There is no question in my mind at all that giving is better than taking—to me, as a somewhat flawed person. I have always had a pathological dislike/fear of being a taker. I know where it comes from and I understand why, and that is a subject in itself not for public airing, but whether right or wrong, it has largely defined me.
In some ways, it is a selfish behavior and it is probably egotistical and an extension of true control freakery that is probably hugely unhealthy, but it has been this way for a long, long time. Whether selfish or not, it has given me huge satisfaction and happiness—being able to support my family, helping others whether through advice, advocacy, financial support, or practical matters like driving them places. (I am not the same, sadly, with DIY and chores, but that is a matter for a different blog :-))
This, however, is now fundamentally being challenged, and I am sure it is divinely architected. I am having to learn on ‘speed’ to accept the help of others and to acknowledge that I am starting to lose the ability to so carefully control the surroundings I inhabit. It is so hard, but it is starting to shift…
If someone had told me a few months ago that I would lose the ability to drive, effectively begin the rapid winding down of my career, and a range of other things (like drinking wine and whisky, trusting in my ability to travel, or walk safely on my own, etc.), I would have thought it would be ‘Game Over’. These, I thought, were the core of my existence. Thankfully and surprisingly—to me—they are not.
If someone would have asked me a few weeks ago whether I would be able to accept people helping me—groups saying prayers for me, friends setting a rota to walk with me, a neighbor offering to learn with me, another neighbor offering to play ping pong with me—I would have instinctively recoiled. Surprisingly, I have very gratefully, after a few moments of tough deliberation, started to accept and really appreciate the help and friendship.
My initial gut reaction is to challenge myself with the accusation that this means I am giving up the fight and giving in to the disease. That is the risk I feel I face. I am stubborn, impatient, and controlling, and that has in many ways been my strategy and trump card when facing off against Parkinson’s—an unbending will not to give in. I worry about this being a self-fulfilling prophecy—falling victim to the statistics as I relinquish my approach to life.
That is not it. After much reflection… I see the need to reshape and adapt to fight a different way but to fight no less intensely a more intense enemy at a point when I am physically weaker. This is the new challenge of my fight with probable PSP. I have identified four fronts to the fight.
My Loved Ones – I want more than anything that my wife, kids and those others close to me are as well cared for as possible before, during, and after the PSP (or indeed aggressive PD if it proves to be that route instead) has come and gone.
Quality of Life – This is the absolute top priority from a selfish perspective. To keep myself fit, healthy, rested, cognitively functioning to preserve my quality of life for as long as possible. I want to live, and I want to live with a good quality of life for as long as I can.
Purpose – I want to still have meaning in my life and never be, or be seen as, someone who simply is just there and in any way, shape, or form is pitied for it. I want to do the work I think G-d still expects from me and have meaning on this planet.
Faith – At the end of the day, there is only so much a person can do physically. In my belief set, it is up to G-d and I have to focus on my spiritual journey and come closer to G-d. Other people have their own perspectives on this topic and many may disagree, but I truly believe and therefore this is a front in of itself.
To achieve these objectives, I recognize I need help in all aspects. I am losing physical capabilities at a fair pace, and I need to preserve my energy, build up my reserves, and engage others in helping me achieve these goals. I can’t do it alone. Thankfully and very gratefully, people want to help, and I am so amazed at this.
Going at it myself without help will simply exhaust me, and I will fall at the first hurdle. It is my journey, but thankfully I am blessed with a team, and I recognize that I need the help. I will, of course, do my best to try to lead and control the plan… a leopard and its spots come to mind.
Emotionally, I am starting to talk myself into accepting this help and fighting a different fight. I am learning that ‘taking’ is also important in the scheme of things. At a big-picture level, there is just a natural lifecycle in which we start life as takers, transition to givers, and to some extent have to transition a little back towards the ‘takers’ to make room and space for others to step up and fulfill their mission.
So… I don’t think I will ever like it, I don’t think it will ever be my default, but I am starting to accept help and relinquish control. Will I make that easy for the people around me? I make no promises, but I am trying. On the other hand, I will fight like anything to achieve the three goals above, and your help is much appreciated in whichever way you can help me.
