It’s been almost two weeks since the calendar flipped to this latest year; two weeks filled with the continuing firehose of bad news and climatic craziness.
I am not sure how much of my ongoing fatigue is induced by Parkinson’s and how much is just exhaustion from all that is going on in the world. How does one begin to tease these things apart?
So I try to be more conscious about limiting my news, but unfortunately, some of the symptoms of Parkinson’s include, fatigue, apathy and depression. There are more days than I want to admit, when it feels like I need superhuman willpower to to roust myself from my chair. It’s bad enough that I can’t find the energy to move but it is compounded by my mother’s voice as she admonishes me not to have a ‘pity party’.
Mom died at 63. I was 28. And now I’m 64. So although she has been dead longer than she was alive in my life, her voice has never diminished. I assure you that this particular maternal caution is not at all helpful. But hey…it is said that awareness is the first step and I am ever so aware that these old default recordings are not the truth.
I am not pitying myself. All I have to do is look around and know that I have been pretty lucky and that everyone eventually has to deal with some less than perfect health or circumstances. I honestly have never gone to the ‘why me’ state of mind.
More correctly, I think the question should be, “Why not me?”. In fact, “Why not anyone?”. I think it’s more remarkable that, for the most part, our incredibly complicated bodies work at all…especially when you think of how many things can go wrong.
It is through this series of self-examination questions that I can refute my mother and figure out what’s happening. Examined in this way, I can determine that, a) I am not having a pity party, thank you very much, and b) there is a scientific and physiological explanation for my low energy, because here’s the thing…Parkinson’s is a cruel and (mostly) an invisible disease.
Because of this invisibility, more than one person has kindly told me I look great. Hale and hearty…indeed.
I have made the same based-on-appearances mistake at the one and only Parkinson’s support group meeting I went to. The woman seated next to me looked so healthy. I was feeling encouraged to see someone who had already shared that she’d had Parkinson’s for more than a decade. She was obviously much older than me, so hey, I said to myself, she looks amazing so maybe this whole Parkinson’s thing won’t be so bad…
And then it was her turn to speak and she very simply said, “It’s been hell. Unrelenting hell.”
Still, it serves no one, if I take someone’s kind comment and insist on correcting them with how crappy I feel. Not only does it make the well-intentioned person feel awful, but by insisting on how shitty I actually feel, my words reinforce and remind me to focus on the worst. And quite honestly, I don’t want to go on with a litany of symptoms.
Besides, sometimes I actually do feel pretty good.
So why am I telling you all this? Because I believe, that, like me, you want to say/do the right thing and when you tell me I don’t look sick, I know you mean well, but you’re diminishing my experience. Parkinson’s is a shitty game of whack-a-mole. What I’m dealing with changes constantly and is not necessarily visible.
I might be walking with you and look like I’m doing great, but most of the time I am conscious of every bloody step. I am trying to prevent my ankle from turning in, my hip and thigh muscles are screaming and more often than not, I am fighting a feeling of nausea, a headache or bone-crushing fatigue.
I am writing this in the hopes that enough people will read it and I won’t have to have this conversation directly. I don’t want to be Parkinson’s poster child, but similar to my aforementioned self-examination concerning my mother’s erroneous voice, consider this as my public service announcement offering an opportunity to learn some new language.
Please know this; I am not trying to make people self-conscious but perhaps just a little more conscious.
Because words matter.
Besides, this kind of language awareness works for more things than my particular disease. If you’re interested in learning more, please check out this link.
Thank you for your understanding.
Thank you for coming forward and sharing your experiences with Parkinsons. My husband also has it, and as he says, “I have good days and bad days”. Michael J. Fox received the Presidential Medal of Honor just the other day. So you hopefully more research can continue and more solutions discovered. Gentle hugs.
Thanks for the hugs Coral. I agree, hopefully new research can find some clues to deal with this horrible disease. It can be difficult to stay positive when dealing with the randomness of the always-changing symptoms. The trick, for me, is to not think very far in the future. I don’t always pull it off.
Beautifully written and so good to hear from you. I’m very grateful for the link of what to say or not say as I often find myself trying to be “helpful” when I’m probably several steps behind the research the person has already done. I suspect its the oldest child in me so need to rein that in. I hear you on the support group experience. For me I alternate between appreciating the opportunity to deep dive into discussions about meds, treatments etc with the scariness of hearing others’ experiences. The first generally outweighs the second but it doesn’t lessen the impact of the second. Sending big hugs and love to you.
Big hugs and love back to you too Michele.
I know people truly are just wanting to help but you’re right, it’s better to just listen. The “best advice’” I’ve had about my snapping tight muscles is, “Have I tried stretching more?” It is that those moments, I would like to magically switch bodies and let them go for it. And please, do let me know how it goes
As for the support group..I only went once, right after I was diagnosed in June. They all seemed lovely but they were all much further along in their disease and I just couldn’t face going back again. Each and every person living with Parkinson’s has their own unique constellation of symptoms but it felt like I was looking at my potential future and I didn’t want to go there.
Is that just denial? Not sure but not ready to find out either.
I hope you’re getting some answers and help too.
Turns out all those cliches and sayings about the importance of health are so true.
I love the frankness and honesty of your blog. So many times, we smile and nod and accept these intentional compliments from people’s hearts, but when I get these “wow, you look great” comments, I always find myself saying but…but…but! For example, even though I’m in recovery mode from hip replacement, between now and the 3-year lead-up, it’s been excruciatingly hard; still, everybody keeps telling me how great I look and sound. My response…”it’s amazing what good lighting and an application of lipstick will do to fool you.”
You’ve definitely been through the wringer. That’s such a perfect Karen response
Thanks for posting Colleen. Your writing is always insightful and it sounds like you. It’s so good to hear from you, telling it like it is. Big hugs.
Hullo Carolyn,
I could feel my smile as soon as I saw your name. I hope you know how much goodness you add to the world. Thanks for being here.
I needed to read this. My husband was diagnosed a couple years ago when the doctor suspected his symptoms were not from the stroke. We walk our dog most days. Somedays he can walk 1 km, others not much. People also say he looks healthy for 82
doesn’t have tremors. Thanks to your article I understand the lack of motivation, discouragement, tiredness. I will be more patient.
Thanks for sharing Barb.
Yes, it seems this disease shifts its focus almost hourly. Some days are like pushing uphill all day and then the next day (or hour) it’s not bad at all. It’s very random and as a result, often hard to make plans. The trick, from all that I’ve read, is to keep moving as much as possible…not always easy when various parts hurt or the fatigue is overwhelming. Wishing grace and strength for you and your husband.
Colleen, once again you are a leader! Thank you for your honest words.
I’m left wondering, though, what IS appropriate to say that shows genuine caring and concern?
“ How are things for you today?”
Or what would show caring and support for your challenging journey?
Thanks Joanne. I’m still figuring it out too. I think your way of asking, “How are things for you today?” or even just simply saying, “It’s great to see you and let me know if you want to talk?”
.
The harder thing to deal with is someone saying, “You don’t look sick.” or “You look fine.” Those kinds of statements feel dismissive.
Knowing who and how you are…you never need to wonder. You always have come across as a caring and compassionate human
Thank you Colleen, for your insight into this terrible disease. Personally I know a couple of people with Parkinson’s and it’s often difficult to understand what they are enduring.
Yes Catherine. I think we all are better at understanding external and obvious issues, like seeing someone with their arm in a cast.
We never know what someone is dealing with, whether mentally, emotionally and/or physically.
Beautifully written Colleen. Having an invisible illness can be very isolating in many ways and trying to navigate it is not for the faint-hearted .
)
The early days of my diagnosis were some of my hardest and darkest.
There is no pity party going on here either just gratitude for the good days and grace for the difficult ones. (But it took a minute to get here
Laurie,
There is indeed gratitude on
my part for when things are going well. I’m still working on Grace 101 when things are rougher. And yes, being part of the ‘invisible illness club’ is not the club I ever wanted to join. But here we are.
There are so many people who are trying to weather so many unseen battles.
Another reminder to be kind…we never know what someone may be enduring.
I too have more to learn. Thank you for being my teacher. Love, SB
Me too, Sharon. Me too. You and I have navigated a lot of situations together.
Thank you for this, Colleen! I have a local friend who was recently diagnosed with Parkinson’s, about your age too, and she looks great, honestly, and I’ve told her as much, but your column helps me so much regarding the invisibility of the disease. It will help me be more aware, understanding, informed. Keep on teaching the rest of us, please! (And all best to you, and a hug.)
Dora,
I am learning too. I realize how often I’ve done the same thing, not necessarily to someone with Parkinson’s, but other awful diseases.
It has taken me awhile to figure out why these kind of compliments bothered me. Once again I wrote this as a reminder to myself.