Take care of yourself is what alot of people advise when you are on this kind of a journey

At first, when hit with the news, its hard to even know where to start, what “taking care of yourself” really means

By that point, you’ve already so lost yourself, your sense of self

By the time you get the diagnosis, you have been on this journey a while, like years

The hardest part, if there is a section that you can say is harder than other sections, is the time you don’t know what you are dealing with

Like, really don’t know, just everything in your world has now taken a huge tilt but you have no idea why, your world is rotating in a very strange lopsided way

We are in the midst of what is likely year 4 or 5

December 2026 will mark 3 years since his official diagnosis

But the process to figure out what the hell was going on started way before that

On the downslope of COVID, it took a full year to get into see the right doctors to get the diagnosis

And then it took at least a year, if not more, to realize that we needed to start pursuing neurological help

So I think its fair to say we are in at least year 5 here, maybe even year 6 or 7, but I am going to stick with 5 for now

Only as of the beginning of this year did we have true help on a regular basis so that I could begin discovering what “taking care of yourself” meant for me

In Virginia, I had help so I could work, leave the house

Help was to enable me to work, not necessarily to take care of myself–I traded one “master” for another, neither of which was “me”

Compound this with the need to orchestrate a move across country and sale of a house…….the combo of his condition and the requirements of managing our life, which I now had to take on 100% where it used to be more like a 50/50 partnership, there was little to no time, much less energy reserves, to “take care of myself”

Things are different now, we’ve been settled here in Sonoma a hear and a half, we have caregivers here 32 hours per week since June, up from the 16 hours we had the first half of this year

I finally found the time and began to find things that enable me to take care of myself

I finally found my meaning to this sage advice

When the caregivers come Monday, Wednesday and Friday, I engage in a now stable routine of yoga, strength training and come cardio exercise

I do a Yin Yoga class via an app in the 2nd floor of the water tower on our property fairly soon after the caregiver arrives in the morning that really helps bring me into focus for my time

I’m stretching out these old muscles and legiments on the regular now

Strength training rotates between body areas and happens with the help of Pandora’s work out music channel each of those 3 days per week

Wednesday Lori, my Sonoma BFF, and I try to hike a good solid hike, some elevation, a good length

We usually hike the beautiful Bartholomew Park trail, but sometimes mix it up

Monday and Wednesday evenings I paddle with the Ohana Wa’a outrigger group

They are working towards several long distance races right now, including one labor day weekend in Hawaii, so there is both a lot of fun and camaraderie as well as some serious cardio exercise opportunity

I’m been put in seat 3 lately, which is the seat (of 6 total usually) that has to “count”–meaning I call out when its time to change sides of the boat everyone’s paddle is on

I tried hard to demure from taking on such responsibility, any responsibility really–I just wanted to paddle, be part of the engine, but I can only say “no” so often without risking awkward team dynamics

Fridays, I try to drop into the local outdoor high school pool, which is huge and beautiful, to swim a mile

This swim connects me to so many things about my life….memories, mental and muscle…..

As I do all these things, I am “taking care of myself” as everyone encourages, finally

As you walk up the hill of awareness, of struggle in this journey, you definitely loose pieces, big chunks, of yourself along the way

You don’t known the answer to “What do you like to do?” because you haven’t “done it” in so long. Your lab (medical) numbers start to fall out of the green normal zones. Your eating habits swing to pleasure, and drinking, yeah……

It takes a lot to change the course of these things, to rediscover now at an older age then you were before the journey began what you need

So this week, for me, is week 6 of my new routine, which I am enjoying–its my “way” of taking care of me

Truth is, I do enjoy the yoga, alot; sometimes the workouts I put myself through I struggle to “enjoy” but I really enjoy it when I am DONE and I send my “evidence” to Mary by text

And when I am paddling and the team leader has decided that day is a heavy workout oriented day, I struggle to “enjoy” that…but again, I really enjoy it when I am DONE

My lab numbers are now 99% in the green zone and I just hit a milestone I’ve been struggling with for some time now on my weight–a milestone, not the end of the journey

This blog is the answer to the question, in current terms, if I am taking care of myself

I think I am doing what I can, the best I can, trying to put all that together and stick with it

But with it, there is this thing, this nawing thing

It feels like separation…separation from the couple we were…separation from Matt

Other people are helping him get through his day……other people have been inserted…I am intentionally taking myself away from him, when he needs help

I know, I know…..but its a real mental thing that I am dealing with on this journey, a sense of separation

The caregivers aren’t going it, I am not doing it, the truth is: Uncle Lewy is doing it

Like this whole thing, its a journey, physical, emotional, relational……a tough ass journey

That’s where the reflection work that happens when I create blogs like this to share with you is so incredibly valuable to me, so impactful to me, as I have to process what is going on, put words, images to it all–it is also a way I am taking care of me

While an Uncle Lewy inspired nasty comment from Matt can still change the balance of my planet in a nano second and cause me to fall out of rotation, fall out of my pattern

I pray the new routine, the new schedule of help, the continued blogging, gives me the resiliency to realign my rotation faster than before when it does get knocked out of wack, because it will, zero doubt about that

So there is a lot of mental gamesmanship involved here

Its all “between my 2 ears” as someone once said (to which, if you should say that to me at the wrong moment, could result in me serving you a knuckle sandwich)

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