One day at a time (Parkinsonsfight.com)

Standard

Special thanks to Dan Gearhart for permitting me to share this….


A funny thing has happened to me lately, I have been growing physically and emotionally stronger every day fighting a disease that only takes and takes and never gives. I hate that I have this disease and will always wonder what would be different if it weren’t my fate. The answer is probably not as difficult as I think and really quite simple, I wouldn’t be the man I am today. I wrote last year on my birthday about not knowing how good you have it until it’s gone; that couldn’t be anymore truthful then it is this very moment. As I watch all my years of hard work and personal investments unnecessarily fade into the black hole of divorce, it’s hard to find any positives.

If I hear one more person say how much better off I will be I’ll just scream! It just stings too deeply, I still believe divorce is such a selfish act, children deserve so much more than what they are being given.

When I look at their innocence in all of this dysfunction – is when I feel the most helpless. Communication is the key to any broken lock and very much still is. Text, email, tweet, instant message, does anyone communicate verbally anymore? We even break up on line with the hidden messages meant to hurt each other. My wife recently removed our anniversary date from her social profile in a final attempt of petty abuse, further trying to nullify the 3 blessings our union created. I simply hate non verbal communication with all the drones staring at their phones texting because no one can truly function speaking to one another anymore. I am just as guilty typing one thought at a time and trying to read body language through a glowing screen and trying to fix something that doesn’t want to or can’t be fixed.

Even with everything that I have gone through lately, I still remain blessed with so much more than many others. I have so many praying for me and my family, not to feel blessed. I know my children’s love for me and mine for them is an unbreakable bond in which at this point can never be compromised and will prevail. I’ve owned nice things, lived in a nice warm house and have a great job all while raising 3 beautiful and innocent children. BUT….. there’s always a but……I have Parkinson’s and it’s teaching me how to be stronger than I ever thought and who my true friends are. In turn, my legacy to my children will be that ‘I Never Gave Up’ and I taught them how to be strong, compassionate humans in the face of adversity. That is so much more than the majority of the world will ever have. I just will always ask myself over and over what could I have done differently? The answer is nothing; which doesn’t really answer my question but makes me want to fight even harder at this part of my story. Hopefully, all this is making me into a better and stronger man. If you’re not growing spiritually, physically or emotionally your just not growing at all and at times my growth has been stunted.

Whatever you can do, I will try to do better. I may not always succeed, but I promise you I won’t quit until someone can prove me wrong or I’m just not capable anymore. Determined is a word that is very powerful to me, and I don’t use it lightly. I have felt a calling to help people in pain and this may be the next doorway that I must walk through. I live with Parkinson’s everyday as I awaken from bed and start my daily routine, simply for the love of my children. You see, I’m still learning and living with it even while it’s being used against me in divorce.

What most people don’t understand about Parkinson’s is it’s a disease that affects 10 million different people 10 million different ways, it has symptoms that come in various forms with no two people alike. Also, for some, it comes with a great deal of physical pain. The physical pain I can take, it’s the emotional which is mostly devastating. However, during certain periods you’d never know I have it, but that

takes work. You have to become an expert at your body, figuring out triggers while at the time trying to remain calm and peaceful inside. The natural reaction when hurt is to hurt back. What would you do if you hit someone and they didn’t hit you back?  Does that make you weaker or stronger? At this point I would have to answer a little bit of both. As this disease keeps pushing me the only option I have is to push back and live with it. It’s made me stronger than I ever thought I could be but has also hurt me significantly. Recently a new friend gave me T-shirt that simply reads, “Hurt people hurt people, Blessed people bless people”. I’ll let you try and figure out which one I identify with.

Even though I struggle to find the blessing of a broken heart and family I question what good can come of this? My children don’t deserve this type of upbringing because my wife and I couldn’t figure it out, the difference is I can look into their eyes and say I tried with every fiber in my being to make it work. I really don’t hate anybody except those who intentionally try to hurt me or my family and pray to the Lord to forgive them as they can’t know what they do. I can only pray for her salvation as the bond we share is our children. Jesus died on the cross for our sins and I wouldn’t hesitate to lay down my life for one of my children to protect them from this ever increasingly evil world.

The thing is, this earth is just a pit stop and I am still the spiritual leader of my family. I’ve questioned my own religious beliefs in the past, struggling to get over my individual faith and hurdles. I still believe everything is part of God’s grand plan and if I am wrong at least I lived a life I could be proud of. My moto is ‘I always try to do the right thing’! If I’m guilty of sometimes being wrong, at least I admit it, but I try to never make the same mistake twice. One mistake I can not afford to make is with the salvation of my children, we have eternity to look forward to together. For now, I will love them as much as I can and be the best father and example I can be along this brutal pit stop. 

I have been afraid to write much because of pending divorce proceedings, but my story will be told and my testimony will be that much stronger as the truth ultimately reveals itself one day at a time! I can only try to be a better man with Parkinson’s than without. Fight Parkinson’s, it’s what I do!

Lasso’ing Sleep…..

Standard

Lassoing Sleep

There will be always those days when it seems like this journey will overwhelm and crush me and in those times, knowing that there are people who are going through similar trials is always a much needed boost. In the last 8 weeks, I have been divinely privileged to have become a member of so many support groups, and just the realization that you can be yourself amongst others without the looks of derision, pity or disgust is quite profound. Acknowledging that for every thinly concealed nonchalance, there is a friend who knows what you are going through. And when you see a request for prayers from a new friend, it is not a gesture for fame or recognition, but a sincere request from someone who is going through torrid times.   With the medical capes of Lupus, Fibromyalgia, Dystonia, MS, Parkinson’s Disease and similar villains associated with the neurological system casting shadows, you can truly appreciate the warmth associated with being in a group of defiant individuals.

One of the support groups I belong to is aptly named ‘PD Night Owls’ because there is one common denominator with all these vicious medical conditions and that is the inability of the body to get its much needed rest. In addition to the ravages being wrecked on my body as a whole and the adverse influence it can have on my social life and activities, I still have to confront those little horrors that come with such conditions. Just like the mythical Peter Pan, I will claim my own shadow someday, (because the shadows of these villains just seek to further highlight mine) even if it requires patience, endurance and skilled needle work. As a child, one of my fond memories is darting around with friends trying to escape been tagged or trying to tag someone else depending on what your role in the game was. With the passage of time however, all the fun associated with that game is stored away as cherished memories even as I attempt to dole out some much needed discipline to a little rascal termed ‘Insomnia‘. The futility of playing that game in present times is more than just age-inappropriate, rather it is one where the odds are so unfairly stacked against me that it would be foolhardy to even contemplate it.

Even with a plate already over laden with all these nasty medical challenges,  insomnia finds a way of converting itself into a sauce that trickles through, further tainting the package with extra foul taste. Ideally, life is a series of decisions and choices and so instead of partaking in an unfair game, I choose to witness the birth of every new day. Again perspective plays a significant role, because perspective is a result of a choice being expressed and so I do not detest the approaching darkness of twilight signifying the end of a day or envy the stillness of the dawning that marks the beginning of a new day. Instead I count myself blessed that I am able to witness the birth of every new day, that is a choice I make, instead of devoting energy towards battling a foe that acts as the reconnaissance agent of a massive horde. I have learned that it is better to study your foe(s) for any signs or weakness and when you do find one, not to let a moment pass by without any action from me. Alternatively, I re-access my armoury, evaluate my relationships/allies and utilize what I have even if it requires a little bit of tweaking.

Most battles are won through the application of wisdom rather than just sheer brawn, and so instead of engaging with insomnia every day, I have learned ways to circumvent participating in a seriously skewed game. It is no longer rocket science that the body as a dynamic system requires a minimum of 8 hours of sleep to enable it reset and be ready for the next day. In recognition of that, what do you do to a body that is thoroughly exhausted and in need of sleep? When the habits inculcated in earlier years of running around in a Ferris wheel, have now turned around to nip you in the derrière. I try to lighten the situation by explaining that the brain is such an amazing creation, and so like a commander in charge on the battle field (safe and secure in the skull); it is still strategising, processing, sending out signals and assigning tasks to a neurological system that is almost buckling beneath the onslaught of neurological disorders. And in a bid to prevent a total collapse of this structure I call my body, I must find a way of reining in this magnificent commander lest in its efficiency, it pushes the body way past its limit.

A warrior in the heat of battle is confronted with two choices; live or die, and inadvertently the choice for life must be backed by commensurate actions or else death would gladly swoop in, ever ready like the vulture circling above patiently waiting for road kill. There is always the option of taking a short cut but again the ignorant will find that short cuts are never the fastest or the safest, and so we realize that depending solely on medication usually has a predictable route. With every dose, the body responds by building a resistance to that dose with time, and so we increase the dosage or switch medication. However, just like the fool belatedly realizes the folly of his ways, more often we belatedly realize the folly of borrowing an hour or two from Sleep time in order to accommodate that last meeting, finish up that work task that could not be left in the office or just tidy up that little assignment that is tied to a deadline that is usually unfeasible. There is no reward that can be obtained from cutting off your nose to enhance the beauty of your face, because if we do not adequately cater to the needs of our bodies, someday just like the Merchant of Venice, that pound of flesh must be required as payback. Contentment is not weakness, it will always be at conflict with the inordinate ambitions that characterize today’s world but it is an inseparable companion in the pursuit of noble aspirations.

Just like the daily battle with insomnia, there is the constant need to keep that tricky balance between living healthy and taking proper care of the body. For me, that balance is key because any slight external influence will not only destroy the balance but the chronic pain associated with daily living would assume proportions frightening to even conceive. You do not have to be sick to appreciate health, and so the same scenario plays out in lives everywhere: feign wisdom and take from tomorrow to assuage today’s needs. Most of us are undeniably guilty of that crime and inevitably the pretentious wisdom we applied will someday be revealed in all its entirety as sheer folly.  For every ill-advised action we take today, there will be the corresponding consequences tomorrow and it is not foolishness to be different. Sometimes we are placed in situations that did not require any input from us but to triumph in those circumstances, we need not embark on actions that are immediately associated with thought process of a child. There has to be an acknowledgement of what is real to enable us choose what we know the finality to be.

There is still time each day for that last valiant charge, a charge that has its distinct base in an unflinching faith in a Sovereign God and Commander. A charge that is not dictated by the size of this ragtag army but rather dictated by the promise of a sure victory ahead. And so, I will emerge from the trench – besmirched with dried mud, eyes red-rimmed, joints aching and clad in what barely amounts to a decent garment. With all the air in my tired lungs, my bugle will ring out across the mountains for just one final time today, notes marking the last valiant charge. Conveying in very clear notes to the foes arrayed all around that there will be no conceding victory today, there will be no terms of surrender and even if I have to be borne on my shield; I will seize that victory that is sure. There will be no ambiguity in my proclamation, ‘dystonia, there is no victory for you today and though you rave and rant as much as you want, there is no victory today, tomorrow or for as long as the battle rages.’

A charge more valiant than yesterday’s, my colors loftily raised in victory, a determination in the cadence of marching feet, there will be a prisoner of war but rest assured that it will not be from my ranks.

For just as your ranks ripple with number, and your fancy capes adorn you, so will they disperse in defeat, heads bowed in defeat, victory snatched.

To friends and allies alike, there is yet hope renewed and though the war be far from over, our anthem booms loud and clear, there is no giving up – not today, not tomorrow for as surely as the sun rises from the East, none will fall by the way because we depend not on the strength of men.

עד שנפגשנו שוב, אולי התענוגות שלו להיות העונג שלך לעשות

Adios!