Hello Again…

 

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My guitar and me…

It’s been a busy season of life since I shared here last. The Philosopher and The Professor are still trying to heal from their respective physical issues – sometimes it feels like little progress has been made – though I know that isn’t exactly true. They are making progress, and I’m so proud of how they keep trying to move forward through all the frustration they’re feeling.

My days have been spent trying to balance everything that needs to be done. I began taking a computer coding bootcamp last June which has taken up all my spare time… and then some. Somehow, amid all the chaos and craziness of life right now, I’ve managed to continue to find time for my hospice work — this work that I love so much. The hospice I work with has a newsletter for their volunteers and they recently asked to profile me for it, so I thought it would be fitting to post the answers to some of the questions they asked me here – just to share a bit more about myself here, and how much this work is a part of me now.

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  • 1.       What motivated you to get involved with volunteering with Signature Hospice?  How long have you been doing this?

       I actually came into the volunteer companion role after beginning in the No One Dies Alone program (NODA) with Signature. A few years ago I was struggling with some serious health issues that required me to have weekly saline infusions to increase my blood volume in order to help stabilize my blood pressure. Because these infusions had to be done slowly, I spent 4 to 6 hours alone in the hospital – with a sweet nurse who could only check on me a few times. I remember lying there, feeling so weak – and I distinctly remember thinking that if my heart just gave out no one would know – I could die there all alone. I promised myself that if I ever became strong enough I would do something to ease the loneliness of others and find a way to keep others from being alone in their weakness.

        When the time came that my health improved and became more manageable, I happened to see a Facebook post about a training for the No One Dies Alone program that Jim Pfeifer was doing in Estacada, where I was living at the time. Needless to say, I made sure to be there, and at the end of the meeting Jim pointed out that Signature has a Volunteer Companion program as well. I thought that might be a good fit for me too and not long after that, I was able to meet with Michele. I started the hospice volunteer training in September of 2015, and now I volunteer with both programs.

  1.   Tell me about your experiences as a Signature Hospice volunteer. (We cannot share information about specific patients, we can write about our experience.)

       I have had some beautiful experiences as a Signature Hospice volunteer. One patient I was able to visit every week for a full year and even at our last visit she still managed to sing along with me for a little while. She loved the old hymns – when she was young she used to play the guitar at her church – and she knew all the old harmonies, so she would sing the harmonies along with me. One time her daughter came by to visit while I was there and she was able to hear her mama singing along with me – it was such a precious time. This patient was in her nineties and had a little dementia, but you wouldn’t have known it during our time together — music has a magic that can erase time and take you to that “truth point” where time is secondary — it takes you to a place of “soul meeting” beyond the confines of the reality we know so well. Sometimes, when I’m singing for other patients now, I still hear her soft, wavering voice singing the harmonies along with me.

  1.  During training volunteers are invited to deepen into the companionship role, deepen into their own heart, and deepen into being present. Can you reflect on this and how you are experiencing volunteering with hospice. How has volunteering affected you?  

      Wow. This is a beautiful question. I think I have a bit of an advantage when it comes to being present and that “heart-deepening” we talk about, because I not only have the aid of my guitar and its voice and rhythm, but I have a history of health struggles that left me with an understanding of something wordless within that I can recognize in others. When we are truly present with someone we truly see them… there is a timeless quality – without expectation, without goals… You’re allowed to just be –  it is a privilege to just be with someone in their humanity… There is a sacredness in our time together – in any interaction – but especially in those relationships that are spent on the edges of life. I love this work. I love how it has deepened my own personal soul-work, I love how it keeps me grounded… When life is crazy or chaotic, this work brings me back to what is real and reminds me of what is true.

  1. How do you take care of yourself so that you can continue this work of serving the dying?

         I do find it a challenge to balance all the different facets of my life.  Since mornings tend to be hard for me physically, I’ve learned to use that time in quiet prayer and meditation — sometimes what I need is just more rest.  I’ve also learned to use the hours I may lay awake at night in the same way — which at least provides me some peace and quiet while the rest of the house is sleeping. I am a student of Healing Touch as well, so I use the “self-energy-center-connection” techniques to balance my system as well.    

      When I find free time I write music and songs which help me connect with my inner-life  – though that doesn’t happen as often as I’d like. I try to find time for reading that deepens my soul-life on a daily basis as well – which often depends on how my mornings progress. I find that serving the dying requires me to remain in touch with my inner world. Aside from that, having regular contact with others who are doing this work as well really encourages me — the volunteer meetings that Michele plans are always a breath of fresh air.

  1. What advice do you have for our current or prospective volunteers?

         I would strongly suggest that prospective volunteers have some kind of plan in place for how they will maintain their own inner balance as they join in this work. What is sacred is often hard to meet face to face and it will force you to face what is deep and Real… and like the story of the Velveteen Rabbit says, we find that what is real is a “thing that happens to you… most of your hair is loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don’t matter at all because once you are Real you can’t be ugly, except to people who don’t understand.” This Real that the story speaks of happens to those who have been loved — REALLY loved — for a long time… Sometimes it hurts… sometimes it leaves scars… but this is what is Real and it’s just as magic as the Velveteen Rabbit describes it… There is a wisdom that shines in those of us who become Real, and it is a great privilege to spend time with them — it shouldn’t be taken for granted. Don’t go into this work thinking you have to do it like I do though – or like anyone else does for that matter. You are unique – just as unique as each of these Real souls that we get to work with – and your connections, your interactions, your own way of being with each other will be unique. Open yourself up to the love within you and let it make you Real too, as you share it with those who need you.

What else would you like people to know about you?

  • Hobbies, other volunteer work,

      I seem to always have my hands busy with something. Aside from music, reading and writing, I enjoy knitting when I have the time (I like to make prayer shawls and teddy bears – I made a butterfly shawl once for a patient who was absolutely in love with butterflies – her room was full of them!), and I make rosaries as well to give away to hospitals and hospices if they want them. I’ve been involved with St. Vincent de Paul giving out food boxes, but sadly I haven’t been able to do that for months now simply because there hasn’t been the time. I also interact online in a few support groups encouraging others who struggle with health issues like mine (dysautonomia of all kinds, stroke survivors, connective tissue disorders, etc.).

  • family, pets, travel,– goals, plans, etc

        My hubby and I have been married over 21 years and we have two sons who are 19 and 16. Both our boys are autistic which has been a journey I didn’t plan for, but it has been quite an adventure. Being their mother has taught me more about being Real than anyone will ever know – they are my greatest accomplishments and source of pride. Our youngest just graduated this past summer and both of the boys have plans to continue their computer programming studies. We have two cats, Emma and Dante, who have suddenly become snuggle bunnies in their old age (probably trying to get into cat heaven now) :), and a sweet-hearted mutt-dog who helps out our youngest letting us know when/if he falls. (He has tethered cord syndrome which wasn’t discovered until last year so we’re dealing with the long term ramifications of that and we’re thankful that the release surgery was successful so that the damage didn’t continue to get worse.) My sister lives just a few houses away so I get to spend a lot of time with her family – loving on her little boys who are 3 yrs old and 8 months old – I love having my arms and heart so full!  

  • Education, education goals

       I’ve spent my years home-educating our boys and providing the therapies they needed, so my education has been earned in the heart of this crazy family life I’m living. Last October I was blessed to be able to attend an End-of-Life Doula training from the International End-of-Life Doula Association which was even better than I expected it to be. We learned about how to help the dying and their families at three different stages – the time before the vigil where “legacy work” can be done and the vigil can be planned (obviously this length of time is variable depending on when the End-of-Life Doula is invited into the process), the vigil itself, and then the bereavement period. I hope to be able to fulfill their requirements for certification at some point, but it’s a bit complicated with HIPPA laws and such. I’m also a student of the Healing Touch Program (a form of “energy work” often learned by nurses) – recently I finished the Level 2 training and I’ll be taking the 3rd Level next March.  At the moment I’m nearing the end of a computer coding bootcamp program at The Tech Academy, and the current plan is to try to find flexible work with these new skills that will be able to have a positive impact on the lives of others.

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      I feel so honored to have been chosen to be profiled in our newsletter — all the volunteers I work with are amazing people, and learning more about them is really my favorite part of reading it. I’m looking forward to seeing them all again when we get together for our meeting this month.

   May all of you whose hearts are spent on loving others, particularly the weakest among us — may you all feel the peace of love well spent. May you all be blessed to know someone who has been made Real.

It’s all Grace…

 

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January…

 

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It has been a busy month so far, and tonight I’m taking a few moments to catch my breath. This is the first evening since my new nephew was born that I haven’t been holding him — giving my sister a few hours of a break so she can get some sleep. Over the past week, I knew that she wouldn’t be needing me in the evenings much longer — Little One had begun figuring out the difference between night and day, which meant he was sleeping a lot better.  So, this evening, almost three weeks to the day that he was born,  I stayed home and read my book here –rather than rocking him in her chair down the street. (I’m so thankful to be living so close by!)  Her postpartum period this time has been rather healing for me so far, simply because I get to be here — rather than far away in another state like I was after Little Boy was born. It is a blessing to be with my family — one I will never take for granted.

 

While my evenings have been spent rocking Little One and reading, my days have been almost overwhelming. Both the Professor and the Philosopher are in therapy right now, and it’s been a challenge to keep everyone’s schedules straight. The Philosopher has his physical therapy for recovery after his spinal cord de-tethering — his entire recovery is a bit of a roller coaster ride, but then they warned us that it would be — he sees a specialist again on the 30th and we’ll have more of an idea of how well he is progressing. From our viewpoint it feels like he’s doing very well most of the time. The Professor is struggling with his brain injury from his concussion last summer… he is now in occupational therapy as well as speech therapy — physical therapy won’t begin until his brain has healed more. I can feel him trying not to be discouraged, and I’m so proud of him for doing the best he can despite it all. It has been about six months — and all the therapists are very careful not to give a time “prognosis” for when he might be “better”. We really have no idea… I’ve written multiple follow up sentences to this one simple thought, and none of them have “worked” — there just aren’t any words right now… Thankfully, he was actually able to attend his piano recital without too much pain and nausea – which made him a very happy guy. Right now the piano is keeping him from feeling like a total invalid, even though he can only play a few minutes at a time before the pain and nausea force him to lay down.

 

Aside from all this, we’re still surrounded by boxes from our most recent (and hopefully last for a long time) move. I am so thankful to be in this particular house — there is plenty of running water, plenty of heat, and I’m just a couple doors down from my sister and her family. (In all the crazy snow and ice we’ve had I was able to just walk over for Little One’s labor and birth since he was born at home, and I didn’t have to worry about not being able to be there.) We are now only 10 minutes from the Professor’s therapists and a half hour from the Philosopher’s, which makes my life much easier. I just wish that I was closer to having all the boxes unpacked — cardboard boxes make me anxious and all I want is to have them all out of my house with everything “put away”. I can only do so much though. Even if I wasn’t busy doing the basics of running a house (hello never ending dishes and laundry), balancing the boys’ therapies, and helping my sister — unpacking is actually really hard on my (post-strokebody — and I can only do so much before I’m dealing with symptoms I’d rather avoid. Afterall, rocking a baby isn’t as physically demanding as unpacking books — which are basically all I have left in these boxes I’m surrounded by.

 

In my free-time right now I’m doing a lot of reading (I just picked up 11 books from the library today – such a happy thing!) and I’m hoping to get back to my knitting and rosary making soon. My dear hospice patient that I had been visiting for the last year passed away, and I’ve taken about a month or so to let myself grieve before I take another patient. It isn’t often that you get a year with someone in this work, and I want to make sure that I appreciate our time together — to make sure that I’m really ready to share moments with someone else. I can tell that it won’t be much longer though before I’m ready. I am so grateful for the privilege of sharing someone’s end of life journey. It is as much a privilege as sharing their labor and birth journey’s — totally different, and yet, so similar.

 

At this moment tonight, though, what I’m yearning for is simply Rest. I am struggling with the fact that my nights are too short (as they have been since the boys were born!), and the next day keeps coming even though I just want the world to stop for a bit and give me a break. What was it my patient said? I wrote about it earlier and I’m going to have to go back and read it — something about how you just keep going. So, tonight I’m thinking of her and pausing for a deep breath…

 

By Grace… I will just keep going…

Music and Memories…

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It’s been over a year since I became involved in this beautiful work with people on their end-of-life journeys, and since I knew all of us who come to this work bring our unique gifts to share, I trusted that I would find my way in companionship with the dying as long as I was simply myself. It didn’t take me long to discover where my gifts would be most useful.

 

From the time I was young music played a big part of my life – my grandma sang, my father can play any instrument he gets his hands on – music has always surrounded me. Over the last 20 years, my guitar has traveled with me across the United States repeatedly – it has been a constant presence to remind me of who I am and  where I have come from. So, it was only natural to bring it with me to share what brings me joy with those I am given the opportunity to visit. I wasn’t sure how it would work out the first time I walked into a room with it, but the patients  I have visited have all been very happy to have me play and sing for them. Some have even remembered the harmonies to the old hymns as they sang along!

 

As my time with them passes, patients add their voices to mine for shorter and shorter periods of time during our visits, but so far they continue to sing at least a little at every visit before drifting into a peaceful sleep. Sometimes as I play I seem to hear a voice join mine, but then look up to discover that the patient is actually asleep. The rest of the time I play and sing for them as I would for my dear ones who are sleeping, and every once in awhile they’ll surprise me and “wake up” to join in on a song.  There have even been precious moments where family members have been there to share the songs with us and been able to get a glimpse of a younger version of their loved one through the music.  This music has not only given us our own unique communication and relationship, it also creates a precious atmosphere of peace and tranquility — the sound seems to hang in the air where we can breathe it — where it can become part of us. Our life journeys have been woven together during these visits, and in a very real way, they have now become part of my life story.

 

In this sacred work my relationship to music has facilitated my connection to patients, creating the “way” for companionship that I was looking for when I began.  Even when words fail, music and song have given us the “heart-to-heart conversation” we need. I am able to walk into a patient’s room with no expectations and play whatever it seems they need to hear at the time. Whether we start out with something upbeat that they can clap along to, or it’s obvious that they are in need of something more like a lullaby to soothe them to sleep, my guitar and I can provide whatever is necessary at the moment. It has been such a privilege to become a part of these lives as they have become part of my own, and now I find myself treasuring the memories we create together more than I ever thought possible when I started. I’m so grateful for the blessings this work has given me over this past year and so thankful that my life path has brought me here.  It has all been such Grace.