Are We Meeting the Holistic Needs of People Diagnosed with CMN?

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Categories: Travel

Ok, so, let’s have a talk. Usually when someone says that, you brace yourself for a break up or heavy news. This isn’t one of those talks. I had a truly amazing experience and I want to share that with you, if you’ll let me. I’ll try to let my words paint a picture, so you can just sit back and read, and hopefully go on this journey with me.

Recently, I flew to Orlando for a conference for Professional Patient Advocates. I’ve come to love air travel; any more it’s just comforting. The hum of the engines, the life all around you, even the obnoxious couple that inevitably sits behind you and talks through the entire flight keeping you awake, I love all that. I had the opportunity to read an awesome book, the book is called The Alchemist, and it really got me ready for the adventure I was about to embark on.

So, I got off my plane in Orlando, and the high-seventy degree (or 21 Celsius) weather was a welcome relief from Oklahomas’ thirty and forty degree weather (for all of my friends not in the US, we’re talking between 0c and 5c). I got to my car and found my GPS had broken somewhere between Oklahoma and Florida. I really was about to have an adventure, one without GPS to get me around a brand new city. Alright, for those of you younger than myself, I used a thing called a map to get a general heading and then got on the closest highway and drove. The sense of freedom was truly pleasurable. I rolled the windows down and just drove with a big smile on my face.

The next day the conference began bright and early (8am) and the keynote had a lot of great things to say that got everyone excited for the next nine and a half hours of talks on advocacy. One talk that really stuck out as applicable to me and Nevus Outreach was the talk from three staff members of Memorial Sloan-Kettering Hospital. Memorial is a specialty hospital; their specialty is cancer. They see over 24,000 admissions per year, and this year they breached 25,000. The average length of stay is 5.5 days. Which is, apparently, longer than the national average, but they told us that just meant they had more time to improve their lives. Between their facility in NYC and their regional sites, they see over 500,000 outpatient visits a year. Their talk was on a holistic approach to advocacy. As a psychologist, I was very intrigued because I always push for treating the whole human being, not just the apparent somatic symptoms.

Director of Case Management, Laura Ostrowsky, started off her section of their talk by defining advocacy. I think it’s important to look at advocacy as both a noun and a verb. As a verb, advocacy is to speak or write in favor of; support or urge by argument; recommend publicly. So this is what you do, but is it enough? This got me thinking about you, as a group. As a parent or relative of someone with a dermopathy, I feel we’re called to more than just “speaking or writing in favor of” the betterment of children with Congenital Melanocytic Nevi. Now, don’t misunderstand me, I don’t want to sound condescending. I’m certain that you have done your research, attended nevus gatherings, maybe even a conference or two, and you have every good tool in your tool belt, but are you using those tools in daily practice to treat the whole human? Do your loved ones affected by CMN have the same tools in their tool belt? I’m still new to all of this, so this has been a good journey for me to take, and learn from. If you are in the same place as me, I want to propose that we as a community don’t just advocate in speech or in writing, but we take it to a further degree than nouns and verbs, and make it a personality characteristic. As this talk advocated, you have to remember that people affected by diseases are scared, but sometimes not as much as their loved ones (I’m sure you know this all too well). How many kids each year are bullied because they are different? According to Statistic Brain ( thirty-seven percent of teens reported being bullied while in school. The numbers of kids who suffer from cyber-bullying is a staggering fifty-two percent. How many nevus children come home crying because they look different and they feel they need someone to talk to to treat those emotional wounds? They need an advocate.

In my world, every so often I hear about a little baby that has been diagnosed with Neurocutaneous Melanocytosis. Every time I hear about this, it breaks my heart. I think what could I do for this child? I’m sure the parents are “plead(ing) for or in behalf of their child” which happens to be the second noun definition of advocate. The problem I have been skating around is this: there are many of us out there with many tools in our belt, and there are those of us with fewer tools. I guess what I want to challenge you, my awesome reader, to do is to share your tools, because only then can well all have the armor we need to grow as humans.

The nevus conferences are a great way to educate people, but unfortunately the conferences are only every other year, and you or your loved one have nevi every day. Let's choose to become better advocates for the beautiful kids we’re fighting for. Contact me today for ideas about how you can be a better advocate.