This is a reply to Lorraine (In the comment sections) regarding a post we did on,
” How it Feels to Lose someone from our Lyme community to Lyme Disease.“
“God bless Lorraine, couldn’t have put it better myself. Used to be a good writer, but too many symptoms now, or I would write an elegy for all the victims (from suicide). Feel myself as though I am worth nothing, why did I live, why did I go to school, why have I ever tried, tried to beat the illness, only to be denied treatment, until it spread to brain, then bones in head and is not intractable and insurance won’t pay for anything…nursing home, hospice, abx, and even kicked out of crisis center because of PICC line and liability issues while surgeons have refused to do biopsies to find it because it’s a litigation situation, or could be….
Two years ago I was healthy beautiful, dating, now lost all possibilities, no validation. I feel your pain, i feel your pain and the hope it will change. Not be always broken, if only we would have our suffering recognized. It is like saying someone does not have an invisible knife in her back, as she vainly tries to remove it and is told the knife does not exist or if she just pulled harder, out it would slide. we all lose so much emotional blood in this battle not just against the disease but against ignorance.
I feel like these are precious people who had great strength and hope in them at one time, but were driven to absolute despair and just to make something change besides sitting there, feeling themselves slip further and further physically and becoming less and less a part of the normal world, they chose to make this one last act of protest and dignity happen for them, and to provide them much needed peace from the pain and anxiety of the pain.
Getting the illness and being misdiagnosed over and is like being hit and run, left to look up at stars paralyzed in confusion, wondering what happened, and when you call out and call out and finally the ambulance comes they run you over again, and then go with their lights flashing on to the next person to save.
I have been to multiple ERs with severe weight loss, vomiting several times an hour and pain in my head bones so bad it made me lie on my face, have trouble seeing, thinking, imagining, reading, etc. but the doctor said you are clearly sick but you don’t meet the “codes” so I must send you home and then they say, now, “if you will excuse me, I have a life to save.” As though mine did not matter and I was not asking to be saved just then, the other patients come first of course, but to patiently wait for some help to be put in the hospital, when I finally was put in there, they kicked me out after three days and the hospitalist mocking me and my doctor and my family to the point of me breaking down in tears.
I know how every suicide feels. I am likely be one myself in the next week. I know the shame and the gradual loss of self and the pain and helplessness that we can’t change anything, but we all start out with our heads high, hoping to be that last voice that might make a difference. It hurts so much to be called simply “emotionally disturbed” and manipulative and a liar and not to have your real grief and loss and physical pain recognized and sometimes that pain is worse than death because narcotics don’t control it.
I know from the bottom of my heart what each of these people went through. I am there, too. I remember some names of suicides, Heather, Bryan and Theda, and Susan, most of them were my own age, but their strories made me sick, and that was when I thought someone must start a Lyme hospital a refuge, where people like this can come. It would be a charity hospital like Saint Judes and would have a blue flame of hope burning above it. This was my dream to create this, before getting so sick it spread to my brain/bones, but now my hope is someone else who has money like the British Lyme victim John Caudwell will do this instead.
The part that hurts the most is that it seems it does not matter how many of us die, we are like mosquitoes hitting a light and falling with no names or notice to the medical world. Then, when you go, it has though they has seiged you out, time was on their side, they knew you would end it eventually and then the false diagnosis of depression would have validation, and of course under those circumstances there is not going to be an autopsy, since it appears to be suicide, and so through the invisible knife of Lyme which the patient dies trying to pull from his back, the myth that all Lyme victims are crazy somehow it perpetuated.
Who could bear to live to the end of syphillis or cancer with no pain management? Or AIDS? Why should it be different from this and who is not surprised with the combined physical and mental complex that so many of us, even the strongest, go by suicide? It’s unspeakably sad.
Vets treat animals to get them better because an animal has monetary value, and they get treated for Lyme ASAP, but all a human seems to be good for is to make money for doctors by staying sick and the insurance does not want to pay out for the treatments. A human is worth more to our economy dead than a cow or a sheep or a head of lifestock. It is enough to make you not want to live, even should your lyme go away, but, there are still the people on sites like this who care. God rest the people who have lost their lives to Lyme and suicide from Lyme. It makes me too sick to even explain.
Note from Lisa Hilton:
I wanted to share this post (with permission) for two reasons, first, when I read this, my heart just went out to Brooke. I could understand every word she said, every pain she described and could really relate to the knife in the back analogy. I thought if only doctors, insurance companies, the IDSA and CDC and any one of our friends and family members who denies Lyme could just read this, just maybe they would get a glimpse into the suffering of a Lyme patient.
Also, I am scared for Brooke. Yet understanding of her situation. But I thought maybe with some support and encouragement we can save another from suicide. Can you all please leave an encouraging message for her below in the comments? Let her know her life does matter.
Actions you can Take
Please leave a comment on: CNN: Lyme and Suicide: a Problem Ignored