Lately I’ve been musing on the weirdness of feeling grateful for having Parkinson’s. Having Parkinson’s has caused me to go on a voyage of self-discovery, one that I doubt would have happened without it. It has evolved out of starting to look for ways to improve my movement, which led to research into Parkinson’s – what it is, and the ways people have found to cope with it. This research has led me to gather knowledge, insights that have brought me to where I am today.
Parkinson’s has enabled me to be more aware that the only thing that exists is now. It has made me feel more familiar with death, that my time is short. This focuses my mind on what do I want to spend my time on. Obviously I knew this (that everything, including me, dies) intellectually before, but it wasn’t as real, it was far away. When my Dad died I totally rejected the idea of his being gone, in the face of all the evidence to the contrary. It still feels strange, like a dream. Yet researching Parkinson’s, living with Parkinson’s, weathering the onslaught at times, talking about it, not talking about it – this steels me. Frees me in some ways, to be able to say, I’m terrified. Yup. Sometimes the process of living frightens me to the bone. But I am going to do this (breath in and out, play with my kids, write a blog, learn karate) anyway. If fear stops me, then there is nothing.
We people with Parkinson’s often get fed the line that ‘Parkinson’s won’t kill you.’ You die with Parkinson’s, not from it, apparently. Whatever. The point is, it is degenerative. Now, I am at my best. I will never be better than I am now. From now, my movement will slowly deteriorate. I don’t know what path it will take, only that it points down. So every bump in the road, I’m thinking ‘This is the slippery slope people. Take note. It gets suckier from here.’ What this gives you is momentum into appreciating the now. When I am with my daughter playing endless ‘I’m the Mummy, you’re the Baby, okay Baby?’ games, my eyes are on her, my thoughts are in the game. I give her my love. My time. It doesn’t matter that all my chores, all the things I need to do, are stacking up. They will never be done anyway. Her and me, now, together. That is precious. That is all that matters. That she has as much time, with me, playing with me, seeing herself reflected in my eyes, and feeling my love. This matters.
Okay so sometimes I fail at this. I get caught up in the pain and anxiety. I lash out at my loved ones. When I’m in fight or flight I hate to be touched. So all kinds of kind people giving me loving touch (even just a caress on my arm) can get whacked and told ‘Don’t touch me!’ I go deep into myself, fighting for air. I hate it when I let this happen. I feel like I’m on the losing side suddenly.
But then it gets better again, I get perspective. I re-realise that now is incredible. I am here, to witness, to breath, to love. It is an unbelievable gift. Stress drops away again. I look up and feel the sun on my face. And say ‘thank you’.
As being thankful for Parkinson’s is a thought-thread that is weaving its way through my consciousness, of course the universe keeps showing me examples of similar thinking from all over the Parkinson’s community. One thing that I love about having Parkinson’s is how its caused me to discover many other beautiful creative intelligent people with Parkinson’s. If I didn’t have Parkinson’s I doubt whether I would ever have found anyone from this amazing, loving, courageous tribe. I feel incredibly thankful being able to get to know and love a tribe of globally scattered peeps who all battle the same beast (making me also grateful for social media which feels a bit dirty and wrong). I could not be more upset that we all have Parkinson’s though. How bizarre.
Many give me love and support in this community. Kitty Fitton is foremost (find her at https://www.kittyfitton.com/). She enabled me to do this blog. I happened to mention I was thinking about blogging and within the hour she had given me a site to do it with. We are incredibly lucky to have found each other. There is this poem that I love – Wild Geese by Mary Oliver. A line in it goes: “Tell me about despair, yours, and I will tell you mine.” Kitty and I tell each other about our despair and in doing so, make it easier to bear. Sounds grim, but actually its a real riot (for more check out https://www.youtube.com/watch?v=vbiCDNqGKrA ).
Now I want to shout out to all of the people with Parkinson’s, from whom I’ve derived courage and strength. Their efforts using their honest voices to tell their stories, has given me hope, knowledge, inspiration. Know that if I name one, two, a few of these people… that there are many many more, and they have all been a light to me in dark places. One example of these lights is John from You, Me and PD ( http://youmeandpd.com/ ), who works tirelessly to help people with Parkinson’s, bring them information, connect them, help them be less lonely. He is fiercely determined to make the world better for PWP, and to bring the microphone to them. To give them a voice. I recently did a guest blog on You, Me, and PD, (it’s at https://youmeandpd.com/ride-the-wave/ ).
Another such light is this dude Larry who has a podcast that I regularly listen to called “When Life Gives you Parkinson’s”. Larry and his podcast have been a bit of a lifeline for me…it makes me feel normal. Larry’s recent podcast about Robin Williams tore me to shreds. However the one before that, where he talks with these three other dudes with Parkinson’s (a lot of dudes in the Parkinson’s world) who have taken on extreme challenges (showing Parkinson’s who’s boss?) and achieved them. I’m talking people with Parkinson’s doing things like do 7 marathons on 7 continents in 7 days. Which is a wee bit extremely mental, but that’s the level we’re talking about. I got so much out of this episode (which is here: season 2, episode 6, ‘Parkinson’s is an extreme challenge’, at https://curiouscast.ca/podcast/160/when-life-gives-you-parkinsons/). For starters, my husband Elia listened to it, and we talked about it, (useful communication tool, thanks Larry!). And secondly, I could relate to so much of what they were saying, especially Jimmy Choi. If you want to be amazed check Jimmy out https://www.youtube.com/watch?v=xgRDYZoUnac. He is Fox Ninja (not to be confused with the Parky Ninja haha). When Jimmy said on the podcast that he signed up to do Parkinson’s research experimental trials, he felt that if he lost his life as a result that would be okay because then he wouldn’t have to live with the disease any longer (I’m paraphrasing). What broke my heart was that I knew what he meant, I recognised that place, that feeling. At another point, he said that after he was diagnosed he went into denial and told himself it was a mistake and that he thought they would call him up and tell him it was a tumor instead. The fact that he would rather have a tumor than Parkinson’s, cut very close to the bone for me.
Also on this episode was Tim Hauge Snr (for more on Tim go to http://www.timsr.ca/). Oh my god he has Parkinson’s and not only went on the Amazing Race Canada with his son, they won it. The Amazing Race is one of those things I crossed off my list, ‘oh I have Parkinson’s can’t do that anymore’. Actually I thought it looked too hard for me a loooong time before I discovered Parkinson’s. In the episode Tim says Parkinson’s has brought him many things he is grateful for, and yet he hates it with a passion.
What Tim said is exactly the thought-thread that has been weaving in my brain – this question of, what’s has Parkinson’s done for me lately? And the answer is – everything. (Even so, just sod off now Parkinson’s you energy vampire). Okay ‘everything’ is maybe going a bit too far. But I have karate in my life. I would never have done that if not for Parkinson’s. Karate has given me strength. Self confidence. I am not saying everything is perfect now because of karate. I still have many OFF periods where I feel/look like I’ve entered some kind of slow-motion alternate reality. I have a lot of pain day and night. The shake is worsening, and in an OFF time my feeling in my feet is reduced significantly. But I can deal with these things (okay not well every single time, but you know, its a process). They don’t throw me as much as you’d think. My karate is continuing to improve, and I’m hoping to grade up a belt again soon. Training is ongoing and the journey continues. Joy in the journey is energy producing and where my happiness dwells.
But also Parkinson’s has made me strong, mentally and physically. Like the other day the kids and I went for a bike ride. We went too far for the three year old to make it back on her bike though. So my 12-year rode his bike while carrying her bike, and I carried her. She’s maybe 16 kilos. We had about 3 kilometers to go to get home. But Niko and I are strong, we did it. We achieved it. We are moving forward.