Today (the day I wrote this, because this will be scheduled out a few weeks) marks 18 years since my brother was murdered. I suppose it is more euphemistic to say that he passed away or went to be with the Lord, but I am at a place in my life where I have to cut out the fluff and look at the ugliness that life sometimes presents to us.
The mindset began that very day. Whatever innocence or youth I had left was drained from me as I wrote his obituary. Sitting through court listening to the wounds being described, stepping out when they showed pictures. I wanted to be strong enough, but I just wasn’t. It hurt that I couldn’t gaze upon the wretchedness of what man has to offer his brother.
Then I had my daughter. Her dad went to prison, but not before my house and phone were surveilled and all of my life was openly displayed in court. I have never felt such betrayal. It is a burning so intense that I love and hate the feeling. In the end, he served time in the penn and I was the bad-guy who was pregnant. In the end, I got my daughter and he went back to prison for more stupid stuff. This opened my eyes even more to the real truth of any matter. I knew that something was wrong, but I refused to look at the truth of the matter.
Here I sit, two decades later and the state of my health has forced me to look long and hard at truth and how to accept it. I had brain surgery and I have had to accept some things, like:
- there are many sports I can no longer participate in
- I may never be able to return to work in the capacity that I have always been able to function in physically and mentally
- I may never have full control over using the bathroom again
- I will probably use a CPAP for the rest of my life
- the headaches might stay forever…with the nausea
- I may not be able to learn the same way or remember as well
- chunks of time are missing from my life
- I may never be able to suppress my emotions again
This is only a few of the restrictions I live with. It is a chore just to live but I fear dying would take more energy that I just don’t have. I have spent a lot of time in therapy just dealing with accepting these changes because of my health. The feeling of growing more confident in living with my problems was getting very empowering. I have been working to live with this pain and these issues.
Then, last week, my stepdad watched me have a seizure as I slept. I woke up that morning feeling like a train hit me. Later, when he explained to me what happened, I ended up having to go to urgent care so they could make sure I wasn’t injured or needed immediate care. I just pulled some back muscles and ended up with some autonomic dysfunction. I am waiting to schedule my 72 hour EEG.
In the meantime, I apparently bit some of the inside of my mouth off last night. Everything hurts, and I am almost positive that I am having these seizures and just nobody is usually there to see them.
Turns out, of all of the scary, horrible things that have gone on around me, I still refused to REALLY hear what my neurologist said when he told me that he thought I was having seizures. When my stepdad told me he saw it, I had to accept that it wasn’t just a theory from my doctor. When I woke up this morning and pulled the piece of hanging skin from inside my mouth (just bein’ real) I had to accept that I can (and probably will) injure myself if I continue to have seizures. I have to accept that I probably have some noticeable brain damage at this point and things might be less normal than I hoped they would become.
My point? I suppose it is that euphemisms and platitudes don’t change the reality of a situation. My brother was just as much murdered as I am disabled. Sure, he went to ‘be with the Lord’, and I just have ‘some limitations’, but couching life in these nice words sure does make it seem a lot nicer than it is. I have limitations because my brain doesn’t make memories and I have seizures that mess with parts of my body like a leg. “My limitation is that I have poor balance,” sounds so much nicer than, “My seizures stop my leg from working and I fall and hit things, injuring myself and property.”
I don’t even know if this matters to most people, but one feels very fake and close to lying when I say it. The other seems to offend the delicate sensibilities of anyone who does not want to know how you are doing and was asking merely as a formality. I am tired of trying to figure out which is which. Now, I just tell people I am alive and still walking. I feel like this is a truth that can be observed and confirmed by the individual without adding any words that might seem negative.
Many things would be so much easier if we could just be honest without having to lay a bed of roses for these dramatic feelings people have. “Ok, Jennifer, YOU are mad at the office because you put tuna in the microwave yesterday and now it smells like oceanic death so everyone is telling you how inconsiderate you are. Accept the truth. You could have had the tuna cold and not ruined everyone’s week but reheating your TunaRoni on a Monday morning.” Of course Jennifer, instead of being thoughtful and apologetic, is all in here tears and feelings because Johnny said she smells like that all the time. She can’t accept that something she does bothers everyone, so in her mind the truth is that everyone else is unfair to her. (This actually happened, names changed to protect the victims.)
Never would I lie and say that accepting the truth is easy. In fact, it is often difficult because it can shift so many feelings and foundations in life. I will say that it is extremely unfair that I have to accept the reality of my life but other people don’t and they have the audacity to contradict reality with crunchy platitudes while patting themselves on the back for “showing you the positive side of your situation”. For me this happens most at church (ugh, right?) because everyone wants to make God the genie who is gonna fix the problem because we want it that way. Seriously, someone told me that I don’t have faith if I take meds for pain. Another told me that he just takes a pill no matter how much it hurts and I should just get a job. I would go on, but then I will punch my monitor, so I am gonna drop this verse:
As he that taketh away a garment in cold weather, and as vinegar upon nitre, so is he that singeth songs to an heavy heart.-Proverbs 25:20
If I am mourning the loss of my brain function, STOP TELLING ME ANYTHING THAT ISN’T VALIDATING! Any normal person would realize that given some time and understanding of my life changes that I will get through the initial mourning period of the loss of my lifestyle. However, I now see that many people just can’t feel comfortable mourning with me without feeling sorry for me.
Every negative experience I have resounds in the echo chamber of my heart because I know that if I am going through this, that others are going through this. I think about people in churches who may suffer alone because someone was willing to pray for them, but not actually listen to their story. I worry about people in jobs that silently struggle through the day because their issues have been ignored or belittled by co-workers and supervisors. The worst is the people at home who live with unsupportive family members. When those who supposedly love you don’t hear you or don’t care, where do you turn for help?
Too many people are falling through the cracks and it feels like so much of it is because the truth has been abandoned for a much more comforting lie that everything is ok. With my brother’s death, after I was informed I took a shower and went to a friend’s house. Then I went to work that night life nothing was wrong. I was surviving on a lie because I understood that the foundation of my life would be assaulted if I accepted the truth. It came in steps over years.
As for my health, it was wonderful at one time. So many little things happened, but I weathered them fine. When I was told I had to have brain surgery, it took three days of intense introspection and weeping to come to terms with the truth that I needed a surgery that has the possibility to severely injure me or cause death, but that without the surgery there was no question that the physical progression of damage WOULD cause possibly irreversible damage to my spine that would end in disability. I eventually accepted the truth that no matter what I do, I will face a difficult time. I chose the surgery, and I stand by that decision.
After the surgery, I didn’t seem to get better like I had hoped. In fact, things got worse. Coming to accept the truth that things will never go back to anything like they were, well I want to tell you that I nailed it…but I did not. I have been in therapy for over a year and it has been baby steps and setbacks. I have to accept one piece of the truth at a time, then some new issue pops up, and I have to consider that it might stay a permanent part of my life. It’s so hard to know that I will never regain the memories from the parts three years. I only have the few things that stuck in my head. I hope that my EEG supports a diagnosis that involves treatment to restore my ability to form and solidify memories. If it does not, then I will have to accept that truth and still move forward with my life somehow.
The people who only see my life from the outside will never see me put on a brave face as I hear news that shifts my paradigm or listen to me quietly cry into my pillow at night because my head hurts. Everything seems fairly simple because I just have a headache or feel kind of sick. I stopped explaining in depth because people DO NOT often understand neurology and how it affects everything from your movements to your memory to your thoughts and behaviours, so I suppose I can’t blame them for being ignorant of something that is so complex and doesn’t touch their lives. Yet, that isn’t really the issue is it? It is that if I really explain that is feels like someone is hitting me in the head with a hammer and shocks of electricity are racing down my spine into my leg and causing me an agony I wouldn’t wish on anyone. That would make THEM uncomfortable though, and I suppose I should have to be sensitive of the delicate sensibilities of those around me who believe that bad things don’t happen to good people, or God fixes every problem but only if you are actually a believer, or my chakras are cloudy, or my dead ancestors are antagonizing me for leaving the place of my peoples (Tennessee). Apparently, people of all walks of life and any age can be more concerned about their feelings than they actually are about what you are going through. So why do they even ask? Who even knows at this point?
I know this is probably more reading than you anticipated, so if you are still with me, thanks. I am bringing it home now!
Life is full of truths that affect us in positive and negative ways, so we need to FIRST be willing to accept both in our own personal lives. Then, we need to be supportive of other people when they are going through something because we might be instrumental in helping them come to terms with and accept a truth. The hard part is being willing to listen to the excruciating and ugly parts of the story and putting yourself in those shoes. My personal belief is that all of this is the reason people offer up their well wishes and refute the truth. It must be close to impossible to imagine what it is like not having a memory. I wouldn’t have been able to imagine it 5 years ago. I doubt most people want to imagine life without remembering it because they know it carries an uncertainty of what you have done and it affects the perception of time passing. It’s an overwhelming concept when you are living it.
All of us need to work harder to understand one another because no one deserves to feel unheard or invalid. We have to stop trying to solve each others’ problems and learn to comfort and encourage each other. So often we share our pain because we just want someone to acknowledge that we are in pain and that it is normal to be upset about it. Some people need you to just commiserate with them. Now, I am NOT saying spend 5 years doing this for one problem, but if your friend is upset over a cancer diagnosis, STOP TELLING THEM THAT EVERYTHING IS GOING TO BE OK. First, you don’t know that. Second, they are telling you because they need the reassurance that their pain is valid and unfortunately that means feeling their pain and listening to them talk out their fears or concerns. Unless you are an oncologist who specializes in what they have, you should concern yourself with their emotional health and support. Cry with them when it is bad and there are no clear answers (yes, it hurts and is uncomfortable, that’s adulting) and celebrate every tiny victory with them. It isn’t your job to cure them or predict the future, just be a friend or if you can’t then just keep away from them. You are toxic and I am sorry that no one has ever shared with you.
I know this is probably rambly and here and there, but my memory is making it harder for me to stick to a point. I have been trying to shorten my blogs because I am in a holding pattern medically while my health is deteriorating and presenting some surprises. It gets hard to think clearly for longer than a few minutes at a time. Still, the best part of this is that I am a living testament to the treatment of how people with hidden illness are often treated and how one person can use all these great social media platforms to just share what life is really like. The good, the bad, the ugly, and the downright gross.
The Life of a Music Monkey 