will!! wishing you all the best and, keep writing.
    p.s. “Mom”, you’re pretty awesome as well – take care!!

  14. Marie June 25th, 2017 7:42 pm

    Mike. I was so touched as your words touch my life and what is right and just. I have been disabled for 11 years now. A doctor that performed simple back surgery permanently caused me an incomplete spinal cord injury. It is an injury which causes me to live my life in continued horrible pain. I was astounded by your words. You are a beautiful writer. Thank you! I have been living in fear I may get on Medicaid and now I will want the opportunity to be allowed to get on Medicaid when I need to. And, as you can leafiness, I am scared I will be put out of my house and into an institution.
    I wish you well and better nights sleep. Best.

  15. Kathy June 25th, 2017 7:47 pm

    Mike, I watched your segment with Ari on The Last Word on Friday night. It was one of the most powerful things that I have ever seen on any TV show. I loved seeing you and your mother share your story. Thank you so much for sharing it, especially after such a long and trying day for you.

  16. Will H June 25th, 2017 7:52 pm

    Tears in my eyes when I saw your interview. Tears in my eyes as I read your blog. You are an incredible human being. Thank you for sharing your story and journey.

  17. Mary Campbell June 25th, 2017 8:09 pm

    Hello from Boston Mike. I missed the segment on Friday. Luckily I was able to watch the rerun last evening; love Last Word and Ari and now I Love Love you!! I too haven’t slept well since November 8th and have experienced so many new emotions. Listening to you speak so eloquently took my breath away. I need to believe that the Senate will do the right thing. The good people of this country must make their voices heard like you did and stop this madness. Thanks and God bless Mike. Mary

  18. Carolyn June 25th, 2017 8:26 pm

    Hello MIke, I was moved to tears by your story and your statement on The Last Word. You are such a strong person and beautiful soul. My heart goes out to you and your Mother. I am also a mother of 2 and I could not imagine being in a position of losing one of my boys to an institution, because of a heartless bill that only benefits the rich. I can not ever remember seeing a show host choking back tears before. Your story has touched so many Americans and I’m so glad you had the opportunity to be heard. I know your words resonate with many people and I thank you for your strength and courage. Keep up the fight and never stop believing. May your words go straight to God’s ears. Amen

  19. Megan June 25th, 2017 8:35 pm

    I saw you on The Last Word and your words moved me both to tears and to action. And to read all of what you went through leading up to it, you’re even more incredible. I am a disabled person and an auntie to two special needs nephews and I too have not been sleeping well since Nov. 8th. I’m also scared for all of us. But! I will do everything in my power to help keep you in your home where you want and deserve to be. Thank you for putting yourself out there in such a thoughtful and meaningful way. You’re awesome!!!! Megan in NH

  20. Patty Egbert June 25th, 2017 9:11 pm

    Hello Mike, I also watched with tears in my eyes! But what a pleasure to meet you and your mother. You have inspired me to speak up more loudly. I sometimes think my calls and e-mails don’t do any good and I get discouraged! But no more, I will continue to speak loudly! You have a great sense of humor! Your mom is such a fine human being. Love,Pat

  21. Kim June 25th, 2017 9:37 pm

    Thank you for sharing your story. Like others have said, you really have a gift with words.

  22. julie keegan June 25th, 2017 10:38 pm

    Mike, your honesty and openness about your situation is so touching. I’m sorry that as a country we have come to a point where you have to fight to get the proper health care. I’ve written my letters and making the phone calls. Praying that it helps…you and your mom deserve some peace of mind…julie in california

  23. Peg Haws June 25th, 2017 11:20 pm

    Amazing wordsmith on the fly! Well done. My son depends on you and others standing up for him so thank you. PS I am dying to know what the other “6 cool things” you’ve done in your pretty amazing life!

  24. Sarah June 26th, 2017 5:48 am

    Absolutely loved you and your mom on Lawrence. You’re an incredibly skilled and insightful writer and I’m so excited to see you have a blog. Thank you for sharing your perspective and talent. Looking forward to reading more of your work here.

  25. Jo Justis June 26th, 2017 11:38 am

    I saw your interview with Ari, and your words were so eloquent…to have written them on the fly blows my mind! Your creative, intelligent and humorous mind must be allowed to flourish and communicate to us all…It is a gift that so many people in power don’t have. please continue writing…you are an inspiration to all of us. God bless you young man. You are destined for great things, I know!

  26. Quoc Hung Nguyen June 26th, 2017 11:47 am

    Hello Mike.

    Ryan Gosling has spoken – YOU ARE THE ONE !

    I am so touched by the way you present your case. Mike – keep up the good work. You are an inspirational LEADER. Now go and fight for others, who can not speak the way you can.

    Sincerely
    QHN

  27. Duane Burright June 26th, 2017 4:45 pm

    Mike,

    I saw your interview on The Last Word on MSNBC and was blown away. Like you, I have Spinal Muscular Atrophy and have had quite a few sleepless nights since November 9th wondering “What happens now?”. Even though I am in California, I worry about the outcome if this passes since the disabled tend to slip through the cracks.

    Unfortunately we all know now since the Senate Bill is public – and unfortunately the outlook is pretty grim.

    The ADAPT protests are what got the disability issues into the public eye with media attention, your interview with Ari Melber gave this even more attention.

    My own Senators are Democrats and are opposed to Trumpcare. I hope that you, your mother and your friends have been pestering the hell out of Rubio.

    Let us hope that this monstrous plan doesn’t pass. I wish us all the luck we can get to get through this.

    Thank You again Mike – your interview got a lot of viewers. Let us all hope it’s enough to stop Trumpcare.

    Duane Burright

  28. Carol Underwood June 26th, 2017 4:47 pm

    My dear sweet Mike,I also watched the Lawrence show with tears in my eyes as you spoke to us about your life and how the Medicaid cuts will impact yourself and others who will suffer if this bill is passed. You are such a courageous and wonderful human being without a doubt.

  29. Holly McKenzie June 26th, 2017 7:33 pm

    Your story should be shared with every member of Congress in mandatory sessions!! You have accomplished more than most of of them who receive health care paid for by us, who are supposed to represent us, who work for us. I can’t imagine what you are going through, but I am proud of your strength and incredible family support. I am working as hard as I can making calls, sending tweets, etc. to the heartless people in Washington. It was very brave of you to go on The Last Word and speak to us, and I thank you for your activism.

  30. Holly McKenzie June 26th, 2017 7:46 pm

    Thank you for being so generous and opening yourself up to all of us on The Last Word with Ari Melber, who shed tears with us. Your story should be seen by everyone who wants to pass this heartless “healthcare” bill. They need to be reminded that they have healthcare because of us, that they work for us, and they do not deserve any better medical care than those of us who put them in office. I would suggest mandatory viewing for the entire GOP if you and your family would agree before this disastrous bill is passed. You have given more good to society than most of them ever will, and I thank you for the courage you have shown by fighting every day. Positive thoughts to you, your family, and everyone in need of quality healthcare.

  31. Duane Burright June 26th, 2017 11:01 pm

    Lawrence just gave you a shout out on tonight!

  32. Duane Burright June 26th, 2017 11:08 pm

    BTW – Ari Melber sent me here. He sent me the link to your blog.

  33. Sarah Heffernan June 26th, 2017 11:50 pm

    Dear Michael, My heart was touched by your eloquent self-advocacy on The Last Word. Your words brought tears to my eyes and my heart. And in reading your blog to learn you wrote your statement just minutes before the show aired, well, that just blew me away. You have a poet’s soul. I have taught and loved and learned from many students with physical limitations. I know how much being at home means to them, and I am heartbroken by the misguided path our leadership is taking which will undo progress in rights for individuals with special needs. Keep up the good fight! Your voice is needed! Sending some Reiki (hang in there with the trach)….. and a hug for you and your Mom. Namaste, Sarah

  34. Nina Grekin June 27th, 2017 2:24 pm

    Mike, you knocked it out of the park!
    What you said to Ari on the show was perfect.
    Thank you!!
    Nina

  35. TFCOCS June 30th, 2017 3:49 pm

    I caught your appearance on MSNBC last week, and I am curious: who is the model for your voice synthesizer? I like how you made him use an upper crust English accent; it makes everything sound “cultured” (think of that word using a Brooklyn accent!). Snoop Dawg once did the voice on my friend’s Garmin, and it was hilarious” “Turn Left Ne-PHEW!” But, I digress…

    That interview was great. Having a disability myself since I had a stroke at the age of two due to head trauma, I have been a poster child for the disabled rights movement for nearly half a century (literally!) I was one of the first people mainstreamed into the public school system when I was seven years old, when the Education for All Children Act (1974) was enacted. So, I can say I have walked the walk (pardon the pun). I can say, as an elder stateswoman in the disability community, that you are awesome. The fact that Ari Melber was so moved by your story that he was tearing up on screen was powerful. BUT….

    I have to confess. I had mixed feelings about that. I suspect he reacted that way because he may have never met anyone in the community with these challenges. But, that begs the question: why has he (likely) not had exposure to our people? We need to be even further out in the mainstream, and get “in peoples faces”. We need to be part of the scenery, and not “special guests” in the discussions about our own lives.

    Rock on!

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