“Where there is no vision people will perish.” Proverbs 29:18
This year as I renew my strength and hope in God, I ponder on all the good and bad things that happened last year. Despite the losses and tribulations. I am grateful for all the lessons learned, new friends and adventures had along the way.
After a few months of down time following a string of doctors’ visits, myriad of new tests along with new lupus (SLE) diagnosis to compliment my Parkinson’s (which was beginning to feel lonely), it is time to start a new chapter in my life. As all the pages of the New Year remain blank, I think about developing a new vision that will provide me with endless stories, adventures, trials and triumphs that will comprise a new chapter. This process will be one more stepping stone in achieving a new dream. As I sit quietly contemplating of what my direction should be next waiting on God to lead the way I think about the importance of having a dream for all us especially for those of us who live with chronic illnesses in our lives.
The life lessons involved in making a dream or goal come true are the same lessons we must learn as patients.
When we develop a vision the same tests required to bring that dream into fruition are the same steps required to overcome living with a chronic illness. If you can find a dream and make it come true you can essentially do anything!
But first one must have a dream in order to make it come true.
Once my dream was to become a neurologist. Having achieved that dream has giving me the strength to keep fighting in the midst of many physical and emotional new obstacles. I discovered that a vision is what gives us direction, creativity and resilience.
Without it we run the risk of becoming passive, aimless, and vulnerable to giving up.
Thus, it is important for all of us to have a vision. Is not always clear what our goal should be what our next step should be or what direction to take. It took me a couple of years after my Parkinson’s diagnosis to find a clear new purpose in my life- keep advocating for my patients and all PD around the globe.
Before I could do this like now, I must first wait to have a new goal (vision). This requires patience, discipline and above all the ability to overcome challenges (for us this means often times overcoming physical and emotional limitations).
Is not easy to go after a vision.
I am sure there is something you worked hard to get. Remember the thrill of achievement and accomplishment? I believe you can do it again if you just set your mind to it.
Now as we stand on the horizon of a new unexplored chore, we need to be mindful of passing the following 4 tests that will help us overcome any obstacles this illness or any other curve life could throw our way.
1. Faith Test …we must be strong and believe in a better tomorrow even when everyone around us says there is no way you can make it. I am testament of being relentlessness …even when all the doctors prognosis have been grim I am still standing here by grace of God and still BELIEVE in a cure.
2. Patience Test …I have learned that in life like in science nothing happens overnight. We must learn to wait on God’s time not our own. Yet, having said this many great strides in neurology have been made in the right direction to making peoples life’s better.
3. Strength Test…Sometimes we may find ourselves discouraged alone frightened devoid of family and friends with no support group. We have all felt this way at one point or another. This is the time to remain strong in your convictions. Think about how much you have overcome and how far you have traveled. You can certainly do it again if you don’t give room to negative thought. My motto and yours should be-This too shall pass. I have been through many difficult times which I did not think I could or would survive. Surely, I cried but I did not die. Once the tears stopped the sun came out again and I learned to be happy once more. I have learned that even when one dream died there are many more inside of me and that my life has so many facets, it is much more than any one dream or any one illness I might have.
4. Focus Test…We can easily be derailed and deterred if we focus inward on us instead of outwards towards helping others. If we concentrate on helping others and keep moving forward even at a crawls pace we can climb a mountain. It all begins with a single positive thought- “I can & I will”
So today, I am encouraging everyone to follow these steps. In the meantime keep your spirit up and your gifts and talents sharpened so when the times comes to reach your vision you will not be defined by any illness.
Happy New Year to all my friends, families and followers!
All rights reserved By Maria L. De Leon
“In all things give thanks…” 1 Thessalonians 5:18
As the years go by, I find that it is the small things in life that truly matter. It is these things that make a life worth living and worth remembering – so this thanksgiving season I like to express my gratitude for the small things that punctuate my life in the midst of my ongoing ever complex not one but two chronic illnesses. Having now been diagnosed with lupus as well!
This year has been a year of many important milestones- celebrating 20th anniversary, turning 50, getting the opportunity to be a ‘starlet’ for a week, reuniting with long lost friends, honored to give first all women with Parkinson’s conference in Indiana, had the honor to be part of an avant-garde weekend retreat for Parkinson’s patients and their caregivers in South Dakota with nearly a 100 in attendance, being part of a pilot program to help young women to grow spiritually, learn life skills, and be empowered in the midst of their circumstances in order to thrive as successful adults turning into tomorrow’s fearless mothers, wives, friends, professionals and leaders. Finally, I also had the privilege of having my ‘parkinsonsdiva’ blog be recognized twice as one of the BEST! In the PD community (This of course could not happen without all you wonderful people (women) who take time to read it and make it one of the best! thank you!)
I was touched by one of the most beautiful common experiences which took an unexpected twist for a memorable and meaningful events of my life just when I needed hope and encouragement the most.
We all know that most of our lives are punctuated by peaks and valleys and although we wish we could go from peak to peak there is still something beautiful and comforting in the valleys. The valleys in biblical times is where one was most certain to find God and healing could commence from inside out. But aside from finding salvation in the least likely of places, we also have signs that continue to inspire us and gives us hope in our daily walks. When my dad was terminally ill, I witnessed the most magnificent double rainbow as I was driving home full of tears on my way back from the hospital and upon seeing such spectacular view I felt at peace and knew everything was going to be okay.
Four years later, about the same time my dad started his downward decline I began to have serious medical issues which have been taking me away to some extent from you and the things I love. Yet, on my way back from a very long and arduous trip to the hospital and a slew of specialist as I dosed off while my mom drove, I saw the edge of a rainbow. I wondered out loud if anyone had ever seen the end of a rainbow- after all they are said to be full circles which I had privilege of seeing once before in the Las Vegas. Perhaps there instead of a pot of gold I could find a greater treasure like health once more.
Suddenly, I began to see one rainbow after another all sizes and brilliance and then we came to the end of a rainbow it merged right into the spot where our car was standing at the light but if you looked up it seem to sprout out of us from inside the car. I sat up and marveled at the phenomenon but in the next 40 minutes of our journey this occurrence took place at least 4 more times.-lifting my sadness, and strengthening my weakening resolve to keep on fighting for the people and the things I love most. Just to let me know that these signs from heaven were not mere coincidences that he still was in control of my live and my well-being and that my faith in God had been duly noted for once we arrived to a sunny home leaving rain behind- when I stepped out once more as the sun was beginning to set amidst a purplish sky there it was once more a splendid rainbow across the sky.
You may say, how can I give thanks living with PD? Or how can I find joy in my present circumstances? Believe me, I understand your trepidation. Is not easy to feat to face our fears but you can do it because you are not alone. We (especially me) are here to share the rainbows with you to help find your inner peace and conquer the valleys of loneliness, illness, frustration, and hopelessness. As I have learned to conquer my fears of living life with a progressive debilitating illness and face head on an uncertain future by believing in God you too can find harmony and give thanks in the midst of adversity.
Although, there have been many losses I have also experienced many great things this year when is all added up the pluses will definitely outweigh the negatives. I continue to be grateful for my health however failing it maybe at times, my family, friends and the whole Parkinson’s community who has invited me into their homes.
All rights reserved by Maria De Leon MD
“We are the champions of the world. We will keep on fighting till the end…” (Queen)
Over the last few weeks, as I have tried to make sense of my life in light of my seemingly endless medical problem list; I have had plenty of time for introspection as I lingered around the house in my pajamas watching movies when not in pain, nauseated, or having fever and chills. My favorite movie genre as of late are those based on real life. In my moments of feeling better and not having to see a doctor or get yet another test done to figure the conundrum that is my illness, it occurred to me that in life the most beautiful things usually come out of the darkest and most painful times our life’s.
Throughout history we are reminded time and time again that the things that inspire and endure the test of time are those that arise from the ashes of near annihilation.
I love the story of the thorn bird legend, although believed to be purely mythical, is the perfect embodiment of a notion that greatness can only be achieved by walking through fire or standing in the lion’s den. The Celtic legend, upon which the story is supposedly based on, says that there lives a “bird that sings more sweetly than any other on earth as he dies that even God in heaven stands still and smiles.” While dying he rises above the agony of his pain caused by being impaled on the sharpest thorn. Such examples of greatness can only emerge out of the fiery ashes. The outcome of such struggles of the soul, if we are courageous enough to stand and fight, typically bring forth redemption, self-love, understanding, and compassion which permeates throughout in the same fashion in which the light casts its warmth upon a dark cold room when the window is open to let sunshine in. A small light can illuminate even the darkest of rooms but a dark room can never overpower even the faintest of lights. So keep on fighting even if you feel like you don’t have the stamina to go on….
The greatest feats and gifts to mankind have been borne out of despair, hopelessness, uncertainty and loneliness.
Beethoven composed his 9th symphony “Ode to Joy” when he was totally deaf. Van Gogh painted “Starry Night” in the midst of a mental asylum cell, the apostle Paul wrote his most powerful letters while imprisoned and our salvation was bought at the ultimate price of pain and agony on a rugged cross.
What will my legacy be to this world and my children be? I wonder. Will my life be an example of courage and triumph? What will yours be? Will you wallow in your pain and stay a victim? or will you like many before us have the courage to conquer and not be defeated by our present circumstances?
As for me: through the grace of God I have discovered courage in the midst of my never-ending battles with physical illness along with a renewed sense of purpose and hope.
So I sing to myself… “What a wonderful world!”
Will you sing too with a new sense of purpose?
I love to hear your stories …would you share with me and others so we can all gain courage and strength by knowing we have been able to overcome thus far.
Many Blessings to all on this beautiful day.
All rights reserved by Maria de Leon
Before Parkinson’s (any chronic illness, we all “lived like water flowing down a hill..going in a single direction until we splashed” against a rock which has forced us to find a new path.
A Relationship by definition is the way two or more people are connected but more importantly how they behave towards one another. As long we live in this world, we will always have relationships some of which are closer and more intimate than others. These latter ones are the ones that become more deeply impacted and can be totally uprooted by our behavior, the choices we make and the things that impact our lives.
We know that no two people are ever alike and the fashion in which we deal with stressful situations is no exception.
This is the time when boundaries will be pushed to the limit.
So it should not be a big surprise that when major life stresses occur in our life’s any and all relationships will be put to the test. The hardest hit are always the ones closest to us like our immediate family and close friends.
I too have lost relationships of decades because the person I thought would understand my shortcomings would understand. Although, the losses hurt and the relationship mourned I had to come to terms that my health was more important.
How do we keep our most valued relationships from becoming part of an UN-salvageable shipwreck?
Setting appropriate boundaries.
We can’t expect to have good relationships or understanding of our needs; much less be able to tell our friends and family what we like to get from them to help us continue being the friend, partner, lover, sister, and mother. Although, these will have to undergo some type of modifications to allow for life’s changes in both parties.
Discuss gently with the people you love, the specific issues you have and then try to find ways to get around these issues. For instance, I tell my friends and family that in order to protect my limited energy/time that may be needed for a higher priority, I reserve the right to cancel a commitment especially if I am not well.
Sometimes however despite our best efforts casualties will occur and we must learn to let go.
When we set boundaries saying what we will and will not accept in our lives it forces the other person to evaluate their own boundaries.
How you handle these strains depends on the intimacy of relationship and how valuable that friendship etc. Some relationships can’t be dissolve such as familial ties but can become estranged with lack of communication.
I am sure all of us have experienced strained relationships during our lives particularly after receiving a Parkinson’s diagnosis. At times is hard even for us to accept our own illness much less for others who are mere spectators to fully understand our condition as outsiders.
For instance, my close friends know that my life changes day to day and so in making social plans we have learned to give each other leeway in changing plans last minutes as long as we both get the same opportunity. Equally we are all open to spontaneous planning to gather. In my case, people that have trouble accommodating to this my new life and insist on making plans way in advance and or in getting upset if things change last minute have been for the most part excluded from my social circle. Similarly because of my ups and downs and loss of voice along with all my other demands, I have adopted communicating with my special friends and family members for the most part via text. This way we are constantly in communication. However, there have been those that insisted and got upset if I was not able to speak directly with them at the time they need me without understanding my own issues and did not want to compromise as to how and when we spoke. These types of demanding behavior even from long term friendships have resulted in breakage of a friendship. But like a bad hair do you must simply accept it and know that you will get another chance to try something new and perhaps even better.
Because we don’t live in a vacuum all of our actions have consequences. You must speak up and let the person know how you feel and is up to that person to respond positively or ignore your circumstances. If that person makes no effort in meeting you half way perhaps is time to rethink that relationship.
Develop healthy boundaries say YES to good things and NO to bad things! Speak your mind gently without feeling guilty but remember that those around you have the SAME right to decide what they deem BEST for them!
all rights reserved by Maria De Leon MD
Have you ever heard your loved ones complain or say that when you are up and about in public you seem different? They may describe you as lively, happy, and energized but moving better even. However, they gasp, as my husband often does, asking why can’t we simply have that kind of motivation when we are at home rather than just sit around like bumps on a log?
Not long ago when my family and I traveled to Hawaii for vacation my husband finally put a term to this positive effect of well-being that ensues when confronted with something utterly delightful to us. The ‘Kamehameha effect’ as my husband lovingly has coined it, is the end result of a natural boost of dopamine in our brain’s when confronted with pleasurable, enjoyable things. After hours of touring the island, there I was barely able to walk, shuffling, feeling stiff all over particularly in my lower back which was beginning to hurt down to my feet. I was choking on my own saliva and was beginning to lose my voice. When suddenly we came upon the current Supreme Court of Hawaii – also known as Aliiolani Hale building which has in its courtyard a statue of King Kamehameha I which is facing Lolani Palace. At the site of this grand structure I became so ecstatic since it happens to be the headquarters of Commander Garret and his Hawaii 5-0 unit. Seems like within minutes, I was no longer stiff, shuffling or choking. Husband was astonished at the effect calling it the ‘Kamehameha effect’ and still teases me about this every chance he gets.
He insists that this effect is purely is psychological and wishes I could summon it at will. However, although it has a psychological component is not that easy. It is instead a chemical reaction that takes place in our brains once ignited by exterior forces. The ‘Kamehameha effect’ is one that can be seen even in groups of Parkinson’s people at the same time if united by same outside force as was the case in New Orleans when the Saints won the Super bowl in 2010. According to Dr. Georgia Lea, a neurologists and assistant Neurology professor at the Oschsner Institute in NOLA, that during the super bowl championship all her PD patients who were fans of the SAINT’s suddenly were cured for hours to days!
This is the ‘Kamehameha effect’ at its core – ignite our own happy endogenous neurochemicals to bring forth dramatic improvement in our PD symptoms.
Although, this effect is not a switch which can be turned ‘on’ and ‘off’ at will, there are things we can do to promote the repeated occurrence of this phenomena by doing things which brings us joy, passion, love, gratitude and satisfaction. As one of my favorite literary authors Gabriel Garcia Marquez would say; “there is no medicine to cure what happiness cannot.”
Go ahead find your passion and unleash the ‘Kamehameha effect’
all rights reserved by Maria De Leon