You know, I go through different emotions and thought processes as my family continues this battle against Parkinson’s disease. When discussing this with others different outlooks always surface that help me as a person handle our own journey with this. I do know, this disease has opened my perspective as to how I feel and approach many things in life now. From making the most of each day we are given, not put so many “wishes” on the back burner to do in the future (because it may not be possible)….and to be more attentive to someone else’s struggles that they didn’t have a choice to have.
***Let’s skip back roughly 15-20 years…. I didn’t comprehend how a disease can slowly change and consume a person’s life (as well as their families). A part of you just assumes there is a pill or treatment for anything now days. Medicine continues to take leap and bounds every day, at least that’s what our textbooks continue to highlight and promote. In general, it’s a very solid statement, until you are faced yourself with one of those diseases they just haven’t figured out yet. I think the influence my dad had on me growing up regarding his constant saying of “no excuses” maybe I took to a little extreme. When a single pill started to alter my dad’s characteristics, I got grumpy….(now given at the time we didn’t know it was from the pill)… I got mad at the fact of things he was doing….and I remember lashing out one night at him literally screaming “NO EXCUSES” when he kept saying I Just don’t know why I want to do this. (A “family hard point to talk about” was when this dopamine medication was creating a compulsive tendency towards certain things, later discovered as a side effect of that particular medicine) The side effects of these “pills” etc were sometimes far worse than the disease itself. I remember my mom calling when she saw something on the news informing of the studies being done on that medicine and the findings they had discovered. It was a sense of relief to my mom, because for so long we didn’t understand what was going on.
I’ll be honest…. (Brock always laughs when I say that, because he’ll respond sarcastically Oh good…I hate it when you lie)…. I’ve probably kept this blog post to myself for many reasons….but during yesterday’s run I got to thinking….Just because I’m fighting hard to keep things positive, it doesn’t change reality that sometimes it just plain sucks. It’s probably important to share the bad with the good so that others when faced upon the harder parts realize its normal or understand others have been there too. It isn’t always a “GREAT” ride..no matter how positive we push to be and maybe we want both…we can’t learn without one and the other.
The Ugly reality….. how it alters others to act. I may not be speaking in English right now, I’m not even quit sure how to describe this in a professional correct manner without it coming out an inappropriate way. BUT… there are some people in your life that you expect to act a certain way given certain situations. We all react to tragedy differently and that’s why I try so hard to understand where some may be coming from, I try to open my perception on why they may be acting a certain way prior to getting upset about it. I’m not saying I know the right way or wrong way….but I do think there is a better way. (I’ll be the first to admit for years I just wanted to pretend it wasn’t really happening and to avoid the topic of the disease because it was easier to deal with then to know what was going to happen. I even refused to educate myself on it at first because I lived in fear of not wanting to know maybe what could happen to my dad) Over these few years there has been blame placed on different people, harsh words spoken, and downright hatred that has escalated to an unfortunate level of disrespect that isn’t deserved. I don’t understand why it has to come down to that.
When nobody else has answers, I suppose that’s when fingers start being pointed….that part I know is a general reaction to anything someone doesn’t know quite what to do so they blame someone else, that’s human nature I guess. However, the truth is…everyone is doing everything that they know how to do to the best of their abilities. There isn’t a way to make any of this easier, no matter if it’s your son, your father, your husband, your friend etc. I will say in this, my mom has taken on an extreme amount of responsibility over these past several years. It is heart breaking enough for me to think about all the things I wanted my dad to share with me and be able to stand next to me to do that he won’t be able to do physically. I know there are things my mom misses being able to do with him every single day....including just being able to exchange words in a conversation. I know I am only speaking for myself, since this is obviously my blog….. but… I’m trying to put this into words maybe for a sense of dealing with it…so I can move on at least for me. I’m done with the rumors, the lies, and feeling the urge to want to protect my mom from these accusations. My mom has handled far more then many others could even think of….she has more on her plate then many do even prior to my dad’s sickness. I’m tired of things not going perfect for some, and the blame being placed on her.
I’ve convinced myself sometimes you just have to let go……no matter the relationship this person may be….there are many famous quotes that state surround yourself by positive people, and maybe at the end of day, I have to make that decision for myself and for a few others in my family. I almost feel as if maybe it’s a selfish decision, but I’m tired of what spirits we do have being a negative focus when the topic comes up. If anything I will protect my family from this pessimism that has sense spiraled over the last few years and even some recently and put it to better use, we have bigger things to focus on anyway. I try to put others before me as much as I can, and I’m just exhausted at this point of understanding and even allowing myself to get upset/worked up about it. Christmas came and went for one example without a single word other than “We aren’t celebrating/buying Christmas this year…which was mentioned in October in my birthday card in fact”…..and to be honest the “cancellation of Christmas” we were told became obvious later on….cancellation of Christmas was for our side of the family.
Now….there isn’t a need for feeling sorry, this isn’t what this blog post is about…. I’m (and my family) is surrounded by some of the most wonderful people a person could ask for….family relation or not…. and to be honest…what I’ve learned in life (all 30 years now)…it doesn’t matter if someone is related to you by blood…it matters for those who choose to act that way…you get the opportunity to pick who you want in your life, and I’m beyond lucky of who I’m surrounded with that want to be there. Just know…if your family has altered some because of a difficult situation, you aren’t alone and don’t let it affect the hardships even more…there are many people who’ve been there and understand.
One thing that always amazes me…. Is the uplifting support from complete strangers…. You create this mental concept of who will understand, help, be there etc in hard times. It’s disappointing when the obvious people don’t do what one may expect ….but what truly makes a difference are the new friends you meet along the way as if they’ve been there all along. I do believe there are some days when I feel so overwhelmed at wanting a solution, making a difference, and just needing a push in the right direction.... it seems to always arrive at the right time from a friend I’ve met along the way.
Life isn’t always going to be as picture perfect as we’d like it to be….but I don’t think we would learn from that either. I’m happy for the struggles we’ve had along the way, because I do think it’s made me a more understanding person and I hope a better one for that matter. I hope to be a little more stern about who I let effect my spirit, and know I wouldn’t be where I am today if it hadn’t been for those people who were the encouraging supportive ones along the way….most of all….thank you mom and dad…..even during my grumpy/overwhelming stages I know I wouldn’t be who I am today if it hadn’t been for you always being there.
"Stop complaining and get out there and do something!
(That's exactly what my dad would say to this blog post!) :)