Lessons from a CF Cornerman by Raymond L. Poole

When you realize that someone’s disrespectful actions will continue, address them head-on.To stay motivated, maintain a vision of the future you want and try to imagine living it.Be aware of the mood and try to affect it in a positive way.You never know when something as simple as a single call can change everything. If you feel like you’re losing, keep fighting.The risk of being too hopeful then getting let down is a better option than expecting something miserable from the start.Be aware of it, but know that you can dig your heels in. There’s a thin line between telling nurses how to do their job and advocating for a loved one.Those who are not there do not need to know every detail in real time.Particularly, try not to complain to them. A failure today may be a blessing in disguise. Don’t be discouraged if you fall short.If you want them to help you stay positive, show them how. People will respond to what you provide.Try to recognize when and how you are needed the most. There is no way to do everything for someone else all of the time.Sometimes there is little value in setting the record straight. Be aware that when you get something off your chest it could end up on someone else’s shoulders.Plan for the worst, plan for the best, and plan for everything in between.Make the time to maintain an exercise routine.A full night’s sleep, whenever possible, must be a priority.

Writing down your thoughts can provide the impetus you need to move on.Look for those things that bring joy and make them a part of your routine.Listen to what your loved ones want, even if it is not what you want for them.Every day may not be a good day, but recognize that it is good to have that day.You have to celebrate the small victories because they add up to big victories.You will only demonstrate that you lack empathy. There is nothing to be gained by comparing your pain with the intent to prove you are suffering more than others.Do not take the worries of others onto your own shoulders.

Understand that things may not be as bad as they seem in the moment, give it time.

Two steps forward and one step back is still an improvement.

Do not mourn for somebody that is alive.

Sometimes the best way to take care of someone else is to also take care of yourself.

Ask a lot of questions and understand that you provide value even if you are not a medical expert.

Pick your battles but argue for the things that matter to you it is better than holding a grudge.

Sometimes you have to trust your instincts, take a risk, and not focus on the worst that could happen.

To kick of cystic fibrosis awareness month I wanted to share the full 38 lessons I chronicled in my book “ Lessons from a CF Cornerman.” Though they are from a very personal experience, I feel they are universally true.

Lessons from a CF Cornerman by Raymond L. Poole