Written By: Cathy Shuba
A little over two years ago, my daughter was diagnosed with Ehlers-Danlos Syndrome. Have you ever heard of that syndrome? Ehlers-Danlos is a connective tissue disorder that affects the joints, skin, eyes and sometimes the heart on some people. My daughter’s eyes, skin, joints and heart are all affected by it and give her GREAT pain after any physical activity. She is told not to play any contact sports, jump rope, carry a heavy backpack and now with her heart affected by it, she will no longer be allowed to dive off any high dive. In case you are wondering about the high dive—my daughter is on a diving team and LOVES to dive! I became sad, I cried, I felt my feelings and became free! I learned and realized the message in all of this and that this would give me an opportunity to teach my daughter to feel free from it as well, no matter how much pain she endures with it. My daughter will learn how to feel free! We will be free!
When first told about her Ehlers-Danlos, in 2010, I never heard of it. The doctor told my daughter and I that physical therapy would help if we wanted to go because otherwise there is nothing you can do for it to fix it, cure it or stop the pain from it. I thought to myself, well that was short and to the point with no direction, compassion or time to explain more to us—other than thank you for coming and fifteen minutes later with a bill for $845.00—please come again and have a nice day type attitude made me feel sick inside. We never went back to that doctor at the Cleveland Clinic.
I felt that the syndrome my daughter was just given was like working with an alcoholic that wants no help or recovery. In other words, I had no control over it, I could not cure it and I did not cause it—well I think I did not cause it. Ehlers-Danlos is genetic and who knows who may have had it on my side of the family or my husbands, we just do not know and when saying that I really do not care to know because I only care about getting the proper help for my doctor and how to keep her from injuries. That attitude of ‘who cares’ became a positive and not a negative in my recovery. I had to apply that to my recovery, my daughter’s recovery and everything else I knew I would eventually have to face with my daughter’s future when having Ehlers-Danlos. I know today about my business and not someone else. I can nurture my business without neglecting it. In saying this, I learned by the many years in recovery that my priorities and making changes where I can and disregarding the changes, I have no control over allows me to think clearly and gives me growth. This in return taught me to move forward, feel free and accept what I need to accept without resentment, blame or anger. This attitude allows me to be teachable instead of non-teachable and close-minded. This attitude allows me to cry, feel my feelings without feeling sorry for myself that results in giving up on what I can do instead of what I cannot do. This attitude gives me strength to learn more, advocate more and be more for my daughter when she needs me most. This attitude allows me to get out of myself and do for someone else as I am doing at this moment by sharing my experience, strength and hope with all of you today. I am not alone and neither is my daughter. I think that is enough to know in order for me to feel free.
What does my article have to do with recovery? It has everything to do with recovery! When I drank, I never dealt with anything. I would deny, make excuses and blame others. I was not accountable of what I said or did to others. My attitude was negative and even if someone tried to say something positive to me, I could always chop it down with negative thoughts I always had churning in my head. I was the doom and gloom drunk! I never could find nor should I say WILLING to see that there is a light at the end of any tunnel. It was not until I became sober that my life would see bad things as not so bad any more. I learned that every time challenged with something in my life was only another way of God speaking to me, sharing with me and telling me to learn more about others and me. That was my spiritual awakening which became freeing to me every time I had to face a new challenge. I found I did not drink regardless of the things that I went through and experienced which helped and made me to be STRONGER, more MINDFUL and less in DENIAL of my issues in my recovery. I realized even though I do not know much about Ehlers-Danlos I am not alone, because there are many more people out there in the world that struggle with this and I can reach out too. My positive attitude learned in my recovery allows me not to feel sorry for myself or teach my daughter to be less-than, shameful, have self-pity or be angry about it. In return, I will educate my daughter, teach her how to be more mindful of her body, her limitations and mostly be true and accepting of herself when dealing with her Ehlers-Danlos. This will allow her to be free and not a prisoner of it. Being a good listener to my daughter, when allowing my daughter to share her concerns, questions and know about with it will allow her to be free to talk about it without feeling scared, shameful or resentful of her limitations.
My daughter, since first diagnosed with Ehlers-Danlos in 2010, has gotten all new doctors. Although, it was not easy finding the right doctors—since many do not know the facts behind Ehlers-Danlos but again, it was not the end of the world in finding the right doctors. My positive attitude kept me from giving up on finding the right doctors for her. She has a Geneticist, Rheumatologist, Cardiologist and Physical Therapist all there to help her if she needs it. That is freeing! When going to new doctors we have recently found out more about her syndrome, how much she is affected by it and what she needs to do to prevent injury. This is freeing! It is wonderful knowing how my recovery allows me to feel free no matter what I need to face today in my life. In other words, I have no need or wish to drink over it, abuse my body or treat others wrong because of my fears I was having when finding out all the information about Ehlers-Danlos and the effects it will have on my daughter as she grows. The information I was given allows my daughter to help herself where she may need it and gives her healthy limitations when it comes to sports. My recovery attitude is so much different from my drinking attitude and I am blessed to be present for my daughter. I am blessed not to deny my daughters limitations and to accept them to prevent her from injuring her body or possible having her disabled by the time she is in her 30’s. My daughter does not need or has to be the next Olympian or best diver in the world. I will accept her limitations and by doing so, this will allow me to see her for who she is and love her with no control. This is freeing! My daughter will instead be an inspiration to other athletes with limitations and show others that having healthy boundaries in your life will allow you to accept, love and respect yourself. This is freeing! I am so proud of my daughter that the words are endless of how I feel about her and what I think she will become when she is older. My daughter is an inspiration!
To learn more about Ehlers-Danlos you can click on the link I provided… http://www.ednf.org/
Today I will run and reflect on how grateful I am that I can run without pain, complications or injury. Knowing my daughter would not be able to run like me without complications gives me such gratitude about what I can do so freely when others may not. My daughter inspires me!
