No, the proper term is not fine but actually maintaining and even improving in some areas. Everything is in relative terms, but I am also falling back in other areas. My classification remains the same as last year, which in itself is a pretty substantial statement; however, the end result does not really change nor have the expectations -people with PD will eventually end their lives in manners attributable to PD and its consequences.
Yes, we all die. That is part of life, and no one can avoid it. However, the deal or the hope is to reach that end in as peaceful state as possible, after hopefully having lived a life where one made a difference, a positive difference, large or small, to someone or something. I suppose the truth and value of one's life will be made clear at that time of final judgment, but as one, as anyone, nears the end of a lifetime, that is not the time to worry about what you might have left out.
Instead, one has to look forward to the time left, the time remaining during which the idea is not “to eat, drink, and make merry, for tomorrow we might die". It is instead the period when one makes the most or the best use of that time, in the sharing of love and hope and passion, a passion to make a difference, to speak one's mind, no matter how many might oppose it.
No matter how many might disapprove of it. For that time remaining belongs to the person, not the congregation, not the group, but to that specific individual. That individual has the right, the need, to make the decisions which are most compelling and fulfilling, and those decisions are actually the measure of one's life, an opening statement, shall we say, for that final court date.
Sitting in the waiting room between appointments one only had to look around and see which people sitting there, patient, relative, or advocate, was comfortable with the state of being and those not. No one welcomes an end to a life with loved ones aplenty and good memories sufficient enough to cancel or at least lighten the unbearable pain of periods of life lived, unless it will be a cessation of unbearable pain and loss. A way or path to reunite with those gone before, a time to make amends in whatever manner possible, which we will have to find out at the right moment. There is a way to approach it calmly and sanely, not fighting that which cannot be fought. The best choice would be to do one's best to make those final moments, those final answers to the extra credit questions, worthy of consideration and consequence.
That isn't easy. I can tell you that for a fact, at least in my own personal life and thinking. People have asked me why do I expose my inner personal being at this point in time? My answer is why not? If it makes it easier for me, if it possibly helps at least one person out there even a tad, then again, why not? Perhaps this frail little old lady has something good remaining, worthy of sharing and at the very least perhaps assuaging her own inner needs. So, even should you disapprove, as the saying goes - "Tough Bugs! Deal with it."
As I was going through the various drills and tasks assigned to me yesterday as part of the evaluation process, a section of the mind, it's gears and gadgets turning independently, apart from the rest of me, I would catch a moment's glance at the man sitting there looking at me, but not seeing me - not at that moment in time. What is he seeing? The future, the present, the life we have shared together, so intertwined it is often difficult, nigh unto impossible to distinguish between the two?
One life from the time we met as callow silly little youths on the cusp of adulthood, age 14 and 16. Little could we have imagined that one day we would be sitting here, dealing with questions of life and death, of preparations of life skills, life's needs and wondering, hopefully, that we will be able to have a 60th wedding celebration with family and friends, along the lines of the 50th.
Reality hits us. It would never be the same. Half in jest we began to call out names of those with whom we would love to share those moments. We ran head on to the terrible reality. It would indeed never be the same. It was with a shock to the heart, the realization that so many of our friends were either no longer with us or in the midst of their own end of life health crisis, unable to travel, unable to join us physically at that moment.
That “discovery” shook us. How did this happen? When did it happen? How did we never put it all together? Perhaps because we were so wrapped up in our own changing lives. As we adjusted to our new life parameters and demands, new goals and expectations, as changing limitations and new possibilities made themselves known to us. As our lives shifted, as the inner world of ours became more demanding, necessitating adjustments to what had to be met, and events did not always add up the way they might have at other times.
I think more of my parents now. How close they were. How close and beloved they were to each other. How they always put each other first. How they always held hands. How they valued the family they had created together. I think of the moment when I unintentionally came upon them in a moment of deep intimacy and love, not long before my father came home under hospice conditions. They were sitting together, their heads, touching, forehead to forehead, mind-to-mind, heart to heart. I saw the tears roll down their faces as they held each other, sobbing silently. As I said nothing to interfere and backed slowly without a sound out of the room, allowing them their privacy in what perhaps was one of the very last moments of being together, aware of each other, knowing of the separation to come.
I remember my mother, her gradual withering away even as she laughed and smiled and was loved and loved in turn, for she wanted only my dad, to be together as they were, and always will be, from the ages of fourteen and sixteen.
And rising in my mind's eye, in my heart's core, I see and remember another couple of ages 14 and 16. I have “ordered” Gerry to allow me to go first, spoken many times with the Lord Above how it had to be thus, for a life without him, G-d forbid, would be impossible. And I know that he is thinking the same way, along the same lines, as he looks at me, not seeing me as I am now but as we were, and how we have "decided" to go together, in our sleep, holding hands, to share the future of the new lives awaiting, even as we shared the past and the present, the always and forever
It is a very difficult thing to do to contemplate a future that is unknown. No matter how many legends, how many lectures, how many books have been written about it, about what comes after, it is a frightening concept. Will we be alone? Will we be able to share this new life? Will we reunite with our loved ones gone before? Will I be able to give my grandparents another series of hugs and kisses, simply holding them as I missed them so much. Will I, we, be able to hold our beautiful Yitzy, our 13-year-old grandson torn from our hearts, from our family, so early, so unfairly.
This most recent evaluation gives us hope that even as there are difficult days, weeks, months, hopefully years remaining, hopefully also remaining are good years. To share our lives and our love. With friends and family. To engage with our kids, the three generations that we have been blessed with. Our children, our grandchildren and our oh so beloved great grandchildren who hold our hearts and souls in their tiny, little hands, who light up our lives with every little squeak and smile, every toy and project they 'gift' us with.
Perhaps we all should not wait until the end nears to take stock of our lives. To understand and accept that those strange people who look back at us from within the mirror are not our parents but are ourselves. We are not those 18-year-olds taking new steps into this world, those kids we still remain inside, for our steps now lead us into another new world, a better world.
There is, in fact, much to think of, much to consider and still much to live.
It is that time to pack up and return home. We have visited the Institute, and we are hopeful that barring anything unforeseen, we still have good times awaiting us. To enjoy - and exercise - the prerogative of parents of adult children, to annoy them. Time to spend with our grandchildren now grown up into beautiful people who make us proud. And those blessed little ones around whom we have wrapped entirely within our arms and hearts and minds and very being and thank G-d for these blessings and more, which God has endowed us with. Far weightier than the problems that we faced in life.
I wish you all a weekend of love and peace and harmony. A weekend on which we can pray for the world to heal itself. A weekend in which we treasure the true moments and cast aside all that is negligible and not worthy of our care or concern or time.
So it was yesterday.
So it is today.
And G-d willing,
so it will be tomorrow.
Perhaps even better.
So, yes, darling daughter, may be "fine.
PS: A heartfelt thank you and Hakarot Hatov to those who wrote to me after reading this piece on the blog (estherblogspot.blogspot.com) or on Facebook. I remember you all and love you all.