Diagnosis

Six years ago this month I was diagnosed with Chiari 1 malformation. I sat in this realization yesterday while I waited in the same parking lot to see the neurologist that would deliver the news. It was news about why I was having headaches all the time. It was news and an explanation as the doctor and I looked at the MRI image of my brain. I heard “Chiari 1 malformation”. I heard “slowing down of cerebral fluid”. I heard “no cure”. I heard the term, “pressure headache.” I did not hear much more than that.

I remember that day very well. If I thought about it long enough, I could probably even tell you the picture or painting on the wall of the room I was in. I could definitely tell you what room it was if I went back there. Alas, here I was, back there. It has been a few years since I have seen this doctor. I also remember trying to comprehend all that she was telling me and realizing I was alone as I sat there. I was married at the time, but husband did not want anything to do with supporting me. I would soon learn what would happen with him.

This is what I knew at that time about what I was dealing with. I knew that the pain in my head was getting worse. I knew that the will to live was getting harder and harder to comprehend as each day went by. I knew my quality of life was being affected. I knew that my teaching skills was being affected because I was always in pain. I felt helpless. I never knew such pain. I never had a migraine before this all set in. I would drink a glass of water whenever I had a headache and it would go away. I had not dealt with migraines, headaches, or anything like I was experiencing in my lifetime.

I also remember hearing the doctor say that I was probably born with this condition. That something must have triggered it and that is why I was just now experiencing pain. The November before, November 1st, I woke up in the middle of the night to drink the second half of my solution for a colonscopy prep. I woke up with the worst pain I had ever experienced. It was across my forehead and I was on the floor crying and asking Jesus to take me. I felt like throwing up and I did. I am not sure what I did to make the pain go away but it eventually did. It would have been my first ever migraine. This is what triggered my malformation in my brain. This is what triggered it. I am very aware.

Chiari 1 malformation has no cure. What I started to read about it, well it was beyond overwealming. I reached out to my friend who is a doctor and she sent me sound information about what I had. She could not advise anything, but I was grateful to have the information she would have looked at as a doctor. I still think about how I have something that has no cure and it overwealms me. It not only has no cure but no two cases are the same. What I would struggle with could be and would be very different than what someone else may struggle with that has the same thing. There is no hope in this. The unknown is a really scary place to have to set up tent in.

Three months after my diagnosis I found myself sitting in the office of a neurosurgeon. I sat numb as he explained what he would do in surgery on my brain. I sat in numbness and disbelief that this is what I would need to have done. I sat and remember telling him that I felt like I had no choice as the pain I was experiencing was affecting my life and I was battling to stay in this world.

April 9, 2018 was when my surgery was scheduled. I had no idea what I was in for. I continued at work and made the arrangements for my son to be taken to school while I was out. I did all the things I could to make sure everything and everyone was covered while I was in the hospital. I was to stay in the hospital for 3 days. This would be my longest stay in a hospital. I was not afraid of staying in the hospital. I knew I needed to do something about this pain. This was my only option. I beleived that this would help me, so I had to do it. I did not really have any choice.

My husband and I did not discuss my surgery or what would be done or how I would recover. Looking back, that was a red flag. I was not expecting to be out for three months. Even that was too soon for the type of surgery I would have. I would not expect the pain after the surgery. I did not expect the 20 staples they placed in my neck. I expected the hair to be shaved. I did not antipate the lack of concern and lack of being taken care by my husband. I did not anticipate a nurse being there for me when I had no one.

The day of my surgery came and my husband was there with me. He was there when they prepped me for this surgery. A young friend and her sister came to my room while I was waiting for the surgery to start. She made me laugh and made the mood light. It was what I needed in going in for this surgery. I am grateful God sent her and her sister. When I awoke from surgery, the pain in my neck felt like I was hit by a baseball bat. I remember as soon as I woke up I asked for ice. Six years later it is still the only thing that sometimes helps. I also remember when I woke up my youngest son, my husband, and his mother were in the room. I do not remember what was said or not said. It did not matter. I was in extreme pain, I did not want to hear anything from anyone. The nurse on staff gave me pain meds and wheeled me to a room. I was in and out of sleep for the next three days. I vaguely remember people coming and going out of the room.

The pain was so bad. What had I done to my body? When would this pain ever go away? Was the surgery going to really help me with something that has no cure? All things I tried to process. The only real conversations I remember having at that time was with the one nurse who really tried to help me. My husband was not there round the clock. I do not even remember him being there other than when I woke up. He was not the husband advocating for his wife. I was so alone. I felt so alone. Isolated in my new state of having this damn incurable thing going on in my brain. I eventually was discharged from the hospital. I had the surgery on a Tuesday and left on a Friday. I was ready to leave the hospital but I would never be able to antipate the recovery once I got home.

Ice packs and pain meds. Less pain meds as days went on. My husband had only taken the days off that I was in the hospital. He would return to work the following Monday. He cooked the meals at night and took our son to his baseball practices. He never sat with me and talked to me about what had happened or how I was feeling. I was left to sit in all of that alone. My older daughter came every couple of days and would clean the kitchen or help me with a sandwich. She would at least talk to me about how I was feeling. I still was in shock. Shock about having brain surgery. Shock about the pain that I was feeling.

Six years later, I am still in shock. I was grateful for my daughter who was there for me, who tried to make me laugh when my life seemed so damn serious. I was hopeful about my recovery as each day passed. There seemed to be healing and recovery in whatever form that looked like. There was no label of normal recovery with something that has very little research. There is no normal recovery for something that has no cure. You can only do the steps you need to in order to try to alleviate the pain. But when something happens in your brain that has no explanation, you can not just treat it.

So I sit, six years later, still in disbelief that this is what I have. I have headaches daily. They range from 2-7 and can vary throughout my day. I know light, sounds, and smells can make it worse. But have realized that stress makes everything worse. This diagnosis did not destroy my marriage. But it did reveal the heart of my husband. He was not there for me. He showed his heart of no love for me. It showed me that he would not be there for me through, “sickness and health.” He was never capable of that kind of love. I would never feel that from him. He can never make it right, he was not there for me. He did not attend the many appointments I had leading up to and proceeding my surgery. He was not capable. He never had it in him and there were signs. He was not there for me after I had my colonscopies and did not even take me to them. He was not there when I was diagnosed with the precancerous polyp in my colon. He was not there when they read the results of the mammogram. The list goes on and on. He was never capable.

Leaving someone alone to journey through such life changing news is inhumane. In whatever capacity that may mean. He did what he was capable of doing. I expected more. I expected the movie results where the husband is there fighting for his wife and doating on her in the hospital. Every now and then you see real life couples that are there in that way for each other. It was not what my marriage looked like. What a disappointment that someone could stand in front of all their peers and confess their love for you. But when it came down to your lowest moments in life, you left them crumbled up on the floor crying alone. Better yet, in a bedroom in pain, knowing you could help but staying in the other room and letting someone you “love,” suffer alone. Cruel is an understatement. And with him, not only was I left alone, but he was pleasuring himself while I suffered. So cruel what this man did.

As hard as it is to talk about, or write about. It needs to be said, it needs to be processed. I can not just keep holding onto this as the bitterness will fester and become part of who I am. Yes, chiari and its diagnosis led to the unraveling of my marriage. But his character was always there, the diagnosis just made it clear as day. I know I am better off without him. At least now I know I am fighting it alone. I know that I have only myself to advocate for. My diagnosis freed me from him. Showed me the feeling of being alone in something and to walk beside others who are suffering.

I may never fully grasp all that Chiari is and what it is to me. It is a part of me now. I can not walk around in my life without knowing that I have it. I can not pretend it is not there. I can not pretend it does not exist, as it reminds me every day. I have to take care of myself and be the best I can be. There may be a day that I can not work anymore because of it. Been having more and more of those days lately. But it will not kill me. It will not get me to end my life. I can get help, I just need to make myself important. The most important. And I need to talk about it.

I feel like I have this secret and no one wants to know about it. I do not need anyone to feel sorry for me, that is not my intent. But I feel like when I do talk about it, it is for the attention and sympathy of others. I have not quite figured out how to not look at it that way. The truth of it all is that I daily suffer from chiari headaches. They are not migraines. It does feel like there is a swim cap on my head all the time. There is pressure on my scalp always. I go to sleep and it is there and I wake up and it is there. My neck holds the tension and some days it is just plain unbearable. The other side effects seem to be flowing in. Fogginess, absentmindedness, forgetfulness. I feel them. But I am also going through menopause and those are symptoms of that as well. I also feel very depressed.

I worry about what will happen to me if the symptoms take over and I can not work. I am not at my best now. Far from it. I am so less than what feels like human at this point. I know I need to be out of the classroom but also know that I need to work. The stress of my job and the gossip and badmouthing is all too much for me to deal with. I have to have a simple life. A simple way of life. Other avenues in my life are lining up. My work has to as well. And it will. I have to advocate for myself. Be late for work if it means I will get help. I have to do this for me and this time now. No one is coming to help me with this and work will just have to figure it out. I can be replaced easily. But I have to keep at work as long as I am able.