I’ve come to a rather dark place in my mind. I’m not sure how much of it is treatment or this disease or just my brain. It amazes me how many years I spent getting to know myself and finding out how I felt about things and now how wrong I am. I went about my life as a human being – working, sleeping, cleaning, running errands-all the daily tasks that we as humans go through on a daily basis to “achieve” and “keep up” with one another. I was caught up in the whirlwind of “American” living and while I knew some where deep inside that there must be more to life, I continued-too tired, too stressed out to make time for change. There was always “tomorrow” or “next week” or “next month” or even “next year.” Even while being the Lyme, Bartonella, Babesia and Mycoplasma ravaged my body, I fought to keep the American dream. I didn’t come from much and I was bound and determined to “make it.” I knew I did it on my own through hard work and perseverance. I didn’t have my parents giving me money hand over fist like so many of my friends. I didn’t have a back up, either I made it on my own or I didn’t. I was so proud of myself in secret, yet yearned to “keep up with the Jones.'” I thought I had a good grip on my priorities. But the last year, the last 8 months in particular have blown everything I knew out of the water.
When my brother passed away 2 years ago, I started really examining my life in a way I never had. Coincidentally, it was also the time that my disease really started to come to a point where it was no longer able to deny that something was seriously wrong with me (though an actual diagnosis would take 18 more months to obtain.) After his passing, I developed this overwhelming feeling that I, too, would die at 32 from something no one could figure out. That led to a plethora of horrendous thoughts, mostly centered around my mother – “how would she cope?” “would the death of both children kill her too?” The list was endless.
I launched myself into this decluttering stint. I got rid of tons of things I no longer needed. I organized what I had left – all motivated by the thoughts of my own death and wanting to make it as easy as possible for people to go through after my death. I made playlists of music I wanted played at my viewing and at the grave site. As I tend to do with everything, it was all or nothing.
At the same time I dove greatly into finding meaning in my life, in the legacy I wanted to leave behind. And then there was my health. While having this fear of death in 3 years, I decided I wanted to live, again mostly because of my mother. I couldn’t have her bury another child. I jumped head first in to research, trying to obtain a diagnosis when doctors failed. If I can offer one bit of advice to someone who knows there is something wrong with them it would be “BECOME YOUR OWN DOCTOR.” In this time of technology there is no excuse not to do your research. If you think a doctor knows everything, you are wrong! They go into their offices or use their iPhones to look up things too. The key is to find a doctor who is willing to work WITH you. I went to nearly 20 doctors over the course of the last 5 years alone. I put my body through every test suggested in my quest to find an answer. I spent hundreds of hours searching the internet trying to find anything. I found my P.A. who was my last hope. I literally walked into the office and said “I don’t know what to do anymore, you are my last hope.” She took the time (not just the 20 minutes allowed per patient) to work with me and put me in touch with the clinic where I would definitively get my answers.
So when I finally got an answer it was almost too good to be true. As I prepared to “get better” and know the battle I was going to fight, I was so confident that I could do this relatively unscathed from the natural darkness of my own mind. I was wrong and I have arrived in some of the darkest places I have ever known in my life.
This last month I have been extremely emotional. I am depressed. I cry. A LOT. I am moody and cranky. Friends have stopped calling or texting or coming for visits. I am watching everything I have worked so hard for disappear before my own eyes. I am paralyzed in pain or at best greatly restricted. And the icing on the cake was getting a letter from the state retirement board simply stating that they would reevaluate my case in 6 months or unless it worsened significantly. If they could see me they would know how bad I am doing. And my funds are almost drained. I have become what for the last 3 years I have been trying to fight – a human “being.” Being positive is simply just not cutting it.
While I know that I am extremely lucky to have what I do, the support both emotionally and financially from my mom, I still feel so hopeless. I tried “One Day at a Time” it doesn’t work when you are so close to filing for bankruptcy and losing everything. I can’t even dream about the future and my small cottage because I have no idea what will happen with my credit or how long it will actually take for me to get better, at least to a point where I can function on my own. I feel like I being dragged down to the deepest part of hell in my own mind and help prisoner there.
I feel everything so much more intensely than I ever have. Every emotion. Every sensation. Everything. I try to sit outside when I can. It seems to be the only thing that quiets my mind in anyway. I will look at a leaf and I can feel the life in it, how carefree it is. It does no worry about death, it does not worry about anything, except absorbing nutrients to supply to the greater good of the tree. There will be thousands of leaves born and died throughout the life of the tree but each one matters. Birds will nest in the tree and create new lives within that nest. Its all part of life. And this is why when I look at the leaf I feel it so intensely. It is not in competition with anything. It is simply living the best and only way it knows how.
Perhaps this is why I think of Ireland so much lately and feel it calling me home. It is the only place I have ever felt “at home” in my entire 30 years. I have been forced to let go, of not just my possessions but my preconceived notions as well. I sometimes think that being sick may be the best thing that has ever happened to me. I feel closer to nature and God and no longer fear death. I’m not ready for it to take me just yet but it if does, it will be in the natural cycle of life. I hope that I survive this war intact and that I will be able to be the best I personally can be. Its just too soon to know anything for sure yet.