A conversation with NFL player and patient advocate Rolf Benirschke

Earlier this week, I had the opportunity to attend an event with NFL player and patient advocate Rolf Benirschke.  This event took place at the New York State Capitol and was put on by GOBOLDLY and New York Health Works.  The event was attended by a diverse group of people including legislators, legislative staff, researchers, pharmaceutical company representatives, representatives from healthcare organizations and patient advocates.  I was excited to have the opportunity to attend this event.  I am trying to learn as much as I can about health care and patient advocacy.  I attended this event with one of my best friends, Jen.  She is the New York State and Vermont Advocacy Director for the National Multiple Sclerosis Society.

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The event opened up with NY Assemblywoman Crystal D. Peoples-Stokes (D-Buffalo).  She talked about her experience working with hospitals in Buffalo and how they collaborate with private companies who are working bringing the latest medical technology into Buffalo Hospitals. She also shared a personal experience about a friend with lung cancer who was receiving a cutting edge therapy in New York City that was developed in Buffalo at Roswell Park Cancer Institute.  

Rolf Benirschke was in his second season as a kicker for the San Diego Chargers when he was diagnosed with ulcerative colitis.  In his third season, he collapsed on a cross country flight and had to have two surgeries and spent 5 weeks in the ICU.  Like Bryon, he lost part of his intestine and went into septic shock and had organs shut down.  He came close to dying.  Rolf states that he didn’t know why his life was spared, but he was given a second chance.  He got his position back with the San Diego Chargers and played for seven more seasons.  

Rolf also stated that while he was in the ICU, he received 80 units of blood.  This was in 1979 when blood screening wasn’t as safe as it is today.  Rolf contracted Hepatitis C.   Rolf was given therapies for Hepatitis C which worked.  He expressed gratitude because he knew that he was lucky.  He brought up how Arthur Ashe contracted HIV from a blood transfusion that he received while having heart surgery.

It was inspiring to see Rolf share his story because the only way we are going to make positive changes in our healthcare system and patient care is by education.

We are living in exciting times when it comes to medicine.  My job is in oncology data and I see it.  They can test some tumors for the specific markers within that tumor and a patient can get a treatment based on their specific tumor markers.  I truly hope that diseases with a grim prognosis will be curable in our lifetimes.  

Jen and I got a chance to speak to Rolf.  We discussed barriers to patient care and we discussed part of Bryon’s story.  I encourage everyone to get out there and learn about the healthcare system.  You don’t need to work in healthcare to learn about it.  You never know when you need to apply that information for your own care or that of a loved one.

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An epiphany

There have been two feelings I have had my whole life.

The first feeling of restlessness.  I have always felt that there is a whole world out there to see.  So much history and culture to absorb.  Different people with different routines and traditions.  

I had only left New England seven times before I went to study in England the fall of my junior year in college.  Three of those times had been to Canada (New Brunswick, Quebec City and Montreal), two had been to New York (NYC and Niagara Falls with a side trip to the Canadian side) and one trip to Gettysburg, PA and one trip to Washington D.C.  The flight from Boston to London at the age of 21 was my first time flying on an airplane.  I have since seen more of the U.S. between my involvement in the Young Republican National Federation and my parents purchasing an RV.  I have seen more of the world due to Bryon and my love for cruising.  And I don’t plan on stopping.  I promised Bryon I wouldn’t stop.

Don’t get me wrong.  I do love my small Maine town.  I miss Maine, especially the people and the ocean.  But I always felt like there was more in the world and I wanted to experience it.  Maine did feel so isolated.  The only cities you could travel to easily by car was Boston and Quebec City.  I always wanted to be close to more US cities.  I love Boston (my birthplace) and Quebec City but I love having the option to do weekend trips to other cities.  

I still feel that urge to see the world.  It doesn’t matter if it is a back country road or a big city.  I just love to see new places.  I love historical sites and museums.  I love trying local food.  I love shops.  I love scenery.  I want to see it all.

The second feeling I have had my whole life is that I have always felt like an outsider. That I am on the outside looking in.  I never felt included despite being involved in sports, clubs, and later politics.

This brings me back to high school and college.  I always worried where I fit in.  I wasn’t cool but I wasn’t uncool either.  I wasn’t particularly included but I wasn’t excluded.  I had friends but I wasn’t invited to the cool parties.  Though looking back, I am sure some of that was me.  I didn’t have the wisdom to know how to be as open to friendships.  Being open to friendship is something I only started to do when Bryon got sick.  

I followed my same social patterns in college.  There were two major groups in my college dorms.  The theater/art/music majors sat on the left side of the cafeteria and the athletic and Greeks sat on the right hand side.  There was one row of tables that was right in the middle near the salad bar and an ice cream cart.  I was friends with people on both sides and would sit on either side.  If I was by myself (something that didn’t phase me, especially after studying abroad and going to Paris by myself) and I didn’t see any of my friends, I would just sit in the middle.

When it comes to my writing and purpose, I come back to these two feelings that have plagued me my whole life.  

I have so many ideas for blog posts in my head and no idea where to start. I have so many ideas of what I want to accomplish, but I don’t know how to get there.  Now I have Paul Simon’s Me and Julio Down by the Schoolyard stuck in my head.

I think about the concept of having a niche when writing.  What kind of blogger and writer am I?  Trying to find what writing niche reminds me of my high school and college years where I was trying to find the right table to sit at in the cafeteria.  My half-marathon training has been suffering due to my poor time management skills so I am definitely not a running blogger.  I don’t travel enough to be a travel blogger.  I write about life, but I am not a lifestyle blogger.  Trust me, if you could see how messy my living room is, you would know why I don’t post pictures of my house.  I write about death and grief.  It is important for me to share that part of my story as our society has a twisted view on death and grieving and we need to talk about it.  But I don’t want Bryon’s death and grief to define me.  I am still a person who has a lot of living left to do.

I need to make a difference.  I need to help people.  

I need to talk about grief to help widows, especially young widows because the world thinks of widows as being elderly.  

I need to talk about grief to help those who have lost loved ones, not just widows, but anyone who has lost a child, family member or friend.  

I need to talk about rebuilding my life to help those whose life and sense of security  was shattered, whether it was by death, divorce or job loss.  

I need to talk about my struggles in parenting to help those who are single parents.

I need to tell my story of surviving to give hope to those who are struggling to carry on.

I need to talk about the problems in our healthcare system so people can advocate for themselves and their families.

It dawned on me today that instead of worrying where I fit in, I need to just blaze my own trail.  Not just with my writing, but in my life in general.  If I truly want to be open to new people and new experiences, then I shouldn’t be focusing on trying to put place myself in a niche or group.  If I do that, then I inadvertently narrow down who I meet and my opportunities to make a difference.  I have spent my whole life waiting for others to define the path I am to take.  That is silly because no one other than myself can know my true life purpose.  No one else can understand what I hope to get out of life.  If I wait for others to define my path, then I am limiting my potential.  

I need to blaze that trail even if I don’t know where I am going.  Besides being a wife and mother, the other two times I felt accomplished in my life where when I took risks and did something scary.  The first was my semester in the UK and the second was my years in politics.  They were the two times in my life when I felt like I was out experiencing life the most and my experiences were the most rewarding.  I pushed ahead and did things out of my comfort zone.  I didn’t let fear stop me.  I need to remember this as I blaze a trail forward.

0.3

Bryon died of medical complications.  The odds of what happened to him were 0.3%.  I will never know why he was in the 0.3%, and not the 99.7% that has an uneventful recovery.

This graphic is from the NHS.  For those who may be unfamiliar, NHS stands for National Health Service which is the healthcare system in Great Britain.  I am not surprised.  Their election graphics are phenomenal.  If you get a chance, watch the coverage of the British elections on Thursday night.  Therefore, it doesn’t surprise me that they have great graphics in healthcare as well.  I was also told when I was advocating for the Multiple Sclerosis a few weeks ago that the NHS has the best literature for MS patients.   

Before you think I am veering into a post about socialized medicine, you are wrong.  I just want to talk about this awesome graph.  I don’t know the purpose of this graph.  Is it due to the recent terror attacks and is the purpose of this to keep people from fearing terrorism?  Or maybe the purpose of this graph is to raise awareness for heart disease or cancer? I don’t know.

I am not against raising awareness for the more common diseases like heart disease and cancer.  Awareness usually makes patients aware of the disease and the warning signs and thus they are more likely to seek medical attention during the earlier stages of a disease and that produces a better outcome.  Awareness usually increases funds for research through grants and donations.  As far as I am concerned, awareness for any disease that has the potential to kill is a good thing.

But according to this chart, someone has a better chance of being murdered or dying in an “undetermined event” than dying of medical complications.  Therefore, people usually don’t think that it is a possibility.   Because people who live in first world countries do not think that these events happen.  But they do.  

After Bryon died, I kept playing the events in my head over and over again.  But then I realized that I am not a doctor.  I do not have a medical degree.  I can only speak for living in the U.S., but here there is a feeling that the healthcare we receive here is the best.  We believe that doctors will take of you.  If you have a problem, the doctors will figure this out.  But unlike cancer ribbons and wear red in February for heart disease, there is no awareness for medical complications.  How do we as a society change that?  How do we prevent medical complications from happening?

 

Advocating for MS in the State Capitol

I had an amazing opportunity this week to advocate for people living with Multiple Sclerosis.  It all started a few months back when I told one of my best friends that the company I work for gives every employee five paid days to volunteer each year.  (Something more companies should do.)  My best friend is the Advocacy Director for the National Multiple Sclerosis Society serving New York State and Vermont.  Part of her job is to give people living with MS the tools they need to be advocates.  So I told my best friend that I have 5 volunteer days that my company gives me and I may as well use them and the MS Society is definitely a cause I support.  My best friend invited me to join her team when they spent the day at the New York State Capitol advocating for several issues that affect MS patients.

I have several friends who live with MS as well as a few distant family members that had MS but I never realized how little I knew about the disease.  Some of the things I learned included:

  1. The cost of medicine is astronomical and ridiculous.  A medicine that has been on the market for 20 years that was $8,000 thr year when it came out now costs over $80,000 a year.  So if someone needs this medicine and has a 20% coinsurance payment, they have to pay over $16,000 a year for the medicine.  I don’t know how it is reasonable to expect a middle class or lower class person to be able to afford that.  One of the people advocating said that they knew a middle aged person who had to move back in with their elderly parents because they couldn’t afford to live on their own and pay for their medication.  I remember complaining when the copay for my albuterol inhaler went from $20 to $40 and this is a harsh reality check.
  2. The lack of transparency from insurance companies can make it difficult for MS patients to be able to choose treatment.  Sometimes a drug may lose its effectiveness or require some trial and error but it’s hard for a patient to make that change if they can’t get a clear answer from their insurance company as to how much the out of pocket expense is going to be.
  3. MS patients don’t get to choose if they receive their drugs through the mail or at a local pharmacy.  Their insurance company makes that decision.  Some people like to get their drugs in the mail and it works out great but for other people it doesn’t work.  Sometimes the drugs are stolen and since they are expensive, the mail order pharmacy may be hesitant to resend them (it’s not Amazon.com who will usually resend an item that doesn’t show up). An MS patient usually has to jump through hoops to get the medication they need and any gap in medication coverage can cause big problems in their treatment.

I learned so much during this day.  In addition to learning about MS, I learned about the process of meeting with legislators and discussing issues and seeing how change could happen.  I was in awe of my best friend as she would talk to the legislators or their representatives.  It was amazing to see her in action.  My fun-loving friend got down to business!  I was also in awe of the MS patients who bravely told their stories to help themselves and others afflicted by the disease. At first I felt a little self conscious because I was “just a volunteer” when everyone else was an employee or they were living with MS but everyone welcomed me to the team.  And they answered my stupid questions too without making me feel stupid.

When Bryon was in the ICU, I had to learn very quickly how to advocate for him.  It does not matter how good the hospital is, one must stay on top of what the doctors are doing and saying.  I think the struggles I had are the same struggles that others have regardless of illness.  One of the things that always seemed to concern me was that the different teams of doctors didn’t seem to communicate and I heard that was also the case with MS patients.  MS patients have to see neurologists that specialize in MS and if they see another type of doctor, it is imperative that that doctor communicate with their neurologist because what might be a standard treatment for a healthy person may cause serious complications to a MS patient.

While a patient (or their family as was my case) should always be aware of what is going on, I know it was exhausting to have to stay on top of the doctors to make sure they had the correct up-to-date information.  But I had to do it.  I have a background in healthcare since my profession is in Oncology data but I can’t imagine how much harder it must be for patients and family members who do not have a background in healthcare.  Bryon could not advocate for himself and my heart breaks for the patients who don’t have family members who work in healthcare and don’t understand healthcare jargon.  I can’t imagine how lost they must feel.

After this experience, working to make sure patients and patients families have to tools to advocate for themselves is important to me.  I don’t want anyone to feel like they were hit by a steamroller like I was.  I hope I get more opportunities in the future to advocate for patients and their families and I thank my friends at the MS Society of New York for this including me.

Why am I doing this?

Yesterday my blog reached a milestone.  A milestone that I never would have dreamed of ever happening, let alone only after two and a half months.   Yesterday my blog reached 10,000 page views.  I never would have thought that my words about Bryon would go so far in such a short time.  

So why do I do this?  Anyone who knows me in “real life” would tell you that I tend to be a pretty private person who takes a long time to open up to people.  I usually prefer to keep in interactions with people at the superficial level.  Want to talk about the weather?  Sure!  Talk about emotions and feelings?  No way!  Before Bryon got sick, I kept all but a few people at an arm’s length.

So what has compelled me to share some of my most private feelings on the internet? If someone would have told me that I would be sharing some of my most personal thoughts for the whole world to see, I would have probably looked at them like they were nuts.  But here I am.  Sharing my personal thoughts in a place where anyone can see.   I am not lying when I tell you that it is one of the scariest things I have ever done.  I am most likely ruining my chances of ever getting a boyfriend (in the very distant future) because any potential suitors would likely find this blog during a google search and go running far away after reading this.  And I can’t blame them.  Run, Forrest, Run!

There are many reasons I pour my heart out on the internet.

I have barely begun to share most of Bryon’s story because it is still too painful for me to share.  But I feel compelled to tell Bryon’s story in an effort to help other patients.  I want to help people know how to advocate for themselves and I want to empower people to find the right knowledge so they can make educated medical decisions.  I want to help people know what kind of questions to ask their doctors and what to do if something just doesn’t seem right with themselves or with the health care that they might be receiving.  I want people to know why it is important to know their own health history and, if possible, that of their family members.

I feel compelled to share my story as a caregiver and an advocate because I want to help the family members and friends of the critically and terminally ill.  I was thrown into a situation where one day my husband was recovering from a minimally invasive surgical procedure to fighting for his life in the ICU a few days later.  I don’t think there is a word in the English language that could accurately describe how overwhelmed I felt during those weeks that my life came crashing down. I have a background in oncology data and oncology was one of the few medical specialties that did not play a role in Bryon’s care.  While I had more medical knowledge than the average person, I am not a doctor or nurse and I had to quickly adapt to all the new medical terminology and procedures.  Bryon also could not speak for himself while he was in the ICU and he depended on me to advocate for him.   And unfortunately advocating for patients is not easy.  As a caregiver, you need to be prepared to fight for your family member or friend.

I feel compelled to share my story because I want to help other widows and widowers.  Widowhood is a very lonely place.  It helps to read that we are not alone and that other people can relate.  I appreciate reading blogs and memoirs of widows and widowers, especially those who are further in the healing process because I want some sort of idea of what to expect down the road.  Since I benefited from the stories of others, I want to share my stories with the hope that it might help another widow and widower.

I want to share my story to help those who have gone through a trauma and/or have experienced the loss of someone important in their life.  Grief is grief regardless of whether it was a spouse, a family member or a friend and we can all relate and support each other.

I write because it helps me process my own emotions.  I was in the “widow fog” for several months after Bryon died and the fog didn’t start to subside until I started writing about my feelings and my experience.  Before I started writing, I could bottle up my emotions and ignore them for a later time.  This isn’t healthy.  Writing forces me to acknowledge what I am feeling at any given time and it forces me to deal with my grief instead of ignoring it.

I write because I must preserve as much of our story for my daughter.  She won’t have any first hand memories of Bryon and she will have to rely on the stories that are told to her.  I can already start to feel that my memories are not as sharp.  I feel a huge void that Bryon left but it’s getting harder to remember the little things.  I am fearful that if I don’t write things down then those memories will die with Bryon.

I hope to become a patient advocate someday.  I want to raise awareness for the issues that plagued Bryon and ultimately took his life.  I want to empower the caregivers of critically and terminally ill patients.  I share our story to meet others who have been in similar situations and have similar goals.  I write with the hope that I can expand my network so that someday I am able to accomplish my goals of helping people.