There are many faces of grief. Many people suffer a loss of a loved one which could be a parent, a friend or significant other and even a child and all this is a tragic loss. My story is a little different. Imagine for a moment that you lose something else beyond your control due to a disease process, or traumatic event. My grief relates to the loss of my physical and emotional abilities. The many losses I had endeavored after medicine did all it could do, left me unable to adapt. When an individual faces adversity from a disease process like cancer, a traumatic event such as a car accident, burns, electrocution, amputation, scarring, etc. that causes changes to your face or body, you grieve for the life you lost. When all my surgeries, chemotherapy and radiation were completed, I was alive, but I was not living.
I lost my identity along with so many other things that made it difficult to move forward. I was independent and strong, so I thought. Then all of a sudden, my feet were swept out from under me, so to speak. I found myself in unchartered territory, struggling to figure out what I was supposed to do next. I was no longer able to work or take care of myself, not to mention my child. This left me feeling like I was no longer a contributing member of society, alone, frustrated and scared.
I had to overcome treatment of 10 surgeries along with chemotherapy and radiation, physical and emotional pain, the loss of my career, quality time with my family and friends, financial security, due to continuous medical expenses. I also almost lost my house. I asked myself, what am I going to do now that I survived this horrific disease? How do I move on and begin the healing process of my mind, body and spirit? As a nurse, I was used to being independent, a care giver and taking care of everyone else. I often put taking care of myself last as most women do. But now, I was in a position that I had to depend on family, friends and even strangers to take care of me. I learned that allowing others to experience and take part of my care was their way of giving back to me. Support is an intricate part of the healing process, not only for the individual but also your family, friends and others. It helps knowing you are not alone. As I began to find my fabulous, I learned to be grateful for all the things I have in my life and not focus on all the things I lost.
As a single individual, I had to overcome not only the feeling of being alone, but also dealing with the question of “Will anyone love me for how I look?” I prayed for patience and strength, I became stronger spiritually. The hardest part has been dealing with the physical and emotional scars and limitations along with overcoming the feeling of will anyone ever love me for how I look?
As I searched for support groups to help me find my fabulous again, I could not find any. This made me feel even more isolated along with feeling that there was no one like me. I have done many difficult things in my life; however, nothing compared to fighting for my life as a single mother. All the things that I viewed as important before I was diagnosed were not a priority at all anymore. I focused, as many do, on making it through one day at a time. As I have talked to many individuals going through the treatment, during treatment is the easier part because the plan is mapped out for you by your physicians and other service professionals. The medical and service providers become a part of your support group. Once your treatment is over, you are left to fend for yourself.
I found my fabulous when I learned to accept myself for my internal and external beauty, I have realized that all those things I thought before where barriers. If you have faith and trust in God, all things are possible.
Trust in the Lord with all thine heart and lean not unto thine own understanding in all thy ways acknowledge Him and He shall direct thy path. Proverbs 3:5-6.
Face2Face Healing was created in response to the gap that often occurs when individuals have experienced disfigurement. My experience has given me a unique perspective and my goal is to involve individuals, their families and service professionals to join an innovative healing network. Face2Face Healing creates the support network to give individuals and their families dealing with disfigurement the opportunity to meet and share with others.
Despite the hardships and scars in every person’s life, there are measures that can help us to appreciate ourselves and in turn have energy to share with others. I have met some amazing individuals in my journey. So, I would like to close by saying that if you see individual with a disability or disfigurement, please say hello and include them in your conversation. Show compassion and patience. They may be struggling to re-enter into society. Treat them like God would, no different!
Karen Scuilli, RN, MSN, MBA
Executive Director, Face2Face Healing
