Well. I’ve finally done it. Put my foot in my mouth and done an interview that is getting NATIONAL attention for our cause, but at the same time coming across (understandably) as a cold, uncaring, unloving and selfish woman.
I went to DC and did a fantastic job speaking for all of us at the Living with Alzheimer’s Roundtable at the National Press Club. It was emotional and hard. It was draining. Being immersed in all things Alzheimer’s really wipes you out emotionally and mentally.
Then, I went back to the Alzheimer’s Association’s office for a phone interview with someone from CNN.com. Here was my chance to REALLY share our story. Really let the world know how difficult and frustrating and lonely and scary this path we all walk can be. Not just for Younger Onset, but for all of the families struggling each day as they watch a loved one slipping away.
So, I answered her questions and did so with a lot of candor and honesty. Honesty is the best policy, right?
As I was driving the 3+ hours home, I replayed my answers and the days’ conversations with the various people I had interacted with at the roundtable. My head was full of it all. Then it hit me. Shit. I think that sentence I said was not said right. I don’t think I put it the right way. I think if that gets printed, it is not going to sound good. I think it will overshadow the purpose of the interview in the first place.
By the time I arrived home and gave hugs and kisses to the kids and Jim, the article was up. CNN.com. National. And, yes, there was my quote. Without the emotion. Without the love. Without explanation of the measures we are taking to stave off symptoms and prolong Jim’s life while he is able. Without mention of the countless hours we have sat in doctor’s offices, the hours of driving to appointments, the hours spent on my bedroom floor in pure agony and filled with the terror of losing Jim and the kids losing their father. Crying until there was no sound left to come from the depths of my soul.
No mention of the supplements and medications Jim has taken throughout the years. There was no link to my blog so readers learn more about our story. To see that I do love Jim. That I don’t want to lose him. That I want to keep him with us as long as I can. All readers will see is that I want him to hurry up and die and get all of this over with.
So, lesson learned (I hope). When giving interviews, make sure you don’t say anything that can be written independently and come across so uncaring and cold.
I am sorry. I feel like I have let so many of you down. I know I did a great job at the roundtable. I did what I was supposed to do. I gave them emotion and tears and some of the tears were theirs. That is what I was there for. This CNN gig was an added opportunity that I feel like I blew……
Fast forward a day. What an unbelievable response. To quote the reporter from an e-mail she sent me: Your story has touched many readers today. I’ve never seen a story receive so many supportive comments.
It has been an emotional time for me. Worry. Stress. Relief. Emotional highs and lows. Crying in front of Jim and telling him I was sorry, only to have him hug me and tell me how much he loves me and what a good job I am doing. The e-mails and messages from so many friends and strangers that are supportive and loving and full of kindness and sadness at the same time. Thank you. Really. Thank. You.
All of this being said, I will not stop talking. I encourage EVERY single person that has Alzheimer’s or other forms of dementia that are able to, please speak up. Be heard. If you are a caregiver, a care partner, a loved one, a friend; SPEAK UP!! Our voices need to be heard. We need to make Alzheimer’s something that doesn’t carry a stigma. We need to make Alzheimer’s something that doesn’t put families in financial ruin. We need to demand a cure and treatments that work! Call your Congressman/woman! Write a letter to the editor. Talk to your friends and co-workers and neighbors. There is nothing to be ashamed of by dealing with this terrible disease. But living with shame and trying to hide it and to keep this battle inside of you is not helping yourself, your loved one or others that are going through this too. Let us all have our pain and loss heard. Even if it means being misunderstood and misrepresented. If I can do it, so can you.