Relating to Illness on Screen

I recently saw the new movie, 50/50, in which the main character, Adam, a 20-something professional, is diagnosed with a rare form of cancer. The film deals with his health struggles and their impact on his life. Where this movie differs, in my eyes, to almost any other film dealing with illness, is that it doesn’t martyr the characters or overdramatize key moments such as diagnosis, surgery or recovery. Instead, it realistically and sensitively (for the most part!) deals with the large and minor ways serious illness affects everyday life.

Whereas many films that deal with these issues place the disease as the patient’s central focus, most pulmonary hypertension patients realize that life does not stop just because a serious condition enters our lives. Instead we still have to maintain our relationships, negotiate work or college and keep up some form of normal routine.

For me, the hospital scenes were particularly reminiscent of my own experiences. Diagnosis is not always the “time standing still” doom-laden moment typically depicted on screen. Often it is a phrase casually thrown out by a doctor and only registers with time and research on the topic. Just as Adam did, I once found myself googling the unfamiliar terms I’d encountered, terrified of what I found. Likewise, the emotion surrounding major surgery is typically overshadowed in reality by the practicalities of pre-surgery prep or, for family members, the hours of waiting for results.

One of the more prevalent clichés that I’ve seen in “disease” movies are the secondary characters who either unconditionally support their ill friend or family member, or show their true colors and flee at the challenge of handling such a serious situation.

Real life, for the main part, is a far more complex affair. Friends and family sometimes disappoint or may feel, at periods, overwhelmed. They remain human, not superhuman. 50/50 successfully depicts people who don’t necessarily transform due to a serious diagnosis but do adapt. The immaturity of Adam’s best friend, Kyle does not stop because Adam is sick but, in some of the movie’s most moving scenes, we see his willingness to support his condition.

Likewise, PH does not transform patients into saints! If we are lucky we use the disease as an opportunity to better ourselves and our lives. But, just like Adam, who fails to see the impact of his disease on his family, we can struggle, at times, to see beyond our own difficulties.

But, for me, the most relatable and refreshing aspect of the film is its willingness to allow humor into every situation, no matter how dark. Kyle teases Adam about his bald head or scar just as my brother teased me about my blue-ish nails or entertained me with stories in the cardiac ward. Just like the film, illness can be inspiring and moving, but also funny!

Are there any movies that remind you of your own struggles with PH?

Strength in a Song

Today's post is from GH Blogger JennRN, who asked us to post on her behalf since her computer's on the fritz. Enjoy!

About a month ago, one of the other girls on the Generation Hope website, Keri, posted a song by Kerrie Roberts called No Matter What. This is a very good song; Keri felt it must have been written for her. I then searched iTunes and found some more Kerrie Roberts songs. I found one that seemed to be written for me, called Keep Breathing. The words are so powerful. I like most of the songs that I have found by her, but this one in particular is so inspirational to me. Watch it here:


 

The lyrics of the song start out talking about how your life isn't what you think it should be. It then goes on to talk about not giving up or giving in, how we are not done yet. When I listen to this song, I feel like she is singing just to me. When I'm having a bad day I’ll listen to it over and over to boost myself back up.  Sometimes I cry and sometimes I smile when I hear it.   

So many PH patients are like me. We are working one day, then the next it all comes crashing down, barely giving us time to digest or understand what has just happened. It can be so devastating, no matter what degree of PH a person has. This song gives me that little nudge to say, “Okay, I feel yucky, but yes I can walk on the treadmill today, or do the grocery shopping.” These are just some of the little things that lots of people without PH do on a regular basis without having to worry about finding energy to do them. 

There are things that we PH people can do to make us continue to feel worthy and less like we are a burden to our families. I went from working part-time to not at all. I felt so much like a burden to my family. The part-time income I used to get would have really helped to pay for bills, meds, etc.  That was super hard, and I loved being a nurse. It's what I've wanted to do since I can remember. Also, I didn't think I was one of those ladies that was wired to be a stay-at-home mom. Now I have become so grateful, even on the hard days, to be able to spend all this time with my daughter and my wonderful husband. I hope that everyone in our situation has the same support that I have, even if it is not a husband. I would be lost without him. 

Sadly, with PH we never really know how long we have left here on the earth. So like Kerrie sings in this song, we have to "hang on a little tighter, a little longer, we are not done yet." Most of us have families to live for, children to raise, cures to pursue for PH and other illnesses. So we will keep fighting, raising awareness and money for research, and we will be in studies. All so that maybe someone in the future will not have to go through all this, especially our children. We will go to pulmonary rehab and walk on treadmills, and take medicines that make us feel, at times, worse than the PH itself, because we want to "Keep breathing, believing , we are not done yet."

-JennRN