I haven’t blogged in a really long time. It’s been 7 months since my last post. Initially, I started this blog so that I’d have better odds at getting a job in my field. At the time of my last two posts, I had secured a job and an entirely new life began in a whirlwind that still hasn’t touched down. I lost the purpose for this blog.
Since that time, our life has continued to be in a constant state of change, and yet we’ve had a remarkable peace about it along the way. We are pregnant with a baby girl who will be born in June. We are shopping for a house. Mike is working in a job completely different than he had planned to do when we moved here, and he’s incredibly fulfilled by his work. My job has challenged and tested me from the first day, and I am truly thankful for the incredible people I work with and for the community we serve. We have started working with the religious life ministries at AU (our alma mater) and I’m leading a small team of some powerhouse women who inspire and encourage me on a daily basis. And with all of that, I still didn’t feel like I had a reason to write.
A part of me feels like no one would be interested in the day-to-day babblings of my life. A part of me has been far too exhausted/busy to think about writing. And more than anything, I worried that I craved the approval of others a little too much and needed to pull back a bit. But, I feel inspired to write again.
So, as we continue to move through these ridiculous blessings and challenges that have come our way, I will be writing to help process this whole becoming a mommy/homeowner (read: grown up) thing and you are invited to come along for the journey. It’s a crazy one!
Our good friend Ron Clark died a few days ago, just a week and a half after his 30th birthday.
His blog and his incredible wife Heather’s blog chronicled his heroic battle against cancer since 2010.
Ron was the funniest, coolest, sweetest, most selfless guy we knew. The world is way worse off without him.
Ron’s cancer was due to a rare disease called Von Hippel Lindau (VHL) that has no cure yet. Coincidentally, May is VHL awareness month. (If you’re a Grey’s Anatomy fan, that’s the same disease Teddy’s husband had). This disease is genetic and causes tumors to grow and can be very dangerous if unmonitored. Ron’s previously treated and monitored VHL was left unattended due to a lack of health care/insurance coverage that would allow for preventative care. While we can’t know for certain what would have happened, it is likely Ron would not have died a few days ago, or have spent the last year and half in a lot of pain if there was healthcare available that would have covered a yearly MRI scan to monitor his VHL. THIS IS A FAILURE OF THE SYSTEM.
Please take a few minutes and read Heather’s very informative blog post about VHL and the frustrating lack of healthcare available until Ron’s cancer was terminal. Then, join me in taking action by writing your representatives to encourage them to continue to press the issue of health care reform at the federal level so that this stops happening!
[Sidebar: This is likely to be my only political post, and I don’t really feel that this post is about politics as much as it is about basic human rights. While I know that some readers might not share my thoughts on the necessity for health care reform, I still urge you to help raise awareness, funding for patients, and funding for research on VHL and other rare diseases.]
If you’d like to email your representative and don’t know what to say, copy and paste this message:
To the men and women representing me at the Federal level:
Ron Clark died a few days ago at the age of 30 from cancer caused by a rare genetic disease called Von Hippel Lindau. Ron’s untimely death could have been prevented if he had access to a yearly MRI scan to prevent cancerous tumor growth. Unfortunately, because Medicaid would not cover this preventative care, and insurance with this preexisting condition was unaffordable for a college student whose parents’ insurance would not cover him, Ron was forced to go 7 years without a scan. When his body became ravaged with multiple types of terminal cancer, his Medicaid covered thousands of dollars of treatment and care, but that money could have been better spent preventing his death.
I urge you today to continue to find a universal health care option so people like Ron don’t have to die young. So people with rare diseases aren’t ignored. So our taxpayer dollars don’t go to helping people die, but helping people live.
[You can read about Ron’s battle and the many frustrating and ridiculous obstacles he faced trying to get help on his blog (http://morelikeasseffect.blogspot.com/ and his wife Heather’s blog http://heatherbelle79.blogspot.com)]