This is such a crazy time in my life. I remember starting this blog because I wanted to help people who were going through Chiari to know that they were not alone. Today, I suppose I will speak to those who have been dealing with issue after issue after issue and it is wearing upon their self-esteem.
I used to be one of the most active people I know. I love the gym, hiking, climbing, swimming, basketball, volleyball. I prefer hiking though especially because I think Las Vegas is a beautiful place with many hidden gems. I enjoy how I feel when I am out in the elements and I love how my body feels when it is frequently pushed to it’s limits. So when I look at my current life where I am at the whim of my body and the weather I have encountered a few problems, and I would like to share them with you. I am not saying I have all the answers, but I know that Chiari can make you hate your body.
The Physical
On of the first things I realized was that my fingers no longer worked properly. My piano teacher thought I was not practicing, but it turns out that my nerves were malfunctioning. I failed piano. We all know about the headaches, but let me touch on the weight gain. Since at least my surgery, my body stopped producing Progesterone. Now, I am no doctor, but what was explained to me was that without progesterone, my body is Estrogen heavy, which means my body hoards calories, EVEN WHEN I COUNT THEM SO CAREFULLY. I do go to the gym, I do drink water. Yet, my body holds onto weight like a wolf holds onto a rabbit. I feel so ugly and fat. I feel like no amount of clothing or makeup can make me feel good about what I have become. I listen to the thoughtless words of others telling me I look so pretty, or my makeup is so nice, yet I feel like a sludge-monster flopping around everywhere, trying desperately to regain the fitness and healthy glow that once came so naturally and easily. People don’t realize that their opinions mean nothing to me. I need to feel good about myself. I need to look in the mirror and be happy with what I see. Right now, I am disgusted with my own body. I am sickened by the way I look and I have never felt so ugly and unattractive in my life. I do not wish to see myself in the mirror, and I avoid full length mirrors because that is just more horror to see.
The Emotional
The bad part about feeling there is something not right physically, is knowing there will always be an emotional component that needs to be addressed and dealt with. I am no different. I am at a point in my life where I am kinda tired of being alone. I do want someone to make memories with. My daughter will probably be out on here own in the next 6 or 7 years. As that time draws closer, I think about what my life will be when I am alone. I think about how I have slept alone for so many years, and that is a pattern that might continue forever. Please don’t get me wrong, anything could change, but I tend to plan my life on the most reasonable assumptions and I can not assume that I am going to get married or find someone who loves me.
What irritates me right now is that after seven years of being alone this now bothers me to no end and for the first time in as long, I like someone. The old Michelle would have flirted and given every indication that I like him, but now, I am so self conscious that I can’t even see why he would like me. I like at myself and I am so unhappy with me and I imagine no one could be happy with me. I think about my health problems and I can’t imagine burdening someone with such a responsibility, but that means I have to do it alone. I think about how sexy I could be to someone with a C-Pap, or when I am curled up in pain, and I quickly become ashamed to think that someone could love me. I would never give them a chance. Every time I see this guy, a part of my heart dies.
I am not saying that this is the “healthiest” way of thinking, I am just trying to be honest because chronic illness makes you feel worthless to society. People make you feel like you are nothing but your clothes and makeup. and if you look good to them you should just be satisfied.
The Mental
One of the hardest parts about Chiari is feeling like I am not going crazy. When it became noticeable that I was beginning to forget a lot of stuff, my family blamed me for not having motivation. When the headaches and nerve problems repeatedly sent me to the doctor, I was told that there was nothing physically wrong, but I might be seeking attention. When I was diagnosed and given brain surgery, friends thought that I must be faking it because I have a small social media presence and I try to enjoy my crappy quality of life. When something hurts, lay-doctors tell me that I should lose weight, try this herb, use this oil, stop eating this, drink more of that, and Lord only knows the other pieces of thoughtless advice I have been given.
There is nothing like when the people around me who are supposed to love and support me make me feel like I are the reason that I am hurting. It makes me ask myself if it is really that bad. It must have been for me to have brain surgery, right? Am I wimp? Maybe everyone has soul-crushing headaches and I just give up to easily. Maybe everyone’s food get stuck in their throat and I just don’t know how to swallow correctly. Maybe everyone has trouble going to the restroom but no one talks about it. Maybe everyone forgets anything from longer than 10 minutes ago. Maybe everyone dies a few times at night. Maybe I am just not able to handle all of the things that life throws at us all and I deserve to be miserable because I am not strong enough to live a normal life anymore.
This is how people make me feel. Everyday. Everyday. Everyday. Everyday.
Luckily, my family is awesome, but I know many people in my medical position do not have that. I am thankful that I have a strong faith background, because that is where I draw my hope from because without the promises of the Bible, the promise that I will one day have a perfect body and mind, I would kill myself. I would not want to exist in this world in this condition because I feel like a part of a person who has been broken and returned.
Again, I have no desire to take my own life, but being honest means sharing my darker thoughts and letting you know that I turn these thoughts over to God and I pray daily for my purpose to be revealed to me. If you don’t believe in God, I am not sure what to tell you, but I can tell you this; it is natural to have dark thoughts, especially when your body is dripping with pain, but it is not natural to dwell on them and you must find a way to release that inner turmoil so that you can find peace daily. Everyday I have to pray for the strength to get from sunrise to sunset without a major incident. Some days I do better than others, but I know in my heart that if I let the dark thoughts take hold for more than a day, I will probably hurt myself because nothing I could do to myself would hurt worse that my headaches. I have torn skin away (unknowingly) when in a fit of pain, imagine what I could do with my will behind my actions.
I hope that if you are reading this, especially if you have been in intractable pain, that you know that I understand what you are going through. I understand that your whole life seems like a mockery of who and what you once were. I understand that you may feel ugly, unwanted, and unattractive. I understand that people say stupid, trite things to you in order to make themselves feel better. I understand that at times you don’t know if you can live through the pain. I understand that sometime you are infantilized by the people around you who can’t seem to see you as a whole person any more. I understand that you feel you have lost your purpose and you don’t know what will become of your life and that is scary. I understand that people avoid you because they don’t want a sick friend. I understand that you are afraid to make plans because you are tired of just disappointing everyone. I understand that you may never feel normal again. I understand that you just want your old life back. So do I.
I wish I could tell you that this will get easier, but the longer my own journey goes on, the more confusing it has become. I rest in the fact that I have a loving family and I believe that on the other side of life, I will no longer be in pain. I have nothing but love, faith, and hope. I pray that anyone who reads this finds them too.
The Life of a Music Monkey 