We all find inspirations that help us make it through our chronic illnesses.
Sometimes that inspiration can be another person suffering through their own chronic illness.
First off, let’s admit the “Someone else has it far worse off than you do.” comment never makes anyone feel better.
In fact what happens is just the opposite. You feel GUILT.
Let’s not even bother taking a poll here to agree, we real dislike the “I am always cheerful and happy” bloggers and you tubers out there with chronic illnesses. Don’t even get us started on the “I gave up gluten and now I’m FINE.” people.
We all find people to inspire us and that we come to admire for having ,what my grandmother called, “Grace under pressure.” They are real people, dealing with illness everyday, and they help inspire us to “keep going.” They cry. They are afraid. They pick themselves up one more time than they fall down. They find joy in today, as there might not be a tomorrow.
One of my biggest inspirations is a You Tube family know as “The Frey Life.”
Yes, they are religious, but I would never put anyone down for using religion to help them through a terrible illness. Many of my readers I know are Atheists, but also sometimes forget, many of us use our faith to help us through tough times. Faith is something that does help me along my chronic illness journey.
The thing I admire about the Frey family (husband Peter, wife Mary and service dog Ollie), is that while they have FAITH, they also believe in modern medicine. They don’t expect God to cure Mary of her Cystic Fibrosis. They don’t even expect modern medicine to cure it. But, they are at best, hoping that Mary will live for as long as possible (I hope she does too). They educate and inform the rest of us about life with CF.
It’s a tough life. Mary devotes over 2 hours a day to self care. She wants to keep her lungs healthy for as long as possible. Despite the incredible medical advances, including lung transplants, most CF patients do not make it to age 40. That’s the top end of what she is looking at. It should be noted, I learned that a lung transplant does not cure CF. It’s more than just lungs, and for anyone interested Mary and Peter have some great educational videos on their you tube site.
Yep that’s a rule. My worst days, when I am in bed, depressed, despondent and in severe pain….surrounded by ice packed joints and having come back from getting the dreaded steroid shot…I make a point of going on You Tube to find a funny cat video to laugh at. Everyday. Laugh. They remind their viewers to do this, and it is pretty darn good advice.
However, one of the best lessons I learned from Mary was from a recent video. CF patients go to the hospital a lot, and Mary was again in the hospital. Peter is out walking Ollie her service dog, and Mary was alone.
Mary was sad. Her port, which allows the hospital to deliver medication easily, was hurting her. It was scary. Replacing the port is an operation, and you could watch Mary’s fears and thoughts overtaking her ability to deal with the reality of life with CF.
We all have been in this spot. The “I am tired of being ill and constantly having to worry about what’s going to be needed next.” The endless visits to physicians, hospital stays, the medication juggling, and the plain old fear. Mary cried.
Then at that moment, she looked out the window of her hospital room and saw a life flight helicopter landing. She turned to the camera, her tears stopped, and said “Today is the worst day of someone’s life.” The timing was sadly perfect.
In that moment, she remembered, life is very hard for all of us. That while she was afraid of her potential port surgery, and I think also just overwhelmed by her situation, she took a moment to reflect, “It’s not just me.” Someone was right there having the “worst day of their life.”
One great thing about this blog is that it reminds me, we are not alone.
Everyone is struggling.
Our condition is not just tough on us, it’s tough on our families and friends. But, we always have to remember, life is tough. There is no real “normal”. The older I get the more I learn, everyone has something in their life they are dealing with. In fact, if you only have ONE THING that you are dealing with, that’s an exceptionally lucky life.
Mary is a happy person. She has a fabulous support system with Peter and Ollie. She has a CF support team that seems considerate and on top of things. She also has chosen to share her CF life with others, so that she can help educate us about CF. But perhaps what she didn’t intend was showing us her own education.
Listening to Mary and Peter, you see their growth. They will sometimes say “We didn’t know this.”
You see a very young couple dealing with a very serious disease. They are learning together. I know my husband and I work as a team, sometimes poorly it should be noted, to deal with the pressures that come not only from my own illness but that of our disabled daughter. It’s better with a family, but in some ways is also harder. Communication is the key. What can I do to help you? What is “too much” and what is “too little”? How much can I handle and when do I need to admit I can’t handle things?
By watching the Frey family, I learn what they learn.
But the lesson of the helicopter (as I call it) has been one of the best lessons yet.
When I am in the depth of despair, I have to remember “Someone is having the worst day of their life.”
It doesn’t make my day better, but in a way, it reminds us that everyone else isn’t walking around having these amazingly normal lives. Also, at any moment, anyone’s life can change. It can be for the better or for the worse. But there is only one thing in life that is certain, uncertainty.
Also, the helicopter lesson reminded me how wonderful we are as a species.
We spend huge amounts of money to help take care of each other. This doesn’t make sense from an economic standpoint. One could say that the hospital makes money and the helicopter pilot makes money, and certainly the drug companies make money. But, the effort we have chosen as a society to help those needing care stay alive comforting to me.
I thought, watching the helicopter land “These people, flying that helicopter, caring for the patient, everyone at the hospital, the nurses, the doctors, the technicians, everyone chose to go into health care.” These people were inspired, most not by money, to study and educate themselves in a profession where they help others. My GP doctor jokes “Every doctor has a batting average of zero.” Medical care is not always the most uplifting of professions. People suffer, they are in pain, they die. People still chose to do this for a profession.
Mary does her hard work, the PT and the vibrating vest and the medications are a full time job. Peter does his part, supporting her but also letting her cough and not asking “are you OK?”. He is wonderful as he carries on as if “this is normal”. It is normal life for them. Mary’s never made to feel like a “sick person”. Instead she is a “person with CF.”
I love how Peter often just gives a shrug and says “This is life with CF.”
It’s not “This is life with someone that is really sick, and things are not normal at all, it’s just SO DIFFERENT.” No, he’s just “This is LIFE.”
One criticism is that Peter seems to ignore Mary when she is having a coughing fit. He is not ignoring her. That’s just “life with CF.” He will sometimes pat her shoulder, but mainly he is there. He never treats her like she is a SICK PERSON. That’s one good lesson for anyone caregiving for someone with a chronic illness. Don’t act like life is “not normal”. This is normal for someone with a chronic illness. No one wants to feel like a patient all the time.
So, yes they are showing mainly the upbeat times. But since the videos are daily, you get a real picture of life with CF. Warts and all. Plus, you admire how a young couple, obviously without much money, works hard to make do with less. They find such happiness in sunsets, that I started keeping my eye out for “beautiful skies.” I now take a moment to look at the sky. It’s just a moment, but it’s a moment of happiness I did not have before.
Thank you Mary, Peter and Ollie.