Today my sister asked me how my new meds for seizures was working. I told her that I think it may really be working. Of course, it makes me sleep half of the day but everyone tells me that my body should get used to it in a few weeks. Suddenly, my whole mind opened up and I saw myself as an actual contributing citizen again.
I pictured myself waking up and going to work, coming home, making dinner, taking a shower and going to bed and doing it again for another thirty years. If I were somehow able to pick up what is left of my life, I would recede into the background and go back to a quiet life where I only sought the comfort of my pets.
There would be no funerals to direct or classes to study for and teach. No walks or charity cooking. Just living my life the way I always wanted.
Of course I have to ask myself how do I justify leaving the arena of charity work? I wouldn’t be! I would simply make a lateral move to the funding portion. Instead of seeking funds, I would be in a position to provide funding for research. That is my biggest hope is for more funding and I am not sure that it matters how I achieve that as long as it is legal and moral.
Even at church I would simply move from minister to congregant and that doesn’t mean I won’t help people or read my Bible, but I am not going back to working AND being a minister full time. There was a time when I wanted to devote my life to serving in ministry, and since that came to fruition my life has been a wreck and I hate living this life. I hate having feelings and having them hurt. I hate this broken body and brain. I hate having to be a good example all of the time. I hate feeling lonely and forgotten. I miss the touch of humans but not their over-perfumed hugs.
The thought of feeling like my life is “normal” again is tantalizing. Yet, in my musings of doing what I want to do, I feel like I would end up with a type of chasm in my self that I would try to fill with something. Or maybe I could just learn how to chill out. Maybe the chasm can co-exist with the rest of me.
Does this make the time, energy, and money I have put into awareness and fundraising worthless? Of course not. For the time when I had nothing better to do, I helped raise awareness. I have devoted many hours of my life and the lives of many other people to raising money for Chiari Malformation. I just want to be a different part of the process now.
I just don’t understand why I feel guilty about it. Do I owe my everything to everyone? How much do I have to give back for it to be enough? What standard am I going by?
Most important, what if I am not able to go back to work anyway? Will I continue doing charity and awareness work because I feel obligated or like I have nothing better to do? Will I remain doing the same thing day in and day out because this is the hand I have decided to play? Is that wrong? I have no idea.
This is one of the reasons that I hate hoping for anything. Nothing worth anything has ever come of my hoping. I will be crushed if my doctor takes my license. I will feel useless if my disability goes through and I am legally “disabled”. I am not sure what you call the next step after you feel your life has been ruined and then destroyed. Vaporized?
I don’t know how things will turn out. I got the referral to the seizure clinic in Cleveland, but if the meds work, what is the point? I am not about wasting money or time. So much has been wasted in the past three years. I think this weekend will show how well this medicine is really working and then it will hopefully shed some light on future things to come.
Honestly, though, if I were given the opportunity to go back to to life making money and paying taxes, I wouldn’t look back. I would archive my blogs, change my social media, and just be a normal person and maybe never talk about this dark time in my life. I would love for this to be forgotten like all of the memories I have lost along the way.
The Life of a Music Monkey 