The reactions of people in my life, to news of my diagnosis of Young Onset Parkinson’s Disease, has been that of great support. I am indeed lucky to find such kindness offered to me at a time of some reasonable trepidation. It never really occurred to me, though, how difficult it may be for people to know what to say to someone they know who is given a life-changing diagnosis.
Some people use humour; words of kindness but mixed with chuckles about me being ‘old’, ‘infirm’ or like a ‘grandad’; perhaps due to their focus on my use of a walking stick? Some offer kind support but mixed with questioning the diagnosis with “…but are you sure…”? – as if it may be somehow made in error; dismissing their knowledge of my battle for over fifteen years to reach this conclusive diagnosis in order to access appropriate treatment. Some offer love but then words of philosophy about end of life processes and about death; seeming to focus on the degenerative nature of the disease, as if trying to reconcile the inevitable outcome of Parkinson’s with the person they see before them who looks quite well. They leap ahead into the difficulty of that unpleasant future. Some are incredulous because, specifically, I am not always showing signs of physical shaking and so they offer kindness and support but then insist that I must have another illness; a result of the fact that many symptoms of Parkinson’s are hidden or not blatantly visible. The kindness, support and love are beautiful and mean so much to me. The part that gets added on, well that can sometimes be painful.
Others offer their kindness through actions; “I’ll do that for you…”, “Don’t do that, I’ll take care of it because you’re not well…”, “You might need to think about taking your medication and leave me to do that…”, “You can’t do that, you should be resting…”, “Here, sit down and you just rest while I do this for you…”, “I’m not sure that’s a good idea for you…” and “I was going to invite you along, but I thought it would be too much for you…”. Houseguests who, through their concern, kindness and love, insist on doing housework while visiting with us! From washing dishes to vacuum cleaning. Great kindness, but taking away my own tasks and rendering me disabled. The kindness and heartfelt intention is beautiful but the part that is added on, as an instruction for me to do nothing, sadly that is the part that disables me, for I am rendered useless.
I know that the love and support of my friends is beautiful and I treasure it. What I may have done wrong is to forget to remind people that I am still ‘me’ and that, for now at least, ‘I am okay’. I forgot to remind them that I have an attitude that focuses on ‘What I can do’, rather than ‘What I cannot do’.
So, if you see me somewhere, it’s genuinely okay to talk about the Parkinson’s, to ask questions, to say how you feel about it, to ask how I am – and if you can join me in simply accepting it, that is the best support of all. I need to live ‘in the present’ and not project too far ahead into the visualised degeneration and disability of what will inevitably come. Help me, by staying in the ‘here and now’. It’s absolutely okay to ask me whether I am capable of doing something, for your kindness and consideration are truly valued, but please do not try to make that decision for me; that is when I become truly disabled.
I still need to do my things that I need to do. I may appear slower or even to struggle, but that is okay. Do not let it distress you. Simply offer a helping hand but then also be okay about stepping back, if I kindly decline your offer of help that moment or that day. I will let you know if I need help. Try to remember that although Parkinson’s is largely a disease of the elderly, some younger people do get it, but it does not mean we are elderly or infirm – we are still young in mind, body, spirit and attitude and have plenty of living still to do. The more we continue to do, the longer we can hold this rotten disease at bay.
Above all, if you are affected by seeing me go through the trials of this disease, talk to me about that, share that with me and give me the opportunity to be of support to you. After all, I’m your friend, too, and part of that job is for me to offer support back to you.
Actor and fellow Parkinson’s sufferer Michal J. Fox calls us all ‘Parkies’. It seems this community has the perfect saying:
‘I have Parkinson’s. Parkinson’s does not have me’.