There are plenty of times when I, like anyone else, experience many of the frustrations that intrude our hearts. Whether those emanate from struggles with being denied some of the opportunities that others have, from a relationship that didn’t turn out the way I had hoped or expected, or from any unanticipated turn that might be thrown in what I may have thought to be a steady path, there are times when life can seem victimizing. But, in every single one of these instances, every single time the shadows seem to be lengthening into the sunlight, I’m reminded of how truly and exceedingly fortunate I am. And, the reasons I’ve been so fortunate are a result of the challenges I’ve faced.

I can think of no greater example than the fact that you are here, visiting my website, and reading some of the things I have to say. If it weren’t for the unexpected and difficult events in my life, I would never have had the opportunity to share this life with you. If it weren’t for the heartache or sense of struggle that I have undergone, I might not have learned how we have the ability to not just live but, in fact, do incredible things despite it. And, were it not for living so close to vulnerability, I might not have come to understand compassion, strength, or love as deeply as I have.

In varying degrees, that’s the case for all of us. It doesn’t take experiences like mine to know the depth of challenge, nor does it take experiences like mine to realize that there is purpose and beauty to be found in it. If coming in contact with my story might help some reach that understanding, then I couldn’t possibly think of any greater purpose in my life. After all, I would say that the best any of us can do is live our lives as best we can, and hope that we affect some people for the better along the way.

XO

What a luxury. What a disturbingly privileged position the US Supreme Court and Congress has created for itself. The language they have used to discuss this issue, dripping of anesthetic and robot-like inhumanity, has centered on obscure parts of the commerce clause and whether it is within the US government’s constitutional jurisdiction to mandate or prohibit “activity or inactivity” like the purchase of health insurance. This seemingly cold and calculated simplification of a complex social issue was, just two years ago, nearly unthinkable and almost without precedent in US law. Yet, here we are, two years later, awaiting how the nine Justices of the Supreme Court–politically privileged in every way–sees fit to rule on the constitutionality of the Affordable Care Act.

What a luxury. What a disturbingly privileged position the US Supreme Court finds itself, to rule on the constitutionality of the provision of a good it has absolutely zero chance of ever losing. For the US Supreme Court, the issue of healthcare was never one that was in need of reform, in fact it was formed quite well. For the US Supreme Court, it has never been a matter of “finding a job with benefits”, because the benefits afforded to these nine individuals are as vast as their robes are unflattering.

I can’t claim to be an avid fan of the “individual mandate” as the cornerstone of a movement toward universalizing healthcare coverage. I think this creates a tremendous boon for the health insurance industry, when the very last thing it needs is more power or advantage. However, what I do know is what it feels like to be dependent on a healthcare system in order to get through each day. The heart of the issue is not about the commerce clause. It’s not about the individual mandate. It’s not about the unreasonable and unsubstantiated fears of “socialized medicine”. The heart of this issue is how to allow people, who through no fault or decision of their own, are facing unimaginable difficulty are not made even worse off because they can’t secure the services they need.

I can’t imagine what my life would have been like over these past 22 years if I didn’t have health care coverage. I know that many others have not been quite so fortunate. However, I have lived every day for the past 22 years under the health insurance industry’s sword of Damocles, wondering when a necessary medical supply would no longer be covered, when a necessary service would be denied, or when a procedure would be considered “beyond medical necessity”. And, that says nothing of the fears that others legitimately have of reaching an “individual cap” in coverage or the inhumanity of the inability to take a job because it doesn’t provide adequate health insurance, or worse yet, the denial altogether of insurance coverage because life has already treated you unkindly with the onset of disease or disability. If the individual mandate was the only way, in the political world in which we live, that the health insurance industry would agree to alleviate some of these fears, then it seems quite worth the undertaking.

Irrespective of how the Supreme Court rules on this matter this week, the upholding or overturn of healthcare reform will say nothing of the divide between what many people need, and what many others believe they are entitled to. For many people, healthcare is not a talking point or a matter of political theater. It is the very issue on which their lives depend. They come from all backgrounds, all ethnicities, all ages, and all political ideologies. If the possibility that healthcare coverage is beyond the financial reach of some, or the medical eligibility of others, does not demand a need for reform, then the US Supreme Court has managed the unlikely feat of making itself even more distant from public realities.

One of Todd’s films, The Sacred Cells, is going to be screened at the Manhattan Film Festival on Sunday, June 24, at 7 PM. If you are interested in the stem cell field, or if you are simply a fan of good films, I highly encourage you to attend if you can. Information about obtaining tickets can be found here:
http://www.screenbooker.com/events/view/219/55aagdsg1i

Much like everyone else, I had friends who have stood by my side throughout all sorts of heartache and all sorts of glory, as well as friends who have come and gone. I suppose that’s the nature of the enterprise, some with a longer shelf life than others. But, at any given time, the people in my life are my heroes, when heroism can often be in short supply.

Jake Incao is a musician from Long Island. We met seven years ago, when Jake was opening for Huey Lewis And The News at a local concert. As happens with many friendships, ours grew unexpectedly, starting with an e-mail exchange over common musical interests. Over these past seven years, though, Jake has been a part of so many of the pivotal events in my life, performing at one of my New York State Senate fundraisers, writing and recording “Hold On” for the documentary, Hope Deferred, and epitomizing a sensitive soul in a sometimes hardened world. In fact, Jake is one of the most special people I could hope to meet.

This week, Jake released a song on iTunes and YouTube, “Mind Wide Open”, which is highly worth checking out. You can find it here.
Mind Wide Open

But, irrespective of this, there was a man beneath the cape, beyond the wheelchair: a father whose courage was only superseded by his love for his family. In June’s issue of Glamour magazine, Chris’s daughter, Alexandra, paid a beautiful tribute to her father. I’m sharing the PDF here. Chris was a hero to many, for sure, but I think he was also an epitome of what it means to be human, learning to balance our inherent vulnerabilities with our tested courage. We all will face the former, many of us will draw upon the latter, and some of us will come to realize that there is beauty to be found in both.

From Library Journal

At age 11, Brooke Ellison was left paralyzed from the neck down after being hit by an automobile. Writing together in alternating chapters, Brooke and her mother, Jean, document the exhausting efforts and dedication that it took for Brooke to beat overwhelming physical odds and finally graduate, with honors, from Harvard University. The story begins on the day of the accident and ends triumphantly with Brooke’s graduation speech from college. Brooke’s upbeat account of her college experience reveals her charming and witty nature, and Jean’s contribution is a testimony to the profound powers of a mother’s love and unfailing dedication. Although many other biographies of quadriplegics are available, this one, written with keen intellect and an open heart, deserves attention. It is recommended for both public and school libraries seeking nonfiction that provides strong role models for adolescents. Academic libraries supporting a curriculum in the health sciences might also find this suitable. Deborah Anne Broocker, Georgia Perimeter Coll., Dunwoody
Copyright 2001 Reed Business Information, Inc.

Get Brooke Ellison’s book today!

Today, the dream of therapies that restore function and feeling is becoming a reality, and Young is leading the search for cures. He sees stem cell research as an extremely important pursuit that holds tremendous promise for treating and curing a host of devastating diseases and disorders, including spinal cord injury and Alzheimer’s and Parkinson’s diseases.

The W.M. Keck Center – Wise Young

By exploring the possibilities of redirecting stem cells from adult tissue or differentiated tissue, Eggan is moving us an important step closer to developing therapeutic applications for diseases such as Parkinson’s and insulin-dependent diabetes, as well as providing an experimental platform for investigating the genetic and environmental factors that give rise to such diseases.

Harvard Molecular & Cell Biology – Faculty & Research – Kevin Eggan