I strongly connected with the story of a butterfly cocoon that was shared in Robin Roberts’ memoir, ‘Everybody’s Got Something.’
“Someone sees the movement of the butterfly pressing against the wall of the cocoon and they think they’ll help it along and just cut a little hole in the cocoon so the butterfly can come out with ease. But the butterfly dies soon after. There’s a reason why it’s beating its wings against the wall of the cocoon – to make it stronger. It doesn’t serve the butterfly, in the long term, to come out too soon.”
My husband, Noah, my parents, and I battle with the helpless vs. burden struggle. My parents and Noah fight the feeling of helplessness, as they would do anything to take away my health struggles and eliminate my pain. Where I fight my inner thoughts of feeling like a burden, as I hate to see what I put them through and how my health trials have been life altering for all of us. The important thing to remember is that most of this is out of our control.
The four of us are strong in mind and heart and this has enabled us to overcome every health obstacle as a team. We want the answers as to why I must endure countless health complications and why my body goes through so much pain and struggle. I trust there is a reason for all of this and while some want the ability to take things off my plate and ease the pain, I continue to have faith that I am ‘beating my wings against the wall of my cocoon’ for a reason.
“If we don’t want to undergo any struggle, we won’t be able to fly!”
Whenever we are enduring something in life, it is about balance, acceptance and gracefully transitioning into the next phase of our journey. I hope my parents and husband realize how their unyielding love and support has enabled me to stay mentally and physically strong. During the times they may feel helpless, they are actually empowering me to feel unconquerable. When I feel like a burden, I remind myself that if the shoe were on the other foot, I would do anything for them and they could never be a burden to me.
“When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares.” – Henri J.M. Nouwen
Noah recently said he wished he could take some of these health struggles off my plate. I replied, “I know, but you make them taste better and easier to swallow.” Just like the butterfly beating its wings against the wall of the cocoon, there is a reason for everything.
This really spoke to me because my best friend from the age of eight, is struggling everyday with PKD, a disease that she inherited from her father.
We aren’t school children now – in fact we are on the bad side of 50 and it’s a little harder for her to bounce back everyday. I just wish there was more I could do!
We need to ask medical facilities and doctors to start looking sooner for donors then waiting until it’s too late.
Please share this with your contacts and friends and let’s get the word out there.
Hi Robin,
I am happy to hear that you were able to connect with this blog, but of course sad that your best friend has had to endure PKD and you in turn have had to watch her struggle. Please know that your support, love and friendship help your friend immensely. It is so good for PKD patients to know they are not alone.
Hello:
I will show this post to my wife when the right day arrives (and it will pretty soon).
I’m 46 and have been on the transplant wait list for about 9 months and am actively seeking a live donor. Still have about 15% kidney function so not yet on dialysis but intermittently feel the effects of low function.
On one hand, it’s bad. On the other, I realize I’m comparatively lucky based on your story and the stories of many of your other readers.
This is a great blog that inspires and empowers! Thanks for writing it.
Hi Mike,
It is wonderful that you are able to put your journey in perspective with a positive light. I am thankful to hear that you have not reached dialysis yet and hope that you will receive a transplant before you are in need of dialysis. I am so happy that you enjoy my blog and greatly appreciate you sharing your kind words as it gives me the encouragement to keep writing. Positive wishes for you receiving the gift of life real soon!!!
Thank you for sharing this. I felt as if i was alone on feeling like im a burden. I dont work. Im a full time mom and wife (which i love). I was diagnosed with PKD nov 2013. I also this year have been diagnosed with hidradenitis supprativa and psoriatic arthritis. All which have no cure at this time. It takes a toll on you when you cant seem to do simple daily duties. Ive spent many days in tears. Reading this has inspired me and make me feel less alone. Thank you from the bottom of my heart. God Bless you
Dear Melody,
I am so sorry for all that you are enduring. I agree, it is very difficult when we can’t do simple daily duties. I am thankful to hear that you love being a wife and full time mom and have that joy in your life. Having support from my family sure has helped me along this journey, and I hope that helps you too. I am so happy to hear that this post helped you to feel less alone. I hope your health in regards to PKD is well. It is good to let our emotions out and I hope that letting your tears out gives you renewed motivation in knowing that you are strong and not alone. I wish you all the very best. Hugs!