The other day mom and I went out for a stroll and decided to stop and get something to eat at one of the local restaurants for brunch. As we walked in to a packed restaurant, I noticed everyone was wearing a tiara. One lovely lady stood out as more royally than the rest, she had a larger crown and had a purple robe on- she Must be the Queen I said to myself under my breath. as we were being escorted to the only table available in the middle of the room full of tiara wearing women I suddenly felt naked and out of place without mine. I leaned over and whispered to mom, “if I had known it was wear your crown day, I would have brought mine. ” But then I remembered that a Diva does not need a tiara to feel special, she is unique and special all in her own way. Nevertheless, I was thrilled to see a room full of women who enjoyed life as much as I did and wanted to know what this event was all about? Any club where you get to go out in public and wear a tiara is just my kind of club as long as it empowers women.
Mom and I had a great time wearing our own invisible crowns sitting among all the other divas who were sipping mimosas and laughing out-loud just as we were. Of course as soon as I got home I had to find out who these women were. I discovered to my great astonishment that we had lots in common, how I had never heard of the Pulpwood Queen Book Club I could not believe.
Turns out this was a nation wide phenomena of a women’s book club having their girlfriends weekend in my own home town which only made sense since the group was founded not far from here in 2000 by Kathy Patrick who now runs “Beauty & the Book”- to depict that reading is always in style. so like me, they too believe that knowledge is not only powerful but sexy and attractive and a way for women to conquer anything they put their minds to it even PD as long as its done with distinction and style.
What I love about this group especially its founder is their willingness to hear the voice of women and help them share their message across the country while getting a nice coiffeur. You simply can’t beat that.
I then thought that all you beautiful Parkinson’s Divas out there and I should start acting more like Queens even if for a day! Not in the nasty kind of way, demanding and having everyone do everything for you while you spend all day at spa getting massages, along with manicures & pedicures. Although, this may be a very nice treat once in a while to help relieve some of the stress of living with PD or caring for someone with Parkinson’s disease. Rather learn to walk with class and confidence as a true diva/queen should to show PD who is really in control.
Queens are always
- polite and kind towards others. Sometimes hard to do especially when we are in pain. take a deep breath and count to 10.
- they enjoy and feel great pride and self-worth in helping those in need, especially other women with PD.
- learn to deal with the mundane and not so fun stuff of our disease with pizzazz.
- think like a queen – only positive thoughts- we are after all the sum of our thoughts. you have been through a lot in your life and you are still standing, so a little PD will not topple you over.
- practice your smile- makes you more beautiful and exercises those facial muscles as well.
- always look dashing- ready for any occasion- don’t forget your favorite lipstick or scarf, etc.
- finally remember that what ever set backs you may have it is only a stepping stone for greater and stronger victories.
Finally, remember it is the Queen who protects the king (and his house) in the game of chess as in real life!!
In the meantime, working on spreading the word on women’s issues in PD through a women’s book club.
The year has taken off at a fast pace and I am barely able to keep up…my goal of returning to the pool and walking has not quite panned out- already beginning to feel the weight of it all. I had a wonderful holidays with my family for the first time in almost 10 years I actually felt like celebrating. I was still basking on the joy of tradition and family when life takes an unexpected turn. I should be used to this but with this illness it seems that I become less able to cope with sudden changes and stresses leaving me a bit out of sorts.
My mom had barely left when I receive a call she was hospitalized- no chance to rest. I did a mad dash to Houston and as I approached the hospital a sense of doom, grief and Deja-vu took over me particularly as I walked into the main corridor heading up the elevators to the same floor where my dad had last been hospitalized before the bomb was dropped on our lap. My mom was now across the room my dad had last occupied and we were being taken care of by the same nice hospitalist whose demeanor saddened as well as he entered the room and saw my mom laying there. Upon discharge the attendant was not certain who the patient was since both of us were in pretty bad shape.
Of course after discharge mom could not stay home alone so back to my house we were. So it has been a comedy of errors taking turns caring for each other- the worst days were when she was extremely in need of my care and I could barely function. The day was especially trying as I had to go up and down the stairs to tend to her. By the end of the day I felt like I was crawling up the stairs. I kept reminding myself that at least I got a weeks’ worth of exercise, as per my account!
Trying to get her down from a high bed to the bathroom when both of us were having various degrees of vertigo and dizziness was something to behold. Equally difficult is attempting to sleep with her since she needs rest but the stress of it all has kicked my REM behavior into over drive. More medicines for me and a bit more for her.
Then the hardest part came telling her she has a brain tumor – although most likely benign still a “BRAIN TUMOR.” Having had my grandmother die from a similar condition does not sit well with me. I try to remain optimistic and not let her see my fear and worry. I crumble a bit more inside as I imagine not having her around, I gasp for air. Even though I try not to think about it, I wonder is this also my future – something else to look forward to?
So I do my routine mental status exam to ensure no interruption of brain function but I seem to be struggling more with word finding than she is – takes me 3 hours to recall the name of a “hummingbird.” I am exhausted!
I just pray for strength to care for her and for complete resolution of her tumor. Meantime, I keep holding on to Hope and faith and focusing all of my energy on my beautiful daughter. I say to myself “Que Sera, Sera!” As I drift to sleep with thoughts of ….sitting by the beach in Hawaii.
Do I Have the stuff mentors are made off?
First, when you are diagnosed with a chronic illness like Sacha and I have as countless other women out there who have been given similar prognosis have wondered at one time or another whether they still had something to teach? When an illness such as Parkinson’s disease first strikes invariably we feel at a loss and maybe a bit like the wind has been taken out of our sails. Some perhaps have even felt like their best years were behind and their dreams were now over so how could I imagine asking anyone to become a mentor?
Well, I want you to close your eyes and think of someone who was there for you at some point in your life when you truly needed a friend or some guidance-are you smiling now? I bet that person brings all kinds of warm fuzzy feelings. Now, you are really thinking, I REALLY don’t have the RIGHT stuff! But, when you stop to think about it that person that took time to see you through the tough times and encouraged you to grow and develop your talents was not a super human being – wonder woman with a cape and truth lasso leaping tall buildings performing heroic deeds although they might have seemed like that to you. Instead these wonderful creatures we learned to lean on, depend on, trust, and bring into the fold of our families started as mentors giving the best part of themselves in such a way that they helped us become the very best we could be. We all have unique talents and skills which could be used to build and foster others talents. After my diagnosis, I thought I would never be able to work with Parkinson’s patients again and ten years later I am more deeply involved in the lives of so many people with PD throughout the world in a level that I never would have thought possible. Because I was fortunate to have many great female role models, one of whom continues to play a vital role in my life even after the change in career and onset of PD that I feel compelled to emulate her (Dr. Mya Schiess) as a great woman healer and mentor.
Remember, the best way to succeed in life and be truly happy is to do something meaningful for another human being- this is a biblical principle.
When you become involved in someone else’s well- being you suddenly begin to heal as well. Give it a shot. Don’t worry about being qualified. No one is ever truly qualified until they begin the journey. All it takes is a genuine desire to help others.
Still not certain?
Can you answer any of the following?
- I have fallen, failed and been hurt
- I have endured disappointments
- I want a better world for my children
- I too live with a chronic illness and feel a need to help those with similar plight
If you answered YES to any of these you have the STUFF to be a Mentor…
What is the role of a Mentor?
Now, that you have seen how truly gifted you are and how you may begin to feel better about your lot in life through mentoring, you are still wondering if you have what it takes. After all, you don’t have much energy these days and sometimes you feel like all you do is go to the doctor or take care of others already being a mom, a wife, and a million other tittles imposed by those around you.
I would suggest start with practical things that would benefit someone with your same plight or interests. For instance, if you have another woman you are trying to help (can be someone older or younger) may offer her a ride to the store or doctor if she needs it and your schedule allows it (you are already going in that direction or to the same place). This way you are being of assistance to another and not costing you much time or effort. Yet, the sentiment is extraordinarily regarded. So be a servant.
Sometimes, what we really need is for someone to hear us. This is especially truly when we are first given bad news. Use the feelings that you felt and allow yourself to empathize and sympathize for some else in those same shoes. We don’t really expect anyone to solve all of our problems or cure our illness, but a shoulder to cry on is a much appreciated and highly valued thing. This simple act of listening and encouraging someone is typically the first step to a long meaningful relationship returning confidence and worth to the person in need. You can do this over the phone or skype but much better and more effective in person. Be a listener.
At other times, it may be required that you help someone make important life decisions based on your experience and their abilities – a great deal of finesse is required as well as love for the person you are helping for you will not be merely dispensing advice but actual counsel with purpose of making their lives better. A wise counselor always listens more than she talks. Use open ended questions. Be a Counselor.
Finally, you have been where your friend has not and know the perils and victories. Lead the path with love allowing her to make her own decisions. You cannot impose or insist that they do things your way to arrive at the same destination. They must try out things for themselves feeling what is right for them so they can be successful. Learning to find their own unique voice, talent or skill to share with the world that will make them shine just as you shine despite your illness. Sacha’s talent is art, mine is still teaching. Be a Guide.
AS we begin to discover what makes us different in the world of PD from our male counterparts, we should also begin to build up one another as women encouraging, lifting, educating, so that the women with PD that come behind us can be the next leaders, counselors, advocates, guides, researchers and friends for the next generation of women with PD who may even unlock the key to the CURE!
Remember ” A woman is like a tea bag- you never know how STRONG she is until she gets in hot water.” Eleanor Roosevelt
all rights reserved by Maria De Leon
Happy new year to all my friends, family, and loved ones! I would like to thank all of you first of all for choosing to walk with me in this PD journey through life. Having wonderful friends such as you by my side is what life is all about. As we commence a brand new year full of possibilities in which every page is waiting to be written, I would like to leave you with a few thoughts to make your journey with Parkinson’s, or whatever chronic illness, or struggle you are facing in life a much richer and fuller experience. My learning after nearly a half of century of living can be summed up in five parts.
5 things I want us to keep in mind as we make our mark through the New Year.
- Stand still
- Have Faith
- Give back
These things I have observed to be the fundamental elements for a life worth living. Although a few skeptics along the road have question my positive attitude and optimism in life as well as my experience with Parkinson’s. A few people especially women have told me that I must have led such a ‘charmed’ and ‘happy’ life to be so full of hope and optimism. As I nearly chocked on the caramel I was chewing on, I thought “charming” and lucky was not a word I would have ever used to describe my life. For dear readers, I have dealt with my share of pain and disappointments and seen the ugly side of human nature yet I choose to believe that everyone has something good in them and everyone deserves a second chance.
First, I was born with a severe birth defect which according to the doctors I was NEVER going to walk so I spent the first year of my life in all kinds of casts and contraptions. Yet thanks to the love of my mom, grandfather and the grace of God, the right doctor was found to correct my problem. Ever since I started walking I have not stop and don’t intent this PD to stop me either!
I also have had multiple cancers on top of the early onset Parkinson’s diagnosis which was an irony in itself. I had a hard pregnancy making me unable to bear more than one child, yet the joy of being a mom of that one precious child has made up for all the pain. I lost several loved ones within a two year span in which the two most precious beings in my life were included. I tended to thousands of Parkinson’s patients through the years many of whom I watch die and have wept at their bed sides along with their families. I wept even harder at my dad’s bedside when he was suddenly taken ill with cancer.
Even though these are but a few of the struggles I have faced in my life, they serve witness to the fact that like you I too have had a life full of challenges of ups and downs. Sometimes life led me to dark unfamiliar places. I have struggled physically and emotionally with gut wrenching burdens which have stretched me to my limits and then pushed me further still. But, through it all I have learned that without these low valleys and dark places, I would not have found my strength, courage, and faith nor enjoyed the peaks and mountain tops as much. Each and every one of the experiences in my life has served to shape me into the woman I am today who is able to write to you and share her experiences with you to help guide your path with this chronic illness and give you hope and a ray of light for the dark days ahead.
As I recall the words of that one woman who sneered at me as she was perusing my book looking at me sideways exclaiming “what gives you the authority to write about PD?” Simply put: MY ENTIRE LIFE JOURNEY with PD! So I am extremely glad I had the courage, thanks to some of those people who have gone from my life too soon, to write “Parkinson’s Diva ” Perhaps someone will find laughter and love once more in their life just as I have despite having and living with Parkinson’s disease. If only one person has felt better because of my book, I have achieved my goal. This lady unfortunately was only seeing in me the end product …a woman who has finally learned to accept herself just as she is flaws and all; who has learned patience thanks to PD, when you move like molasses you have no other choice!
Dear friends, I hope this year you work on being happy with yourself first before making anyone one else happy. This starts with being able to stand alone in solitude and fine tune your hearing to that small still voice inside of you, for mine has never let me down.
Learn to listen– I often quiet myself by first listening to my own breathing and heart beat until they are in sink and quiet. Take time to stand still at least once a day and replenish your thoughts and your energy, Then learn to listen to everything around you like the laughter of your kids, the rustle of the leaves, the whistle of the wind, the sound of the waves crashing on the beach, the silence after the snow has fallen. Particularly listen to other women. I have women friends from all walks of life and all ages because everyone has a story to tell that is powerful and unique and every one of these precious women has accomplished many feats most by the time they reach early adulthood. Make sure you absorb some of their goodness, soak in their wisdom for it is absolutely priceless. I had the absolute pleasure and privilege this past year of meeting and working with some of the most wonderful women both through the Christian women’s Corp & the Women & PD Initiative. Both had so much knowledge and wisdom to impart it was amazing.
Learn from these women, from your parents, your friends, and from anyone you come in contact with in your journey this year, for they too have a story and a lesson to share with you if you listen. Learn especially from those who love you and particularly from those who don’t. Learn to walk in someone else’s shoes as well as to see life through someone else’s eyes. Learn that in order to make a difference you must first take a chance.
Most things that were invented had to be thought up by someone who had to believe in his or her dreams even though no one else could see the same vision; plus think about it they had to have some kind of necessity, be in a low point in their life or be in the dark otherwise there would be no need to grow or change or invent anything. So with this comes Faith that things will work out for the best- that the darkness serves a purpose to hone our night vision. With faith comes hope for a better, happier tomorrow so don’t lose faith!
Finally you have to be willing to give back to others. Funny thing is that in order to grow and develop and actually enjoy life we must stop thinking about ourselves and actually think about others needs first. So this year I want you guys to renew your passions or find new passions, redefine your world, expand your horizons dream bigger dreams, have higher aspirations, broaden your visions, and stand up for something worth fighting for like helping those less fortune than you in your PD community.
Provide caregivers a helping hand, fight in behalf of the kids with PD mom’s, aid the moms living with PD. Go ahead and confront the things that scare you such as living with a chronic illness and embrace it to the fullest. Make a difference in someone’s life, you can do this by joining me in being part of Women & PD initiative as a mentor, teacher, counselor, and friend. If you follow these guidelines throughout the year, you will discover as I have that by getting involved and truly listening to others and yourself you will change your own life. You will also be replacing laughter for the many heartaches as I have done many of which nearly broke me. However, now I have joys and rainbows where storms once were punctuated by many friends smiling at me along the way.
This 2016, I admonish you all to leave your comfort zone and take a leap of faith by doing that which scares you…interestingly once upon a time I was terrified of public speaking until I was forced to give a commencement speech in front of 1000 plus individuals. Now I do public speaking for a living. Go ahead I challenge you to Join me in me in daring to be yourself and a true “diva” or “divo” (one that does extraordinary things with their natural talents) living a life with Parkinson’s disease worth living.