 I was hoping to meet my goal of posting a new blog post at least once a month. With the month quickly drawing to a close, I didn’t expect this to be my catalyst. They cancelled my vaccine shot. Less than 24 hours before it was supposed to happen, I got an email saying it was cancelled. To say I was devastated is an understatement. It was their stupid screw up, but it dropped me to my knees. The hope that had finally begun to take root was ripped out from within me with what felt like wolverine claws.
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 I have heard several people say to me recently, “We haven’t heard much from you on Facebook this summer. I guess you were busy.” When I’m quiet that long, never assume I’m busy. I may not want to talk about it, but extended silence from me is never a good thing. I’d like to say it’s the old “if you don’t have something good to say” adage, but if I’m honest, it was so much more. Here is what happened in the silence.
 There has been a lot written these days about ways to cope with these difficult and uncharted times. I wrote my own hope based blog post about looking for the good in my previous post. http://hope4life180.com/blog/some-thoughts-on-covid-19-trauma-and-a-lesson-from-frozen-2
But as this drags on, it gets harder to look for and see the good because there is so much "suck" in the way. I thought I’d take the time to write again and share some of the experiences and lessons I learned as I dealt with my own loss of normal that was created by my long term illness. I think many of these might apply in our lives now when almost everyone has lost their sense of normal.  These are strange times indeed. They are times when choosing to not have the infusion that helps hold off irreversible decline in my body’s level of function due to my PPMS (Primary Progressive Multiple Sclerosis) is the choice I must make to help to keep me alive. They are times that took a quick trip to see my daughter's new house and pick up my camper to bring back to NH into an extended stay out of fear for what returning might do to my mom. A time when I must choose to leave my 87 year old mom alone to help keep her safe. It is a time of choices for everyone.
 Today is Rare Disease Day. February 29, 2020. Leap Day. It is a club I joined on September 11, 2016 when I was diagnosed with Transverse Myelitis, a rare condition that impacted my spine. I am currently working on a book for children to help them inderstand why I have my canes and sometime a wheelchair. I want to be able to answer the normal questions of childhood in a comfortable way with love. It has taken on a life of its own and become a celebration of disability and difference.
 Sometimes hope fails. There comes a time when the weight of life and the truth of reality become too heavy to carry. Even the heartiest of hope seekers can reach a point when they have to take off their battle amour, lie down and admit they are defeated. But it’s a lot easier to pretend you are strong than it is to admit your weaknesses. As a rule, being honest about the depths of our struggles makes those around us feel very uncomfortable. “You can do this” or “You’ve got this” may be said with the best of intentions, but truthfully, like many things, it is impossible to sustain.
  May 30th is World MS Awareness Day. Several weeks ago, the Grit team asked if anyone with MS would be willing to write about their experience with The Grit Freedom Chair. Today they shared the message I sent to them with the Grit family. I am humbled and honored. Here are the lessons I shared with them, that I learned from my Grit. They apply not only when I roll, but in life. May we all have a little Grit in our lives. Got Grit? Yes, I do! No, seriously. I literally have Grit. Or at least a Grit. A Grit is an All-Terrain Wheelchair designed by some guys from MIT using bike parts and levers to help those needing help with mobility access for the outdoors. I met my Grit in June of 2018, but my story began in the fall of 2016.
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