It Is Okay to Share Your Burden

Back at the beginning of the year, I had some major surgery. It was a very typical and routine surgery for my doctor who performs hundreds of this surgery each year. It was a big deal for me, though since it was me going under the knife.

I didn't tell a lot of people that I was having surgery. I told some close friends that I was having it and asked for their prayers but I didn't broadcast to the world that I was having it. It wasn't because I was worried what people might think or anything like that. Granted, I did get questions on why I did the surgery and why I didn't look at other options but that had nothing to do with why I didn't tell people.

The reason I didn't want to tell people is because I didn't want to burden other people with my problems. I figure that everybody has enough to worry about that I didn't need to share my problems with them. I know that my friends love me and would be praying for me and help me out in any way they could as I went through my recovery. But I still didn't want to bother them.

This is the same feeling that many in the HD world have, too.

For the ones experiencing symptoms of HD, you don't want to tell others what is going on with you. You don't want people to look at you differently. You don't want to worry your family and friends that you have begun to show symptoms. You don't want to share your depression or anxiety or nervousness or any other feelings. You don't want to burden anybody with your problems.

For the care-giver, you don't want to seem like you are complaining. You don't want people to think you can't handle it. You don't want it to seem like you are incapable of taking care of your loved one on your own. You don't want it to seem like you are wimp. You don't want to burden anybody with your problems.

Look at the flip side of things. How do you feel when you hear that a friend went through a really rough time and didn't say a word to you? Especially if it was a close friend? You feel kind of hurt. You wish they wouldn't have kept it from you. Those friends feel the same way when you don't share your burden with them. They want to know about your struggles.

Sometimes, sharing that burden allows others to bless you in some way. If you don't share your burdens, you rob somebody of the ability to be a blessing. Sharing your burden and letting other people know about your struggles can also be a benefit to you. It can help to relive some of the stress and make it a bit easier for you to bear.

Don't be afraid to share your burdens or your stress or your worries about HD with your friends. They are their for you and are willing to listen and help in anyway that you can.

Bravery

I admire Marianna Palka. She is a very brave young woman. She put her story and her journey out there for the entire world to see. And this was before she knew if she was living with Huntington’s Disease.

Marianna has been a model, a screenwriter, director, actor and even photographer. With the help of her friend and fellow director, she also became the full focus as she embarked on the life changing journey to be tested for the awful disease that has claimed her father. He is in the final stages of a life cut short by Huntington’s Disease.  So, at the age of just 32 and not yet exhibiting symptoms, she made the decision to get tested. She also chose to record it for the whole world to see.

The Lion’s Mouth Opens  is her story. It is a brief 27 minute documentary that begins the night before she learns her results. She is having dinner with several friends and discussing Huntington’s. They talk about the disease; she details the process that you have to go through before getting tested. Marianna talks about the state her dad is in and what it has been like to watch him deteriorate and know there is nothing that can be done to stop it. In Marianna’s own words “Getting a positive result is like a death sentence, and if you get the opposite, then you just get to be like everybody else. Those are two such different realities.” I think she sums it up pretty well.  A positive result paints the grim picture of the remainder of your life. A negative picture is like an unfinished story, just like everybody else in the world.

If you are familiar with Huntington’s Disease, watching this documentary is not easy. Watching it is a window into the life of so many people who have made the courageous step to be tested before showing symptoms of what has been nicknamed by many as “the devil of all diseases” since it can be likened to Parkinson’s, ALS and Alzheimer’s packaged together as a gift you hope never to receive. The film ends with some facts about the disease and some film of people that are living with Huntington’s Disease in various stages. I won’t lie; if you have had experience with the disease, you know that it is not all rainbows and unicorns.

The Lion’s Mouth Opens is available On Demand via HBO or on the HBO to Go App. I understand that both Marianna and Lucy Walker - who helped produce The Lion's Mouth Opens are already working on part 2 of this story to chornicle Marianna as she continues to live with Huntington's Disease. All the more reason to admire this amazing lady.

 I will leave you with just a small portion of the 5 page eulogy written by Bob Dylan about his friend Woody Guthrie who was lost to Huntington’s Disease.

And the lion's mouth opens and yer staring at his teeth
And his jaws start closin with you underneath
And yer flat on your belly with yer hands tied behind