Welcome

This blog is about a new walk with my husband Rick & I since he was diagnosed with ALS (Amyotrophic Lateral Sclerosis) or Lou Gehrig's Disease or MND (Motor Neuron Disease) on February 1, 2008.

This blog was started as a way to keep our family and friends and anyone else interested in our battle with ALS updated.
So as you read this blog please keep us in your hearts and prayers.

The blog starts from the most current to the oldest entry. Rick has started to blog now also as of April 1,2008 so this site has become officially "our blog".

My dearest husband Rick passed away on August 13, 2010,
2 1/2 yrs after diagnosis. Now I have to learn how to walk in the courage, strength and bravery that he did in fighting this disease. He promised me he would be waiting for me in eternity on a park bench. Together Forever!

Tuesday, December 27, 2011

Joan here..."Another Christmas come and gone"

It is so hard to believe that another Christmas has come and gone without being with my sweetheart. All I keep thinking is how wonderful it must be at this momemt for Rick to be enjoying and experiencing all the wonders of what God has had waiting for him all along. Rick is alive in a new way and in an indestructible body where sickness and pain can not live in! Wow!!!


Wish I could say it was the same here on earth but it is not yet to be. So how does one fill in that time? Hmmmm......... I haven't figured that out yet. It seems to be a moment to moment, day to day, week to week, month to month and now a year to year process. I have concluded though that the ones left behind have a much more difficult walk as we have to work through the grieving process. The greater you love... the greater the pain! Hmmm... so does that mean then to be on the safe side we should not love so deeply as it would be easier?


Earth is definitely a refining pot and a melting pot of sorts. As much as it has been lonely, hard and painful at Rick's passing on I would not change the time that we had together! He is my hero!!! He was the most loving, kind and gentle man I have ever met!


I have been reading a book called "When the Body Says No: The Hidden Cost of Stress…" By Gabor Mate, M.D. Rick's uncle recommended it. It has a chapter in it that talks specifically about ALS. A very thoughtful and interesting read. Rick's uncle's late wife and Rick both passed away from ALS. They both had similar earlier life experiences and dealt with them in a very similar fashion. This book also mentions other diseases ie MS etc. The book considers an emotional component to a disease not just a physical one.

Rick always kept his cards close to his chest. He would just flash his great big smile and make you feel special. I had known Rick for years before we got together as a couple but would not have ever guessed how he was really feeling inside. He would ask me many times to just go for long drives and long walks and he would talk and talk about his life. He would always want us to snuggle holding me ever so close. At first I was almost shocked at what I was all hearing as he opened up. We trusted our hearts and beings with each other!

I wish that for each of you reading this blog that you too could bare your heart and soul to your mate. That there would be nothing the two of you couldn't talk or share together. That kind of love comes with a warning though "Enter at your own risk...This may be the most painful thing you will ever experience should one of you pass on!" but I can say it is worth every tear!

This year I have experienced the love, the tenderness, the mercy of God in my sad, lonely and dark hours of missing Rick. For that I am so thankful for!

Where do I go from here? I have no idea! It is still day by day, month by month, year by year!
And as always.....
A toast to you my dearest Ricki, here's to one day sharing Christmas together once again, I Love you!!!!

Tuesday, December 13, 2011

Joan here..."It is 16 mos today!"

The cemetary is a place that I know is not where Rick is, but a place where his bodily remains are. It is a place where for some reason every year he would want to go and tour around and tell me the same stories of the people he knew who had passed on. He would always go there and toast those loved ones that had once walked the earth. The last time he and I went there was when he went to see his tombstomb for the first time. He had picked everything out.

He could barely walk with his cane around the cemetary. I have a video tape of him doing this. I cried the whole time I was taping it as I knew the next time I would be here Rick would be laying under his tombstone.

So hard to believe that this has all happened. I have been living in a total fog this past year for sure. Emotionally dysfunctional too boot as you can well imagine! My whole world has been shaken. Until you are put in that position it is totally impossible to even begin to comphrend it at all.

I am still in a spot in my being that I don't know what I want to do to fill in the time. It is really nice being surrounded by people who loved Rick as I did. That always brings me so much comfort to talk about his silly quirks, his great humor, his tender heart, his compassion, his romantic ways, his special surprises.

Every time that I hear of someone losing someone who they loved and were so close too I just go into a tail spin as I can relate over and over again to what pain they are going through.

I keep going through one box at a time.....and believe me it is only one box at a time...as they are filled with such memories that it is overwhelming. I opened one of Rick's many cards that he had given to me and found this typed note in it. It would have been one he would have typed just before he lost his ability to type. I don't know where he found this on the internet or who wrote it originally but it was addressed to me...
To Joan,
"Love never disappears, for death is a non-event
I have merely retired to the room next door.
You and I are the same; what we were for each other, we still are.
Speak to me as you always have; do not use a different tone; do not be sad.
Continue to laugh at what made us laugh.
Smile and think of me.
Life means what it has always meant.
The link is not severed.
Why should I be out of your soul if I am out of your sight?
I will wait for you; I am not here, but just on the other side of this path."
All my love, Your husband Rick

You can imagine the tears as I began to read this. I am so thankful for the time we did have together even though it is so painful now.