A rare thing

Summer Suleiman
Sep 28, 2017 · 4 min read

I am overwhelmingly grateful for the opportunity to have traveled to LA to visit Dr. Terri Getzug and other incredible doctors at UCLA.

Almost six years ago, I was diagnosed with a rare genetic disease called Familial Mediterranean Fever, which mostly affects people of Arab, Jewish Turkish, and Mediterranean descent. True story!

I lived with the disease undiagnosed until I was 24 years old. For years, every month I experienced debilitating attacks that would leave me bedridden for 3 days. After a week, the symptoms would slowly dissipate, and I appeared perfectly normal and healthy. I have reveled in periods of perfect health, and I have hung on in patches of physical and mental misery.

What a journey it has been.

I wouldn’t be standing on my own two feet today if it weren’t for my family who saw me through so many long nights throughout my life. My dad, who created a way for me, when a way did not exist. My mom, who nursed me back to health time and time and time again. My sister Nina who caught my tears and held my hand through all of the unbearable pain.

Dr. Dalton — my doctor who diagnosed me after all those years, who was willing to think outside of the usual medical realm, ask questions, listen (truly listen), and believe in me. You will always be my MVP, and the man who changed my life.

My CNN family who supported me through the darkest times of this illness and showed so much grace and generosity towards me on those long night shifts. (Remember that one time when the paramedics had to roll me out of the newsroom?)

My angel on earth - Angel Harper. Bernadette Brown, Eli Flournoy, Eric Ruder, Spurge Smith, Hande Atay-Alam, Donte Grant, countless others. Atlanta will always be my second home. (A lot of people are gunna be mad at me for that one.)

My Idea Village family who helped carry me through three Marches and the most stressful and exciting time of the year for us — New Orleans Entrepreneur Week. (I won’t forget the way you were ready to throw it down for me that one time at La Casita!)

My dearest Reba Joy, for leading me to Dr. Getzug, when I’d just about given up hope. My best friend, Angelle - the darkest days of the past year were made brighter because of you. You helped me to remember joy again. My cousin Amany — your unfathomable strength and resilience jolts me back to life when I most need a reminder.

Each one of my friends - every time you asked me “how are you feeling, today?” because you know that to live with a chronic illness is a different battle each day.

I have been private about my illness in the years past for many reasons, mostly because I never wanted to be defined by this illness.

It is a part of me, but it is not of me.

I have decided to share my story now because of where we are. It is an unprecedented and scary time for our country. My heart breaks for every person who is battling a chronic illness and does not have the medical resources necessary to seek the treatment they need and deserve.

My heart aches with you, for you. I’m sharing my personal experience because I hope you’ll see that I am no different nor more deserving than anyone else who can’t afford health insurance. Nothing separates me from the rest. We are all the same.

Last year, when I left my job to take on The Distillery, I qualified for Medicaid. If it weren’t for Medicaid, I would have been unable to acquire the medication I need to fight this disease.

I hope that if you read this, you’ll consider people who are just like me, but who can not afford or access healthcare, particularly those with pre-existing conditions.

I know you are overwhelmed by all that is happening around us and in the world. I know you are tired, exhausted, fed up. I am too. But please take a moment to consider that you could help change someone’s life.

The act to repeal and replace Obamacare was denied, but it’s not over yet. Each one of us can do our part. Register to vote if you haven’t already. Know who your elected officials are and what policies and practices they stand for. Stay informed. Ask questions. Call your senators. Write to them. Stand up. Protest if you feel inspired to. Organize. Take action.

But mostly, be kind. Be compassionate. Seek to understand others first, rather than to be understood. Listen — really listen.You never know the battle that the person next to you is struggling with. There have been so many moments in the past six years when a stranger’s smile saved me. What small thing can you do today?

My own health journey continues. This is a milestone. There will be many more doctor’s visits, research, experiments, disappointments and breakthroughs. To able to do so, is a privilege in itself. One that I believe every person should have the right to.

We are witnessing history unfold right in front of us.

We have the power to transform these dark moments into opportunities to shed light, to uplift, to be bigger, braver, better.

We are in this together, never apart.


Summer Suleiman

Written by

Writer, Creator of TheDistillery.life, believer/teacher of meditation, original New Orleanian.

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