A contribution by Maria McCutchen, author of “It’s All in Your Head – A Life of Mental Fogginess And Physical Pain”
Living with an Arachnoid cyst is tough. It tests you emotionally, mentally, and maybe most of all, physically. When I started having symptoms from my cyst, although subtle at first, I knew something was wrong. I just couldn’t think straight. Before long, not being able to think clearly, quickly spiraled into many other unnerving symptoms that left me feeling like a shell-of-a-person.
In the beginning, things stopped making sense to me – processing what people said to me became difficult. I found I was having to really concentrate hard on what people said to me and trying to figure out how to respond to them. Conversations no longer came natural to me. My responses were usually off-topic. I would give strange answers which were usually followed by strange looks. Like I was crazy. It was really embarrassing to my husband. But it was especially embarrassing to me. I could tell that what I had just said, wasn’t right.
Soon after, normal, everyday tasks seemed more foreign than natural; like, driving, grocery shopping, and cooking. I would have to think really hard about what I was doing and what I needed to do next. Following directions, steps, or anything that required concentration was quickly fading.
My husband, who is no longer my husband as you may know or realize, grew to where he no longer knew how to support me. He wasn’t sure what he should be doing and he wasn’t sure who he should be taking me to see. He was at a complete and utter loss. I tried to steer the boat as much as I could, but with little thought process left, I relied on him, as well as family members to help me figure it out.
By the time I found a neurosurgeon in Phoenix who was willing to review my MRI’s if I mailed him copies, my thought process was so poor, I hardly knew who I was. The world around me seemed more like a cartoon-world, as compared to the once, vibrant and lively world I had once lived in. I was scared and confused. And all I could do was pray that this new doctor would treat me – help me.
My husband stood by me the whole way through. He let me cry when I needed to. He listened to me continuously as I complained about my situation and how I felt. He reassured me when I was scared – scared about what was happening to me, and scared that I wouldn’t get the treatment I needed to ever be able to think clearly again.
There were many nights that all I wanted was for him to wrap his arms around me and hold me so that I could feel his strength, because I felt so weak and vulnerable. And he would. He would hold me while I fell to pieces.
My husband at the time was there for me, 100%. He was at times, just as confused as I was; not sure what to do, not sure what he should be doing for me, and not sure what was going to be the outcome. But still, he was there. He went to all my doctors appointments with me. He also tried to learn about the type of cyst that I had, and he asked a lot of questions to the doctor to learn exactly what it was I was dealing with, and what I would be dealing with when it came to treatment. To me, that was loyalty; dedication, and true love. These are the reasons I found it very disheartening when one day, a few years later, when my problems had surmounted and I developed a Chiari Malformation and brain sagging, that I began to see a change in him. I guess everyone has their breaking point and for him, the new and added problems were what broke him. He changed.
I was bedridden and things were looking very grim. I was getting worse and it didn’t appear that I’d ever get back to my old, normal self. I believe that is what he thought would eventually happen, and when it didn’t, he finally had had enough. His personality changed, he grew more abrupt, showing signs of being fed up, and becoming more cruel towards me. Once it was clear that he was never going to get his “old wife” back – the girl he had married, he threw in the towel. He began to voice his feelings about me not being the same person and he didn’t know how much more he could take.
His lack of compassion for “what I was left to live with,” finally took its toll and we divorced. He couldn’t take it anymore and began to become cruel with his words and actions. It was clear that he was “over it” and wanted out. He wanted a normal life – a life that I could not give him. And on that note, he filed for a divorce.
Today, I am a single mom of my two beautiful boys; now 14 and 11. As wonderful as they are, it has been tough. They too, sometimes forget that I have disabilities, and hold their expectations of me and what I can do – high. But they are understanding and they are good with me. And I believe that as they get even older, they will understand more.
Being a single parent with a disability, especially with a disability of the nature I deal with, is beyond hard many days. There are days I wish I had a husband to help me – even if it’s to cook dinner for the kids one night when I don’t feel well, or take the garbage to the street when the boys forget, or drive them where they need to go because I feel too ill to drive, but must. So yes, it is hard.
There are days I wish I were still married so that I had someone to lean on for whatever it is I need to lean on them for; whether it be emotional support, or physical support. But then again, there are days that I feel like our divorce was the best situation, because to live with someone who no longer wanted to help me, or could help me, was too much. His insensitivity to my ongoing medical problems was proving to be worse for my health, than if I just got out and tried to make it on my own.
If I had to give advice to those who are living with someone with neurological problems, whether it be a brain cyst, Chiari malformation, or any other neurological problem, I would tell them that patience is key. I would tell them to always try to remember why they loved them to begin with, and try to focus on that; because neurological problems can change a person and their behaviors. I would remind them of their marriage vows to “love them, in sickness and in health.” And I would ask them: “If it were you – if you were the one who had been diagnosed with a rare medical condition that no one seemed to be able to figure out, or know how to treat – would you want your spouse deserting you?”
Love is supposed to stand strong, in good times and in bad, as well as in hard times and easy times. It is the hard, unpredictable, and unsure-of times that will test your relationship and prove the kind of person you really are. If you have real love – genuine love for the person you are with, there is no illness or condition that should be able to destroy that. If anything, it should bring you closer because you have empathy for your spouse. You want them to get better, and you want to be a part of them getting better. To me, that, is true and enduring love.
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It’s All in Your Head – A Life of Mental Fogginess And Physical Pain
by Maria McCutchen
Maria McCutchen did not have time to be sick. With a husband who had just lost a job, two young sons, and a cross-country move on the horizon, who had time to be sick? Maria didn’t have time for a common cold, let alone a major medical condition. But one day while shopping in the grocery store where she had shopped hundreds of times before, she couldn’t find the milk. It was then she knew what she was feeling was more than just stress or exhaustion. There was something very wrong.
After consulting a few doctors, Maria discovered she had a rare brain cyst known as a posterior fossa arachnoid cyst—a very large brain cyst. Hearing these cysts were normally asymptomatic was of little comfort, especially because she felt her mind and body slipping away more and more every day. Normal mental and physical functions were becoming harder to control. Even if the doctors didn’t believe the cyst was a problem, she knew it was.
It would take months of living inside a shell of a person that she’d become, months of living in a mental fogginess and sometimes even physical pain, before she would finally get the medical attention she needed. It’s All in Your Head chronicles her harrowing medical odyssey and her attempts to regain some sort of semblance of her old life after treatment.
