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.

Of Surgery, Stroke, and Stillness…

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It hasn’t been that long since my last post, but a lot has happened around here. I am so grateful for all of our family — there’s nothing like knowing someone is always there to have your back when life gets crazy…

 

The Philosopher ended up having to have surgery – and by the time we knew it was an absolute must, it was basically an emergency situation pain-wise. He ended up suddenly almost completely debilitated. Thankfully, by some miracle, my Mister was able to get him an appointment with the neurosurgeon within days, and ten days after that he was scheduled for the surgery to de-tether his spinal cord.

 

It was one of those situations every mom knows. You’re scared, but you can’t actually let on that you’re scared… I know every mom who has dealt with a scary health situation in their child – where you have to really trust someone else with their wellbeing – every one of you who have experienced that knows what I’m talking about. Since I have some emotional issues related to poor care at hospitals (okay, it’s probably a bit of PTSD since it leads to physical symptoms but we won’t talk about that right now), the whole hospital/surgery thing had me really freaked out — physically sick. Thank goodness my hubby was able to get off of work… He has had many positive hospital experiences and was completely comfortable with the entire situation — just the rock that I needed.

 

The surgery was a complete success. In fact, the neurosurgeon came out totally thrilled because the Philosopher’s tethered spinal cord was one of the worst she’s ever seen — which meant that releasing it is going to have a HUGE impact on his life. We’re already seeing changes that were beyond anything we imagined. Not only is he walking more easily, his brain is actually functioning light-years better since it’s not being pulled on constantly anymore. His overall body pain levels are lower than they’ve ever been, he’s dreaming, and he’s no longer struggling with depression issues. It’s like a miracle — and it hasn’t even been two weeks since the surgery. Things are just going to improve from here!

 

*  *  *

 

While the Philosopher has been healing I ended up seeing a new neurologist – just to establish care with all my weird issues since I hadn’t seen one in years and I’m supposed to be under regular supervision. He had access to all my files over the last 11 years, but couldn’t really understand what the prior docs had been doing. After examining me and listening to me (actually listening mind you!) he told me there was really no reason to assume that I had a seizure disorder. He had me go over the situation where my symptoms all began again, and I told him about “The Fall” down the stairs that started everything — I off-handedly said my symptoms after the fall were like, “I had a stroke”. He immediately said, “You did! Hold on a sec..” and then almost ran out of the room.

 

He had gone to look at my MRI imaging again… and he found what he was looking for…

 

did have a stroke.

 

Clear back in  2005, when I fell down that huge flight of stairs, one of the arteries in my neck suffered a dissection. Apparently, the arteries and veins on my entire right side are very small and web-like (not just in my right arm) – so it doesn’t take much to block one, and a serious fall led to permanent damage.  At 25 years old – just before my 26th birthday – I had a stroke… and I had been seriously misdiagnosed. In fact, it was strongly implied that my symptoms were not real – that I was somehow faking them — even though there is no way to fake that kind of facial droop.

 

The damage from a stroke can improve to a certain point, but there is always a permanent effect. When my body gets stressed by anything — whether that is physical, emotional, etc. — if anything fatigues it, the symptoms that occurred after the stroke return. The harder I worked to “get better” the worse things were. Which is why I began to “improve” when I started resting more and taking my symptoms seriously — even if the doctors weren’t. As long as I don’t push myself too hard — as long as I live within my limitations — I do okay.

 

By the end of every day my body is done, which is why my face is a bit droopy by then, and my arm and leg are a unique blend of weak/achy. Not fun. But after 11 years, it’s normal for me. The neurologist said he was actually really impressed at how well my body/brain recovered, and also informed me that dysautonomia is a common result of stroke — so that’s why my autonomic system problems began at the same time. My health is officially no longer a mystery. He’s going to have some more imaging done to see where things are now, but he was really shocked that no one found the obvious stroke in my imaging before now. He had the images from 2009 and saw it there… a smoking gun that explains everything.

 

I’ll admit — my feelings about this new info are a bit mixed. I’m relieved to be able to really understand my body, and I’ve found myself feeling more compassionate towards it — here it’s been doing the best it can, and I’ve been angry at it for not “trying hard enough”.

 

I’m also a bit scared, though. Having one stroke under my belt so young doesn’t bode well for my future — especially since I have such tiny arteries and veins on my right side as well as a connective tissue disorder of some sort… they are easy to block… and they’re the reason why I get terrible headaches when my blood pressure gets above 110 over something… those little vessels think it’s too high at that point — thank goodness for the low bp that comes with the dysautonomia. I just have to keep my bp in the sweet spot – 90 over something to 105 over something – low enough to keep away a “high bp headache” and high enough to keep me from passing out!

 

I will be dealing with the results of that stroke 11 years ago for the rest of my life — as the neurologist said, “This is just your life.” It’s not good or bad, it’s just the way reality is…  I’m learning that the “stillness” – the rest – that I’ve been forced to embrace is not the result of some kind of failure on my part. It’s not some kind of mysterious occurrence that can’t be understood, or one that has to have some kind of spiritual meaning because otherwise it doesn’t make sense. This is the result of a real circumstance, and any meaning I can find in it – any spiritual growth – will be from how I live with it, not from someone else’s interpretation of it.

 

This too is Grace… and in it there is Peace.