Marie was a woman I never met — until after her death in 2010. Marie Little was one of the ultimate Migraine victims, because this disease took her life.
Migraineurs often complain that society doesn’t understand them because there are no “big stars” brave enough to stand up and tell the ugly truth about Migraine Disease. When they dare to tell their stories, often they are met with salty attitudes and worse publicity. The stigma and misunderstanding of Migraine is often even accidentally perpetuated by well meaning celebrities who choose instead to focus on their *victory* over Migraine Disease by minimizing its effects on their lives and careers. This is how they defend themselves and survive in their publicity filled world.
The fact is nobody wants to appear to be a complainer, or a weakling. From the outside looking in, it’s very easy to fall into one of two places: the “Happy Place” where everything is sunshine and roses, or the perpetual pity party in the land of “Woe is Me” populated by whiners, complainers and weaklings.
That’s how outsiders see us anyway.
Migraine stigma abounds.
But back to my Migraine sister Marie…
I have a photograph of a star shaped stone in one of the walkways in Las Vegas. It looks similar to the stars I’d expect to see in Hollywood with the name of a famous actor or actress emblazoned across the front. It stopped me cold and brought an unexpected flood of tears that really confused my husband when I found it by accident just a few weeks ago, because although the woman whose name was on the stone was not an actress and played no part in show business, I knew her name very well.
Below her name was one simple word that said a lot about her life… Humanitarian.
Next to her star on the sidewalk was another star with a name much more familiar to people in my age bracket — Rich Little. He is a brilliant comedian and impersonator and in the 1970’s and early 80’s you’d be hard pressed to find a human being who didn’t smile when hearing his name. Marie knew him well — he was her husband.
I could go on and on about how Marie was the light of Mr. Little’s life, but that is information you can find on your own with a simple computer search. I want to talk instead about the story that Marie has to tell us all…
By published accounts, Marie suffered terribly. I tend to believe the accounts because in the end her Migraines were so seriously out of control that she saw no way out of her misery but to take her own life.
The common remark “Pain never killed anyone” has been proven a lie yet again…
Marie and her husband had access to some of the best health care there is. They traveled the country in search of help for Marie, visiting clinics such as Mayo’s where it is reported that no cause for them was found. Apparently there was little help forthcoming either.
In the end, Marie saw no way out and did the only thing she knew to do to escape her tormentor.
If someone like Marie Little is unable to receive appropriate treatment and management of her Migraine Disease, what does that say about the general population? What does that say about the disenfranchised who suffer with us?
We’re all in this together
Chronic pain is a disease, and it is an epidemic in this country. The war on drugs has yielded collateral damage in the form of desperate chronic pain patients who find themselves being told there is nothing to help them – their situation is hopeless – “Learn to live with it.” Those who create and defend these laws and activities do not understand what it is like to be a chronic pain patient. They cannot understand pain so severe that it literally drives a patient to death.
Chronic pain patients do not have a death certificate that reads Chronic Pain. Instead their final paperwork reads Suicide, Overdose, Depression, Medication Side Effects or any other of a long list of causes that actually resulted from their chronic pain conditions being seriously undertreated.
As a Migraine and Chronic Pain patient advocate, I see someone almost every day who toys with making the kind of decision Marie and others have made — out of sheer desperation. We are not professionals in this realm, but we are here for support.
I plan my day so that I am sure to be online to check for community members who may be desperate enough to contemplate suicide. Teri Robert and I have teamed up to be sure there is always someone available should a member need to talk or be directed to professional services. We are here to try to support and educate Migraineurs before they are desperate enough to contemplate such action. Those members who have friended me here or on Facebook know they can get in touch with me whenever they need, and I will stay up all night if necessary to try to be sure they are safe and being properly cared for by someone who can help them. Teri herself has contacted law enforcement in the past to be sure an intervention occurs when it’s obvious a member is truly suicidal. All of this is a part of our lives because we care so deeply for the patients we interact with.
I was moved to think there is a tremendous lesson to be learned by Marie.
It is so easy for us to fall into the pit of despair so deep and overwhelming that we become victims of our disease. We need instead to join together to create the change we need in our lives. We do this by putting our *money where our mouth is*. Contact your legislators. Create action instead of complacency. Be like one of the mere 1000 out of 25,000 people contacted by Teri last year who took 5 minutes out of their day to take action. Politicians are in the business of doing what their constituency wants and needs. They do listen, so make yourselves heard! From your desks, from your kitchen table, from your legislator’s offices. Wherever you are, with whatever means you have… tell them your story. Tell them why we need better access to medications, doctors and research for a disease that effects 37 million Americans. Tell them what it’s like to be collateral damage in a war you didn’t start. Make it personal. Give them a reason to want to stand up for us.
Marie did this for me. When I was asked to go to Headache on the Hill, it was her star in the middle of the Las Vegas strip that confronted me. It was the desire for not one more Migraineur to lose their life to their disease that has me flying thousands of miles to talk to lawmakers. Afterall…
…If we don’t’ stand up for ourselves, who else will?