We so DO understand what you are feeling. It is overwhelming, full of uncertainty and is all wrapped up in a sense of grief and helplessness unlike anything you've ever felt. It is not a good place to be. But those of us who will now share this time with you, have likely felt most everything you now do. I wish I could tell you that there was a shortcut around those feelings... but there is not. I wish I could tell you that you could run through them to make the process faster in its experience... but you cannot. I wish that I could tell you that you could close your eyes, tap your heels thrice and it would all be gone. Unfortunately, we're not in Kansas anymore. What I can tell you, difficult as it might be to believe, is that it does get better. Let me see if I can describe some of my experience in the hopes that it might give you another point of view.
I told my wife, Darcey, that I felt like we were on a train. We didn't ask to be on this train, but we're here nonetheless. It has one destination, not one WE picked... but the one that ALS picks. And want as we may, we simply cannot get off. We are joined on this train by some equally wonderful people who didn't want to be here. So what can we do? Really, there's not a damned thing we can do but ride this train. And though we know where it leads, we don't precisely know when it we will get there.
As has been said, each "ride" is different. I think it was easier for us because we'd gone through a year of life on hold, waiting to get better. And she wasn't getting better. Rather than the despair that would often accompany a diagnosis of ALS, we actually felt relief. I know it sounds silly, but consider this. We had just spent a year going nowhere and doing nothing. And during that year, nothing got better. With the Johns Hopkins diagnosis of ALS, we suddenly could find some certainty as to what Darcey was going through... and what I was perpetually trying to react to in my support and caregiving role. With that diagnosis, we could read and begin to understand that likely course that ALS would run. With uncertainty removed, we could begin to plan again... to live again... to more fully love again.
Darcey and I were married in 1984. Compared to stories from friends regarding their relationships... views from the outside of others we knew... ours was indeed a marriage of "peace, love & joy". We had disagreements, but we really never fought. It did, indeed, seem to be a dream marriage. Looking back, we both agree that ALS changed the relationship that we’d had. It took on a whole new depth. Roles changed. I am now the sole income producer, homemaker, caregiver, shopper, cleaner, etc. My time became a premium item as I now had more to do than there was time to do all these new things. But we talked more. It wasn’t how much more we talked, but how much more deeply, openly and honestly we talked. It seems incongruous… but we might never have known this depth of love were it not for ALS.
Again, Thomas933, this is my path and how it has run. Yours will be different as it will be all your own. And as overwhelming as it right now is, I truly believe you will find a way to anchor yourself and begin to pull things back into a perspective that you can work with. For now, take it moment by moment. Feel free to come sit with us, here in the forums. Let us know what you’re feeling and we’ll try to help you find something to hang onto. Again, I will remind you that you are not alone.
As before, my best goes with you…
Jim