Posted in Autobiography, Caregiving, coping with chronic illness, coping with life threatening illness, Life Motivation, living with chronic illness, overcoming adversity

Arthur Ashe’s Life Principle(s)

I was listening to the audio of Andy Andrews book, Mastering the Seven Decisions. It is the follow-up to his monumental book The Traveler’s Gift. Andrews talks about the seven decisions not as suggestions but as principles. He makes a point of stating their principles because principles are universal. They aren’t specific to any one person but to everyone. His seven decisions (or principles) were derived from reading the autobiographies/biographies/memoirs or more than two hundred people. He found that the challenges these people faced and the tools and strategies to overcome their challenges could be reduced to seven decisions.

The idea that principles are universal makes me think about how important it is to find these gems. It’s one of those things I’m on the lookout for and when I hear it, read it, or experience it, I grab hold tightly and see how to make the principle (a universal strategy) more conscious in my life.

I was listening to the acceptance speech by Michael Sam, the first openly gay pro football player drafted to the St. Louis Rams, who received the Courage Award at the ESPYS. In his speech Sam referred to another great athlete Arthur Ashe. He shared Ashe’s philosophy of, “Start where you are. Use what you have. Do what you can.” This simple three-part statement took me by surprise. How could something so simple, so true, so applicable to everyone’s life not be needlepointed on every cushion in the land?

The first part of the principle “start where you are”, can it get any simpler. It requires us to make a personal assessment of what’s going on in our lives, in the now! It doesn’t matter how things used to be, but what is your current reality. This is very important for all of us who have experienced any type of life interruption such as an illness, divorce, bankruptcy, or other challenge. Where are you today and on the map of life that’s where you put the red dot that says, “You are here!”

The second part of the life principle, “Use what you have” is just practical. There are no imaginary resources. If you need more tools in your life toolbox seek them out. You can augment “what you have” by taking a class, attending a support group, going to therapy, or seeking counsel of a spiritual advisor.

The final part of the principle’s trilogy, “Do what you can” requires you to take action. If you’re facing an illness how will you support your physical, emotional, and spiritual needs? If you’re looking for love you have to get out in the world; UPS doesn’t deliver life partners to your door. If you’re having a spiritual crisis finding support, going on retreat, setting out on a pilgrimage, or attending a service are the things you’re able to do to change the situation.

We know that Arthur Ashe came to these principles based on a long career as a champion tennis player as well as someone who eventually died of AIDS. The challenges in his life were eased because he lived by these principles. He learned how to make the necessary accommodations to live a full life.

What will you do today with Ashe’s three-fold principle?

Facing some form of life interruption?  Looking for education, support, and inspiration?  Visit http://www.survivingstrong.com

Want to implement Ashe’s life principles through art?  Visit http://www.timetolivecreatively.com

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, overcoming adversity

A Dream and a Nightmare Rolled Into One

What would you do if you worked for something your whole life and your dreams come to an end with no warning? I know it has happened to millions who have been diagnosed with a chronic or life-threatening illness, but for one young man, the grace and honor bestowed upon him was amazing.

Isaiah Austin is a young man who was playing basketball for Baylor University. He had everything going his way and was preparing for his big moment when he’d be drafted to an NBA team. Protocol requires each potential draft pick have a physical before being drafted. Teams wouldn’t want to sign a player who would potentially be injured or sick costing them big money. It’s a business decision that obviously, in this case, was sad but potentially life saving.

Anyone diagnosed with a chronic or life-threatening illness has heard the doctor say the famous line, “I’m sorry to tell you, but….”. Austin was no different. He received word that he was diagnosed with Marfan Syndrome. Marfan Syndome is a potentially life-threatening illness impacting the body’s connective tissue and often resulting in heart problems such as aortic embolisms.

Everything this young man had worked for came crashing down. In an amazing move on the part of the NBA, they did a ceremonial draft making Austin’s dreams come true. In addition, Austin will be a spokesperson for the Marfan Syndrome Foundation. A t-shirt was designed and available with a very important message, “Dream Again”. I hope Austin is able to embody that message as he makes plans for his future.

Talk about being blindsided, I was working as a case manager for an HIV/AIDS program and a young mother of two came to the office. She was a single mother and had applied for life insurance to take care of her daughters should anything happen to her. What she didn’t expect was to receive a letter from the insurance company telling her she was no insurable because she was HIV+.

This post isn’t about making lemonade out of lemons. It’s about taking the biggest shock of one’s life and re-evaluating your life and the mark you will make on the world. It’s a life defining moment. It’s the moment we all have in our lives when we see what we’re made of and how our purpose will be fulfilled.

I certainly hope that each and every person out there doesn’t come to that realization without being diagnosed with a chronic or life-threatening illness. However, if it does, I hope you will take the time you need to grieve, retreat, and then attack your life with a renewed sense of possibility. I hope you don’t define yourself by your illness, but by your inner strength and that you summon that strength to guide you in your actions and decisions.

If you’ve been diagnosed with a chronic or life-threatening illness and are looking for education, support, and inspiration, visit http://www.survivingstrong.com

Want to know how art can help in your healing process?  Visit http://www.timetolivecreatively.com

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness, newly diagnosed illness, overcoming adversity, Personal Conviction

“The Normal Heart” A Relevant Message in Today’s Age

This weekend I watched the television adaptation of Larry Kramer’s The Normal Heart. The movie, based on Kramer’s play by the same name, chronicles the beginning of the HIV/AIDS crisis. This may seem like an entry on Facebook for Throw Back Thursday, but its message is current, and beautifully acted.

One may wonder why are we engaged and lauding the courage it takes to make a film about HIV/AIDS in the 80’s when we’re in 2014. I worked as a HIV/AIDS service provider in the 90’s. Things have changed enormously since then, that I’m grateful for, but there’s still more work to do, just as there is with cancer, multiple sclerosis, Parkinson’s disease, and mental illness. Using that as a jumping off point, why is The Normal Heart so important?

I was listening to an interview on Good Morning America with Julia Roberts. Roberts plays a physician who, at the beginning of the epidemic, is really the only doctor seeing these men with this mysterious illness and trying to get funding to unravel its mysteries.

One of the most poignant moments in the interview Roberts shared how the movie is relevant in today’s age. Roberts clearly talked about the need for us all to be willing to fight for a cause. We need to be able to go to the mat for something important, vital to our existence when it comes to our physical, emotional, or spiritual lives. The Normal Heart shows us the lengths necessary to bring about change. It provides us with the catalyst to ask ourselves what do we think needs to happen to make lives better for those facing challenges. What’s our part in the making those changes, and what are our next steps?

What draws at your heartstrings? One of the easiest ways is by looking at your Facebook account and seeing what you’ve “liked”. What organizations, stories, and posts bring about a visceral reaction? I have a friend who’s an HIV/AIDS nurse practitioner. She has devoted her entire life to finding a cure, lessening the impact of HIV on people’s lives across the planet. I follow the Old Friends Senior Dog Sanctuary.  They care for older dogs who have been abandoned or whose owners can’t care for them (mainly older adults). They post pictures of the dogs throughout their day capturing the hearts of folks like me (I have a 13-1/2 year old lab mix with many medical problems). There’s something we’re all drawn to and gets us going when we talk about it, most likely those causes we give money to or volunteer for, and for some the professions they’ve chosen.

The Normal Heart may reflect on days gone by, but its message it relevant today. If nothing else just the length of time it took to have the film made talks about how perseverance and passion fuels change. What do you use when facing a challenge to channel your energy for change?

Diagnosed with a chronic or life-threatening illness? Looking for education, support, and inspiration? Visit www.survivingstrong.com

Interested in the impact of Art on Healing? Visit www.timetolivecreatively.com

Posted in Caregiving

Caregiving Near and Far

Welcome to Caregiver Friday!!

Growing up I remember the stories my parents told of where they grew up in Williamsburg, Brooklyn.  They shared stories of the neighborhood, where they lived, and who they lived near.  It was common for families to live within blocks of each other making support an easy thing to accomplish.  Knowing that there were family and friends within blocks eased everyone’s mind because love and support was close.  Times have changed and we’ve become a very mobile society, so what does that mean for us?

The job market has enticed many people away from their place of birth with the hope of a promising career.  I moved away from the east coast three years after I graduated from college to go to graduate school.  No matter the reason we leave, we often leave our families behind.  So what happens when a loved one needs our support?

One of the greatest tools for long-distance caregivers is technology.  Although you may not be there to provide the hands-on caregiving, you are available for emotional and spiritual support.  Technological advances like Skype, or FaceTime on your smart phone give you the chance to see you’re loved one while speaking to them.  Texting and email have certainly allowed long-distance caregivers to stay in touch with their loved one as well as the medical team who is caring for the person you love.  What about the day-to-day caregiving responsibilities?

When I was a HIV/AIDS service provider, I know that many who were diagnosed with AIDS, especially early on, returned to their hometowns to receive care from family members.  There was a huge migration of people from the two coasts who moved back to their more suburban/rural towns to receive love, support, and care from their families.

Depending on the amount of care needed a in-home caregiver can be hired to care for the physical needs of the person.  This was the choice may family made for my grandmother.  It was important for us that my grandmother remain in the home she’d lived in for over 35 years.  Having the continuity and safety of the home she had lived in for so long was crucial for her quality of life.  My parents lived an hour away, but my father often worked in the area and would stop by several times a week to visit and then my grandmother would come to my parents’ home for visits.  We were fortunate to have a live-in caregiver who was attentive, loving, and compassionate…but that may not be an option for everyone.

It’s possible to hire a care manager who will make an assessment of the person’s needs and the comes up with a care plan.  Often this entails arranging for community services to come in and provide help to the person who is health challenged or injured.  There is the option of a multi-level care facility.  These living communities go from independent living, to assisted living, to 24 hour nursing care.  It is often quite expensive so it’s not an option for everyone.

We’re going to have to come up with ways to handle the issue of long-distance caregiving, especially as our population ages.  The statistics show that because we’re living longer, many will have illnesses in their advanced years.  If you’re a long-distance caregiver and have strategies to share I’d be grateful.  It’s something we have to address unless of course we all begin to migrate back to our families.

 

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

Bring It On

When you’re sitting in the doctor’s office and you receive the diagnosis of a chronic or life-threatening illness; it’s not unusual for the world to stop spinning, time to stand still, and all your assumptions about life to be shattered.  Getting over the shock comes with time, education, and support but it’s critical that the shock pass so that you can tackle the health challenge with every part of your being. 

We hear a lot of commercials on television, ads on billboards and magazines, and enough e-mails selling products to keep your head spinning for eternity.  What do all these ads have in common?  They have a key element, a tag line, or a motto they stand by in their presentation.  The big question here is “what’s your motto?”  There’s only one tag line you need to get through the health challenge, “Bring It On”.

What is it that you’re inviting to “Bring it on?”  Anything and everything that it will take to lead you toward health and healing.  It may be a treatment regimen with side effects, a complimentary treatment program where you’re drinking tinctures made with crickets, or extreme physical therapy to bring your body back to life.  It doesn’t matter what the challenge because you’re standing tag line is, “Bring It On!”

If you’re committed to health and healing then there isn’t anything to difficult or time-consuming that could get in your way of getting better, or stopping the progression of your illness.  Years ago I managed a HIV/AIDS medical/psychosocial program and one of my clients had CMV retinitis.  This disease robs the patient of their sight and the treatment protocol at the time was a daily IV infusion of meds.  The infusion took 3 hours and the client was still working.  He decided his sight was worth everything to him and he would set the alarm for 4am, 3 hours earlier than the day before he learned he had CMV retinitis and declared his intention to do what it took to save his sight.

It’s these types of efforts and sacrifices that sends critical information throughout the body.  It signals the cells that you’re up for the challenge with the coordinated efforts of mind, body, and spirit.  The synergy of these three powerful part of your being will propel you forward on your journey to wellness.