I get this question often - why bother? Why bother writing a blog when it doesn't change the fact that I am the wife of a PWP? Why bother with the hassle of selling clothing and merchandise for a measly few bucks to donate to the APDA when they need millions and millions of dollars? Why bother donating money at all when they don't have a cure? Why bother? What good does it do?
The answer is pretty simple. What other choice do I have? I watch my husband deteriorate a little more each day, progressing further and further into the depths of a cruel disease. I can't cure him. He doesn't want me hovering over him. There's not much else I can do. I refuse to sit back and watch this horrible disease take over and do absolutely nothing at all. If what I do amounts to less than a drop of water in a well that's okay because at least I am actively doing something. What I do gives me hope. Hope for a cure? Well of course I want a cure. Don't we all? But my hopes are much more tangible than that. Each morning I pray that today will be better than the one before, that Keith will have more energy, fewer muscle cramps, more strength. I hope that I will have a deeper understanding of what PD is doing to Keith. I hope each day that I will find comfort and friendship in my blogging. I hope that my fellow PD friends and their families are having good days as well. I hope that the money I contribute to the APDA will help produce more social networking for PWP, as it is so very important. I hope to somehow find enough money to incorporate my non-profit in order to help all the children with loved ones affected by PD. I hope that the words I write in this blog will reach just one more person and that person will perhaps find some comfort, if only for awhile. I hope that my regular readers, those who have PD or love someone who has it, will continue to find comfort and companionship via this blog.
My hopes are not exclusive to Keith and a cure yet the implication is that my hope is naive, that I will somehow lose it when catheters, feeding tubes, and wheelchairs come into play. Two years ago I met a young lady in an online medical community whose husband had PD. They had two young children but divorced when he became disabled. She laughed bitterly when I told her of our family and that we were trying to conceive again. After a long, heated discussion about kids and PD, I told her that for the most part, PD does not scare me, I have hope and I strongly believe that God will not give me anything I can't handle. "You are stupid then, because what is hope going to do for you when your kids are sick in the middle of the night and your husband can't do a damn thing to help?" she said. Honestly, I can't say right now what I would do in that situation but I imagine much of my life would be lived as a single mom, doing most, if not all, of the working and child rearing myself. But I had to ask her in return - is a husband in a wheelchair, one who can't help in the middle of the night, disqualified as a family member? Is he not still your husband and father of your children? Is he not still a human being, with feelings and thoughts? She refused to answer me and I have not spoken with her since.
I married Keith for better or worse, in sickness and in health, but my hope transcends my vows because it is not just my marriage and my husband I hope for. In my constant thoughts are all PWP and their loved ones, especially their children, grandchildren, nieces and nephews. My hope is for the confused eight year old who just wants to know that her mom is going to be okay, and for the middle-aged woman who can't sleep, desperately searching the internet in the middle of the night looking for answers. My hope goes out to the elderly gentlemen tirelessly and tenderly massaging the curled, cramped feet of their wives. My hope is for all those individuals who take the time to go to monthly PD support groups, conventions and fundraisers. My hope is much more universal than self-serving. Naive? I think not.
So why do I bother blogging, reaching out to others with PD, raising money for the APDA, establishing a non-profit? I do it because I can. I do it because it gives me hope. A lot of people are counting on me for that hope, especially Keith and our children. Hope keeps me strong, and I am going to need all the strength I can muster for the journey ahead.
So who's with me? Anyone else Got Hope?