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Showing posts with label Sylvia. Show all posts
Showing posts with label Sylvia. Show all posts

Wednesday, December 7, 2011

What is the Generation Hope blog?

A blog can be many things … a diary, a rant, a means of promotion. It can be the voice that lets you know you are not alone. It can provide a chronicle of experiences that mirror your own. It can inspire...

The Generation Hope blog seeks to bring a voice to young adults facing Pulmonary Hypertension. It addresses those issues most applicable to people in their twenties, thirties and forties such as college, work, children and dating; all accompanied by a chronic illness.

Our blog is written by patients who are going through these experiences or who have gone through them in the past. They come from across the country and around the world! Each offers positive viewpoints on the realities of life with PH.

A blog should also be a conversation between its bloggers and readers and we want to open up a dialogue with the community. Check out some of our past posts:

Finding Your Voice

We Are Hope

Who would I be without illness?

As we prepare for the coming year, we would like to invite you to join our blogging team. Why not write one post (or more) in the coming year! If writing isn’t your thing, is there anything you would like to see addressed on the blog? Any issues or problems that you feel could be tackled? If so, we want to hear from you. Simply email: ChandaC@phassociation.org

As new posts arrive why not share your own experiences on what you’ve read? Doing so will ensure that other patients who read it will gain a well-rounded view on the topic. Use the comment box below to share your thoughts.

With regular new material and an engaged and active readership we can continue to inspire each other to live our lives with enthusiasm and optimism … and that’s what Generation Hope is all about.

Tuesday, October 4, 2011

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?

Wednesday, September 7, 2011

Who would I be without illness?


Sylvia, smiling from her cube at PHA's office in Silver Spring, Md.
Today's post comes from the newest member of the Generation Hope Blog team, Sylvia! From Ireland, Sylvia was diagnosed with pulmonary hypertension secondary to chronic thromboembolic disease more than eight years ago. Sylvia is currently working at the Pulmonary Hypertension Association (PHA) through a program that allows young professionals to gain international experience in the United States. 

While browsing a blog on chronic illness recently I came across this question and it stopped me in my tracks. Who would I be without illness? Like many Generation Hopers, pulmonary hypertension had entered my life at a formative age, in my case my mid-twenties. Like most people I was still figuring out who I was, finding my way on the first steps toward a fulfilling career and making (and breaking) relationships. I was very much a work in progress.

Almost nine years later and I can barely recognize the person I was back then. But was it illness that changed me? Had I not become ill would I still be the “me” I am today, regardless? I can never know. But I’d like to imagine that the challenge of dealing with such a serious condition and its impact on my life accelerated my maturity. I got to where I was supposed to go; I just arrived a little earlier than planned.

Of course, the question “who would I be without illness” has many negative connotations too. Without illness I would be further along in my career, I would never have moved home with my parents while others moved on, got married, and had kids. But, for me at least, the perspective and life knowledge I’ve gained have far outweighed these problems. Here are just five of the ways that I know PH has changed me for the better:

Pulmonary hypertension revealed a strength in me I could never have imagined I possessed. It allowed me to deal with a scary prognosis, the ignorance of others to a rare disease, and gave me the courage to face a massive surgery overseas. This strength has been a gift to me and made me realize no matter what happens I have the resources within myself to deal with anything.

PH has also made me less money and career-driven. Although our society equates career with success, I’ve learned to establish an identity for myself not purely driven by work. For me now finding flexible, fulfilling work that accommodates my needs and lifestyle rather than the other way around is my priority.

PH made me much more aware of the true priorities in life, primarily my friends and my family. Going through my twenties and early thirties being seriously ill (and on more than one occasion, close to death) it was hard to identify with others my age who stressed over their promotions, broken relationships and money worries. Now, that my health has improved I’ve found somewhat of a middle ground (everyday worries affect us all!) but I still appreciate the life perspective I’ve gained. 

Pulmonary hypertension has given me permission to trust myself!  For years I worried about what everyone thought about me. Now I concentrate on what I think and am not afraid to remove myself from unhealthy situations and people.  I am now far more trusting of my instincts and only surround myself with friendships that are positive. The eventual diagnosis of my PH after years of dismissal by doctors also validated my expertise over my own health.  These days, I continue to listen to my body and if it’s asking me to rest, I rest!

Pulmonary hypertension’s interruption to my life removed the illusion that we have to follow a set plan in life. While many people feel an expectation to have their marriage, home and children in place by X date, I hope to do these things when the time is right for me. And perhaps the only advantage to knowing I can’t have children naturally is that I don’t feel the pressure of a ticking biological clock. I’m following the path that suits me. This year, for instance, I’m working abroad, something I had always wanted to do. We all have the right to draft our own individualized life plan. 

All in all, pulmonary hypertension has taught me many lessons. I may not have chosen to learn these lessons in the manner I did but I’m glad to have grown as a result. 

How has illness changed you? Do you think pulmonary hypertension has benefited your life in any way?