Hello! My name is Heidi Good Swiacki. I have been married to Steve for 25 years, which has been filled with laughter, trust and love. We have 2 great kids, Ashton 22 and Chris 16. I have ALS, aka Lou Gehrigs Disease. I was officially diagnosed March '05, I was just turning 45. This blog will be about a myriad of topics. I will share my ALS story which will hopefully encourage others. It will show that quality of life comes in many forms. I have to tell you up front that there will be some spiritual references. Don't be afraid or turned off by that. Since I have had ALS I have seen many miracles. Let's be realistic, who can be a happy, non-verbal,ventilated quadriplegic without Faith? I hope you will join me and make this an interesting, educational, inspirational forum. Humor and the ability to enjoy life is required! :)
Heidi passed away 3-25-13 :(
August 4, 2013
Hello, Steve here. To help with the healing process, I am going to continue on with Heidi's blog, primarily talking about our lives and how we as a family are learning to live on with Heidi's memories pushing us forward. Topics covered will be geared towards the affects ALS has on loved ones.
Tuesday, February 21, 2012
The beginning of a new year in our house is filled with talk about budgets and finances, especially since the ALS. Fun stuff!! Caregiving is our highest expense, it's all out of pocket and it's 24-hour because of the respirator. I have a wonderful team, like family. Well , in an effort to save, Steve decided to take over Friday nights. Now he already takes care of me during the day on the weekends so this was an add-on of another 10 hours. Nervous? Me?Heck yes!:) Steve can be a bit cranky when he is tired.(understatement).
Well, I shortened the usual routine.It's been 6 Friday's now and it's been good. There were a couple hiccups the first night, a few tears but we got through it. Now that we are pro's at it, it's actually fun, it's something I look forward to. Last night we hunkered down with a movie (Pirates of the Carribean#3 , not impressed)) and shut the rest of the house out. It felt like a date night. A lot of laughs, good conversation, everyone was patient. I know these nights are making memories that will last, with a smile, after we are parted.
A story about the strength of the mind, truth or fiction?
I read my journl from 2010. I have never been good about keeping up with a journal. I only wrote 3 or 4 pages and I know I had a lot more to say. Anyway, around Thanksgiving 2010 I had a very eerie and very real feeling. I was sure that this would be my last Holiday. I had been listening to a Joyce Meyer series about listening to God. I was certain this was a spiritual message, loud and clear.
A few times a year I am pressured by Steve about the future, how my hanging on to life is taking away his and the kids future, monitarilly. How there will be nothing left by the time I go. Now I know that sounds harsh but his fear is very real. I carry a lot of guilt about this. It was soon after one of these "sessions " when I had this revelation. I have toyed with the idea of pulling my own plug. Since it's a fatal disease and I am kept alive by machines, it's not really suicide, if it's something I really want and am peace with. So it doesn't go against my religious beliefs. I just don't want to. Anyway I have what I think is a loud and clear message from God, it couldn't have felt more real. I keep it to myself initially. I prayed often for validation of this news. I wanted to be REALLY sure of what I was hearing.
The 2010 Holidays were very surreal, I felt as though I was detached, watching everything from the outside. After the Holidays the thought was still in the fore front of my mind, I couldn't shake it. I got serious about planning my memorial service, more importantly the party after. It felt so real I finally shared it with a few people. One of my close friends has a great house for a party so I had to ask her for permission to use it. This lead to questions about my mortality. We talk it out and agreed that it was very plausible. I had outlived the UCLA prediction, I was getting out less and sleeping more. I felt validated after our conversation.
Then I talked to Wanda, my day caregiver and a very spiritual woman. She supported my theory, but made sure to remind me that only God can make that decision. I then told my mother because I wanted to share that God talked to me. She placated me by listening but she never believed me. Then I told Steve. This was during a time of financial panic, and I was so convinced, he did get emotional relief.
So my semi-annual lung doctor appointment comes and I am healthier than 6 months ago. I was surprised by this news, I should be getting worse not better! This was working against my revelation.
Christmas came and it was the best in years. New Years comes...and goes, still here. Steve looks at me as if to say.."well?".
Now I have to face the reality that my revelation may not have been from a higher power. What I have learned.
God will not tell you your expiration date. Although He knows when it is, He is not going to tell you.
My mind was looking desperately for a solution for Steve, and the power of the mind is so great. It had to be a human fabrication, brought on by my guilt, nothing supernatural about it.
Another thing I learned is don't look outside for validation. True validation can only come from our Lord via the Holy Spirit. Our friends and famly don't know the answers about my mortality.
With anything you must give it to God, trust your faith, stop being anxious, shut up and be quiet so you can hear the answer.
The power of your mind and the power of the outside world will not give you the answers.
Thank you for letting me ramble on and share with you. Next post will be Helpful equipment tips for ALS and other people with assisted devices.