Just out from Reeves Foundation

https://mail.google.com/mail/u/0/#inbox/16045e48cd3cf919

Please check “SCI Research” page (above) for the full release. The FDA has just approved fundraising for The Big Idea based on the Susan Harkema, U of Louisville, and others’ research on four men with significant SCI damage. All four men can stand, move their toes/feet, and have improved ‘quality of life’ functions. (read: bladder, bowel, sexual). This is due to spinal cord stimulators. The stimulators in this study are used in unique ways but, based on our son, we know that spinal cord stimulators are used in a widespread way by pain management physicians. The hope continues. If Reeves can raise enough funding and Harkema’s research can progress, many, many doctors could be already equipped to make a huge difference for those with SCI.

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B ~ So There, Death: Freedom

(Continued) Do you ever have those moments from a song or talk or sermon that come back to prey on your mind? Moments that seem to be seared in your memory for what they meant to you? I had two this summer that seemed related. Here is B. A preceded this.

I am well aware of the miracles recorded that Jesus performed and also that there were a lot more miracles that were never recorded. Despite knowing them well, here, again, I learned in a startling way what I did not know. One day near Capernaum, on the banks of the Sea of Galilee in Israel, two blind men came to Jesus. It was the first time blind were given sight and there is no record of the disciples ever healing blindness. Ok, I knew that. I also know that lepers were considered unclean, lived apart from others, and were considered to be extremely contagious – untouchable. I learned now that the blind and also others with handicaps (ok, now you get why this caught my attention anew) were all considered unclean, a scourge on humanity, rejects of culture, and certainly not to be touched. Here, these two blind men – who were likely close to death since there were no hard-fought ADA (Americans with Disability Act) laws and they could not see to work, get about, or do much of anything living as rejects of society – declared that Jesus was the Son of David and asked that he heal them. Jesus could have simply announced that they could see, but rather, he chose to touch their eyes and pronounce them healed. He touched them! Through this simple interaction, they declared him the Messiah – Savior of all – and he declared them clean, fit to be touched, and included with society.

Side bar: Here is another eureka for me that I have yet to wrap my mind around. Perhaps others have the answer I’m trying to come to grips with. In both the tabernacle and the temple, there were levels of access culminating in the Holy of Holies providing only the High Priest access. But, remember the outer levels? The unclean and handicapped could not enter. Pause. Ok, so for 63 years of my life I could have entered the temple. All of a sudden, at 64 I would no longer be allowed access? Maybe I’m too American but I do not understand that – in either Old or New Testament days. Note: the tabernacle and temple were not accessible. Period.

Jesus opened the eyes of the blind men but also gave them liberty, freedom, and inclusion. They were no longer marginalized but had full access to the temple, which was the only space for worship in those days. How accessible are our churches? How welcomed and included are those with a wide array of handicaps to our churches?

Usually in church, it’s the music that moves me to tears. This time, it was the sermon. Perhaps it wasn’t just for me but because of a summer in which we faced difficult loss. There was a lot of sadness including a miscarriage. We tried to support a brother-in-law, a cousin, and a dear friend with cancer. It was also a summer in which we watched a friend die a devastating death just a year after his wife lost her battle with cancer. This left their children and grandchildren without that anchor of support. I was fighting tears throughout the service and trying to get it together with bowed heard during the final prayer. A friend who typically sits in front of our reserved for families and those with handicaps back pews because she needs to leave early, touched me on my shoulder on her way out, leaned down, and whispered, This ones for you, Collene.

Later this reminded me of finding out, literally by mistake, that the one and only accessible excursion on our cruise, based on their literature as well as assurances on two calls to the cruise line’s dedicated handicap phone number, was only available for those who could stand and climb steps. What? This was in the largest city and capital of the country. Ma’am, the excursion desk staff woman told me, there is not one accessible bus in xx(capital city)xx. Our emotions went from anger to frustration to disappointment and finally to, Wow, thankfully we’re only visiting and not living in this country.

Even greater, I’m thankful that I live in a world where Christ saves us regardless of abilities and gives us life abundantly.

A ~ So There, Death: … You

(First of 2 parts) Do you ever have those moments from a song or talk or sermon that come back to prey on your mind? Moments that seem to be seared into your memory for what they mean to you? I had two this summer that seemed related. Here is A. B will follow.

My husband and I need to arrive almost everywhere we go early because, not only do we need a handicap spot, we need a handicap spot with the blue slash marked area. Apparently many, even with handicap hang tags, do not understand these spaces are designed specifically so those with ramps have space to lower that ramp plus space to actually roll down and off. (But, that’s an entry yet to be written.) One advantage of getting to our church early is that we get to hear our 70-100-voice choir rehearse their songs. I noticed it was Abide with Me one morning and thought, “Oh, good, this is one song that won’t move me to tears.” I had grown up with this song and it seemed a bit slow and ho-hum. Well, I hadn’t heard the rendition by GM, Minister of Music and Director. Our brass ensemble, rather than the full orchestra, was playing this day. The Brass were seated at our directors left with the choir in front of him. As the service progressed and it drew to the choir’s contribution, the words caught me. (Italics added)

Abide with me: fast falls the eventide

The darkness deepens, Lord with me abide.

When other helpers flee and comforts fade,

Help of the helpless, O abide with me.

I need your presence with each passing hour.

What but your grace can foil the tempter’s power?

Who like yourself my guide and strength can be?

Through cloud and sunshine, O abide with me.

 

I fear no foe with you at hand to bless,

Ills have no weight, and tears their bitterness.

Where is death’s sting? Where, grave, your victory?

I triumph still, if you abide with me.

I’m not a swearing person or taken to crude language but at this point I am moved and am thinking, so there death! xxx you death! You had your chance but I’m still alive. I’m living to do more – (of what)?

Hold now your Word before my closing eyes.

Shine through the gloom and point me to the skies.

At this point the director has been building the brass and voices but he’s demanding even more. He stamped his left foot and dug down-and-out with his fisted left hand to inspire the brass.

Heaven’s morning breaks, and earth’s vain shadows flee;

And, now, instead of the soft pianissimo I am used to hearing with this song, the director digs down-and-out with his right hand to inspire the choir to give all they have for:

In life, in death, O Lord, abide with me.

(Henry Francis Lyte)

Whew! Death, you did have your chance with me. I was at death’s doorstep, unconscious, and on life support for days leaving my family feeling helpless and praying as much as they dared and as boldly as they dared. Little by little I’ve gotten to this point. Not easy for my family or me. But, here I am and I’m still working to be as independent as possible. I’m asking God to abide with me and bless the work I’m trying to do. It’s certainly not what I expected to do or much of anything that involves moving about. Thankfully, we live in a world of being able to communicate with the keyboard and Internet. Is that what I’m to do? Am I to be here longer for our children and families? Is my manuscript going to be accepted and published? It seems the message I have to share is crucial for mobility challenged children, their parents, and health personnel. What message am I to share through my blog? I will trust and watch how he abides with me, not quietly but working to the fullest I can. So, there death! Take that!

A Story of Grace

I was asked to speak at our FL church for a stewardship moment. It is at the very beginning of the service immediately after the announcements. If it doesn’t come up, it was Nov. 27 ~ click the “watch” button.

http://www.moorings-presby.org/archive-services.html#

For a second time, my testimonial was called “A Story of Grace” by others. It is.

We all receive blessing. Shalom, Collene

Tears

Here we were on this lovely cruise. We were well fed, well taken care of, in an accessible room, relaxed, sunning, entertained, reading, … But, yet, as I read my book, I was tearing up for the second day. The book was historic fiction set near the end of the Civil War and slavery, written from the viewpoint of the slaves. I have read plenty of books about slavery, slave trade, Nazi suppression of Jews, Dutch suffering when caught for hiding the Jews, Japanese Internment camps, Native American suffering based on the US government’s broken promises and white western expansion, … lots of books about some of the worst examples of humanity. Why were the tears continuing to stream down my cheeks while reading this book, I wondered?

The slaves in this book kept supporting each other with promises from God. Promises like “his eye is on the sparrow” sustained those who were suffering. They had faith that, in the end, God would provide Glory. Eventually it dawned on me. Now that I am living in a wheelchair, I feel imprisoned in a body that no longer works. I have a small sense of what it must have felt like for slaves. In a way, I was like them with no way out of my paralysis, here through no personal choice, benefiting from the love of family who also had no ability to change my situation, … I thought I had always felt empathy for others. What I felt in the past wasn’t as real as it was now to feel the pain of others in similar groups.

Maybe the worst hurt came when I realized that a then-Presidential candidate was mocking others with handicaps like me. Not only did he think it was funny and ok to mock us (or anyone), but he did it while trying to impress and earn the support from voters who also thought it was ok. And, it wasn’t only those of us with handicaps but other groups were purposely targeted and disenfranchised.

Another realization was “in my face.” There was not one excursion off the ship in any of the six countries included on the ship itinerary that was wheelchair accessible. I was told by ship staff that one particular city we visited, of over a million people, did not have one bus in the city that was accessible. How challenging it must be for those with handicaps in such countries. It made me grateful for the many people before me who fought long and hard for the Americans with Disabilities Act (ADA) and Housing and Urban Development’s (HUD) Fair Housing Act (FHA). I also wondered what America some people wanted us to go back to when America was greater than it is now. Prior to ADA or prior to more fair civil rights?

I am reminded of Margaret Mead, “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” I pray for America, Americans, and our leaders. Jesus ate with Samaritans and tax collectors. Our command is to love others as ourselves. Isn’t that how we work to help His will be done on earth as it is in Heaven?

Give thanks for your many blessings.

Shalom, Collene

Joy Through the Eyes of a Child: Who Just Happens to Have a Mobility Disability

 

Recently my husband and I were privileged to attend Stroll n’ Roll, a fundraiser and fun activity for Spina Bifida. Stroll n’ Roll, as I understand, was originated by two young moms who learned up close and personal what Spinal Bifida was all about. In a bit over a half dozen years, this event grew to what we witnessed and participated with. The event was moving, and I’ll share it through my impressions and recurring memories.

  • Hmmm, interesting:
    • We walked into a large, banquet room filled with hundreds of people of all ages, knowing, but not visually noticing, that it involved families living with spina bifida.
    • We were in the outstanding Frederick Meijer Gardens venue and were able to enjoy the gardens, sculptures, and thousands of fall mums. The most striking sculpture was the enormous Da Vinci Horse Statue.
    • A table of red t-shirts noting “ADJUST BELIEVE OVERCOME REDEFINING SPINA BIFIDA” with the JUST BE ME lined up vertically in the center of the wearer’s chest.
    • Vendors proudly participating in the event with samples of their products but also with their families present.
    • A nurse telling me she has participated for years with her personal children because at work, she sees the children at their lowest. Here, she sees them healthy and having fun.
  • So fun:
    • Boys about 2nd to 4th grade clad in new, red t-shirts greeting each other with huge smiles as only children can when they see another child who they may have just met or may have seen over the years.
    • Knowing one of the boys who is walking has spina bifida and an obvious friend his age in a wheelchair also with spina bifida.
    • One of the boys doing wheelies and balancing joyfully and proudly on his large, rear wheels.
    • Moments later 4 red, t-shirted boys gathered, chatting, smiling.
    • Young children with lights flashing on their wheels like one sees on some children’s shoe soles.
    • Wheelchair Michigan, proudly wearing her sash and ornate dress, rolling around the room, introducing herself for the award she had won and explaining her ambassador role. She told me she happens to have spina bifida as well but goes around the state greeting people and letting them know that life goes on for people in wheelchairs. (Example of her cutting the ribbon for a new beach access sidewalk: https://www.youtube.com/watch?v=lO_iTiaVTI0)
    • A buzz in the room of lots of chatter, laughter, kiddos moving about the room comfortably, obviously well used to moving themselves around with their wheelchair, leg braces, or other methods.
  • Most tender sight:
    • A young child of about 2 years pushing the back of his (apparently) older sister’s wheelchair down the hall.
  • Signs of brighter times:
    • Sunshine breaking through the drizzle as we headed out, with my husband and I purposely holding back to watch the excited youngsters and their support groups heading out.
    • Lining up with about a hundred others to roll or stroll about the gardens with the other families and friends, unable to keep from smiling as I watched the kiddos with their flashing wheels and chairs touched with individualizing color and sensing their excitement.
    • Rolling as quickly as I could with my power assist wheels just to keep up with the scores of people who were in the line that began to stretch and thin out a bit. I recall feeling determined NOT to fall behind.
    • A group of probably 20-30 people of all ages, dressed in t-shirts proudly noting the name of the child they were there to support all gathered around and dwarfed by Da Vinci’s Horse.
  • Funniest memory:
    • Hearing a voice behind me say, “keep going, we’re falling behind that old lady.” It didn’t take much checking in my peripheral vision to note my grandmother wasn’t walking with me and they just might be talking about me.

Watch for your blessing in the eyes and smiles of our little ones.

Shalom, Collene

9/11/01 ~ 15 Years and Counting

Where were you when you first heard, then watched a plane crash into one of the twin towers of the NY World Trade Center? Each of you reading this will be able to quickly bring back the place, people, surroundings, feelings, conversations, uncertainties, immediate thoughts of the safety of personal loved ones, horrific images, … and, the rest of the day as well. This is a time for each to remember personal experiences and implications – not those of mine. … … … … Vivid and poignant, aren’t they?

It is hard to think such vivid memories are from15 years ago. Aren’t there things you wish our country had done differently since then? Aren’t there things you wish our world had done differently since then? Aren’t there things you wish you had done differently since then? I do! None of that can change. We can only impact the future. The Iroquois Nation said, “In every deliberation we must consider the impact on the seventh generation…even if it requires having skin as thick as the bark of a pine.” I believe that is wise advice. In order to do that, we must study, think on, and then teach our family and share with our friends the “true north” in our lives, what we believe, what we trust, and what we value. May it be for Good and not for harm.

This morning I received a message from Cheri Lovre, the well-known and respected expert from The Crisis Management Institute, who helped me and many school leader friends deal with school crisis situations like suicide and the Amish school shooting personally, to the Columbine school shooting on a more national scale. Cheri closed her note with the following:

“I would hope for all of you that you find time for reflection on the preciousness of every moment, the treasure it is that we have for those who love us and those to love, and the opportunity for each of us to continue to strive to make a difference by bringing more than tolerance…by inspiring love in all corners of our world…or in the words of my favorite prayer, ‘to rise above the differences and distinctions which divide us…’

 “May we all bring the light of hope to those around us, most especially to the children and youth in the hallways of our schools. Never underestimate the encouragement you bring to students’ lives by your loving presence. Live is fragile. Fill it with goodness!”

Watch for your blessings – and be sure you are a blessing to those around you.

Shalom, Collene