Several months ago I made a You Tube video on the escalated suicide rates of Fibromyalgia patients. Fibro patients are 8 to 10 times higher than the average population to commit suicide. I understand why. Living life with this monster is horrible and it derails the Fibromite’s life. It destroys dreams. For many of us it completely disables us. I know I am not alone when I state for many of us our families even abandon us. They see our illness as fake or worse, perhaps they are afraid of the genetic ramifications of what may happen to them one day and choose to go into denial. As I stated in my last post, for many, it is an existence more than a life. I also stated, the good news is, it is not life threatening. The bad news is, it is not life threatening.
Unless you have been in outer Mongolia or just do not listen, read or keep up with current events, I am sure you have heard about the beautiful Brittany Maynard. Unless she has a change of heart, she is going to die this Saturday, November 1st. She is going to get into her bed, surround herself with loved ones, play music she loves and take two pills prescribed by her Doctors. These are suicide pills. Brittany has terminal brain cancer and is determined to die on her terms instead of letting the cancer take its course.
I know Matt Walsh attacked Brittany for her decision. And honestly, Matt Walsh can get on my last nerve. He can be very preachy. He obviously has never lived with an illness of any magnitude nor has he been faced with a sentence of pain, suffering and a life that is existing, being deserted by loved ones who cannot take your illness and being saddled with hundreds of thousands of dollars in medical bills. What does he care if this girl opts out? The sad truth is she is going to die. If not now, in the next few months. My problem is, she seems to still be at a functioning level that is manageable. I have no problem with ‘death with dignity’ in the end stages when the patient is in so much pain that they are crying out for help. I have no problem in the end when they are days or hours away. We all know many Doctors have given just a bit extra morphine to ‘help speed it up’ to end the suffering. By all means, when it is getting to that stage, take the pills. If I were a sister, friend or yes, even her Mother, I would not stand in her way in the end when it is pain, suffering and just sheer hell. The problem I have now, if she can travel to the Grand Canyon, why ‘pick a date’. Why not just wait until things get to the point where they are unbearable. Look at Valarie Harper. She has outlived her ‘expiration date’ by a few years now. And if I am doing the math right, Brittany has already passed hers by a few months. I realize she has headaches and is having seizures but it is clear things are not to the point where she is unable to have joy and happiness in her life. So how does this all relate to a Fibromyalgia blog? It goes back to the escalated suicide rates. I often wonder why so little press is given to an illness that is so disabling and life shattering. I wonder why so little education is spread about an illness that literally drives people to want to die…. not because they have a death wish but because they cannot take the day in and day out pain anymore. This is an illness that most Fibromites I know have been shunned by loved ones, myself included. Ex-extended family used to gossip that I was faking and making it up to gain attention. I am not sure how a scan showing muscle spasms so bad that it was (20 years ago) pulling my c-spine in a near backwards motion can be made up. Wow, if I can will my body to have that kind of powerful muscle spasm and now the knots that require 2-3 injections a month, call The Learning Channel. I want my own reality show…. “The Woman That Can Make Her Body Do Anything”. At least then I can make some money out of this hell I live day in and day out. It is impossible to fake muscle spasms. On top of that, my cervical spine is wrecked and can clearly be seen on scans. Can numerous scans be faked? If so again, call The Learning Channel, darn it, I want that show!
So does dying with dignity spill over to a condition that wreaks havoc the way Fibromyalgia does? Where do we draw lines in the sand? We get chastised and left in the dust if we express that we do not feel good. We are assumed to feel fine if we say nothing. When people do end their life people say, “Why did they not reach out for help?”. I have been called a ‘mentally ill drug addict’ by someone in the world that I would lay my life down for. It is cruel and hate filled. I know I am neither of those and so do those that truly care for me. And I know where it is coming from…. or should I say who it is coming from. But coping with this condition is hard enough without taking that kind of abuse from someone that you have moved Heaven and earth for. So you begin to think, ‘why bother?’. ‘Why do I fight to maintain if the people I love are going to treat me that way?’ And honestly, I made the video in hopes of helping someone contemplating suicide. Fibro is painful, but no, it is not a death sentence. So where do we find the balance when our lives are already so filled with pain and challenge? How do we keep morale up and the will to live not just for each other but for ourselves? Sadly, I do not have any magical answers. I do know Brittany is lucky because her family has stuck firm, by her side. That is a gift no matter what your expiration date is. I do know karma is a lovely lady and she always, always comes around and delivers to those what they give. So for those who think it is their purpose, mission and goal in life to deliver ‘justice’, just remember, no one has that right except for our Creator. I do know that with Fibro many days are bad, some days are tough and some days are bearable. We do not know what is coming tomorrow. We do not know what medical breakthroughs are around the corner. So for Fibromites, is it fair to have this? No! It sucks. I have had Fibro 40% of my life and I would be bold faced lying if I said I have not considered suicide on more than one occasion. And NO I am NOT suicidal. I am going to repeat that. No, I AM NOT SUICIDAL. Having considered something at one time or several times does not mean you are considering it now. I have two very important little reasons for wanting to stay on this earth. And they love me just as I am for who I am. No judgements.
Time is a thief. One day you are a child, the next day a Grandparent. Last week Brittany Maynard was at the Grand Canyon and within a week’s time was to take her suicide pills? The latest reports now say perhaps a change of heart is at hand and she may postpone her original expiration date. I really hope so.
With Fibro it seems to extend into months and years. And flares. The famous flares. Or bouts. How about a bout of Cellulitis, 2 antibiotics, a pounding headache that won’t let up for weeks and you cannot remember the last time you slept in a bed.
And NO…. Fibromyalgia is NOT terminal brain cancer nor do I allude it to be. But if you look several comments ago, the most profound comment…. the most memorable comment I have ever gotten from a reader of this blog was from a cancer patient. She had gone two bouts with cancer. She said she would rather fight cancer than Fibromyalgia. Wow. Paul and I often talk about this. Why? We think it is this: with cancer there are two outcomes: You beat it and go on to live a normal life OR you go to God. Paul wrote a post about being a caregiver. He knows what it is like to watch a loved one live this hell that is Fibromyalgia, year after year after year.
I wish I had magic answers for everyone. And I realize this blog post feels more like a “Cat In The Hat” riddle than a statement in places. Perhaps it is because I am so heartbroken for Brittany and her family. Perhaps it is because I want her to wait just a bit longer. I get it, trust me, I do! But going in and laying down on a date you hypothetically pick out because ‘it sounds good’? Why? Why not just take a day at a time. When it is the ‘right’ time (excuse my lack of better wording) you will know or at least as best you can. If I have a plea to Brittany, that is it I suppose. Because trust someone who feels at death’s door most of the time, life is precious. Each and every moment that you can grab is precious. I can have the worst day and then as Paul and I settle down for the night, something will happen and we will have a full on belly laugh! I will be meeting one of my two best friends for the first time in a few weeks. We both struggle with chronic illnesses but even if we have a few days where we can only chill and stay home, I vow to cherish each moment with my precious Jenn. I get to hug her and laugh without it having to be through the computer monitor of a Skype session (and trust me, I am not complaining, I am thankful for Skype!). I had a wonderful Sunday with my precious Grandbabies having Halloween fun. And then I slept until morning. And I would not have it any other way. You know it is funny. My daughter…. such a precious, wonderful young lady that I am so, so proud of, always apologizes about goldfish cracker crumbs and little things that need to be tidied up. But I cannot seem to make her realize, the crumbs and toys tell Paul and me that our precious Grandbabies were here and had a good time! And I would have it no other way! We are going to blink and they will be in High School. Yes, I hurt and my life can be hell. But if I had to opt for one of the other, I will take the life of pain and even if in a wheelchair at some point, I would rather be here in this pain and see these two perfect little people grow up. So we must grab on and take these moments…. hold onto them for you, for your loved ones and for those of us that choose to dredge on because we don’t have an opt out button. Godspeed Brittany. Whatever you decide to do and whenever you decide to do it, my heart aches for you. You are young and beautiful and do not deserve this. But I hope and pray you wait just a bit longer because I know you have some good days in there.
I dedicate this post to all people suffering from any form of terminal illness, any form of cancer or other serious and/or life threatening illnesses that they are fighting with all they have including a very kind and dear Facebook friend of mine who I shall keep private and just call him “J” and those suffering from any form of chronic illness that interferes with daily life and has taken a toll on their relationships and quality of life.
“So it’s goodnight, things go wrong
But it’s alright
We’re all just passin’ through here
At the speed of light” Celeste Prince, “Wherever You Are”
The link to my video on You Tube for Suicide Prevention: