Marking the Passage of Time

09 Jul

Anniversaries are weird. Sometimes they are celebratory, like wedding anniversaries. Sometimes anniversaries are meant to honor dedication or time spent at ones job. Birthdays are the anniversary of the day we were born and for most, they are celebrations of another year on this earth. Anniversaries allow us to pat ourselves on the back too… July 4th I celebrated two anniversaries! First and foremost, I celebrated the 237th anniversary of The United States of America adopting the Declaration of Independence by drinking, blowing shit up, and then eating s’mores. But July 4th was also my 10 month no-smoke-iversary (which I ironically spent most of wanting a cigarette more than I have in several months). These were happy occasions and I enjoyed celebrating with family in the great outdoors.

Sometimes anniversaries suck shit though. Sometimes they are simply marking the passage of time since something bad happened. You don’t want to be thinking of that thing that happened but you can’t avoid it. You are not celebrating the event but you can’t forget that it happened and it has had such an impact on your life that you will always remember the date it took place. I also celebrated this kind of anniversary over the holiday weekend and I am glad I had camping for a distraction.

I became very ill with Ramsay Hunt Syndrome on July 7th 2006. Seven years ago last Sunday I was a 33-year-old mother and fairly newlywed ready to take on the world at a job I adored. I had been feeling a bit off for a couple of months at that point but no one knew what was going on and all the symptoms I was having appeared to be rather benign, but when I woke up that morning I knew something was really off. When I tried to spit in the sink and ended up spitting all over myself instead I looked up and saw my face… half of it hanging there completely lifeless… as horrified as I was, I had no idea what was to come. For those of you unfamiliar with Ramsay Hunt Syndrome and what it did to me here is a link from the old Evil Seamstress archives that explains it all fairly well. I just reread this for the first time in several years and it made me feel a bit sad but is a good view into my struggles with RHS.

I think what makes me the saddest about that post is the hope I managed to muster. Things just didn’t turn out the way I had hoped back then and I think that if Katie of seven years ago had been able to look into her future and see that she had to give up her dream job, apply for disability, and start using the cane she was so adamantly against, she would have been devastated.  This is not to say that I am unhappy with where I am now; this just isn’t where I was planning on being now seven years ago.

Sometimes I get a bit embarrassed by how personal this blog has gotten over the last several months but I know that in order to accomplish what I am trying to here, it needs to be raw and honest and real. I think the biggest shocker in reading that seven-year-old blog post is just how lonely I was. It is dripping in loneliness. Suffering through an illness (mental, physical, or both) is one of the loneliest places in the world one can be. Suffering through and illness that no one has ever heard of or understands wraps you in a loneliness so bitter it is hard to breath.

Of all the things I am left with after seven years, the loneliness is the hardest to deal with. I still have a bit of facial paralysis (I notice this more than most people do); I still have balance issues, I still have chronic nerve pain, I still have dry eyes and mouth, I still have the weird crossed nerves that make my eye water when I eat rather than me just salivating like a normal person, I still have a lot of things. A lot of things are improved too! But I still have limited mobility. At the end of the day I am still left with this disability to deal with. But can get past that. It isn’t always easy. I have good days and I have bad days. I am learning to work/with around the limited mobility. I am now and will always remain positive and upbeat about my situation and I will never stop looking for ways to accomplish the things I want to with the least amount of assistance possible. But what I can’t combat is the loneliness.

I have gotten bitter about this over the years. I am very much OK being alone with myself. In fact, I need to be alone a lot. One thing this experience has made me realize is that I am an introvert. This doesn’t mean that I am anti-social or that I don’t want to go out and do things. It means that I must be alone and quiet to recharge. I gain energy from quite rather than from spending time with people. But I am an introvert, not a hermit. I still struggle with this loneliness and I still struggle with expectations. In fact, the expectations of myself and others are a major part of the loneliness.  It is what makes it possible to feel completely and utterly alone when in the company of others.

I am learning to temper the expectations I have of myself. I know what is realistic and what isn’t. I understand what my limits are now. I still get overly excited about all the things I want to accomplish but I no longer beat myself up if I can’t get them all done when I want to. What I still can’t handle are the expectations of others; even if those are just perceived expectations. These are the things that make me angry. So angry that ugly voices nag at me in the back of my mind, chipping away at my self-confidence. They make my heart heavy and difficult to carry in my chest. They make me bitter and resentful. Mostly, they just make me tired.

I want to be clear that this is not about being liked or popular or what the fuck ever the most defensive of you are going to think about this. I can already hear the “I don’t give a shit what people think of my and neither should you” rants stirring. That isn’t really what this is about. And if any one of you try and tell me that you truly don’t care about anyone else in this world… that you truly don’t want people to accept you for who you are and see you for the complex and delicate miracle that you are, then you are either lying to me or yourself. We all need validation. We all need acceptance. And we all need to feel heard; believed in, and loved. Yes. We need it. And I don’t care how different you think you are; you need it too.

That is not to say that my self-esteem is attached to this need. My feelings about myself might erode in the moment. It is not easy to interact with people you know are judging you. Sometimes the work of deflecting criticism and snarky commentary is just too much. It is natural to crumble a little bit. But it is also pretty easy to build yourself back up once the sting is gone. I think the difficult part is not building a wall that others can’t get into. Not holding onto the bitter little pebbles these injuries to our souls and hearts create and using them to construct a fortress is very difficult indeed. So difficult that I think I have been guilty of this for some time now. I am angry. But not about the hand I have been dealt. I stopped being angry about that a long time ago. No, I am angry at the expectations. At the people who have them. Really, I am becoming less angry and more exhausted by them.

I am tired. Sick to death even. I am so, so sick of people in my life trying to shove me into boxes that are shaped by their expectations. I am sorry if you are upset that I don’t fit into the box you think a sister, daughter, mother, friend, sister-in-law, daughter-in-law, aunty, granddaughter, niece, or wife should fit in. I am done with people in my life trying to force me into their boxes. The expectations these people have hurt me. They hurt me because I will never live up to them. I am who I am. And who I am is the very best version of Katie that I can be in any given moment. I have learned to see the great things about me. I have learned to love me for who I am (some days more than others). I am who I am and if that isn’t enough for you… if it doesn’t fit your idea of who I should be and how I should function in the position I fill in your world, I am sorry. I am sorry that I can’t be all that you want me to be but mostly, I am sorry you are so blinded by your expectations that you are unable to see and appreciate the box I come in rather than wasting your time trying to force me into a box I will never fit in.


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Riding the waves of dual-diagnosis as a parent.

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