Being Your Own Best Friend and Advocate

Life throws many challenges our way. We can not avoid them. We must face them head on. There are times in our life when something happens that is difficult to face. We rather turn the other way and pretend it’s not happening. It doesn’t mean you are weak. It means you are human. We are vulnerable. We experience physical and emotional pain.

I’m not a young woman anymore. I have lived a long time. I have experienced much joy and loss in my life. I come from a family with six children. I had siblings that were considerably older than I was. My only brother was nineteen years old when I was born. He passed away last year. He was a father, grandfather, husband, and psychologist.

My oldest sister Jeanie died on my fifth wedding anniversary on July 13th, 1979. When I was twenty-eight years old. She was only forty-one. She died from Alpha-1 antitrypsin deficiency which is a genetic disorder that causes lung disease or liver disease.  Her lung problems became apparent when she was about twenty-seven years old. She had two young children. She suffered from shortness of breath, wheezing, and lung infections. Ultimately her lungs were so compromised that she ran out of breath. Because she wasn’t getting enough oxygen to her brain towards the end of her life, she developed a type of dementia.

Despite how ill my sister was she never lost her sense of humor. She kept moving forward in her life. Did the best that she could to continue being a loving mother and wife.

When I was in my early thirties my parents became ill. My dad was diagnosed with terminal lung cancer. About the same time my mother started exhibiting symptoms of dementia. I have to say that this was one of the most difficult challenges of my life. Facing the fact that I was going to lose my parents. And taking care of them was very hard. They died eight months apart. My memory of the first year after they passed was a sense of overwhelming loss. Everyday when I awoke my first thought was, I’m an orphan. Even though I was thirty-five at the time. I still miss my parents to this day.

Early in 2008 when I was fifty-six years old, I started experiencing cardiac symptoms. At night I could feel my heart beating irregularly, during the day I noticed that I became short of breath when I walked up steps or any incline. I didn’t tell anyone at first not even my husband. I decided to go to my primary physician and have a check-up. I explained my symptoms to her. She performed an EKG. She told me she didn’t see any problems. She didn’t feel I had any need to be concerned. I wanted to believe her. I wanted to believe that there wasn’t anything wrong with me. 

After all, I never drank alcohol, never did drugs, never smoked. I had been a vegetarian for over twenty years. I was rarely sick. I exercised everyday of my life. I kept asking myself why would I be sick? I never did anything to endanger my health. Of course, neither did my sister Jeannie.

My heart continued to exhibit negative symptoms. I had angina pains that ran up my left arm and into my jaw. I started having arrythmias all day, which are irregular heartbeats. Even picking up and carrying the lightest burden became impossible. If I needed to pick up even the lightest object, like my purse. It felt very heavy. I finally confided what was happening to my husband. He told me to go to the doctors. The second physician I went to prescribed several more tests. She called and told me that the left side of my heart was not working quite as well as the right side but that it was nothing to worry about.

I disagreed with her. I told her I felt there was indeed something serious going on with my heart. I wanted a referral to a cardiologist. She became quite angry with me and told me once again it was unnecessary. But she gave me a referral.

The cardiologist did many tests, an EKG, an echocardiogram and a cardiac catherization and tilt table test and a pulmonary stress test. When I went to the follow up visit after the tests, this is what he said, “you are now a heart patient. You have left heart failure. Your ejection rate of your left heart is 40. It is supposed to be 60. You have a twenty-five percent chance of surviving five years.” He gave me prescriptions for several heart medications. Which they would start out at low doses and gradually titrate up over several months.

I was stunned. Somehow, I always felt that I was invulnerable to getting a serious illness. But nonetheless I did. The first year was tough, getting used to the meds wasn’t easy, but the depression and anger I felt was often difficult to bear. Gradually I started feeling better. I became less depressed and started living my life again, one day at a time.

I would like to share with you and essay I wrote after I received the diagnosis of heart disease.

Yesterday I was told that my heart was broken. Well they are not the exact words that the doctor used. He used big, important words like, congestive heart failure, and weakened heart valve, cardiac insufficiency. Cause unknown. I knew for the past several months that my body was trying to tell me something. I told myself I am just tired, stressed out, poor coping skills. But deep down I knew my heart was telling me something serious. Wake up, pay attention, and listen!

I stared at the doctor. I said,” I just cannot believe it, I’m so, so shocked. He said,” yes, it’s true you are just a cardiac patient now.” My mind refused to believe that I could now be defined with these few insignificant words.” I said to myself, this is not who I am, I’m so much more than this. I’m an artist, teacher, writer and lover of all living things, mother, wife, sister, aunt, and friend.

I hadn’t been a very good friend to myself, I felt angry, I don’t know who I was angry at. I felt cheated, but I don’t know whom, or what had cheated me. I had spent many years trying to deny any possibility of being frail human, I ate all the right things, exercised every day, never smoke or drank. Why, why me? Why not me, I said deep inside.

Certainly, my life had been stressful, for a long, long time. I didn’t always make good choices, I trusted the wrong people, gave my heart away bit by bit to people who didn’t deserve it. People took big chunks of my heart with them when they left. I often felt unloved, unaccepted, unfulfilled, unwanted. Always reaching out for love, acceptance, never really feeling loved in return.

Indeed, my heart was broken. But maybe, I can find a way to patch it up, pull it together, if I can find all the missing parts. Yes, I told myself I would begin today, put myself back together. Mend my heart. Learn to love myself, accept myself, and bring fulfillment to the heart that had broken in so many small and big ways.

That was eleven years ago. At first, I didn’t think I would live long enough to retire, or see my husband retire. But I have. And here I am living in North Carolina. We moved here three years ago. I have been volunteering at an animal sanctuary taking care of exotic birds. I’m still painting and writing. I spend long hours in my garden tending my garden. I have adopted three new pets a longhaired dachshund named Douglas and two parrots named BB and Travis. And still have my two cats Sloopy who will be twenty-five this year and Evie who will be nineteen.

In conclusion. I would like to say that you should listen to your body. It will tell you when there is something wrong. Listen to it. If I didn’t pay attention to the symptoms that I was experiencing I wouldn’t no longer be alive. You have to stand up to people no matter who they are and make them listen to you. Keep trying until they do listen. Or go to a different doctor who will. If you don’t, who will? You must be your own best friend and advocate, always.

Your life has meaning, it has value. You can do good in the world. And the world will be a lesser place without you in it.