There, And Back Again

It seems that for us, “when it rains, it hurricanes,” as one friend put it. As most of you know, Rhiannon’s father passed away last week, and we embarked on a daring (for us) journey to Ohio, & back.

I want to thank all of you who have sent messages of love & support to Rhiannon & I, both privately and publicly. I haven’t had the energy to respond to hardly any of them, but please know how much we do appreciate them!

I know many of you have been anxious to know what happened and how we are doing.

After 6 full days & nights away, we are home from Ohio. We left Monday, the 4th, around 6PM, and arrived back Sunday, the 10th, late in the evening.

The dogs were very happy to see us. They didn’t eat the house, and in fact, had stopped eating much of anything at all…

Now…

I am, indeed, very crashed, as many of you worried about. I’m beyond exhausted and stressed out, with viruses (EBV & HSV) flaring, and in post-exertional hell. I somehow never remember quite how bad it feels, how horribly drained I can be, the weakness, the shakiness… but then, I haven’t felt this bad in a long, long time…

Rhiannon, who also has ME/CFS, MPS, and Adrenal Stress Syndrome, is also crashed. She is not as weak as I am, since she’s, thankfully, not as sick as I am. But she’s very tired, and we are both kind of dazed.

Actually, I’m more than dazed… everything that happened is kind of a blur at this point, and this week has been one of resting, trying to conserve every precious drop of energy I have. We had to make one trip out, for groceries & dog food, and I got so shaky & weak that we left before we completed our shopping.

The Journey…

Our journey to Ohio was hard on everyone, not just physically, but also emotionally and mentally, bringing up a lot of old “crap” that we found we weren’t quite done dealing with.

It was also a chance for healing old wounds, renewing bonds of Love & sisterhood, and enjoying the beautiful cliffs & woods & gardens where we stayed, with my wonderful spirit-sister, Kathy.

It was a difficult decision whether to go out at all, considering the strain this was going to put on my fragile body, and whether I could even handle it. This is the longest & farthest away from home I’ve been in almost 6 years, and my condition has gone rapidly downhill the last two years.

We debated it every day as Rhiannon’s father lingered in the in-between state, maintained on life support & unresponsive after having been hospitalized for COPD & pneumonia & then having a heart attack, with brain damage from lack of oxygen. He was 65.

As bits of news made it’s way to us, we got our packing done, and waited for Ben, Rhiannon’s more-than-boyfriend, to finish his classes, so he could do most of the driving, and be there to support Rhiannon.

When it’s difficult on a good day just to spend three hours out grocery shopping, the decision to undertake a journey like this, with a day-long drive (or 2 half-day long drives), heightened-emotions and a heck of a lot of stress thrown in on top of it, is a very serious one. As I said in a message to one friend, “we mustn’t kill Rhia’s mother getting her to her father’s funeral,” and I meant that quite literally.

Discussions were started with Rhiannons’s aunt about funeral arrangements. Rhiannon’s father, Brian, wanted to be buried on his farm, and it would have been fairly easy to do, but in the long run, not a good idea, as the farm will be sold.

Rhiannon found a township cemetary just across the road from the back side of the farm, a beautiful spot (thank you, flicker!), and expressed her desire for burial there, so she could have a place to one day bring Brian’s grandchildren. It was easy to envision this location as her father’s final resting place & a small, informal, memorial service.

There…

11 days ago we headed out, and drove part way the first day. The decision to discontinue life support was made the next day, and Rhiannon’s father died about 4 hours later, about the time we arrived at Kathy’s home & land.

I could, and will try to, write a whole blog post dedicated to the wonderful, warm & loving support with which Kathy & her partner, Constantine, received us. Kathy has been a more-than-friend, a member of my “soul family,” since I was pregnant with Rhiannon. She welcomed us into her home, and provided us with wise counsel & abundant Love when we needed it the most, for which we will be eternally grateful.

I’m pretty certain that without Kathy’s calming, soothing, presence, that I’d be in the hospital right now. Her guidance and support was essential.

Then came more difficult news. Brian’s brother had made the decision to cremate him, and they would spread his ashes on the farm at some date in the future, possibly in the fall.

Rhiannon had come out all that way expecting a funeral, or at least an informal memorial service. We had known that they were considering cremation, but it still hurt.

We made several trips to Brian’s farm, finding things going missing from one trip to the next, and the sheep, which Rhiannon had specifically asked to see, appeared to have been sold & moved the morning after we arrived there. She didn’t get to say goodbye to them, either.

It became clear that we needed to learn about how an estate is settled, how wills & probate work, which is something I’ve never before needed to know. We had a very long visit with an attorney, who is now representing Rhiannon. We believe she is the heir to the estate, or at least that’s what her father told both her & I.

Rhiannon’s aunt has been good about corresponding with me via email, and I have been trying to build some bridges there, because they are her family, and because it is clear that we are going to be working with her and Rhiannon’s uncle for some time.

Almost everything we went expecting – a memorial service, a chance for Rhiannon to see her aunt & uncle, to find some closure, didn’t happen.

But other things, important things, did.

We went because of a death, but we found a new life: a tiny black kitten, by the side of the road near Brian’s farm, with a respiratory infection & lip injury. She came running into Rhiannon’s arms.

With lots of TLC (and food), the kitten is now doing much better. Dusty, Rhiannon’s first cat, is not very welcoming, and Kodi would like to eat it, so we will see.

Kathy holding me tight just before we left for home.

The bond that existed between Kathy & I was reinforced as we spent hours talking, not so much casual “catching up,” as reconnecting, in deep conversation about matters of Life, Spirit, Love, Mother Earth, and much more. We really “see” each other. Namaste, Kathy!

Kathy saying goodbye to Rhiannon & Ben, in front of her new addition.

Rhiannon’s bond with Kathy, who was the midwife’s apprentice at her birth, and so who has known Kathy her whole life, was reaffirmed. They hadn’t seen each other in a long time. They, also, had those deep-connecting conversations. Rhia left inspired by all that Kathy has accomplished, and even more firmly seeing Kathy as her “second mom,” which makes my heart smile.

Poor Ben put up with a lot: Rhiannon & I both blowing off steam & venting, and he missed his high school graduation (that last wasn’t a big deal to him). He was a great support to both of us, and he’s a terrific “kitty-daddy!”

And back again…

We were sad to leave Kathy’s, which felt like home, but our dogs weren’t eating, and it was time.

For now…

I may be very quiet for a while, as flares can & often do last for weeks or even months. I have doctor appointments next week, and appear to have broken a tooth along the way, so there’s that to be dealt with, too.

But even if I’m quiet, I’ll still be thinking about all of you, my friends & family. Thank you again for being there for us, for your words of support & encouragement as we undertook this journey. They meant a great deal to us.

*gentle hugs*

~ Ash

Advertisements

6 thoughts on “There, And Back Again

  1. Ash,

    As always, I enjoy reading your blog and finding out what you’ve been up to. I must admit, though, that today I’m dropping by with an ulterior motive.

    Earlier today you left a very insightful post on my blog about working, or rather NOT working in the early stages of CFS. It so happens that I was going to blog that topic later this week because I’ve been doing a lot of soul searching and can’t seem to make a decision. I thought that your comment would be a good launching point for the topic. Would you mind if I quoted the applicable part of your comment in a new post? I wanted to ask your permission before posting your words in a more visible location. I will, of course, credit you.

    Take care, and thank you so much for the advise.

    Patrick

    Like

    • Of course, use whatever you would like! I was afraid I was going to sound bossy, and relieved when I heard others had told you the same thing. It’s a very hard decision, but at least there is more info on it now, and you are the most informed newly diagnosed patient I’ve ever had the pleasure of “meeting.”

      In my case, I do think a lot of it was related to adrenal stress syndrome, which I mentioned in the last post, along with a link to Dr Lam’s extensive site. I also think the use of stimulents like ritalin & nuvigil which are handed out to us like candy definitely contributes to long-term disability. They enabled me to work a lot longer, but at such a high price.

      I’ve been meaning to blog on this subject, of the stimulents, for some time. Feel free to use anything in this comment, too!

      Take care of yourself & your precious little girl!

      Like

  2. Ash, there are so MANY things I don’t know about you and I marvel at everything I discover. You are an amazing, deep person and I am sure that Rhiannon is very special too. WOW. I’m sorry for her loss and for what you both had to go through physically and emotionally and spiritually. Life can be very cruel sometimes. I hope you are feeling better back at home. Love, Laurie

    Like

    • Thank you, Laurie. Life has been quite the wild ride, for both of us, but we have both learned & grown from our experiences. Rhiannon is very strong, and wise, but has already been through so much… it breaks my heart, sometimes. I can only hope & pray that once we get through the process of dealing with estate issues and her father’s family that we will have at least a short break in the craziness.

      Thank you for your love, support, and friendship!

      Ash

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s