MND - what's your dream?

Following on from my last post, Bo Stern whose husband, Steve, is a long way down the journey of ALS/MND writes an inspirational blog, The Difference of Day and book Beautiful Battlefields, both crafted in the crucible of her own experience. Yesterday, Martin Luther King Jr Day, she posted this. I love that last paragraph: "I guess, I am not wishing you a quick way out of your battle: but I am believing for you and for me, that every square inch of our battleground will be redeemed. And on that ground, beauty will grow, wild and free."

"It’s been a tough couple of weeks on the ALS frontlines, and last night was especially hard, filled with breathing mask difficulties and some scary choking episodes into the wee hours. I’m sure every serious illness comes with problems for which there are no solutions, but ALS seems to specialize in them. 

I often feel helpless and useless, sitting beside Steve while he chokes and tries to find his way back to regular breathing (and then apologizes for keeping me awake). This morning, my facebook newsfeed is filled with tributes to another friend, lost to this battle. We are expecting to say farewell to several more within the next few weeks. And sometimes it seems we’re no closer to finding a cure than we are to achieving Lou Gehrig’s batting average (.343!)

But today I am home from work because it’s Martin Luther King, Jr. day. And, though I know we still have far to go in achieving true racial reconciliation and equality, I wonder if, in his lifetime, he could ever have imagined that his name would be attached to a national holiday. As he fought on the front lines of racism and segregation, how could he have known how significantly he would help to alter the course of history? He just did the work. And he believed. And I’m guessing sometimes it felt like he was believing his way through quicksand, because he said this: 
“If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.” MLK 

I am working at believing. Believing for a day when breakthroughs will come. When science will crack the mysterious code that keeps so many suffering. I am believing that, even if there’s never a national holiday to celebrate the eradication of this relentlessly brutal disease, that my grandchildren and great grandchildren will gather for dinner somewhere and the same time every year. And they will raise their glasses to their strong, valiant, soldier of a granddad…who never stopped fighting. 

I wonder: what are you believing for today? What seems impossible? I am wishing you the strength to stand in the trenches and the strategy to make inroads that generations will thank you for. I am wishing you life and joy and peace in the battle, though sometimes those things seem impossibly incongruent. I am wishing you the bravery of Abraham Lincoln and Amelia Earhart and Malala Youfsazai. Because we all have a story and we all have a storm. May we have the faith to believe with Martin Luther King, Jr., that “unearned suffering is redemptive.” 

So, I guess, I am not wishing you a quick way out of your battle: but I am believing for you and for me, that every square inch of our battleground will be redeemed. And on that ground, beauty will grow, wild and free. 

Let Freedom Ring, 

Bo"

Sundry Sunday thoughts

Well, I was right.  He wasn't wearing purple.  But no, he didn't have a beard, though Jane pointed out he had good thatch of hair (I imagine by contrast with mine).  Geoff Feasey preached about the neglected New Testament gift of refreshment (1 Corinthians 16) - by which he didn't mean a pint (in spite of the old joke about Paul reaching the Three taverns... where he took courage - Acts 28).  

I feel I've been a bit negative in my past few entries; so here's something I recently received from Andrew White, vicar of Baghdad, to encourage those of you who think the younger generation are the pits and to challenge all of us.  The church runs a clinic and feeds a lot of the Christians in the city - which means an eye-watering monthly budget.

'So first Joanna..., a 9 year old girl who goes to the River Church in Cherry Hill, New Jersey. A great church led by Kyle Horner where I spoke just two weeks ago.

'As I often am, I was slightly worried about how we would feed our people in Iraq next month. It is such a significant season as Easter is the most important time of the year for Iraqi Christians.

'Faiz, our lay pastor, told me he did not think we would have enough money next month. I told him that somehow our Lord always provides. At our staff meeting when I got back from the USA I was told about our terrible financial situation.

'Kyle Horner then contacted me to say that little Joanna in his congregation had given her life savings for the children of St. George's Church. She was saving to buy a dog and she had collected $80 she gave it all.

'I was so moved by this. Not the widow's mite but the little girl's. I told her story to several people and they started to give money. I do not know exactly how much was given in response to the story about Joanna. It has been thousands of dollars and we now have enough to feed our people this coming month. In addition to this I have been given $500 for her to buy a puppy.

'This morning I had an email from her. She said that she had been learning about George Müller at school and how the Lord provided for all the needs of the Children's Homes he ran. She told me she wondered how our Lord was going to provide for us.

'It is a wonderful story of how the Lord provides for those in need. It is also a wonderful story of how the Lord responds to our generosity. Joanna has given her everything to G-d. He has given in response more than she ever could.'

Andrew added: 'If you want to give in response after reading this, please specify that it relates to Joanna's story.' There's a link to his website on this page.  

Finally, I'd appreciate feedback on this idea.  I'm a bit fed up of banging on so much about assisted suicide.  Obviously it's something I feel strongly about, but my original intention with this blog was to give an idea of what living with MND or Lou Gehrig's Disease is like - hopefully honestly but not too negatively - not be constantly campaigning.  For one thing, that's not what my life is about.  Crusading doesn't give me a buzz or a purpose for living, as it does some people.  Life is given us to enjoy.  And for another thing, I wonder whether you, dear reader, groan inwardly and say, 'Not again,' when you see the subject coming up again.  And I'd hate to lose you in an outburst of, 'Boring!'  So when this weekend The Times returned to its campaign to get assisted suicide legalised with no less than three articles in the one issue, I thought, 'Oh no, not again!  Am I going to have yet another go at explaining the dangers?' and then I wondered whether to set up a separate blog devoted to ethical and socio/political issues and reserve this one to being an everyday story of disabled life.  

I'd be interested in your reaction.  I'm not sure I'd be able to sustain two blogs.  And I suspect as my physical life gets more limited my mental life will become the substantial part of my disabled life anyway.  Anyway, meanwhile be aware that The Times does have a positive agenda to promote euthanasia, and that the best website for the opposite - and ethically sound - view is Care Not Killing Alliance (http://www.carenotkilling.org.uk/).