Wednesday, July 3, 2013

Some Feathers May Get Ruffled

Ever so often, I'll write a blog on here that will ruffle the feathers of some in the CF community. It's rarely, if ever, intentional, and my intent is never to upset my readers or make them feel bad. It's something that goes along with the territory I guess. I think an ex-preseident of ours said it best: 
“You can please some of the people some of the time, all of the people some of the time, some of the people all of the time, but you can never please all of the people all of the time.” Abraham Lincoln
Another thing that goes along with the territory is negative responses from some of my readers. These include, but are not limited to - personal attacks, attacks on my family, unfounded accusations and attacks on my faith. 

Fortunately, the positive reactions outnumber the negatives ones about 100 to 1. I always keep that in mind when someone decides to take it upon themselves to try and "hurt me" because I "hurt them". 

I'll tell you what the best medicine is though, it's getting responses like the one below to my blog yesterday:
Mama: Hi Ronnie, I just want you to know we are so grateful for you and how encouraging you are! [Son's name] is doing his treatment that he does not want to be doing and read your post about how you did not do your treatment like you should of and he said, "Man, mom, Ronnie is so encouraging!!!". Thank you sooooooo much ! 
Me: I'm so glad that he can find encouragement from some of my posts. My hearts desire is that others, the next generation, learn from my mistakes and don't make the same choices that I did. If I can change someone's life as a result of my stupidity, I'm glad to do it. Thank you for sharing that with me. Made my day!!! 
Mama: Are you kidding, you just helped me stop nagging, I get tired of hearing myself, too.
That's EXACTLY why I do what I do. I've been very upfront about all of the bad choices I've made. I talked about the different tricks that CF can play that I fell for hook-line-and-sinker. I write because I hope that people like the Mama above and her son are reading. I hope that something I say can help them make better decisions than I did growing up. Simply, I hope that the next generation treats themselves much better than I did.

I'm often reminded by this quote of a fellow cyster in the community that I think put it best:
"I wanna help as many CF'ers as possible. It's therapeutic to think my failure could be someones success." - Michelle Matta
I love it. After hearing that, I just knew that she had to write a guest post on RSBR, which she did, here. I reminded her however that failure only happens when we give up and it's an outcome of deciding not to try. Both failure and success comes in many forms and is different for each person involved. Fortunately, I've rarely seen anyone in the CF community flat out fail!

Lastly, I'd just like to thank all of you who send kind notes, emails and encouraging comments. You keep me going. I'll continue to write as along as there are people out there who will read, and hopefully, leave this blog feeling encouraged, motivated and/or inspired. 

I've come to realize this -  The feathers of my generation may get ruffled while I encourage the next generation to fly higher and straighter at any cost.

Comments (21)

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Ronnie: Just to reiterate, your blog is SO inspirational. I showed my CF hubby the most recent post at issue because I couldn't believe the negative response. Being a Non-CFer myself I thought he might offer a different perspective. He responded that he felt sorry for the people who took something positive in a negative manner. But perhaps the best feedback I got was when he saw that your FEV1 had increased to 75% with exercise. My CF hubby is 35 with a full time job, a 2 1/2 year old and a new one on the way so he is quite busy as well and sometimes exercise falls through the cracks. We agreed to regroup this weekend and get back on track with our exercise program. THANK YOU!!
1 reply · active 613 weeks ago
Thank you so much for this! I myself was surprised at the reaction by some. I honestly didn't see it coming. Anyway, hop back on that exercise train and get ready for the ride!!!
I tend to disregard what seem like trolling comments, especially when they don't take an extra minute to double check their grammar and spelling. That's usually a pretty good giveaway. Keep at it, Ronnie. You're doing well.
1 reply · active 613 weeks ago
Thank you Lindsay. I think sometimes emotion can get the best of people and the last thing they think about is their grammar and spelling.
Guest Troll's avatar

Guest Troll · 613 weeks ago

Its not WHAT you say its HOW you say it FYI. What you write can be inspirational, but sometimes the way you come across is egotistical. No one is doubting that you brought your numbers back up to almost baseline. No one is denying you work for it. What some of us of "your generation" feel is that when you write, you act like everyone should be able to do it, and if they can't it's their fault. Inspiration is a necessary part of the CF world. Personally I don't look to you and your numbers for inspiration, but my goals are different than your goals. If people want to look to you, that is their prerogative, as long as they know you aren't the end all be all of CF education. There are tons of CF blogs out there that "bare it all" as well. You are ONE example of life with CF, and sometimes, OK a good portion of the time, we older CFers feel that you are giving a wrong view of CF to the moms out there. By wrong I mean that you are the typical case. And maybe as time goes on you will be, but it breaks my heart when parents think their kid is going to be just like you, then pass away at a young age. You are in your 30s correct? FEV1 of 75% in your 30s is NOT typical. There are people with it of course, but a good portion of patients are already transplanted by that age. So while you may be giving hope and inspiration to some, you piss off the others who can't make it to 30 with great lung function when you blame them for their deterioration.

Don't worry Lindsay I made sure to double check my grammar and spelling just for you.
THE TROLLIEST's avatar

THE TROLLIEST · 613 weeks ago

Your Christ-complex is delusional, man. you are not being persecuted and you are not the CF Jesus. Get a therapist and bring up the topic of narcissism for session one. It'll be money well spent. If you think I'm criticizing Christianity, you're wrong. I"m Catholic. We are, you know, the ones that made up this whole Christ-figure thing you got going. I disagree with your manipulation of the facts of Christianity to serve your narcissism, the anonymous benefactors who pay your salary (who funds Cystic Life again? Oh right, that isn't disclosed), and your misinterpretation and actual lies about medical facts. So nail that to your cross Ronnie. You can be the CF Jesus. I'll focus on the real one.

And in terms of spelling and grammar, some of us might type faster than we think, but let me assure you, my education could lap yours, even if you are running.

bp
7 replies · active 613 weeks ago
Mandi Sharpe's avatar

Mandi Sharpe · 613 weeks ago

CysticLife is supported by a CF dad who has chosen to remain anonymous. His contribution is supplemented with promotional posts on the site. Ronnie hasn't answered who pays his salary because he draws no salary from CysticLife. The only paid employee of CysticLife is the web developer. No one else draws any salary. Ronnie volunteers 100% of his time.
Mandi Sharpe's avatar

Mandi Sharpe · 613 weeks ago

And if you must know - for full disclosure - we actually lose money every year, paying several things out of pocket.
You shouldn't feel like you have to explain yourselves Mandi. You and Ronnie have done a lot for the CF community, and as you know, there will always be someone who won't like you and feels like they have to complain! God bless you and Ronnie and McKenna!
If you don't like what he is writing, than why read it? And why bother to comment? If you just want attention for yourself (and talk about narcissism!), start your own blog!
Because what he is writing is insulting to other CFers/CF parents AND it's very often medically inaccurate (such as denying the degenerative nature of CF.) He's spreading harmful misinformation and that shouldn't be allowed to stand unchallenged. I don't typically comment but I couldn't keep my mouth shut any longer when I read his post a few days ago.
If the blog is insulting to CFers/CF parents, I would certainly expect to have dwindling readership. Please point out the times I present stuff on here that's medically inaccurate, since it's very often, I'm sure you'll be able to give me countless examples (and I'm not even claiming it doesn't exist. When you blabber as much as I do, it can happen).

I've never denied the degenerative nature of CF (or life), however, I do, and I will continue, to make the case that CF doesn't always get worse no matter what and the stuff I choose to do each and every day will have either a negative or positive impact on my health.

Thanks for reading, and please, continue to comment!!
Traci Johnson's avatar

Traci Johnson · 613 weeks ago

I'm really sorry you're such an unhappy victim in your life. It must suck to be you, walking around in life feeling the need to attack people. If you don't like Ronnie's posts...CF related or his religious posts, then stop reading. The mere fact that you are reading his posts and commenting speaks VOLUMES!
Traci Johnson's avatar

Traci Johnson · 613 weeks ago

I am cracking up at some of the attacks on you, Ronnie (and Mandi). Wow, some people really have no life and must live every day in negativity and anger. A lot of things happen in life, good and bad, we better learn from our experiences, grow and move on. Otherwise, we become bitter and very unhappy (apparently there are many of those people here. The more they argue about it, the more obvious it becomes). And trust me, anyone who wants to comment that they've had it harder, more difficult, more loss, etc....go for it! You don't know me or my life.

Ronnie and Mandi - I'm so glad to know you both and be able to call you friends. I know who you REALLY are...from personal experience and from Marisa. You are both loving, kind, helpful, inspirational and true examples of great human beings!
1 reply · active 612 weeks ago
Incogneedles's avatar

Incogneedles · 612 weeks ago

Good to know if you disagree and choose to speak up, you are attacking and live in negativity and anger. Maybe you could stand to learn that having a different perspective is human... but I guess that just makes me bitter and unhappy that I find some of Ronnie's blogs dangerous and offensive.
THE TROLLIEST's avatar

THE TROLLIEST · 613 weeks ago

It's funny that because I disagree with Ronnie, you have characterized me as an unhappy victim. I am a highly successful, very happy person. I just think Ronnie is full of it. You can characterize me any way you want, but I haven't ever said I have a "harder, more difficult life," I have said that many CF Families live more complicated lives (financially FOR ONE) than Ronnie does, and that not everyone has his advantages. Some people have to have a job, for example. Some people have problems with their insurance, for example. Some people live in areas where the CF care is not that great, for example. Ronnie doesn't speak to that, does he. No, he tells you, Run and do your medicines and Christ will make you well. That is an overly simplistic view.
I read your blog when I get a chance and always keep it in mind for positive advice at times and plan to go back to some as Aidan gets older. As a parent to a child diagnosed at birth and now 8, I have to agree with some of the comments about the overly simplistic view though. This disease is frigin hard and we are very happy, positive successful people. AIdan lives a normal life and active life but without a huge support system, this disease would have sunk us - financially first. I even felt like the doctors lied to us..They said 'bumps in the road'. Bumps in the road?? How about thousands of dollars out of pocket every few months?? There is no way to take great care of a kid with CF without having the financial stability to do it. We qualify for no programs and work our butts off to make all his co pays and pay for extra sports and stuff to keep his lungs active. It's so draining. He misses 60 days of school a year. Without my family to babysit him, I couldn't keep my job. He has constant surgeries, multi drug allergies, port issues....and he's only 8. His friend is 8 with CF and despite hours of treatments every single day, he has lung function in the 60's. When his parents read others' blogs about how they must not be doing enough, it pains them greatly because they are doing everything. So I've learned to read everything with a grain of salt and remember that everyone is on a very different CF journey despite having the same illness.

I do what is right for my guy....He hates CF with a passion, he will never see it as a blessing and I know the progression of this disease is real despite our best efforts. But I also know he lives an amazing life, there is nothing he can't do and we will just live for today- the today that God has granted us. He does his treatments but it certainly doesn't keep him from doing the things he loves. We believe in balance.
Guest Troll's avatar

Guest Troll · 612 weeks ago

Troll:
"One of many unsung internet heroes who are almost entirely misunderstood. Contrary to popular belief, many trolls are actually quite intelligent. Their habitual attacks on forums is usually a result of their awareness of the pretentiousness and excessive self-importance of many forum enthusiasts. As much as people may hate trolls, they are highly effective - their actions bring much of the stupidity of other forum users out into the great wide open."
Hi Ronnie and Mandi,

I know you've taken some hits on your blog lately, so I wanted to reach out and tell you I appreciate all the time you take to write your posts and maintain this site. I know it's a labor of love.

I remember some controversy a couple years ago between some CF moms and older CFers who felt we were denying our children the truth by not telling them they would one day die from CF. I have never, and will never, tell my 4-year-old CF child that he's going to die from CF because I just don't know that to be true. I simply don't know what the future hold for him. All I can do is encourage him to live life to the fullest and to do his treatments every day.

CF affects everyone differently and everyone has different perspectives on it. I don't hold anything against these adult CFers because I know their life experiences are different then mine and they grew up in different times. I believe there is so much more hope for children born with CF today then there was 30 years ago. Therefore, we may see things differently. Such is life.

I may not always agree with your perspective but I don't believe your blogs are dangerous. The internet is filled with opinions and advice, and if I got offended over every post or article written that I didn't agree with, then I'd go crazy. I have enough sense to take what people say with a grain of salt and if I don't agree, move on. If people find your posts so dangerous, then they should probably stay off the internet all together because it's full of opinions and bad advice. You just learn to filter through it.

Keep doing what you guys are doing. You are an inspiration. XOXO
1 reply · active 611 weeks ago
We appreciate the kind words Margaux. Making some people unhappy is something we knew that could happen when we got into this and started sharing our lives, feelings, thoughts and opinions with the CF community.

Despite some negative feedback once in a while, we wouldn't change what we do for anything :)

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