Featured CAMPAIGN: mISSISSIPPI rIVER sWIM
|Lil & pals at the Long Battle for Nicky gala in July 2010.
The fundraiser created momentum for Lil's swim in
September and raised over $40,000 for PH research
and patient services.
Winter 2011 Pathlight Feature Interview
September of 2010 forever changed the course of PH patient Lil Long's life, as she triumphantly swam the width of the Mississippi River near her hometown of Duncan, Miss., in memory of her best friend Nicky Roberts.
We asked Lil to reflect on the experience for the cover story of the Winter 2011 issue of Pathlight, PHA's quarterly newsletter. We're now pleased to offer the full interview transcript online!
As a PH patient, what made you decide to tackle this challenge of swimming the Mississippi River?
Lil: I was upset from the beginning of Nicky’s illness. The doctors were poking and prodding her and nothing, of course, worked. I went online and couldn’t find anything much about this disease that was suddenly taking my best friend away from me. And then, in a blink, she was gone.
Nicky was a very flamboyant person and was a great event planner and one night [after my own diagnosis] she came to me in a dream, telling me to get out of my damn chair and fight this illness that she couldn’t. That’s when I built my pool and started swimming, three minutes the first time to sixty minutes in a month. I went on a very low sodium diet and immediately started feeling better. Always in the back of my mind was how I could honor Nicky in some way befitting the way she wanted her funeral to be.
Then one day while I was in my pool, my husband, Henry Earl, brought a friend over and told him I was swimming so far that he thought I could swim the Mississippi River. And from there the idea hatched; the biggest undertaking I could imagine in honor of Nicky. I could finally give her her due. My guilt over her funeral would be appeased and maybe I could move on. My grief was overwhelming my life!
How long did it take for you to prepare for your swim? What methods did you use to prepare for the swim, both physically and mentally?
Lil: The mental part was easy. I made up my mind and it was going to be. The physical was a whole ‘nother animal. I was in congestive heart failure, but the doctors assured me a “little” exercise would help. I installed a Badu jet at the end of my pool. It creates a current so you can swim in place. I really wasn’t very serious about it until the idea to swim the river took shape in April, 2009. But after that, there was no stopping me.
It was frustrating in the winter of ’09, because it cost so much to heat the pool. I tried wetsuits and simply freezing….anything to stay in the pool. Then came the real tragedy; I slipped and tore my knee up so badly I had to have total knee replacement surgery in February, 2010. I just knew my dream was over. I was devastated. I had to go to intensive care. I had to have two blood transfusions. I was in pitiful shape. I was in the hospital for ten days, then sent to a nursing facility and told I would be there six weeks. But, God, He does work in mysterious ways. I cried all night the first night, called my husband at 6 am and told him to come get me!
Three hours after getting home, I contracted one of the worst stomach viruses I had ever had. Well, I am here to tell you, I never had the first physical therapy. After running back and forth to the bathroom on a walker, I declared myself healed. My orthopedist was amazed. My first question to him was, “When can I get back in the water?” As he was taking my staples out he told me to wait a week. I came home, doused the pool with enough chlorine and salt to kill any moving germ and started swimming again. I had never felt so alive!! I started all over again and before long I was back up to sixty minutes.
At what point did you decide to factor in PH fundraising into your plans? What approach did you use?
Lil: As soon as I decided to honor Nicky, I wanted PH to be the focus because it was so obscure and I wanted to bring attention to it. I was asked all the time, “What did Nicky die of?” I always answered PH and people would say things like,”Yeah, that high blood pressure will get you every time!” You get tired of explaining it over and over.
Then I found out I had PH too and it was the same scenario, explain, explain, explain. I thought, man, there’s got to be something out there somewhere that can explain this in simple terms so that people could understand. So, I did what everyone else does and went straight to Google. I had the good fortune to type in “Pulmonary Hypertension Association” and BAM, there it was.
Lil and Anne Martin
raising PH awareness
at a local Kiwanis Club
You raised a ton of awareness through the media – and very successfully! What was it like doing your first interview with the media?
Please share any beginner’s advice for other patients who would like to share their story/raise awareness of PH in the media.
Lil: I was lucky enough to have been an event planner too. That’s how Nicky and I met, so she and I both knew people in the media. I have done a lot of television appearances, so I wasn’t nervous about that. I was nervous, however, about saying the right thing. So do your homework and know your subject matter.
I also had met and become fast friends with Anne Martin, a local anchorwoman and producer for WXVT, a CBS affiliate. She really started the blitz! My best friend, Alice Murphy, also an event planner, stepped right in and [got print media coverage]. She’s the one who decided the event should be split [into a fundraiser in July, followed by the swim in September].
Morning shows in your area are always looking for interesting stories and it's better if they are upbeat. Nobody wants to watch a show at 7am and cry all day long. It has so be sensational or inspiring or, like my case, just downright determination to get their attention. Let the media know that they are doing you a great favor by getting the word out about this little known disease. Put the monkey on their back.
What was the last thought that ran through your mind before you officially set off on your swim?
Lil: If it was my time to go, I was ready. And if I DID go how much more money would be raised!! Ha!
What were your first thoughts when you successfully arrived on the opposite shore?
Lil: That I had finally accomplished something I had trained a year for. That if God gave me the strength to beat the odds of making it across the mighty Mississippi, I must still be here for some reason. That Arkansas mud had never felt so good. That Nicky was jumping up and down and screaming “Good job!!” That my children wouldn’t have to be mad at me because I died during the swim…so many thoughts ran through my head at once.
What was the most memorable moment of the swim?
Lil: Things I will never forget: Seeing all the guys with t-shirts on that said GO LIL GO on them. [PHA Board Member and Episcopalian minister] Steve White giving me communion and us having a tearful prayer together (he lost his 22 year old daughter to PH). The calm that came over me as I eased into the water, and the snake that did a 180 around my knee [mid-swim]. The trouble breathing on the last eighth mile, me rolling onto my back to give up and seeing my son yelling, “you’ve got it now, Mama” and rolling back over to keep going. The tearful eyes of EVERYONE in both boats, the screams and shouts of joy.
How long did your swim take from shore to shore?
Lil: I am proud to say that it took a tri-athlete to swim in the same place in 25 minutes and I swam it in 27 minutes. I have a friend who has always competed with me who swam it two weeks later in 53 minutes (teehee).
What did you do to celebrate?
Lil: Well. I had what I called The Catfish Lil Revival on the bank of the Mississippi River. This was really where I got to do something that Nicky had wanted at her funeral. I had a choir that came from Jackson, Mississippi, in a storm, in a broken down van, that got lost, that sang gospel music all afternoon. The storm clouds parted when they finally got there, they sang, we all ate catfish dinners, I drank champagne and the minute we got packed up and pulled away the rain started again. EXTRAORDINARY!!!!
I went to bed at 4:30 pm and woke up at 6:30 am and yelled to my husband in the den, “I SWAM THE MISSISSIPPI RIVER YESTERDAY!!!” and smiled all day. Then I rested and went one more down my bucket list to California to see the Giant Redwoods. MAGNIFICENT!!
As with any challenge in life, it’s hard to tackle a difficult task like your swim by yourself. Who and/or what was your support system throughout the process?
Lil: Friends, Friends, Friends. My friends never let me quit. They all knew if they did, it would be the end of me. It started with Alice Murphy, who was in the pool with me when I made the big announcement. She never checked up. She just said “OK, when and where?”
Then my husband, after finally deciding I was serious, got behind me 100%. He really is my hero through all of this. He never fails to be there for me.
And, of course, PHA kept in touch, guiding me through a lot of difficult moments and steering me in the right direction on the technicalities of doing a benefit. They became extended family.
And speaking of family, my children were a real driving force. My son, who thought I was crazy, but wouldn’t let me down and my daughter who had to reassure me over and over that my son wasn’t really mad at all, just worried. She majored in psychology, so she’s my full time shrink. She told me from the very beginning to go for it. She understands me.
It’s hard to believe, but it’s been over two months since your swim! Looking back, what does swimming the Mississippi River mean to you at this time?
Lil: She [the river] still means unbelievable power and unpredictability, but I feel that along with her now. Where I used to fear her, I draw strength from her. She’s a kindred spirit.
Do you have any future awareness raising plans on the horizon?
Lil: Well, I really didn’t until I learned about PHA’s legislative advocacy programs like the annual Congressional Luncheon in November. Now, that’s right up my alley!
I did invite PHA to go along with me down my bucket list. Next year’s pick is to go to the Kentucky Derby, Belmont Stakes and Preakness. Maybe I’ll wear the greatest hat and get media attention and tell the world about PH. Who knows what’s on the horizon? I DO know that wherever I go and whatever I do, it will be in the name of PH.
Is there anything you’d like to say to your peers who are living with PH – words of encouragement or advice?
Lil: I’m not always upbeat about this card I’ve been dealt. Believe me, I understand your frustration and depressions and fears, but if you have the courage to get out of bed every morning, you’re more than half way there. I say if I can just keep putting one foot in front of the other, I can keep going. Do even small things that you think you can’t and then take the time to celebrate those moments. And, for heaven’s sake, throw away the guilt! You’re sick. It’s not like you chose to be. I was on one of those awful carts in the grocery store the other day and some woman looked at me and said, “Now that’s what I need” and I said, “Honey, just be thankful that you don’t”.