Meet Jason and his wife Geri.
Jason was diagnosed with Cystic Fibrosis at a young age. Jason's lungs progressively declined over the years (accelerated by incessant hemoptysis) and in January of 2012, he developed a severe case of pneumonia, which required months of hospitalizations, that progressed to lung failure and end-stage Cystic Fibrosis. In February 2012, Jason was forced to drop out of Optometry school (in southern California) and fight for his life. March-July was filled with evaluations at University hospitals across the country and Jason was blessed to be accepted into the transplant program at Duke University in North Carolina. July-September focused purely on getting Jason as strong as possible so he could be listed on the national donor registry. On September 17, 2012 Jason received THE call and the gift of a second chance at life because of the selfless miracle of organ donation. Countless miracles happened over the next 5 months of intensive rehabilitation and he was able to re-enroll in Optometry school and today is a healthy, practicing eye doctor.
Q: People usually mean well, but don’t always say the most helpful things. Is there anything people continually said to you while in the hospital that wasn’t helpful?
A: “It was especially difficult when others would say they knew exactly what I was going through, then proceeded to make the conversation about them and their experience (no matter how equivalent or not), expecting comfort and sympathy for their trial. Patients aren't usually emotionally equipped to dole out comfort to others while in the throws of their affliction, nor do I think it is fair to ask that of them. No one knows exactly what another is experiencing. Please don't try to make it about comparison and how much you know or understand. Sympathy will always be better received than comparative empathy, at least in the first exchange. Hold the conversation of comparison to yourself unless you're asked for advice or input from your perspective—there certainly may be a time and a need for that, but wait for them to come to you.”
Q: Are there any specific acts of service that really made an impact on you at such a difficult time?
A: "One thing we both learned through our experience is there are angels all around us. We were astonished by the acts of kindness, some small and simple, others more grand. We were stunned by the fundraisers that took place and donations made and letters sent and prayers offered. Communities in Idaho and California and North Carolina and online rallied around us and lifted us up. We were buoyed up and could hear the encouraging voices singing out to us all along our way. I cannot begin to tell you how much this impacted us in such a time of difficult trial."
"Around the same time that I was forced to take a leave of absence from school, we did a round of In-Vitro Fertilization which sadly was unsuccessful. We were at a very low point because we thought we'd missed our chance at having kids of our own (we later found out that there is still hope). Right in the middle of all of this pain and loss, my classmates got together and asked my wife what my favorite movies and treats were and surprised me with a big care package and a card full of uplifting well-wishes. This really brightened my day.
“It also means a lot to the patient if you take an interest in helping their family through this difficult time. There are parts of the struggle that are harder on the family than the patient. I can't imagine what it felt like for my wife and parents as they waited during the 9 hour operation. Thankfully, our angel relief society president that we'd only known for a few weeks prior to the operation, came with a big smile and 6-pack of diet Coke for Geri because she knew it was her favorite. She also brought a pizza for my family, because she knew they had been, and would be at the hospital for a very long time. This simple act of kindness lightened their burden. She was there to reassure and support my family when I couldn't. I will always be grateful for the Christlike love she showed to almost complete strangers."
“Shortly after the transplant and arriving home to California, I became very sick, septic actually, and was admitted into the hospital for a while. Instead of waiting and asking what she could do, a friend just jumped right in and gave Geri several gift cards to her favorite fast food restaurants (In-N-Out Burger, Panera, Chipotle, etc.). We were so grateful for such forethought and hope to have learned a valuable lesson from her—think about what might help that person in need, what might ease their burden, and jump right in.”
Q: Good intentions don't always come across helpful. Did anyone's actions ever hurt you?
A: “People need to feel the love and support of their friends and family when they are battling a tough situation. There is, however, a point when an individual's concerned questions can cause unnecessary stress and burden on the patient. When dealing with a prolonged illness or hospital stay, days will go by with no new news, no updates, just a lot of waiting. Be conscious of the stress the patient is already under while trudging through each day—continuous questioning and rehashing will only add to the anxiety of the experience. The most effective support system is warm and full of love, and doesn't add guilt and stress to the patient. The less you make it about yourself, the better."
"The greatest example of someone not making it a bit about them, and simply offering compassion and love was one of my best friends, Brian. When I had just learned I was to drop out of Optometry school, and our first round of IVF had just failed, and the foundation of our world seemed weak and starting to crumble, Brian visited our apartment. He shook his head, tears filled his eyes, his voice was thick with emotion as he spoke only two words, "I'm sorry." I knew he understood what we were facing, I knew he loved us, and I knew he was there for me no matter what. All from such ordinary words, and all because I could see and feel his whole heart."
Q: Is there anything else you would like to add?
A: Please take a few minutes to learn about organ donation. I am only able to share my story with you today because of the selfless decision of another. Become a donor and let your family know about it. *Even if it says you are a donor on your driver's license the decision will ultimately be left up to the family, so make the decision easy for them. My 15 year-old angel donor selflessly made this decision and shared it with his mom. He was proud to have "organ donor" on his learner's permit. http://donatelife.net/understanding-donation/ Website: www.meandhimblog.com
Gift Idea: Just like Jason mentioned up above, Pat and I also received gift cards while we were in the hospital with Preslee. We were so grateful for them! We found if it became too big of a hassle, we wouldn’t eat at all, so gift cards enabled us to eat when we could fit it in to our schedule. Below I linked a few gift cards you can order straight from Amazon. I hope this helps!
Great post Ashley! Organ donation is so important. My mother in law was able to donate at the end of her life. It gave us much comfort that she was still able to help others.
ReplyDeleteThank you so much for putting this series together. It breaks my heart that these individuals and families have had to go through these trials, but I really appreciate that they're using what they've learned through it to help others.
ReplyDeleteJason's comments about what wasn't helpful during his hospital stay reminded me of an article I read a year or so ago. What it talks about seems like common sense, and yet I've seen so many people break this simple rule of courtesy and sympathy.
http://www.latimes.com/opinion/op-ed/la-oe-0407-silk-ring-theory-20130407-story.html
I remember finding Geri's blog right around the time they were waiting for "the call". I don't even recall how I found her blog. Thanks for sharing all these stories.
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