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Shortly before I was diagnosed in 2010, I remember telling my thirty-something daughter that something was wrong, that I felt broken, emotionally as well as physically. Life had been really good. I was achieving some goals I’d sought. For me, flares are preceded or accompanied by a global feeling of doom. I’ve always been an optimistic person, an “I can get past this” and “I’ll find a solution” person. I hate most that this illness sometimes succeeds in changing my whole outlook, for at least a short time. I’m slowly teaching myself, with the help of Toni Bernhard’s books, that this emotion is like a wind that blows into my life and will blow back out again. I just have to let it blow when it does. Right now, I’m dealing with some new physical issues, and I’m trying to keep my equanimity by practicing those same skills Bernhard teaches.
I think the uncertainty of not knowing what the outcome of a situation will be is the worst thing ever. Just not having any clear way to act is such a fear feeder. I think that even if an outcome is the worst case scenario, I would be able to make a plan and then go forward. That is one way that RD and a court decision are similar. You, and I, truly have a very limited input into how the outcome should be. Even if I rest, take my medications, and think positive RD can still flatten me for a day or more. With courts, you can provide all the info possible but, it is still up to other people to interprete and make a decision on your, and your family members lives. So, I guess it is the lack of control and the unknown future that gives me the most fear. One thing that helps is the fact that I have been in really bad spots in the past and things do eventually come out livable, not perfect but, livable.
I keep thinking of you and how difficult your situation is right now. Even though we don’t know
each other, we are both Moms with RD, we are people who have learned that so much is out of our control.(which stinks). I hate the paralysis of fear so, my answer is to do something, any little thing, to break from the paralysis and constant worry. I sew,knit, or read, depending on my physical ability that day. Once you have done all you can to influence the outcome, let go, it is hard to do but, it weakens your fear and stress.
You have so much going on, and you are such a good person, I think the balance will come and I hope it is soon.
I have to say that the fear of the unknown is my worst enemy. This disease has slowly taken so much from me and I just can’t seem to stop slipping down the slope of increased disability. I have failed so many medications. I am a nurse and the physical aspect is just about beyond me to do. What can I do though? I have to work, I need my insurance. I am single and own a home and make way less than a nurse of 16 years should be making. I am trying to find another job that leaves me more fulfilled and happy as the desk job I have is just so depressing but 7 applications later no one will hire me. They see the disease not the nurse willing to push through pain and bust my butt to get the job done. I am stuck. But I just keep praying and pushing on. Truly Kelly your situation is heartbreaking. I am praying hard for you and my next paycheck I am donating to help you out. God bless you and this website. It is my salvation as no one understands my disease in my family.
I can’t imagine the fear you are going throug at the moment. You should be so proud of yourself for realizing you are no longer going to let that fear paralyze you as hard as that may be. I too am going through a tough time. I lost my husband to suicide three years ago. He was my main caretaker and the love of my life. I have now been diagnosed withLupus andthe fatigue is horrible. I live alone and there are many days I can barely make it to the kitchen.I am grateful to have two grown children who live within 10 minutes from me although they have young children and busy lives. I am going to have to sell my house and it is so so sad. It is so hard to comprehend that my life has come to this. I am trying very hard not to be afraid, but at times fear overwhelms me. I wish you and Roo all the happiness you deserve.
Dear Kelly,
I read JK Rowling’s little book of her speech last summer and found it deeply comforting. You examples of fear – the current ones you face with your health and the courts as well as the fear we experience when we’ve experienced trauma and need to keep going – are very important to respect. I keep looking at the role of fear and trauma in my own chronic illness (mine is chronic fatigue) and working from that perspective has been a game changer for me.
Thinking of you and Roo and the rest of your children and wishing you continued support through this major process you are facing and taking on. Sending you a big heart of appreciation for all the you do.
Kelly, wish we could hug both you and Roo and bring you all the safety, good health and help that you need…..what a long struggle you have had, and I wish there were an easier way to get all those issues resolved. Please hold tight to your faith, to your family, and to your many, many supporters. We will hope and pray that the new year ahead will make all the bad memories disappear, and bring some more of the good kind to keep you and your family in only good spirits. Take care….we haven’t forgotten your needs and hope that a magic solution will soon come!
Vi and family
Kelley, please know that our prayers are sent to you each day. My household knows the issue of fear and the havoc it can cause. This is our story in as few words as possible, please understand I’m not making this about me, only to help you know you are not alone.
I’ve had a best friend for 21 years now. In a short span of years she lost her sister, mother and daughter. All 3 passed away in less than 5 years. It devastated her. During her mourning she met a man who spent the next 7 years abusing her physically and emotionally. He severed her ties to her family and ours. My husband and I spent that time looking for her. She finally found us again two years ago. Her living family had abandoned her and she was only in contact with her niece, who was also emotionally abusive. She had been diagnosed with PTSD,anxiety, agoraphobia and Fibro. We promptly moved her in and our family adopted her with open arms. It has taken time and a lot work, but she is now on the path to recovery. Her progress has amazed us all. She had also been looking but didn’t know how to find us. She had forgotten my married last name. One night, in a dream her father came to her and told her my last name. The next day she looked on Facebook and found me. God was truly with her that night. Her persistence has taught me to be stronger in my fight against RD. She’s a hero to me.
My point is, there is healing. And faith. And love and family. It takes time and a lot of patience, but it will come to be. Please remember that my family, thought not with you in person, is fighting right along side you.