Featured Campaign: Mississippi River Swim

Mississippi River swim

Read the Winter 2011 Pathlight
feature interview

View Long Battle for Nicky
media coverage

The Long Battle for Nicky Gala Photo Album

To kick-off the final weeks leading up to the big day of the swim, Lil hosted an awareness-raising fundraiser, The Long Battle for Nicky in Cleveland, Miss., on July 31, 2010. 

The gala drew nearly 200 guests, featuring live and silent auctions, plenty of great food, and music from the Jimbo Richardson Band. The Long Battle for Nicky gala raised over $40,000 for PH research and PHA's patient and caregiver programs - setting the stage for a swim that signified a transformation of hope into reality.

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Lil's Journal Excerpts

Aug. 15: Trial Run | Sept. 8 | Sept. 9 | Sept. 10 | Sept. 11: Swim Day

August 15, 2010: Swimming the Mighty Mississippi River - Trial Run

It broke my goggles; it tore my snorkel away from my mouth. My nose clip nearly drowned me because I couldn’t get enough air. In other words, everything I thought had prepared me for over a year was useless. My heart was pounding I guess as hard a heart can pound. I swam in circles for fifteen minutes from being so disoriented I didn’t know up from down. That current is a powerful force to be reckoned with.

When I finally figured out what all I was doing wrong, I grabbed the boat (I was swimming with no life jacket or tether) and had to rethink everything I had learned.

First of all, you CANNOT keep your head under water and swim the river, thus the disorientation. Second, you have to spend money on a very good pair of goggles. You cannot do completely without them because my left eye where my goggles broke is almost swollen shut with sand! Third, keep your eyes on the prize, the other side! Fourth, if you ever get a little over halfway across, the current starts to help you instead of hinder you. It will begin to push toward the other side. And, most of all, fifth, stay calm! It’s hard to breathe when your heart is beating 90 miles an hour!

When I figured all of this out, I finally started getting somewhere. If I hadn’t spent that time going in circles, I probably could have made it three fourths across a very swollen river.

Next time I’ll be calmer. It didn’t help any that right before I went in the water the Cap’n and a media guest saw a four foot alligator, gar! I really did NOT want to hear that.

When I got to the middle, I paused to look around. I absolutely could not believe that I was in the middle of that great river of ours. It gave me hope and I felt Nicky all around me. I was completely awestruck.

September 8, 2010

In three more days, I swim the river. says the gage will be at 10.8. When I did my trial swim, it was 17.8. So that’s on a good note. On a bad note, a man that worked for Jantran fell off of a barge last Thursday and guess where they found him Tuesday? Yep, you’re right! Catfish Point; exactly where I’m swimming. Now, I know the river moves on but still I can’t help freaking out a little bit!! Give me a break. My father passed his superstitious mind down to me and I’m wondering...Is it an omen?

I freaked out so much that I called the local ambulance service and they are going to have an ambulance at the top of the levee on standby. I wasn’t going to tell anyone but of course I blabbed and told [my husband] Henry Earl. He told me I was being utterly ridiculous and then changed his mind and said he thought it was a good idea. I don’t know which statement freaked me out more! I’ve asked Rev. Steve to give me communion before the swim and he told me he would be honored. I can’t tell anyone that I’m really frightened out of my mind!! Henry Earl said, “Well, if you’re scared, call it off.” Like he doesn’t know that I’ve put more of a year of my life into this thing. What kind of chicken would I look like if I backed out now? It’s not that simple!!

As of right now, I have 130 people coming to “The Revival” alone, not to mention a four man documentary crew from New Jersey and a representative from Actelion. Anne Martin (anchorwoman for WXVT), Joellyn Sullivan, as my nurse, my son Battle to pull me in the boat if need be, and Steve White, who lost his daughter to PH in 2002 and is a board member of PHA, in a boat. I have a LOT of people counting on me! We’ve made $43,000 so far and this documentary crew is making a film that will go down in history for PH. Imagine the people this could reach! This started out all for Nicky, but evidently it was God’s plan to make it snowball and I can leave this world now knowing I’ve done something with my life that is good.

It is important to me that my children and grandchildren know this. I’ve spent most of my life as a single mother. I worked all the time and a wonderful woman named Stella Anthony (Seel to us) raised my children. My first husband deserted them when they were 5 and 1, so I worked. I never said a bad word about him and never took him to court, but I had to work three jobs. I wrote for the local paper, was a teller for the bank, and worked in a restaurant three nights a week and went to college two nights a week. My children never saw me and they are a driving force for me to do something good so that they can be proud. That’s why I’ve got to swim and that’s why I have to get ALL the way across.

September 9, 2010

Two more days...I have to admit that sometimes, I wish I had just gone and jumped in the river with nobody around. I know there’s nothing stronger than that river around here and I will draw my strength from it once I’m across. I can keep telling myself that if I can fight my way across that river, I can fight my way through anything. But it all snowballed and I saw that God had a bigger plan for this event.

I’ve had some fluid retention the last few days that is worrying me somewhat. I was told NOT to swim for four days before the event, but it’s already been four because of weather. Speaking of weather, I have no "Plan B" if it rains. There is a 30% chance. They usually come late in the afternoon this time of year. I hope that is God’s plan Saturday.

Instead of getting more nervous as the day approaches, I actually feel calmer. It’s like that time I was in an emergency landing with one engine on fire. We had to go through the “hunker down” process. At first, the panic just overwhelmed me. Then when I realized it was totally out of my control, calm came over me that was so sweet. I don’t think I’ll ever forget that feeling. I think I’m having it again.

September 10, 2010

I spent all day getting ready for Doug Miller, Steve White, Gareth Gwyn and my friend, Joellyn Sullivan, a cardio physical therapist. I cooked shrimp fettuccini Alfredo, salad with my own homemade dressing, and brochette. They all arrived at the same time and after introductions all around, we fell into comfortable conversation and by the time they left, I felt I had known them forever. I’m so glad I got to meet them tonight and we wouldn’t be total strangers tomorrow. When I found out Steve lost a daughter and Doug lost his mother to PH, I added them to my “swim list."

September 11, 2010: Swim Day 

The alarm went off at 5 a.m. There was just that second that I forgot what day it was. Then it hit me! I’m swimming the mighty Mississippi River today!!!! There wasn’t much time to get nervous; what with gathering everything we needed, taking meds, eating breakfast.

Before I knew it I was in the truck driving toward our destination. We met my son, Battle, who was going in our boat. At first, he told me he thought I must have lost my mind and he didn’t want any part of it. When my father died right before Nicky, my “rock” shifted from my father to my son. It was a subtle shift, really without me even knowing it. He didn’t like what I was doing, but I knew in the end, he would not let me go without him.

One of my best friends, Joellyn Sullivan was also with me. When I’ve seen a new doctor, she’s the one who translates to me what the doctor really said. She is very organized, has a memory like a steel trap and would fight a tiger for me. She has an extensive medical background and was the first person I called to be in my boat.

Then we met Anne Martin at a specific destination. Anne and I met about a year ago and became instant friends. She has been the driving force behind all of the publicity I’ve gotten. She has believed in me since day one and has been a tremendous help in creating excitement for the event.

My stepson, Justin, was in charge of bringing Steve, Gareth, and Doug. All of them commented on how polite and informative he was. Justin and my step-daughter, Kattie, are like my own. I love them simply because they gave me the chance. They have been behind me every step of the way and have never failed to encourage me.

We got to our destination and for one split second, my heart went pity pat and then the gang met me at the truck and it all started moving fast again. They were all too cute in their red “GO LIL GO” t-shirts! How sweet!!!

We went down Lake Whittington and through a chute with jumping carp everywhere. They are a type of fish that jump straight up in the air because the sound of a boat motor agitates them. In fact, Gareth got hit by one on the way back in. Then suddenly the chute opens to the vista of the mighty Mississippi and you suddenly realize the danger of what I’m about to undertake. There are swirls and eddies everywhere and huge logs that have been uprooted and carried down the river and my first thought was, "Nicky what have we gotten ourselves into this time?"

We get to the “starting” point and Doug is asking me questions. I suppose I answered them, but I don’t remember because the other side of my brain was working on strategy. Don’t get me wrong, Doug wasn’t imposing. I just don’t remember what he asked. Then I asked for a moment alone with Rev. Steve White. I took communion right there by the river and he blessed me. We both were extremely emotional having both gone through our own ordeals, but I felt God with me more than I ever have before and I felt my determination build.

Then I had a moment of alone time. I listened to Nicky’s favorite song, "You Raise Me Up" and thought of her. Mostly I thought of my children, and that if something happened to me, for them to please try to understand why I did what I was about to do and to feel proud and not angry. I hoped that they would tell my grandchildren about their brave (instead of crazy) grandmother who swam the river for a good cause. I thought about my husband who has been beside me every step and last but not least, I thought of my mother; praying that before she leaves this earth she would learn how to love unconditionally.

It was time to get in the water. I started swimming slowly and calmly. Everyone was really quiet and the longer I swam, the more personal it got. I thought of all of the people going through this horrible, unknown disease that were past the point of doing something like this; how they are the real heroes. They live and breathe everyday with hope and determination and go to meetings and appointments when they don’t feel like it just to see if there are any new medications to make their lives easier.

About half way across I’m came crashing back to reality when something long and slimy wrapped around my leg and then slid off. If you ever see the documentary, you will see me roll onto my back and fall out laughing. Thank heavens I didn’t look tasty enough for whatever that was!

Then just as great as I started out, everything changed. The water got choppy. I couldn’t get my breath. I hit my inhaler, which seemed to do no good. I really thought I would have to give up. It was only another eighth mile but it looked like ten to me. I looked at my son and he said, “Mama, you’ve got it now.” So I literally gritted my teeth, quit looking at the other side and swam...kinda like a runner who finds that last ounce of adrenaline at the end of a race.

The next thing I knew my hand hit that beautiful, wonderful mud of Arkansas!! And I burst into tears. Everyone in the boats was clapping and yelling. I haven’t felt anything that joyous since I had my babies. Everything I had worked over a year for and all the support and help just came to THAT point, THAT moment and it all just came bursting out of me.

I was so pumped up on adrenaline that I didn’t even know I was tired. All I could think about was if I could conquer the most powerful thing in our part of the country, I could conquer anything. There’s still life left in me and I’m going to live it! My husband was crying right along with me, because as my caregiver it has been very rough on him too, maybe even more so.

Doug asked me some more questions that I must have answered, but do not remember, then we headed back to Lake Whittington. That’s when Gareth got hit by the flying carp!

I slipped away long enough to get a much needed shower and a bottle of Champagne, then on to the “Revival." When I arrived, the “team” met me at the truck and then I was bombarded by clapping and hugs and congratulations from all of my close friends and children. I can’t wait to see what they had to say when interviewed!!

The choir almost had a head-on collision en route to the revival and it shook them up so badly, they pulled over and prayed. Then when they met the lady who was to lead them out there, the van they were in broke down. Even with all the bad luck, when they did finally get there they were amazing. Nicky had wanted a choir at her funeral and she finally got one. They were everything we thought they would be.

By two o’clock I was a zombie. I could have laid on the ground and gone to sleep. My husband took me home and I went to bed at 4:30 p.m. and woke up the next morning at 6:30 a.m. And when I did wake up, I was sore from my head to my toes. But I was ecstatic! I yelled out three times to my husband in the den, “I swam the Mississippi River yesterday!!” I spent the day remembering every single little thing and saying my goodbyes to Nicky. I’ll miss her for the rest of my life, but it’s time to move on with my new friends and live what life I have left.

Thank you, PHA, for being there for me through every minute of this very emotional journey in my life. Y’all are the best!


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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.