"These are the times that try men's souls," for sure. No doubt about it. However, along with the political and philosophical situations of angst, rightfully so, we often forget to factor in assessments and reassessments of our personal world. We each and every one of us have at least two sides - public and private persona. In addition, whether we admit to it or not, we have a third, that of our inner persona, the truth as we admit it to ourselves - or deny it.
As I sit here in the middle of the night, I decided it was a good time to take stock, to assess that third persona. Am I satisfied, uneasy, terrified, calm and accepting or swinging to the last, or a mix of all above and more?
Thinking back, I believe the last time I took stock in a deep conversation with self, was somewhere around late 2017 or early 2018. Too lazy to check on exact date; it really does not matter. What does is the state I was in. Despite knowing that I had Parkinson's for many years already, having the doctors finally wake up and concur was another thing entirely. Deep within my heart, against all reasoning, there was that little spark of hope and denial. How could I have PD? If so, why hadn't the doctors recognized that long ago? What had the wasted time of addressing it meant for the future, for me and my family? How, most important, would the PD develop, what would it do to me, physically and cognitively? The questions and concerns ate away at me, becoming far more important than other issues.
As awful it was, and trust me, the official confirmation hit me like a ton of steel directly upon my head. My entire being was consumed with fear, with anger, with despair. Frankly, if that proverbial bolt of lightning had hit me at that time, it would have been okay. I cried out that I wanted to die. Now. Then and there.
Thankfully, there was a good, no, great, support system around me. Not for physical aid, not necessary then at all, my third persona desperately needed emotional aid, support, and reassurance that I was still loved, valued, my role as member of the family unchanged. I could still be me, the me that I always was, whether it appealed to others or not! That support helped greatly as it allowed me to wallow in self-pity even as that swamp was gradually drained dry with that support and encouragement.
Family is not enough though. There is a component to be added - that of strangers whom you grow to trust, to care for you, to push you and meet your needs without the emotional factors of children to parent, husband to wife, whatever the familial relationship was. Along with that was the 'shame', yes, shame, the hidden diagnosis. It was like cancer of old, the whispering, the reluctance to say the word, the self-blame, as if I could have prevented it. The self-examination - for what had I done so bad that I deserved this awful thing.
Here, I was very lucky. My doctor was and is amazing. Taking the time to sit with me, to deal with the immediate results, the sobbing, despairing woman, the husband beside her not knowing what to do, feeling hopeless to help, to prevent, to cure, so anxious to do so. I continue to benefit from this connection. This trust of doctor is most important. Trust me on that. I hate feeling reliant on somebody else, but one must be able to ask questions, to trust answers, to know that your doctor is proactive, up on research, to be there for you, to comfort and kick your ass. Whatever is needed. This is my doctor.
Additionally, one must address the treatment necessary in order to maintain oneself the best one can for as long as possible. I could deal with cognitive efforts, even as somehow new brain cells seemed to sprout. There I was with new interests and actually growing skill in woodworking, in painting!, in jigsaw puzzles - me whose kids' puzzles had defeated me! I did my crosswords, read books and papers, yelled at the idiots creating our existential mess of a country, so no. I monitor myself like a hawk there, need to know that each time I search for a word I am no different than any other person my age.
But the physical - what do I do about that? My doctor recommended me to a wonderful place set up to work with people with a neuro degenerative disorder. They treat other issues as well, but this was their specialty. My wonderful therapist who had kept me together since 2003 sent me there as well, despite my coming to her in the first place. There I met a wonderful group of people, mainly 'kids' as I call them. I was not a 'patient', addressed and treated as such, but rather a person whom they cared about, could help, could encourage, could push as needed and related to the person as a valuable addition to their lives, personally and professionally. As time rolled on by, the first one I met, who literally put me together that first visit, who continues to do so when she returns, as therapists changed as their life situations changed, all of them were and are wonderful.
In this place I work hard but laugh just as hard. There is a camaraderie between therapists and clients - not patients. It is a place of hope and invigoration, not a place of despair and hopelessness. Where else could I find likeminded individuals with whom I can discuss the various aspects of different sneaker brands even as I balance and do some unheard-of physical feat!! That is the key to the therapy's success. The smooth melding of physical and emotional aid and stability, the love and friendship and the worth of a place of hard, hard work. Here I can reach to achieve, and I do.
Thus, in retrospect, at this hour in the morning, I am content with myself. Yes, there are moments, cannot deny that, but there are fewer of them than at the beginning, even as some outward symptoms progress. For those of you who are reading this after or with a clinical diagnosis of PD, there is hope, there is concern, there is research. It is not a death sentence, nor a life turned useless. Not at all, and, in fact, far from it. One prioritizes differently. Life can be both a challenge and a source of growth and inspiration.
Hang in there! Despite the morons at the steering levels of government, local and national, we can have a good life. Despair at the harm they are doing to our nation, but do not despair in your personal life with PD. In fact, go out there and do something to change the political situation. It is good to have an outside interest rather than to focus and turn inward. And that goes for a person with or without PD. Third, inner, persona of any and all, have the same needs.
You, with Pd, you are better than this damned thing. Challenge it, fight it, accept the help there for you. Educate others - and yourself.
Live. Enjoy.
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