I am crying. There are tears muddled with black mascara streaming down my face, like small ink rivers searching for a black sea. I wish I could stop, but my eyes betray me. The most ridiculous part of this whole scene? I am crying because my chicken parmesan (the one I thought was going to be a delicious pasta dish), came out as a sandwich. That is it. That is the tragic calamity that has brought me to my knees, struggling to catch a breath. The thing that has made me feel that the world has turned on its’ side.
How the hell did I get here?
I should say, first of all, I am 28 weeks pregnant. So, well, there is that tiny little hormonal piece that has contributed to this complete loss of control. But these tears are so much more than that. The words I’m saying, the letters I’m typing, have been sitting in my mouth, in my fingertips for a year, begging for a chance to be heard. Part of me felt like I could not do them justice. I felt pain and fear and anxiety and guilt like I have never known, and I never felt that I would have the skill to give those feelings the life they deserved. But alas, as I sobbed into my stretched (used to be cute) white Fabletics tank top, the one that now fits over only half of my stomach, I just knew that they could not remain unspoken anymore.
The last time I wrote, I felt relieved that I had spoken about my experiences with eating disorders. I revamped my morning routine, I fell in love with yoga and barre, I was creating easy dessert recipes and small exercise routines for my readers. Was life a fairytale? No. Absolutely not. But, I didn’t know at the time what was about to happen to me, and how it would lead me into an abyss that I have yet to emerge from.
You see, I loved yoga and barre in the summer of 2016. I loved it so much that I even did two-a-day classes. I felt like I was discovering a peace in me that I had not felt before. My teenage and adult life revolved around working out, when I was going to work out, how I was going to work out, what I was going to eat (and at my dark times- not eat) to support my work outs. Last year, at this time, I felt like I had finally achieved a sort of recovery, where I was able to exercise because I genuinely adored the practice. Things felt right. And then came the pain in my left arm; a feeling like I was hitting my funny bone, but in my wrist, all the way to my shoulder. Now, I work with therapists (and I am one myself), so at the time, I wasn’t concerned. Some PTs at work looked at me, and an OT did a Myofascial Release on my neck and arm. A few days later, I was convinced that I had irritated some muscles, which had then pinched some nerves, and was committed to getting once monthly massages to alleviate the inflammation. All good.
Two weeks later. As I walk into yoga class, I feel as if I stepped on a pin, and a shooting numbness intertwined with pain strikes up to my hip. My foot is numb the rest of the night, and I am paralyzed with fear. My husband say’s I’m a hypochondriac; I am, to be fair. But this, I just knew too much about the body and how it worked to ignore the symptoms, and immediately went to the doctor. Doctors have a tendency of speaking to you very bluntly if you are a medical professional. I appreciate this for the most part, but there are some occasions, like you will read in the upcoming paragraphs, where a little delicacy would have gone a very very long way. The doctor confirms my fears and tells me that immediately after my vacation (I was leaving the next day to visit my sister in Colorado for a hiking trip), I need to go to the local neurologist and rheumatologist.
After a truly wonderful trip, one in which I commanded to myself that I would not think of this impending gloom, I found myself lying in bed at 2 am, completely breathless. I could not, and I truly mean this, I could not get my lungs to activate. I thought, maybe my shirt is too tight. Maybe I need to lie on my side. Maybe I should sit up. But no matter what I did, I felt as if I was buried alive in concrete, and I had to consciously will myself to contract my diaphragm.
What happened next could fill up six blog posts, but I will spare you the details and give you the highlights. My neurologist (whose average wait time is two and a half hours), discovered that I have a whole laundry list of things wrong with my cervical spine. Herniations, stenosis, degenerated discs, and the worst term….demyelination. I was put on intense exercise restriction. No bending of the neck (yoga, barre, life basically in general), no compression of the spine (running, lifting), no jarring (no walks with my pup), no pressure build up in my neck (again, lifting, crunches…). In the span of two appointments with my neurologist, I went from an active yogi, coach, therapist, friend, dog mom and wife, to nothing. Absolutely nothing. I went to work, I came home, and I sat. I sat in sheer fear that any move I made could cause nerve problems (my diaphragmatic nerve was pinched by my swollen spine, which cause me to not be able to breathe at times). I lost every part of my identify, and I truly thought I could not sink lower. Isn’t it always like that? When you think you cannot take anything else…it comes?
He pointed to my CT on the oversized computer screen, while sitting at his oversized, too dramatic desk, and said, “and this is what MS looks like”.
I’m not sure I remember the rest of that appointment with the neurologist. I remember going home and getting into the bathtub, and turning on and off the hot water with my toes. I remember thinking that I didn’t want to lose my eyesight. I remember thinking I didn’t want to crush my parents when I told them, and I remember my mom asking me to hold on when I called her because she was going to throw up. I remember the doctor calling and saying he wanted to do a CT scan of my brain, to confirm the diagnosis. I remember wanting to drown in that bathtub.
For those of you who don’t know, myelin is a sort of armour that covers the axons of our neurons (which in turn, allow for efficient communication of our cells). Remove the myelin, and lots of yucky things happen, just like a knight in a fight without his armour. One of the most well known and common demyelinating disorders is Multiple Sclerosis (MS), and it can be a beast.
For the next two weeks, I floated, no, more like drowned through life. I cried every day. I couldn’t concentrate at work, and I couldn’t work with anyone that had MS. I did the things you’re not supposed to do. I read every article, every shred of information. I sent my scans to other doctors and I tried to imagine a life where I had MS. And slowly, I did. I thought, I am strong. I can do this. I can beat this. I think that is what everyone says when faced with something so daunting. My next CT comes. Another 4 days of waiting in agony; no, to be fair, I was not in agony. My husband, who tiptoed around me like I was made of glass, was in agony. My family, who spent every second of those days thinking about it, was in agony. I was somewhere in between denial and acceptance. The CT comes. He pulls it up on the screen, behind his massive desk and tiny glasses. He says, “brain is clear, no MS”.
I don’t know what this means.
I am confused. I think I am happy… I’m happy, right? Of course I’m happy, don’t be silly. But I am so confused. My spine is still a mess. That has not changed. My cells have still demyelinated themselves in my spine, and that has not changed either. But for now, my brain cells have not. So next is blood work. And the tiny miracle growing in me.
Losing identify does some insane things to a person. I was completely lost, I had no idea what to do with myself. I spent 6 months not doing any of the things I needed to do for my sanity. The darkness seeped in. The disordered thinking seeped in. The guilt, fear, anxiety took hold. And it affected everything. There are things I cannot tell you. I wish that I could. I wish that I could be the type of honest writer that could bare every secret, but I cannot, and I’m sorry. What I can say, is that things were not good.
What happened next is a God thing. I simply have no other way to describe what happened, how it happened, how she is alive. You see, when one person in a marriage isn’t good, the marriage suffers. There were nights I drank myself to oblivion, and there was one night where I was able to drink myself into forgetting how lost I was, how terrible I felt. The next week I had another MRI, with contrast. Completely contraindicated for women who are pregnant, and can kill an embryo before it even has a chance to be viable. The next three weeks were a blur of parties and family visits (my husband had just finished his course in Texas, made it and graduated). I drank more champagne than water. We went to Canada, and I felt awful. Not the sinking, “I don’t know who I am” awful, but physically awful. I couldn’t eat, I was exhausted… I was pregnant.
I have to interrupt myself to say that I love my daughter.
I love her more than I ever thought I could love someone. If something were to happen to her, I would die, actually. The timing of me finding out I was pregnant though? Bewildering. How? How is this possible? With an MRI, with all the tests, with all of the alcohol, how did she survive? Why? Why now? How, if I cannot even handle my own self right now, and I going to be able to handle a tiny human?
The blood work comes back. I have an autoimmune disease. That, they are certain of. But they don’t know which one. They guess Lupus. Lupus is the most dangerous autoimmune disease during pregnancy, so I am put on more medication to prevent Lupus from affecting the baby. I am listed as high- risk.
My baby is beautiful. She is perfect and rebellious. She is due October 14th.
I’m not crying anymore. For that, I am thankful. This entry does not have a conclusion, a happy or sad ending. I am still on exercise restrictions, as the swelling in my spine would not be able to be contained with steroids (because, baby), so I have to be more careful than ever not to mess up my precious, delicate spine. I am scared for what will happen when the baby is born. I am scared that I will not have enough of myself to give to her, that I will not be enough for her. How can you give yourself if you are lost? I am still living the confusion, the unsolved blood work and CT scans. I am still in the dark forest. I want to find me, someday. I want to work on finding the me I was, so that she will know me. But for now, I can accept that I am lost. What I can work on right now, is scrubbing my black streaked face, picking myself up out of the chair, and reading my belly a story. Hey, it’s a start.
Until next time, find your peace.