Reflections: By Maria De Leon

He who learns must suffer and Even in our sleep pain which cannot forget…falls drop by drop upon the heart until in our own despair against our will comes wisdom through …the awful (awesome) grace of God” -Aeschylus

As another year has whizzed on by, I am beginning to reflect on the year’s events particularly as so many of my Parkinson’s patients have gone to be with the Lord this year.

First, I am eternally grateful I had the opportunity to be part of the life of so many wonderful individuals and families who took me into their homes even after I stopped practicing. Particularly grateful I am to have shared this life’s journey with many Parkinson’s women who were also pillars in my community. Their faith and struggles with this chronic illness has served as a living testament to the grace of God in theirs, as well as in my life.

One such lovely lady, whom I had the pleasure of caring for; once asked her mother as a child if “God (Jesus) could come next year,” yes her mother replied. “Mom, could he come next month?” Yes, sweet child. “Could he come tomorrow? But, of course he can sweet girl. “Could he come today?” Yes, sweet child. “Then, mom could you hurry up and do my hair.”

As I learned of this story recently from the family member of my dear precious patient’s love for God, I was reminded of how that kind of love and enthusiasm is what this season is about. Even when she got PD later on in life she was always prepared and thankful sharing her love with others.

We should all strive to have such a spirit of gratitude every day of our lives not just during special seasons. I know it is hard to feel grateful or happy when tragedy strikes or when life does not go according to plan. But, one way to help us remember that adversities are not just a part of life but sometimes are meant to bring out the good in us. If we always went about our lives without a care or struggle, we would take things for granted as many of us did before we became ill. Imagine spending your whole life as an athlete training for a competition (a Race) that will never take place. Not only is it disheartening but most likely many of us would start slacking off. The biggest travesty would be to never know if we really had what it took to finish the goal.

Sometimes in order to bring the best to the surface we have to be sifted like wheat or dumped in hot water as a tea bag in order to reveal its (our) strength as Eleanor Roosevelt would say. This means that sometimes we must deal with adversity in our life’s which sometimes comes in the form of a chronic illness like Parkinson’s.

My patients have taught me that you have to take the good with the bad and make the best of it. Some of the saddest times in my life were also the most fulfilling and fruitful. For instance, when my father became ill with cancer and was ravaged by it, I spent countless hours agonizing over his care, his health, and coming to grip with the idea of losing him yet at same time I completed my book –Parkinson’s Diva – partially inspired by the loss of my dad and grandparents.

Looking back on my life, I find that almost every major decision has been guided by God. Even when I first was diagnosed with my illness and I was having trouble doing basic things for myself including driving, He was there looking out for me sending me my dear friend to help out. I was unable to get around even in my small community because I was so sleepy with the medications (Requip, Mirapex, and Sinemet) that I had become my own worst nightmare. In my mind I was checking yes to every box in the Epworth sleepiness scale – even chuckled in disbelief as I fell asleep at stop light and was startled by a loud honk behind me, once when I attempted to go down the street to the shopping center on my own. All I needed to complete the picture of narcoleptic was to fall asleep while eating and flop my head into my plate. Although, I was not far from this state; yet something inside propelled me to apply for a position as PPAC (People Parkinson’s Advisory Committee) for PDF (Parkinson’s Disease Foundation).

I was not sure what I would do if I got accepted since I could not go very far on my own or stay awake for more than an hour at a time for that matter. However, I knew it was in God’s hands. Sometimes in life we have to learn to navigate through life with faith and realize that our strength and our refuge come from above. I have had my share of disappointments, frustrations, and setbacks dealing with Parkinson’s among other illnesses; yet all I have to do is remember how far I have come, how despite the doctor’s predictions, I am still here when I was given 6 months to live 8 years ago.women

Thus, this year I am grateful for all the wonderful people I have met along the way, the stories we have shared, the battle wounds we have bound together. Plus, having shared an unexpected journey with you my readers has given me not only tremendous joy and happiness but also afforded me greater insight and compassion to the needs of those who like me are living with this terrible disease. As a neurologist, I have gained a wider perspective in life as well-that no matter how bad we think we have it, there are always worst illnesses to have and maladies to endure.

So in the end, as any doctor would tell you, in order to properly bind a wound a patient must first allow himself to stay(sit) still and allow someone else to be in control to fix the brokenness of a bone, etc.

As the year draws near, I have security and hope knowing that God has been with me in the darkest as well as in the brightest days. He alone can heal and can lift us up when we feel we have no more strength to go.

Perhaps it would be wise to start the holiday season and New Year with the thought that- life is simply too short and precious to live miserable, unhappy, and complaining about something we have no control of…

Remember, it is the natural order of things to change- there will always be losses and gains.

However, because we do have a say on how we choose to live our lives in the midst of adversity and Parkinson’s disease lets try to focus on the gains and not the losses. I choose wisdom that comes only from above ( after despair and sorrow have inundated our hearts) plus a bit of sparkle and bling. What will you choose today?

Never let your inner beauty die out. You are more than your disease.

(my Greek goddess sandals)

my-foot

As another author (Martha Beck), much more famous than I, would say, “have the courage to open up to life..” especially as we are about to start a New Year.

 

Happy Holidays from my house to yours!

 

 

Seasons of Support! By Maria De Leon

take a deep breath and trust in God.:  As the holidays draw near, I am reminded of all of those of us who are grieving for the loss of a spouse, parent, friend or loved one. All loss whether physical or emotional can take a toll on those of us who are still grieving which can heighten our stress, depression and isolation if we are not careful. As the season for family and close friendships come together to celebrate the absence of a love done no longer present in mind, spirit or body can be quite troubling for many of us.

A couple of days ago, I solemnly celebrated  and mourned the passing of my father a year ago. Although, I have for the most part accustomed my self to the notion that he is no longer present in this world, as we prepare for Thanksgiving celebration, I can’t help but feel a sudden pull at my heart.

Thus, I began to wonder about my many friends and readers who have recently lost a loved one due to Parkinson’s disease or another illness if the mention of the loved one still causes emotional or spiritual pain leading to anxiety and stress? For those of us whose loved ones are still alive but no longer able to interact or be the person they once were due to this illness, we too maybe in morning feeling the same heartaches, wondering when will this be over? The hurt, the pain, the anxiety, sleepless nights, will we ever feel whole again? be able to return to a routine?

While many people commence to cope and slowly return to normal after 6 to 9 months, about 2 years after someone passes away most individuals begin to feel life anew and feel “normal.” Yet, there is no set time for getting over the grief of bereavement particularly if that person is still living and continuing to decline.

Holidays, birthdays or anniversaries can remain a source of pain accompanied by bittersweet memories that may last a long time even a life time. For me having lost someone I loved very much 7 years ago, although the initial pain is gone holidays always remind me of their absence from my life.

Before healing can commence, we must allow ourselves to properly grieve and not hold  it in. this may be a reason why so many people still struggle with the grief even years later making life much more difficult, painful, and devoid of peace.

My suggestions in dealing with any type of loss:

Be gentle with yourself as you journey through the process of grieving.

  • Give yourself time– time DOES heal all wounds but you must be able to let it go at some point and walk away from the pain. Think that either they are in a better place, no longer suffering from illness or that this too shall pass for nothing in this world last forever! Concentrate on making that one person’s life happy and meaningful and everything else will come into place.
  • Feeling– don’t be afraid to let it all out, don’t be taken back by strong emotions. I thought that being a doctor and having been there through the entire ordeal of my father’s cancer I was ready to let go when he passed and I was completely overcome with emotion after his passing. I could not believe the wave of strong emotions that flooded my heart and brain so I cried and grieved till it was time to let go. now even though I miss him truly, I am no longer grieving for his loss- I know he is in a much better place. Research actually shows that tears help restore the chemical balance in your brain, so don’t be afraid to let the water flow it will only serve to restore your health. if you are one of those people that have trouble letting the tears go sometimes a good sad movie or book is just what the doctor order for catharsis. Feeling sad is much better to the alternative being numb to emotions.
  • Talk therapy– find a strong friend who will stand by you in silence as you release all of your fears, frustration and grief. a good shoulder to cry on is essential for healthy grieving.
  • Art Therapy– sometimes no matter how much we try to cry or watch all the sad movies, we still have a hard time copping and letting go of our anger, sadness, disappointment, and guilt. one way I have found many people cope with loss whether physical, emotional or spiritual is through art therapy. sometimes writing the feelings down in a poem, other times through painting -exposing our feelings on canvas – or through mask making, as my friend Wilma Cordova professor at SFA university School of Social Work recommends.
  • Take care of yourself– this means eating right, sleeping well, exercising- believe it or not when we grieve the reason we tend to sleep so much is because that kind of sadness requires a lot of energy to be able to overcome the pain the brain is experiencing. Consider getting massages and allowing others to hug you or touch you, this releases oxytocin one of the essential chemicals in the body besides dopamine, serotonin, and endorphins which maintain healthy brain equilibrium.
  • Finally find a good network of support– to help navigate the ups and downs of the days ahead, one who will encourage your well being, will listen and even accompany you to art therapy and above all make you laugh! After all laughter is truly the BEST MEDICINE!

If you are a caregiver or friend of one – remember these words:

The After Loss Credo~ B. H. LesStrang

“…Don’t worry if you think I am getting better

And then suddenly I seem to slip backward.

Grief makes me behave this way at times.

And Please, don’t tell me you ‘know how I feel’

Or that ‘is time for me to go on with my life’

(I am already saying this to myself

what I need now [most] is time to grieve, to recover & a friend..”  

For more information on grief & loss contact: http://www.pdf.org

community social workers/ your physician ASAP- if still grieving especially if not able to sleep, having chest pain (or tightness), headaches, fatigue, & breathlessness.