I woke early this morning after another agonizing night and hellish week and as I lay there unable to sleep, I wondered how something this painful, this debilitating can be so invisible to others. Not only to my mom in the next room and who can't hear me crying, or my sister two streets over who only sees me on the all too rare occasion I feel well enough to visit, but also to a number of doctors who still search for a cause for the myriad of my symptoms. How can I have such incredible pain in my ears, yet an ear specialist say everything looks fine? How come I have episodes of severe vision loss but my eye exam is normal? I need an oxygen machine to breathe but my oxygen levels are apparantly fine. How can I fall over from such incredible chest pain that is so severe that those who witness it, insist it is a heart attack and beg me to allow them to call 911; and I, from past experience, know all to well nothing will show up on an EKG and after 12 hours in the ER I will be sent home with a clean bill of health.
The pain has been so severe in my legs, I begin to fantasize that amputation may bring relief...the soles of my feet feel like I am standing on a bed of nails, even though they are propped up on a pillow, as I lay in my bed, for the fifth consecutive day, unable to walk beyond the bathroom directly next to my room. I am able to walk downstairs this morning, by determination and will alone, just to get out of my cluttered room if even for a moment to get some water. My mom has been waiting on me enough and it breaks my heart to see her doing my laundry, bringing me my meals on a tray and running back and forth to the pharmacy and I know she is exhausted. She will be celebrating her 76th birthday in three weeks time and she is able to do so much more than me.
I still question how I got here, and go to bed each night, hoping to wake the next morning, only to find it has all been a horrible nightmare. I allowed myself to hope, with the improvement I saw from my experience with acupuncture, and the relapse is far more than disappointing. I feel like it is starting all over again, these feelings on the unfairness of it all, the questions I thought had long been answered or at the very least, accepted; but here I lay still in denial, still furious that this is what has become of me and still confused how this suffering has been allowed to continue without more drastic intervention.
I spoke with a dear friend today, a fellow lymie. I called because I have been too ill to talk for quite some time, still so sensitive to noise that a conversation longer than ten minutes becomes a trigger for vertigo, vision loss and brain sensations for the remainder of the day. I just wanted him to know I was thinking of him. I ask him how this could happen to us and he understands and shares my anger. He goes on to tell me of 3 of his friends, all with lyme, two who have recently ended their suffering by the only means possible, ending their lives, and the third...22 yrs old and in a wheelchair. She evidently is having seizures on a regular basis and her visits to the ER have resulted in accusations of her incredible talent as an actress. Why anyone would dare to think it possible that someone could wish this upon themselves is absurd.
Yet at the dinner table, I am accused by a family member of making excuses for my present situation. Like I enjoy being homeless, relying on my aging mother and spending 24/7 in bed. My only social life is when I get out to a doctor's appointment. Period.
How can I expect society, the legal system, my doctors, to understand my illness when the people I live with don't. They say pain is invisible. So is Lyme in so many ways. Just because I am a fighter and rather than complain, try to find a smile everyday. It's what keeps me going. But unless I complain, and voice out loud my suffering, all assume I am fine. My family and friends though are not to blame. The politics surrounding this disease have stifled our cries for help, the doctors that treat this disease, and any information that would help the general public truly understand how horrific it is to suffer from tick borne disease. My dear friend who I sometimes stay with tells me she never got it until she saw me on a daily basis. I always sounded fine on the phone but seeing me try to get through a daily routine was another story. "I get it now" she says. And she does understand it more, but as much as she tries, she could never truly comprehend this complicated and hellish suffering. I cannot describe, even to those who try their best to love me through this, in words in any language, the strange and terrifying symptoms I experience. It is a disease like no other; I am convinced of that.
I wish I could write more, there is so much I an unable to communicate in words. I am overwhelmed with so many thoughts, hopes, dreams and visions. And fear, anger, disgust, envy, regret and outrage. If only I could somehow put into words how it feels to have Lyme. If only I was well enough to fight for justice, not only for myself, but for all of us. If only....
12:30am: Just read of yet another death due to Lyme Disease. 52 years old. I am furious. And, I feel like I've just been kicked in the stomach, the rest of me is numb.
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