The Beautiful Gift With an Ugly Price Tag

This article has been circulating around the web quite a bit. I’ve seen it shared on both Facebook & Twitter. For some, it’s mind-blowing; others not-so-much.  Money isn’t everything, but it can be influential. Yet it’s not all there is.

I set an aggressive fundraising goal once I decided how I was going to fund my transplant. I am fortunate to have an insurance plan that provides great coverage; especially with the upward trend of increasing deductibles & out-of-pocket expenses forcing people to pay more out front before they get any help.  Despite the high premium, I am not going to find better on the marketplace because my plan is one of a dying breed. I see it evaporate a little more each year.

Some people aren’t so lucky.  Some people can’t list for transplant because of financial barriers. A few years ago, I might have been one of those people.

I am fortunate to have had & continue to receive the help of several people to share the burden of having rare and chronic diseases whether in serious illness, or have the freedom to appreciate periods of stable health.

Yet, I struggled at first with setting a fundraising goal.  Part of me was hesitant to admit how much help I needed in the way of finances for drugs, post transplant rehab, insurance premiums, amongst other things. In fact, I didn’t itemize the dollar amounts out as a means to justify asking.  I simply asked for help which as my friends know is one of my weaknesses. I worried a bit about it at first.

It was a hard ask.  I have always believed in giving what I can to various deserving entities or friends when they need a leg up.  Just to do it, not out of obligation or repayment but because I simply wanted to & what I could within what I had.  I’ve been very good at helping raise funds for research or to raise awareness in a personalized way.  Yet, this was different.

Yet, once I asked, it started an avalanche of spontaneous assistance. Surprising, but inspiring.  But it wasn’t just financial assistance. It was acknowledgement of all the little acts that I had deemed as small or random showing of support over time.   It is heartening to me.

I didn’t ask my improv friends to take up a spontaneous collection at a show.   I didn’t ask my friends who run a local business where I have a weekly brunch to sell cookies for me & donate the proceeds. I didn’t have another business owner who has a big heart whose daughter was ill, stop me in the grocery store and not only ask how I was but offer to get involved when I was ready.

I didn’t ask one of the nonprofits I volunteer for to return the small kindness I show them during the holiday (just a small token for them out of an appreciation for the work they do).

I never asked my hometown to remind me of all the ways I’ve lifted them in hard times.

My parents never make me feel guilty for admitting I sometimes need a boost.

My best friends that I share a home with offer support unconditionally without me reaching out.

People have time and time again, stepped up for me in a big way, because they wanted to, offered to. Sincerely with meaningful actions that can’t be be measured in dollars & cents.

I wish everyone had this in their life, but it strikes me how important it is; because I realize how rare a gift it really is. Not everyone has what I have.  It’s humbling.

I no longer feel as if I could be a drain. I just feel I’m getting a return on my investment of people. That makes it easier to let go.  That’s how I know I have a shared goal & things will all turn out in the end.

But I genuinely feel for those who don’t have this in their life. They’re doing the heavy lifting on all ends.  This is but one example of a tangible yet real reminder of the price they pay to even attempt to reach for that second chance.

The threat of bankruptcy or homelessness from serious, rare, chronic, terminal, or catastrophic illness is very real & present. It’s not perceived.  Not everyone has a safety net that seems to envelop them the way mine does. I’m grateful for my safety net because then I can focus the attention where it needs to be focused. I’ve also been given gifts & tools to not only appreciate but augment the support that others show. That’s true empowerment.


2 thoughts on “The Beautiful Gift With an Ugly Price Tag

  1. Reblogged this on HealthcareVistas – by Joseph Babaian and commented:
    Complex medical needs find “the threat of bankruptcy or homelessness from serious, rare, chronic, terminal, or catastrophic illness is very real & present. It’s not perceived.” Shouldn’t we all take a moment and find ways to turn this around? It CAN be done. #hcldr pros have ideas! YOU have ideas!

    Liked by 1 person

    • My friend & also newer mentor, Joe, thanks for the reblog & support as always! I’m proud I stumbled upon the Healthcare Leadership (#hcldr) tweet chats, blog, & collective thinking over the past few months. It’s nice to be able to keep up my professional pursuits as well as personal interests in a very energizing way with like-minded people I can share ideas with and learn from and they in turn value my insights.


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