I couldn’t stop shaking. The night was creeping in and I tried to sleep, but couldn’t. Then, it dawned on me. I am overwhelmed. Thanks to a recent visit from a dear family member I was made aware that it is okay to realize this-- that I am in a tough spot. I don’t have to keep a stiff upper lip and try to convince myself that all is fine, when sometimes it is not.
It is enough sometimes just to keep it all straight. I am not always able to do so, but I give it my best. I think being ill with a neurological disease of this magnitude is all encompassing and you are trying to make sense of something that is not very definable. And let me say, though I may seem to be out of touch and unaware of the great love and grace of my heavenly Father, I am not actually. I just have a hard time putting it all in context sometimes. It is as though I am trying to sort out the reality of this life as a man impaired, and then at the same time, I want to be able to go on in the strength of all I once held. It isn’t an easy task on any day, for any human being, let alone one who is brain impaired.
You see “you look the same,” as I often hear it, isn’t enough. We with Parkinson’s and Parkinson’s-like diseases don’t always look impaired or so different from our previous status that we held prior to the changes these diseases brought forth. We are simply working at keeping it all together. We shake yes, and sometimes the shaking can be overwhelming and very challenging. But it involves much more than shaking.
I was outside in our yard with a dear family member who visited recently and the trembling became just so unreasonably strong that for a moment I could barely think of the conversation. It was such a nice visit and so fulfilling a discussion that I was able to set aside the constant trembling inside my whole body and the continual nodding of my head to respond and learn from a wonderful and caring person. I learned so much from that talk because there was a great perception of my station and an empathy that touched a place deep within and I was strengthened from that. My point: there is more going on than the more obvious, “shaking,” but the other medical challenges persist too. This all comes with the package. The health struggles are enough, but capping it all off is a mind that is affected greatly. My personality is on overload and I try to keep the rudder of my ship steering the real me on the right course, but it isn’t so easy to do.
Tonight I awoke troubled, and it dawned on me. When I can’t stop shaking, it isn’t just my body, but my whole being. Who I am now-- who I was before. Yes, this disease is part of me now, as my caring visitor reminded me. There is no turning back. But if I seem less able to put it all together than I once could, don’t think I am being unreasonable or less faithful to my beliefs. Sometimes the questions are more real than the answers. But I am not throwing in the towel; to the contrary, I am opening the door to places most of us have never walked or experienced. It is lonely through that door and I don’t exactly understand or know where it is leading me. I am trying, but sometimes I just can’t stop shaking.-- Patient-Online
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