I woke this morning to a crashing reality and it is not an easy one to accept.
Those reading my blogs in the past few days will have seen that I have been on an incredible high the last few weeks of huge magnitude. It is in many ways completely natural – after 5 years of ridiculously fast decline in my body propped up by a delaying tactic of pills, exercise and many other forms of treatment, I have had a clearly miraculous turn around.
Yesterday, I got a very good report from the doctors and I made in my judgement a very big mistake of getting carried away. I for the most ridiculous moment in my life which I am sure my kids will never forget somehow made myself into some form of 007 – I am too embarrassed truly to admit it now.
I went to a friends wedding in incredibly high spirits and feeling amazing. I loved the wedding ceremony and honestly I felt joy I have not felt for a long time but felt a twinge of feeling off balance. I, like I always seem to do, ignored it or probably more I blocked it in a form of denial, and then we went inside where I lost my balance and toppled into a wooden bannister hitting my head in the process luckily a “Trump” style glance. It could have been so much worse – I hurt myself but not nearly as much as I could have done.
Good friends got me home and I went to bed needing a stick to navigate the house. This morning, I awoke, with a painful head (but not too bad) but my balance and movement is good and the pump is still working Thank G-d. More than that I saw how I have been acting and it caused me to realize something I felt was important to say.
Parkinson’s has its tentacles across so many aspects of our lives – it controls our movement but it also so deeply impacts our emotional side. Our highs and lows and it seems to exaggerate both taking us to extremes. The calibration of the dopamine is so subtle – too low and you are exposed to the shocking symptoms of Parkinson’s. Too high and your body and emotions go into overdrive the other way. People without PD have a natural balancing – we have to brute force it by balancing pills or in my case a pump. It doesn’t get it right all the time and I guess yesterday in two ways it was out.
The high was far too high – as I said to a friend by whatsapp this morning in an unguarded moment of deep frustration after which we both laughed out loud – “I collapsed at a public wedding on the day I proclaimed myself the second coming of james bond for xxxxx sake”. I think it says it all.
The blog I write is partly therapy for myself, partly I suppose some form of exercising some sort of control over my situation and its narrative, and in small part (I’d like to think of course that it is in large part) a genuine desire to let people into the journey of someone with a condition like PD so that people can empathise and understand what people are living with.
It is of course not just PD. We are all suffering from something or another – and dwelling on it doesn’t help but I believe awareness does help and then channeling all your energy into fighting it and helping others fight it.
The Pump is amazing for me but I have to recognize PD is there in its most brutal form as it is for others – the medicine is just masking tape but good tape. I have to dig deep and fight but sometimes I need to temper myself.
This addictive side is indeed clearly not good and I recognize it but this post I felt was too important not to say (then again I would say that). I truly hope that somehow I am giving people with PD some hope that there is some form of light amongst all the darkness and that we can be somewhat positive that science is helping and that we can try to make the most of life. I also hope that this helps people deal with others and themselves as they go through life’s journey.
I am in a lowish place so if I am helping – it would be good to hear it somehow – but as this is my therapy I am just going to go do Yoga, do my work and push on.
I appreciate the listening, those of you who do. As per my note I am actively going to try to take a step back but it is an addiction so I can’t promise (and I think overall if I had to have an addiction there could be plenty of worse ones).
Lastly it is all a bit self absorbing and I apologize to my family and friends about my focus on me. It is not intentional.
2 Responses
Sounds to me like you’re addicted to living life to the fullest, regardless of the obstacles in your way. An inspiration to everyone around you but especially those who are battling serious issues in their life. Totally get the tendency to be overconfident – I got a bit carried away at my daughter’s batmitzva recently and tried to dance like I used to and collapsed on the floor after a few steps. Felt quite similar to what you just described – the physical pain bothered me far less than the emotional. But to quote another “superhero” from film, I have no doubt “You’ll be back!” very soon :).
thx!!!!