My Dedication to My Sarcoidosis Brother Rodney Reese

I am going to preface this by saying this is one of the hardest things I ever wrote before.

On Saturday we lost a great advocate but more importantly we lost an even greater man. Rodney Reese was so many things to so many people that knew him. He was a husband, father, son, brother and most important to him he was a grandfather. He always talked about his family. The love of his family was always present with Rodney.

 For those in the Sarcoidosis Community that didn’t know him he should have touched you for the things he stood for and his actions for the Sarcoidosis Community. He was always thinking about how he could help someone or how he could make it better for those who couldn’t help themselves.

Rodney always had this great presence when he walked into a room. You always knew you were with a very educated calm force. He always showed that grace, charisma, and had a charm that you were always drawn to.

Now Rodney to me was so much more. He was one of my best friends. He was my brother. We have been talking online for about ten years. We finally met physically at our first FSR Ambassador training with the original 15. We met and right away we hit it off. That is being mild about it. We were brothers right away. We talked during dinner, then some of us went to the hotel upstairs bar, we talked some more. Okay when I say some more we talked until the bartender said last call and our wives called us. We looked at our watches and saw it was after 4am. We had no idea of time. Nobody would have thought we just met for the first time. It was just that easy! But that is Rodney Reese! The next day we paid for it because we had a full day of training on maybe 2 hours of sleep. Did we care? No. We were there to meet others as well as learn.

Rodney was someone who would give me a calm feeling, as you all know I can be a bit “in your face, hothead at times.” He always knew what to say to get a smile out of me when I was going off about something. He also knew when it was time to let go as well and join me on my tirade. We worked hard and loved hard when it came to our advocating. I knew if I came up with an idea no matter how crazy or how quick I wanted to get it done. He would always say to me “I am in. You can count on me. Just tell me what you need me to do.” Every time I needed him; he was there. Even if he wasn’t feeling well, he would let me know he could do only a little bit, you could tell he felt bad about it. It didn’t matter to me if he did a lot or nothing at all, what mattered to me was that he approved. He was my mentor, that was unsaid, but I hope he knew he was. He always said, “How did I have the energy to do what I did?” He was very quick to give me a compliment. Like I said he knew how to make you feel better.

The second year there was another Ambassador who joined us, Paul Dickerson, an amazing man as well. Paul, Rodney, and I hit it off so well. People started to call us the Three Amigos. We hung out together at the training and even went out afterwards. The three of us would keep in touch. At that time, I wasn’t doing that well health wise and having those two positive people always made me smile.  All three of us would call each other to see how we were doing. It wasn’t just a wellness check either, we would talk to each other for over an hour at least. But we never hung up the phone without saying “Love you brother.” Paul started that, but all three of us meant it.

In 2018, I was going through many health issues even being told I was terminal. It was those two brothers that helped me so much mentally to fight for my life.

Then in May 2018, Paul passed away. That was so hard for the two of us. Rodney and I talked that night for well over an hour. One thing we kept was “I love you brother.” You see Paul’s death hit both of us real hard. It was like losing a family member. I remember us talking about how we had to work harder to help others.  We bonded even more after Paul passed, if that is possible.

We went through so much together as advocates. In August 2019, I remember calling him with another “great idea” I had. I remember saying to him” How about we start an online support group, for those patients, caregivers, and family members who couldn’t go to a face-to-face meeting or didn’t have one near them.” Once again Rodney says, “Sounds great when do we start?” Little did we know what was coming. We started the support group in November 2019. It kicked off and was amazing, still is going.

Then the pandemic hit…. In March 2020 we got hit with the pandemic. I got COVID in mid-March. Rodney and others stepped up. It was a tough time for me, but Rodney was calling checking up on me.

Then when I was getting better, something else happened…. George Floyd, Breonna Taylor, Ahmaud Arbery and others, and the protests. Well, that hit Rodney real hard, and he decided to stay away from the support group, as did others. I remember calling him and I never heard him so mad before in any of our earlier conversations. I just remember my heart went out with him.  I felt so bad, and I thought there was nothing I could do to help ease his pain. I knew and felt his pain. I then made my usual quick idea, yet again. “Hey Rodney, why don’t we do a forum about Civil Justice or In-Justice? He was all for it. He jumped in as much as I did. He introduced me back with Bernie Mac Foundation, he also was able to bring on extra people on the panel. He did so much for that first forum and two after even being part of the panels and stepping in to moderate one of the forums for Mental Health and Social Justice. Not once did he want any credit for any of these forums. He put all the emphasis on me and what I did, but not once did he talk about how much he did to make sure these went off well.

You may ask why I made this dedication so long? Well, you all needed to see the Rodney I and many others like me knew.

He was an amazing man. He was a caring, loving man. He was a Brother to me!

The last time I spoke to him was the second day he went into the ICU. I am not even sure Harriet knew this. He said he had to beg and bribe the nurse to call me. He was on full oxygen, but he was still asking me how I was doing. He told me he was going to fight hard and tried to reassure me he was fighting as hard as he could. He wanted to make sure I was doing fine.

You see, that is what Rodney is and was. Always there, always caring, always Rodney! I am sad that Rodney is no longer with us. Well, that is an understatement. I am devastated. But I can hear Rodney telling me, “Come on, you know better, what is next?”

Rodney you may be gone, but you will always be with me. I know when I have the next idea you will be saying, “what do you need?” You will always be here. You will always be in my heart trying to calm me down again.

Rodney, “I Love You Brother!” I will keep the legacy of the Three Amigos going and forever trying to improve this community!

Author: fjr311

Frank Rivera- Founder/President- Sarcoidosis of Long Island Founder/President- RareNY Frank Rivera founded Sarcoidosis of Long Island in 2012. In 2011 Frank was diagnosed with Sarcoidosis after being misdiagnosed with lung cancer for 7 years prior. Since opening Sarcoidosis of Long Island he has been a local, state and federal advocate for Sarcoidosis to raise awareness for Sarcoidosis in the government sector. He has also spoke at two Congressional briefings for Sarcoidosis. Frank is a National Ambassador for Foundation for Sarcoidosis Patient Ambassador for Illumina Frank organized RareNY in 2016, to raise awareness for Rare Diseases in New York. He organized “A Day for Rare Diseases” in October 2016 in New York with Global Genes. The event raised awareness for all 7000+ rare diseases to the public.

2 thoughts on “My Dedication to My Sarcoidosis Brother Rodney Reese”

  1. I am so so sorry for your loss. We have lost so many these past few weeks that it is imperative that Sarcoidosis is listed as a rare Disease. I am now battling Stage 4 Metastatic Breast Cancer on top of it all. Today isn’t a good day for me but I am a Warrior. I will keep you in my prayers as well as Rodney’s family. Peace and blessings to you always,
    Marilyn McNeill 🙏🏽💜❄💜❄💜❄

    Liked by 1 person

    1. Marilyn,
      I am so sorry to hear about your breast cancer. My thoughts and prayers are with you. Thank you for your kind words. Sending you much love! ~ Frank

      Like

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