Little Hut, Little Hope

cartoon-hut-on-fire-cartoon_hut-_no_foreground     I read this little short story with a theme of hope that I thought I would share. I am unsure of the author, but I wanted to share it anyway. This story talked about a man who was the lone survivor of a shipwreck and had washed up on a tiny, lonely island. Exhausted, he built a small hut out of driftwood and palm leaves to give him shelter from the elements, and to keep the few belongings that had washed up with him safe and dry also. Since the island was tiny, he would spend his days walking completely around it, picking up a little food, and whatever other items he could find to help him survive. This man also reinforced his hut each day because as each day passed, he lost a little more hope of being rescued from his terrible situation.

One day, the man was out waking, and a thunderstorm came up, and as the man made his way back to his hut, he could see it was on fire as lightning had struck it. The man fell to his knees, and cried out “Why God? Why take away my only hope of surviving here?” The man slept under a rock for the night, worrying about what his future would be after losing his shelter and belongings, and ultimately, all hope. The next day, the man saw a boat approaching, and he was rescued. The man asked, “How did you know to look for me here?” and the simple reply of the captain was, “We saw the smoke from your signal fire.”

There are so many times in our life where we can be forced to deal with some pretty tough ‘islands’, and we find ourselves relinquishing our hope for a better tomorrow, all while resolving to accept that our situation, our ‘hut’, is all that we have. We may spend our times investing in cures, self-help books, people, methods, remedies, and even sometimes, outright crazy fixes in an effort to build our ‘hut’ that shelters and protects us from that very same loss of hope. In all reality though, the very same thing that we are investing in to protect us is a growing reminder of our loss of hope, and truthfully is a blatant thief of our joy in the process. But at that point that the storms come, and lightning strikes our ‘hut’ of protection, destroying it, what are we left with?

Much like the man in the story, sometimes all we can see is what we have lost, completely focusing on the desperation of our situation. This then becomes what drives us, what motivates us to survive; loss. We live; afraid to lose we have built. We live focused on things that can be lost in an instant, instead of focusing on the horizon for the rescue. As a person diagnosed with PD, my entire life could focus on the ‘hut’ of treatment and prevention and preservation, and while all of those are important for sure, they are not on the horizon for me. My horizon is full of hope and possibility and definitely free of limitations. My hope is driven by my faith, and reinforced by the love of family and friends alike. My hope takes me away from my “hut” on this island, even if for a little while, and even if I have to come back to the island to sleep.

#justbe #parkinsons #litwithin #move4PD #teamfox

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What’d you say?

HearThere are a lot of people out there  who will tell people what not to say to someone who has ____________ disease. As you have probably figured out from my earlier blogs, I fill in my blank with Parkinson’s, but that is what I carry around; other folks have different blank fillers. However, I do try to write from my personal perspective, in a hope that it can be encouraging to someone else. First of all, I don’t want to tell anyone what not to say. Truth is, we often times can’t find words that we think are fitting, and we nervously say ‘something’ to provide some intended comfort to those who need those words. I said that in my last blog; I stand behind that now.

Here’s a trick for the blank-fillers: don’t get upset with people when their intentions are genuine. I have found that I am far more reactive to words or phrases because I am struggling, and when I get struck the wrong way, I feel like someone is piling more dirt in the hole I am trying to dig out of. It is especially easy for us to become entrenched and embittered by remarks that we didn’t like or made us feel like folks thought we were big nincompoops (had to spell check that word). I know with Parkinson’s, the biggest complaint by blank fillers is that people are  summing us up by saying things like “their grandfather had Parkinson’s”, or that we must be” getting better because we aren’t showing symptoms”. Check this out blank fillers; their grandfather probably did have Parkinson’s, and this person is just trying to figure out a way to connect. The second person just may not have a good understanding of degenerative disorders.

I meet folks from different walks of life often, and I find that sometimes, in my way of trying to show a connection, I use examples of my own family. For example, someone says “I am going to Lackland AFB for my basic”, and I am like “My dad did his basic there when he was in the Air Force.” “Someone else may say “I bought an F-150” and I am like “My granddad would only buy Ford trucks.” I am not minimizing your excitement or your life; I am just trying to identify with you because I value you as a person and your conversation that you are sharing. As for the second example, I have never been a farmer of emus. I may say something crazy like “ I bet you can get a lot of chicken salad from one of those birds” or “There sure are a lot of McNuggets in that bird.” Thing is, emu meat resembles beef more than chicken (thank you Google), but because emu farming isn’t my life, I am going to say things that are way off base. The same is true for someone who doesn’t fill their blank with the same blank filler  you have.

Now to all of you who are scared to say anything to someone who is a blank filler. It is okay to ask about the disease process, how that affects us, how that looks on a day to day basis. Trust me, if you don’t have __________ disease, you may actually have some questions. Second, I am John, and I have PD. Guess what; I am still John. PD doesn’t define me. My faith, my family, my friends, my career; all of those tell you who I am. I really like it when your interest is in me, and Parkinson’s is just the tag along, and not the other way around. Ask me about my kids, my grandkids. Ask me about serving in the military. Let me know with a text or a card that you are thinking about me and just wanted to say hey. Realize that sometimes, the energy that is required to go and do may be stretched, so don’t get hurt feelings if I say I don’t want to go and do; maybe you can just drop by and say hey when I can’t go and do.

But bigger than all of that, just remember I am still a person. I like to laugh, have fun, have friends, and enjoy life. So while I don’t let Parkinson’s define me, don’t let Parkinson’s define who you see when you see me. And don’t worry, I won’t hold it against you that your grandfather had Parkinson’s if you won’t hold it against me that I don’t know much about emus.

#justbe #parkinsons #litwithin #move4PD #teamfox

 

A Man with No Feet

I have found that people are often interconnected by being able to both feel, and express sympathy when the situation warrants it. We may hear of the loss of a loved one, or a life changing diagnosis, or a sudden layoff or loss of job, and the deeply connected side of us, even if for an instant, experiences a hurt for the other person, and almost immediately, a beautifully intentioned, heart driven “I’m sorry for…” flows out, and that small (or even large) pain that we felt inside for someone else actually experiences some soothing, and we hope and pray that the other person feels that too.

Don’t get me wrong, I appreciate a little pity or compassion occasionally; it may even get me a little favorable treatment from those around me. And while I do not want to hear the old “suck it up buttercup” speech, or the old “you’ve just got to man up and face this head on” cheering section, that may be what I need sometimes too. What I am saying is that when we don’t necessarily know what to say, maybe the nervous “I’m so sorry” is not the best thing to offer. Maybe, to show that we really are connecting with the person struggling, we should recognize healing and encourage through that, instead of reinforcing the loss of something.

Generally speaking, people who experience life changing events or diagnoses or death are generally figuring out how to move to the healing side of the process. When I was diagnosed with Parkinson’s, I began to search for the hope in it, the reasoning behind it, the outlook for it. I started applying faith and family and research to my plan of attack. I was simply not going to be beaten by this. Yes, it may be a lifelong degenerative process, but it it would not beat my spirit, my heart. But then came the “I’m so sorry”, and I was suddenly reminded that I was facing a lifelong struggle, something that most people hope they do not get, regardless of what the struggle is called. Call me sappy, but I appreciate the care behind the intention, especially because a really good friend reminded me that all of the people in my daily life are actually going to share in this struggle; they too are going to have to have a plan, and included in that plan is grief surrounding what they lose in my disease process. Sometimes, ‘I’m sorry’, may actually be recognizing what they are losing in my disease process, and they may feel some of the pain subside from their loss by saying that. I don’t know, but maybe.

However, I was reminded of an awesome perspective, and I am not exactly who said it, but I say it all of the time. “Please don’t be sorry. It is okay. You see, I try look at it from this perspective. You feel sorry for the man with no shoes, until you meet the man with no feet.” I smile, look down, and remind them that I still have my feet (and most of the time, shoes). So while I appreciate the care and love behind ‘I’m sorry’, maybe you could just ask me what Parkinson’s is like or how that looks in my life or how I fight it on a daily basis or what words of encouragement I have that I could share with you as you face struggles, or even be honest and tell me how you are impacted by my disease process. I want to encourage you as much as you want to encourage me. “Sorry” indicates loss and grief, and right now, I still have those feet, so I plan to #justbe a fighter and #justbe an encouragement every chance I get; and I am going to find those dang shoes too.

 

#justbe #litwithin #parkinsons #move4PD #teamfox

The Comfort of Mama

crazy-mom-184

I would be remiss this week if I didn’t write about my mama. I remember being somewhere around 6 or 7, and telling my mama I was mad, and I was running away from home. She helped me pack a brown Piggy Wiggly paper sack of clothes, hugged me, told me she would miss me, and sent me on my way.

Now I don’the remember what I was thinking, but I bet as I wandered down the driveway, I was thinking about hot, homemade biscuits, a cozy bed, and the comfort of my mama’s arms. I do remember making it to the mailbox, and thinking she had learned her lesson, so I casually checked the mail and went back home. She had watched me the whole time and welcomed me back, as if I had never left.

I am fortunate to still have my mama here with me. For some, God has their mama with Him. Either way, whether it is in person, across miles, or through cherished memories in our hearts, mama’s  everywhere will always welcome us in, love us with all they have, give us what they can, and always, always, always make us feel special with the comfort that is mama. I love you mama; Happy Mother’s Day a little early. Thank you for being the best mom ever!

Today, #justbe celebrated as a mother, unless you are a guy. Then #justbe the aggravating pain of a son that you are as you celebrate your mother.

#justbe #litwithin #parkinsons #move4PD #teamfox

Wake Up With…

Tomorrow, I will not wake up with Parkinson’s. I told myself that several days in a row after being diagnosed, and dang it, wouldn’t you know it didn’t work. I started thinking about people who wake up with things they don’t want; a crooked nose, a bald head, an empty house, unemployment, a life changing disease. I know that surely they have told themselves that tomorrow, they will not wake up with ________. Sometimes, life is not very fair when it is the dealer. I didn’t like the cards I was dealt in March.

Too often, we can let what we wake up with define us, shape who we are. However, I don’t believe that is what I am going to do, and neither should you, especially if you woke up with ________. Who we are is about faith, resilience, strength, perseverance, motivation. Who we are is about loving others, serving others, and helping others. These are the things that define us and shape us. Our attitude will be our success. So, waking up with __________ is not who I am. Waking up with Parkinson’s is not who I am.

Tomorrow, I will not wake up with the attitude that my Parkinson’s controls me and defines me and shapes me. I will still have Parkinson’s, but I will wake up stronger in my soul, and I will #justbe for someone who needs me. What will you wake up with?

#justbe #parkinsons #litwithin #move4PD #teamfox