My Life Isn’t Over Yet

My Life Isn’t Over Yet

Just breathe, passionate help for the PF journey

About two years ago I had a very touching experience. I had retired from my counseling practice of 30 years. I was part of a group of 10 wonderful therapists who were good friends as well as colleagues. Once a year we went on a retreat to a beautiful place and enjoyed good music, delicious food, and each other’s company.

(Photo by Kim Fredrickson)

Two years ago was my last retreat, and we went to the coast of northern California because I couldn’t handle the high elevation of the Lake Tahoe mountains. They allowed me to choose the menu and each of them chose a song to dedicate to me.

After a delicious dinner we all sat down together, and each person played a song that reminded them of me or was intended to encourage me. I was overwhelmed with many emotions and grateful for all the love and support and grieving for having to leave this wonderful group because of pulmonary fibrosis.

My disease had progressed to the point that my portable oxygen concentrator could not accommodate my oxygen needs — 6 lpm, sitting, and 8 lpm, walking. I was so sad to have to retire due to my disease. I loved being a therapist. I felt like my career and ability to bring hope and healing to others was over. I was racked with grief.

Touched by a song

Each and every song touched me, but one particularly stood out: “Fight Song,” by Rachel Platten.

Its lyrics include the following:

(Courtesy of Kim Fredrickson)

“This is my fight song
Take back my life song
Prove I’m all right song
My power’s turned on
Starting right now I’ll be strong

I’ll play my fight song
And I don’t really care if nobody else believes
‘Cause I’ve still got a lot of fight left in me.”

After we had listened to the song, my friend Ken said to me, “It’s not over yet.” I said, “It’s not over yet?” He said, “No, it’s not over yet.”

It really touched my heart deeply, because I had felt like it was over. I’d retired from my counseling practice, and I had finished teaching a master’s level therapist course for a local graduate school. I LOVED what I did, and I was good at it.

Still able to have an impact

Those lyrics and Ken’s words sparked some life inside of me and started a transformation. I thought that maybe I could still have an impact on others but in a different way. I had a book coming out a few months after the retreat. I started a blog about how to be a compassionate friend to yourself as you walk through the ups and downs of life. I did some speaking engagements and book release parties while sitting down and using supplemental oxygen. It was a challenge to make it all work, but it did work. It felt so good to be still able to use my gifts, albeit in a very different way.

Six months after the retreat I was contacted by Pulmonary Fibrosis News and asked to write this column. I’ve been doing this for a year and a half, and I feel blessed to be able to have a positive influence on fellow patients and caregivers. It is a pleasure to write this column, and I am grateful to do so.

(Photo by Kim Fredrickson)

I had a second book come out six months ago, and I’ve continued writing my blog, Self-Compassion for Real Life. Although I can no longer do public speaking, I have so many things I want to accomplish with the time I have left. I’ve completed a lot of personal projects around the house, with a lot more to go. Everything takes 10 times longer than it used to, but I just keep going.

One experience that I’m sure we share is having to say goodbye to careers, hobbies, and activities we love. You’ve probably felt discouraged at times by the feeling that your life is over. If this is true for you, I encourage you to rethink your conclusion. The truth is, right now, there is life to live. Use the moments you’ve been given in whatever ways are meaningful to you, and express who you are. You are still you.

We are all different

Search your heart to discover how you’d like to spend the precious time you have left to live.

What activities that bring you joy can you still do, maybe in a different way?

Who do you want to influence with your love and wisdom?

What do you want to do for fun?

What projects do you want to complete?

How can you live the life you have now to the fullest?

I’d love to hear from you

Please leave a comment below and share with those who could benefit via email or on social media.

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Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

8 comments

    • Tina says:

      Hi Jean,
      I have wondered about stem cell treatment. It is sooo encouraging to hear about your sister. Will you please tell me more about it like where did she get the treatment, the cost etc? I would truly appreciate it. I am 50 years old and on a budget but I would have to find the money somehow it it truly works. I have pulmonary fibrosis caused by radiation and chemotherapy treatments from 20 years when I had Hodgkins Limphoma and chemotherapy again 5 years ago when I had Breast Cancer (also from treatment 20 years ago). Anything you can tell me would be great. Thank you!

  1. Jb says:

    Good point some times I just feel like I am just living to die. Afaid to spend any money that my wife of 50 years. Vet of Vietnam 64-65 ipf found in 2013

  2. Sher Loreaux says:

    Thank you for sharing I enjoy reading your column. I also have PF and it has taken a toll especially on my husband who has to get me to the hospital which is an hour and a half away. I am a homemaker or shall I say I was a homemaker. I enjoyed being the house Mom letting husband and children know where they placed their keys last or where they left their jacket or their shoes when they forgot where they put them. I prided myself for knowing where everything was in the house. I cooked and cleaned and kept up with the wash I even cut the grass but now that’s all changed. I have tried preparing my family for the grieving process letting them know a lung transplant is not a forever thing. This is a hard concept for all of us. I believe if everyone understood my time is limited… Let’s just sat I’m hopeful we would use the time more wisely. Any advice on convincing husband and children that Mom’s not going to be here?? Thanks, Sher Loreaux

  3. Jeff Tollers says:

    . . . but I just keep going. That is all that you can do. You cannot ignore it, but you cannot let it stop you. Enjoy the time you have left. And you still can contribute your valuable experiences. I am also writing a book. An you can still learn something new. Now I am beginning to play the guitar, I may never be a good guitar player, but starting to learn something new that is complicated and will take time is an open-ended process, which is good.

  4. Yes,my life too is not over. As a Baptist pastor I never planned to retire, but am now because of PF. It is not easy living with the life changes PF has caused, but I have faith and so vitality important I have hope. First a sure hope in my salvatiin in Jesus Christ, so deah does not cause fear. I know what lies ahead head. Second in those in science working to find a cure. Either way, I am content in God’s provision. I thank those who share their experience. I pray for us all.

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