When I awoke from the coma, the first thing I registered was the bag of platelets hanging to the left of my head. I immediately knew I was in trouble - that something major had happened - but I wasn't scared. I didn't feel any emotion. I remember seeing Nathan, then my mom and my sister. I remember thanking them for making the 6 hour drive to come see me. They looked exhausted and distraught but that didn't register. I was too thirsty to care about anything. My mouth was drier than I've ever felt before and it was unbearable. I begged for fluids but they told me that I couldn't have anything to drink until the fetus was delivered. I didn't care. I continue to beg and bitch until a nurse let me have a sip of Sprite Zero so I'd shut up.
Once I got a little relief (and believe me, that was temporary), I asked what had happened. They explained that I had HELLP Syndrome which I was not really familiar with. I was down to 30,000 platelets (normal level is 150,000 to 450,000) and the transfusion was my only hope. They explained that our son was already dead and that I couldn't have a proper drink until he was delivered.
I told them to cut me open. C-section NOW! My brain wasn't working right. It didn't dawn on me that with such a low platelet count, I might bleed out were they to cut me open. All I knew was that I was painfully thirsty. I argued and griped about it until they let me have another sip. My fuzzy mind spun trying to understand the biochemistry going on. What was happening to my platelets? Where were they going? It just didn't make sense.*
I looked up at the collection of bags on the poles and saw one labeled "pitocin." I knew that one. I followed the lines down to my arm and saw the tubes go into the side of my arm near the elbow - not the traditional place for an IV. I looked quizzically at Nathan and he explained I had a PIC line (peripherally inserted catheter). They had used an x-ray machine to insert a tube into my arm that lead to my heart. From it they could send medication and draw blood without further sticking me. I blessed them for that. I hate needles.
They rolled me over and gave me a vaginal suppository, a prostaglandin that would help me dilate and get this over with. This is a medication that was originally planned to be banned under the Mississippi "personhood" amendment 26. I think that's when I realized I had a catheter. I chalked it up as another victory that I'd been too busy dying to feel it going in. I asked about it and Nathan told me my kidneys had started shutting down and I was passing reddish-brown urine. Gross.
That's about the time I noticed that something was wrong with my vision. I could see spots everywhere, gaps in my skin and the wall. I looked at my arms and realized I was terribly swollen all over. My eyes had swelled and that was causing the weird spots. I didn't care. I was too thirsty to care.
I felt it when my water broke. It was a wonderful relief - the way you feel when you've been holding a full bladder for ages and you finally get to go. They dialed up my morphine but I didn't care. I didn't feel any pain or fear. I felt the medication hit my heart and I remember thinking, "This is what morphine feels like? It's not worth the bother."
Delivery was pretty quick. There was all the "push, push, PUSH" that you hear in the movies. There wasn't any pain, just pressure. I delivered lackadaisically, really only caring about getting something to drink.
Then they laid my son in my arms. I looked at him. I thought I saw him move.
"Did he move?" I asked? "I thought I saw him move."
No, they told me. You're shaking.
I looked at him again. I held him but I don't remember touching him. I sat still while the family took pictures. My mother and sister were openly sobbing. I don't remember what Nathan was doing. I might as well not have been there.
They took him a few short minutes later and asked how we wanted to dispose of him. I jumped in with cremation. I was adamant. I was consigning my son to the flames. I was designating him as "medical waste." It sounds horrid but all I could think of was that I was not going to let my mother get his tiny body and bury it at her church so that she could have a perpetual monument to grief and guilt. I was not going to let her use my son to manipulate me into going to church. I was not going to let her claim an inch of my son for Christ.
He was born free and he died free. I am not chained to his grave. I experience him every day in his father, in the air I breathe, and in my continued existence.
I spent the weekend in the hospital recovering quickly. Although my physical recovery was remarkable, my mental recovery was far less so. I was considered a very high suicide risk and the nurses counselled Nathan that I would have to be watched for a very long time. Strangely enough, suicide hasn't crossed my mind since that day. I've never had a stronger, sharper will to live. But my life was bought at a heavy price and I'm not yet sure how much more I'll be asked to pay.
Although the brain scans showed no permanent damage, my cognitive abilities have been impaired. I don't remember things very well any more. I don't type or spell as well as I did in the past. I often get my words mixed up or I blank out when I speak.
My blood pressure is an absolute wreck. Without two types of medication each day, my blood pressure will skyrocket and I will die. I take both Bystolic and Lisinopril to deal with it.
I suffered some nerve damage in my legs that got better over time. I have restless leg syndrome but, with exercise and a massage pad, I deal with it well. It took me a year to fully be able to walk again. I had to use a cane sometimes for the first year but I was damned and determined to get rid of it. Now I can walk around a Walmart Supercenter without stopping to rest.
I gained weight during my convalescence (but only because Nathan fixed my meals and made me eat) and that has not come off. I'm still working on it. Nathan still fixes my meals and rations out my medication. I don't trust myself with medication since my last overdose and hospitalization in 2010. He also encourages me and helps me continue moderate exercise. I'm taking Victoza injections to control my type 2 diabetes and I have a pill I can take to help with Irritable Bowel Syndrome. The pill doesn't really help much.
The worst impairment I've suffered is mental. I dealt with survivor's guilt a lot that first year but I never really grieved. I still haven't. I don't know if it was the morphine or what, but my emotions never really came back. I've had a precious few bouts of breakthrough crying but they feel just as fake and forced as the smile I wear. My morality is solely a product of my rational thought; it's something I choose to do and not something I feel. If I were living according to my feelings, I would be in prison because I feel no empathy or kinship any more. I am kind because I choose to be. I do what's right because it's for the best.
The schizoaffective disorder is what won me my permanent disability and it will likely never go away. Although the hallucinations and delusions of the schizophrenia are generally well controlled, I do hear breakthrough voices and sometimes feel paranoia. Sometimes I think the walls and floors are folding in on me. Sometimes I get the feeling that there is still a divine hand on me that sustains me and make me strong. I struggle to accept these as biochemical anomalies and not as fact. Although my life is better without the voices, I miss them and the richness they gave my life. I take Seroquel to combat the psychotic symptoms.
The bipolar part of the equation has been more difficult. I'm currently suffering through a major depressive episode. I don't feel sad or worthless too much though I remember times when I did very vividly. I do not feel suicidal thanks to my Lexapro. What I do feel is rage. Sometimes it's focused, sometimes not. There are times when it takes everything I have not to slam my fist through glass or the wall for no reason. I live in fear of my next manic episode because each one is a harsh test of my relationships, my abilities, and my character.
And finally, I can never get pregnant again without dying. I'm on the pill right now even though the risk is higher at my age for blood clots and such. Now that I have Medicare, I'm planning to schedule an Essure procedure. They'll take some corkscrews and put them in my Fallopian tubes. The tubes will scar up and close thus making me permanently sterile. Even with Medicare, there will be deductibles and copays so it's a work in progress.
This is my life now. I've lost so much and I feel like I have little to show for it. There is a lot of potential guilt in thinking that you're so pathetic you can't even have a baby right. I've combated that by sharing my story and fighting against both anti-choicers and mental health bigots. I've put just about everything publicly on the line, opening up myself to some ridicule and risk (if you can believe that), so that people will know how dangerous and disabling pregnancy can be. That doesn't make me a hero but it does give me a reason to keep going. I'll never be a shining star in the movement or a big name but I will do what I can to educate, encourage, and support my fellow humans.
I don't do it because it feels gratifying. I do it because I've decided it's right...and doing right is how I choose to spend my remaining hard-won days.
*As I understand it, HELLP causes platelets to clot within the blood vessels. As these platelets form their sticky clotting webs inside the vessels, red blood cells get trapped and ripped apart. So you lose platelet availability from the internal clotting and you lose red blood cells from them being torn up. Hence:
(H)emolysis
(E)levated
(L)iver Enzymes
(L)ow
(P)latelet Count
No comments:
Post a Comment