Change is inevitable in life, but with Parkinson’s it can be one frustrating/heart-breaking change after another. When you are diagnosed obviously there is a huge change in your life an a big focus on acceptance. However that mental state and process will continue to repeat itself time and time again as your new life with PD unfolds. I often joke that Parkinson’s Disease is the gift that keeps on giving because the issues a person with PD can get tend to be astronomical when you combine the motor and non motor symptoms. However, jokes aside the reality is that it’s really a disease that takes…a lot.
In the grand scheme of things I have been lucky and PD hasn’t taken nearly as much from me as it has other Parkie friends of mine. However I’ve still suffered loss at the hands of the disease and one mourns loss when it’s stripped from you and out of your control the same as one mourns a death. The disease has taken my career from me and although it’s been three years now I still mourn it sometimes daily. It’s one thing when a person retires and struggles with what to do next, or chooses to give up work to be an at home parent or whatever the case. However when your career is taken from you and you love it and it’s out of your control it’s a great loss. I’ve spoken of it before and how it feels like a loss of identity. Sure I keep myself busy volunteering on my “on” times and busy with the kids, I do that so I don’t go crazy and feel totally useless. But I can assure you that for anyone living with Parkinson’s disease or any other health issues that has been forced to give up their careers they struggle greatly with this. I think it’s worse for those of us who are younger, but regardless of age it’s something the disease has taken from you, it’s out of your control and it’s hard to accept.
Then there are the typical losses of friendships/relationships, sad but true it happens. Any major crisis or change in life tends to show you who your true friends are and getting sick or diagnosed with something like PD is no different. And it’s definitely confusing, frustrating very sad and something you mourn when you lose someone from your life you love. I’ve been here and I know most people I know have as well. Other typical loses and things PD takes from you are physical. Perhaps it takes your ability to hold a fork with food on it with ease because your tremors are bad. Maybe it takes sleep from you as most of us with PD suffer from Insomnia or at the least severe fatigue. It could be your ability to perform a certain task that has been taken from you maybe you used to play guitar but now you cannot. There are so many things that are taken from us.
And then there’s the big things that are taken from you, the make you want to crawl in a hole and bawl your face off or punch holes in the walls. I have witnessed this from some of my older Parkie friends and it’s terrifying to watch. For someone who’s young onset it’s like a glimpse into your future, it’s heart breaking and you feel helpless. When PD hits the stage where it takes the HUGE things from you like your independence it must feel like your entire world has come crashing down on top of you. When you’re told that you can no longer be home alone, you need round the clock care, you are no longer able to drive your car in turn losing the last things you’ve held onto in your mental game of feeling like you still exist, that you still have some form of an independent life, that you still have some control. Let me tell you when a disease like Parkinson’s takes from you, takes things you love, takes your independence, takes, takes and takes some more it is heart-breaking, it’s crushing, it’s depressing and it’s so very very hard to accept. And although I haven’t gotten to the stage I’m speaking of here I know the tremendous feeling of the dark cloud overhead and the empty feeling inside from losing my career, fine motor abilities, sleep and some friendships. I know what it feels like to put on a brave smiling face when you go out in public when you feel like your dying inside. I know what it’s like to want people to think you’ve got this, you’re strong and a fighter and then cry yourself to sleep at night. I know what it feels like to know your family & friends love you and want what’s best for you, but at the end of the day you feel entirely alone because nobody truly understands what you’re feeling physically or emotionally. So when I see people I’ve come to love who have this disease who have hit those walls far beyond where I am in my PD life I do understand to some degree the anger, the resentment, the fear, the sadness they must be feeling. And watching it scares me but also breaks my heart because I wish I could fix it for them.
But when it’s all said and done, despite the unimaginable loss, all the things this disease “takes” we dust ourselves off, we put on a smile even when sometimes it’s fake, we get stubborn, we fight and most importantly we find the joy in each day regardless of the battle at hand. And this is what keeps us going this is what sets apart the person who has given up from the courageous person who’s continuing to go to war. It’s not easy and I am positive that for those friends of mine who are at the later stages and having all the big things they love taken it’s overwhelming. But I can tell you this, those people are still fighting, still finding the joy in their journey and although they have their moments they are amazing, to be admired, to be looked up to. They are brave beyond measure, courageous beyond your understanding and even when they are angry or sad they are still fighting with everything they have. So don’t underestimate their super powers and most importantly their need to process their loss in their own way in their own time.
One of the worst things of being a younger person with Parkinson’s Disease is that you become friends with and grow to love a lot of people that are significantly older than you. You have a unique front row seat to the progression of the disease you have, you will watch people you love suffer, you will watch them struggle, you will hurt when they hurt and you’ll be brave despite the fact that it scares the living daylights out of you. I sat by the hospital bed of a fellow Parkie not long ago who I have come to adore over the last couple years who is sadly in the final stages of his life and very unfairly battling cancer in addition to PD. As I tried not to cry for my own sadness this man continued to be joyful in that hospital bed, continued to talk to me about the joy he found in that day and the joy he would have in the day to follow. It was truly inspirational that when at a stage when most would just give up and want to let go because life and health have continued to take and take and take again that he could continue to be so positive. THAT is courage, THAT is bravery, THAT is admirable because acceptance sucks sometimes!
Courage comes in all forms, but when you continue to lose, when something like Parkinson’s disease continues to take and a person continues to smile and look for the joy in the journey despite the extremely unfair hardships….That my friends is to be courageous…. and to my Parkie friends who are suffering with so much being taken from them, you are the definition of courage because you continue to smile, you are brave, you are STILL strong although you may feel weak, you are still amazing and you are still YOU in all your wonderfulness….These are the things Parkinson’s cannot take from you, ever….