Mortality and Sickle Cell Disease

On the Sickle Cell Warrior Facebook page, somebody recently asked, "How do you hang on to hope and faith when we are constantly reminded of our own mortality?" I thought it was a good question and felt like talking about it.

People who are healthy from birth generally have a sense of invulnerability; they tend to feel they will live forever and nothing can harm them. Often, it's not until later in life--40's or 50's--that they come to the realization that they can be hurt, they are in fact mortal, and will one day die.

When you are live with Sickle Cell Disease the opposite is true. Between the constant hospitalizations, chronic pain, and all the complications that come with this illness, you learn at a young age that you can be hurt and you are very much mortal. It can affect one's psyche in deep and profound ways.

I know in my life I have, at times, felt:

• Cheated out of a "normal" life; 

• As though I am missing out on fun and good times with friends;

• Like my life is going to end much sooner than my friends;

• Depressed about my circumstance;

• Angry about my limitations;

• Helpless and a slave to my body;

• Hopeless that things will ever improve;

There were times in my life when many of these fears and frustrations crippled me from having hope and ambition. Depression and suicidal thoughts plagued my life through most of my 20's. Antidepressants have, at times, played an important role in my mental health. But mostly, the source of my greatest hope, is and has always been my faith.

Aside from my religious convictions, there is much I do to combat the negative thoughts and feelings that can easily crop up. For me, keeping my mind busy is of HUGE importance to my mental, physical, and spiritual health.

• Finding new hobbies;

• Serving in my church and helping other people;

• Completing and starting new projects;

• Reading and writing;

• Setting goals;

• Meditation;

• Discovering new ways to challenge and expand my intellect;

• Finding wholesome activities that allow me to grow as a person;

These are the many of the things that help me counterbalance the negativity my illness brings into my life. My faith in Jesus Christ and other religious views are what infuse me with hope. For me, faith in a Higher Power is only part of the recipe. I also have to have good things to occupy my time and good people to help add fulfillment to my life. 

Whether you live with an illness or are healthy, nobody knows how much time they have on this earth. So do your best see the beauty in your life. Gravitate towards good things, and good things will happen.

Living a happy life with Sickle Cell Disease can be a challenge, but it is achievable.