Hope

So it’s been a long while since I posted anything to this blog. And I am sorry about that.

MUST. TRY. HARDER.

Part of the reason for having not said anything was depression. That insidious old dog was all around and it took a while to chase the old bugger off. Another part of the reason was I didn’t feel like I had anything to contribute; I was just going about my business and doing my thing, taking each day as it came and trying to keep on keeping on. A further reason was demoralisation. Whilst the DBS surgery was a fantastic success and I have physical control over my body again, the non-motor symptoms of Parkinson’s have become more and more debilitating. I just couldn’t see how any current scientific advances were going to help me and to be honest that left me feeling pretty hopeless, and terribly terribly sad for my dear wife and children.

Hopeless means the absence of hope. This was a new emotion for me. I don’t think I’d ever experienced anything like that before. As much as I thought I understood what that meant, I really didn’t. The emptiness, the futility, the despair. I began to appreciate why religion appeals to people, although it doesn’t to me. Having hope that life will be better, in any number of small ways, is what drives us forward. Hope – that your day at the office will be more productive than yesterday, hope – that your commute will be less stressful than previously, hope – that your finances improve, hope – that the sun will come out for a while today, hope – that today will be less painful than yesterday. These are all things that make us get up, grab the day by the horns and get into it. But when you are without hope, that is a very very dark place. You can see why faith in a higher power would be attractive, if only for something to cling to, to get you moving ahead, that your current despair will improve.

In the absence of such faith, I began to carefully think about this. Was I really without hope? I soon came to the conclusion that I was not. I realised that you have to find hope, your reason to get up and fight for each day, in the things that matter most to you. I see my family and hope for many many more years together. I see my amazing wife and hope for a long future of laughter and friendship, love, romance and mutual support together. I see my friends and hope for a future where they are a part of our lives.

I want to see my daughter go to her school ball. I want to teach my son to fish. These are but two of my many hopes and dreams. It is these things which give me hope. The courage to get up, no matter how painful, injest that boatload of medicine and wobble my way to the kitchen for coffee, stumble to a chair to read the news, and start another day.

AJ

Comments
7 Responses to “Hope”
  1. California Yopp says:

    Hello AJ,
    I’m a yoppi ( young onset Parkinson’s patient individual) living in California, USA. Thank you for sharing your DBS video with the world. It gives hope to thoses of us that are trying to decide if the risk is worth the potential reward. In my case, I have chosen that it is. My first surgery procedure is Wednesday April 22nd. I’m having bilateral STN DBS.
    One of my concerns about the STN placement instead of the GPI is the higher risk of nonmotor effects such as depression and psychosis. Have you discussed the potential association of your depression and the STN stimulation/placement with your neurologist? I’ve also heard that the difficulty of probe placement with the STN target can cause the surgeon to create more lesions while attempting ideal positioning. Did your surgeon make multiple passes to place the probe? Would you know or did he tell you?
    Wishing you all the best. I might post a video about my DBS journey. I’m having 3 procedures at Hoag Hospital in Newport Beach, CA. No shaved head, just small areas will be shaved. Procedure will be done over next 3 weeks; First probe, second probe then computer/ battery packs. Will be “on” about a week after my 3rd procedure.
    Hoping for the best! Btw, I’m a 45 year old Mother of 2 and wife of a wonderful, supportive husband.

  2. Nikkis says:

    Oh bugger
    Remember one day at a time,try not to be too hard on yourself and you are doing a fantastic job dealing with this bad card you have been dealt .i know from experience what is like having a parent who suffered from depression and advise is stay like you are involved with your kids lives because they will remember all the positive things you do with them and forget your down times .
    Your kids will also become more empathetic adults than many of their contempories who haven’t had exposure to the very imperfect world we live in.
    Your kids will always love you because they you are their Dad
    Nikki
    Coffee sometime?

  3. Jill Dorward says:

    Sorry to hear the sun stopped shining for you as you have enough to contend with.
    Keep the hopes and dreams going xxxx Jill

  4. Jacqui McFarlane says:

    AJ, I too thank you for your courage in sharing with such authenticity. I too, struggle with depression and feelings of hopelessness, compliments of Parkinsons. Today has been a particularly difficult day. Reading your words comforts me, in that I do not feel so alone in my struggle. Thank you my friend and fellow Parkie! I met Lynn at the November book launch. My daughter and I enjoyed talking with you both. Lynn is an inspiration, as are you. What a wonderful couiple you are; so pleased you found each other and get to share your life journey together. Love and hugs to you both.

  5. Dilys says:

    AJ

    Thankyou AJ,

    to say I enjoyed this doesn’t quite seem quite right, but I did. And I also know that you do not need to start with an apology, apathy is hard to deal with and so is depression.

    I think hope lies in meaning making …..

    “For the meaning of life differs from man to man, from day to day and from hour to hour. What matters, therefore, is not the meaning of life in general but rather the specific meaning of a person’s life at a given moment.”

    Man’s Search for Meaning
    Viktor E. Frankl

  6. AJ, that has brought tears to my eyes. I commend you for your courage to write it and share it. Love to you and Lynn as always.

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