Yoga, one of my teacher training instructors often said, is about radical self-acceptance. Whatever the loss or limitation: self-acceptance.
A challenge when that limitation shows and strangers’ eyes register Not Normal as they stare. I’m reminded daily – at the grocery store, doing errands – that one leg doesn’t quite work right, isn’t within the standard. I might rise above it, describe it in a personal ad as “Gimpy but cute,” but my point is . . . no, my points are:
Point #1: It’s not polite to stare. That’s a Mom rule we’ve all heard, and I can attest that Moms are right on this one. That quick flick of the gaze to something – anything – else isn’t fooling anyone. Observe, then catch my eye and say, Hi, or nod, or otherwise acknowledge that I’m more than a leg that lags. Oh, and no need to shush the little ones if they ask why that lady is walking funny. Explain that everyone walks differently. Why not have fun and say, She must’ve hurt her ankle at the circus, those trapeze acts can be so dangerous. But, please don’t pretend that my walk isn’t a bit off. The kids know better.
Point #2: It’s okay to talk to me. I don’t bite. I’m quite the conversationalist. And, while every village has an idiot, I’m not ours. I may drag one leg behind me, but my brain’s not back there with it.
Point #3: We all have our issues. One of mine shows. Yes, there are others – minor ones – if I think hard on it. But I’m not about to display any of them on a sandwich sign.
Point #4: What happened? That’s my story. Okay, I’ll share it this once. Think not-so-current events: South Dakota Senator Johnson collapsed in his Washington office last year from an AVM – an arteriovenous malformation. A twisted mass of blood vessels that doesn’t follow standard biology rules. This knot skips the capillary connection between arteries and veins and can linger undetected anywhere in the body. Until it bursts. No need to be a pre-med genius to know that internal bleeding equals bad news. Really bad when it’s in your gray matter. Pop goes the AVM. I was in the eighth grade when it turned the left half my body to lead.
Point #5: Don’t treat me special. I’ll admit I like it when someone holds the door once in a while, but who doesn’t? But I can open doors and walk the dog and unload the dishwasher like anyone else. Years of physical therapy and plenty of yoga brought me this far.
Yoga. That’s my point. I practice the poses every day. But it’s been the practice of Satya – truth – and Ahisma – non-harming – that have turned me inward towards my Self. The truth is, I limp. Rather than haranguing that leg for not keeping up, I now speak to it in a gentle voice. In my honesty and kindness to me, I’m learning that radical self-acceptance. Truth is, people will stare. It’s okay.
Do you find it difficult, as I do, to live through the ups and downs of
on time and off time with
And difficult to be judged a phoney because what you are
able to do at 9 you can’t
do at 11?
I try to time activities around when the meds are in full gear, but that’s not always possible. If I know I’ll be stiff and slow because one round of meds hasn’t quite kicked in yet or another is wearing off, I let whomever I’m with know. I call it waxing and waning.
Like the phases of the moon, friends and family don’t question the various stages it goes through. They know it reflects the sun whether they see it or not. And while I’m aware that strangers aren’t thinking about lunar cycles when I hobble by, I know that another full moon will rise again soon.
Self-acceptance really is a radical concept, huh? I think it is radical that you practice it:)
I love your sense of humor in your writing!
Your waxing/waning Moon analogy is great, and I certainly can relate.
Perhaps consider that some portion of the population that would stare or feel uncomfortable as you drag on by may learn something about themselves in that moment, and learn from it…
Just smile and keep going.
Stay centered and appreciate the good days.
Only you know how challenging your road has been.
Despite having known you two dozen years, Renee, I still automatically look when you go from stillness to that first limp. Why? Your initial jerkiness catches my eye. Mind expects a perfect Renoir/Renee painting: the known you who is graceful, glowing and strong. Mind doesn’t expect a greyhound-sleek dancer’s body to do other than glide and flow. So, when eyes/I glimpse your limp, I just notice you are more than that “painting,” and let go. It IS the yogic way of “seeing”.
corrected last line: “and let it go.”
Thank you for sharing a perspective I’d never considered. You’re right, it’s about seeing what is (as opposed to viewing from one angle or only in certain light). And thank you, too, not only for your words of wisdom but for their compassion.
I am a yoga teacher and also in school to be a nurse. My husband who also practices yoga is 41, has been an RN for 16 years, and was diagnosed with Parkinson’s 10 days ago. I was like having the rug pulled out from under us only to find a trap door open up underneath.
I am happy to find this blog and appreciate you taking the time to share your life and experiences. When were you diagnosed? Please know I am sending you warm thoughts and affirmations of strength.
I am always delighted to meet another yoga instructor, though I’m sorry it is due to your husband’s diagnosis. Please know, no matter how much your world feels shattered right now, you will find a way through. I don’t usually quote bumper stickers, but this one is relevant: Parkinson’s is a word, not a sentence. It may feel like the latter, but with time, information, and a supportive network, it will get better.
I’ve met individuals who seek out services and all they can learn immediately while others need time to get their heads around the whole concept. Whatever time you and your husband need, if you’re in the U.S., know that the American Parkinson Disease Association has chapters in every state (except VT, I think). They are an incredibly supportive team of volunteers made up of nurses, doctors, people living with PD, and have many resources.
I was diagnosed at about the same age as your husband, 6 or 7 years ago. While everyone’s symptoms vary, I find that the combination of meds and exercise (yoga, especially, but aerobic exercise as well) keeps me active and enjoying life. Oh, there are adjustments, but life is all about change (or so I’ve read :)). I still travel, though I make adjustments to allow some extra time on each end; I still cycle quite a bit, though more often on a tandem. ‘Normal’ gets redefined daily. That said, to my nine-year old, I’m mom, not a lady with PD.
Please know that you’re not alone – neither one of you. It’s scary, but as my father once told me: It’s okay to be scared, just don’t let it frighten you.
Please email me directly with any questions or concerns or anything that comes to mind.
Warm wishes to you.
Thank you Renee. Your response really touched me. I promise to email and I’m sure we’ll have questions. Happy holidays and thanks for the hopeshot.
I am 72 years old and was diagnosed with Parkinson’s a year ago. I am staying clear of medication for as long as I possibly can.
I have a copy of your excellent book and have just begun using it – didn’t realise how stiff I had become! – but I’m a former marathon runner and stiffness tends to come with the territory.
I walk every day and run on a treadmill three times a week (albeit rather slowly!) For the past three years or so I have had some breathing difficulties when running – no problem walking though. I’ve had a pulmonary function test and x-ray and have been diagnosed with a mild obstruction. Could this be a symptom of PD?
Thank you for your upbeat approach.
Thanks for getting in touch. And good for you for staying so active! More and more studies are showing the benefits of exercise in managing the symptoms of PD, a few are even particular to yoga.
Funny you should mention running. For many years, I’ve been a cyclist. I started running *after* I was diagnosed. Though I’m no marathoner, I enjoy a couple of miles on paths through the woods. And, apparently, using the different muscle groups by varying our exercise routines contributes even more to the health of our brain cells. (Just imagine if we learned Italian while running…kidding! I think the benefit is in keeping those brain cells awake, though.)
Some PD patients do experience symptoms where they have difficulty using the diaphragm. Do you have a neurologist whom you trust? Bring your concern to him or her. Sometimes breathing exercises help. Sometimes medication helps. Sometimes a great sense of humor helps. I aim for a blend of all three. 🙂 Seriously though, a good neurologist is essential. I’m fortunate enough to live in the Boston area where there’s a plethora of great hospitals. If you’re looking for a referral in your area, try contacting the APDA at http://www.apdaparkinson.org They have a resource and referral line as well as support groups in nearly every state.
Keep running, keep up the yoga, and keep that great attitude,
Yes, the sense of humour is important – it was difficult to remember that in the first few months after diagnosis. Another thing is the awareness of what is going on from day to day. My wife is a great help – very down to earth and always there to remind me when I break into a slouch or a shuffle and when my rich baritone voice regresses into a soft mumble (I’m sure it’s her ears that are going wonky). I also have a daughter in Montreal (I live in Newfoundland) who badgers me to keep up the yoga.
I was not pleased with the neurologist who diagnosed me (I don’t mean I blamed him for the disease!) – he was too eager to talk about possible future deterioration – sleep problems, hallucinations, dementia and so on. I am expecting to see someone else fairly soon.
I have come to terms with the fact that there are good days and days that leave something to be desired. Yesterday started out as one of the latter so in the afternoon I went out for a run. The run felt awful, was very, very slow and I cut it short at about 4k. However, for the rest of the day I felt great, was walking well and was moving much better than I had been earlier in the day. This is not the first time this has happened.