LIVING WITH HIBM

What it's like to live with a progressive neuromuscular disease

Saturday, November 23, 2013

Guitars and Tombstones

Last Friday afternoon I was surprised to discover that my old acoustic guitar was in our living room. When I asked my son-who was playfully strumming the strings at the time- how it arrived there, he told me that my mom had dropped it off. She had apparently found it while cleaning out her basement.

I took a moment to figure out how I felt about it. I wasn’t sure. I actually didn’t want to feel any feelings about it. So I simply didn’t let myself. I quickly moved out of any potentially emotional space and focused on how cute my son looked playing my guitar.

Throughout this last week, I’ve looked at my guitar from a distance. I’ve watched my two boys try to play it, bang it around, fight over it and simply enjoy having a “real” guitar in the home. The only time I actually let myself hold it in its proper playing position was to attempt to tune it. 
Then last night, after the boys and I had been messing around with it on the living room floor for a while, my husband called them into the bathroom for bath time.  They ran down the hall leaving just the two of us behind-me and my beloved guitar. 
I first started playing guitar as a sophomore in high school after years of playing the piano. I absolutely loved it. My guitar teacher would come over every week and fill my binder with some of my favorite songs. I especially fell in love with playing classical guitar. And I just felt cool playing the guitar. Funnily enough, though it was long before I had a husband or kids, I used to fantasize about how I would one day play to my future kids all the camp songs I sang as a kid. I dreamed about playing my favorite guitar song, “Blackbird,” for the baby I hadn’t even had yet.  I imagined jam sessions with friends as I got older; you know, the way cool middle aged folks do in the movies.

I can’t pinpoint exactly when I realized my fingers on my left hand were too weak to bend far enough to actually press on the strings, but I know that at the time, I was so distracted by so many of the joys in my life, that I didn’t really allow or feel the need to let it in. Plus, it helped that I had barely had time to play in the few years prior anyway.

But here I was, alone with my guitar for the first time in years, and I wondered. Is it possible that maybe my left hand’s not as bad as I thought? Are there some chords that maybe I could play? Individual notes perhaps? So I let myself try. On some level knowing the outcome before I started, but also knowing I needed to test it out, one last time.  I tried with my hand and fingers in every possible position. I tried to will my fingers to bend all the way. I tried to see if I could play with my guitar on the floor and my fingers coming straight down from above. I was operating in a very practical, intellectual, problem-solving  manner. I wondered to myself what real guitar players do. Surely there are professional guitar players who succumb to rheumatoid arthritis or muscular  diseases and still find a way to continue playing. I picked up my phone and found the number to The Guitar Center. I called and asked if there was a device or contraption that I could use to somehow extend my fingers/ help keep them in a bent position. “Nope, sorry. We don’t have anything like that.”

I hung up. And I sat there. I felt the feelings coming on but I quickly went through my mental files, trying to pull out the one that could help me defend against the pain that was slowly moving in: “I can still listen to music. I can still enjoy music even if I can’t play it. I hadn’t even played it for so long before my finger weakness, so what’s the big deal?…” I was desperately trying to reassure myself that it was okay. But it wasn’t okay. It hurt. And then finally, I allowed myself  to grieve. To mourn this loss. To erect a new tombstone in the cemetery of losses due to HIBM labeled, “Playing My Guitar.” The truth is, though I already knew I had lost it, I hadn’t yet allowed myself to go to the funeral.  I hadn’t been ready until last night. In fact, just last year, my sister asked if she could give my guitar to my niece who was ready to move on to a bigger guitar and I said “no,” almost reflexively. I knew it didn’t make sense to her and I also knew it  didn’t make any logical sense. The reality is, it had been in my mom’s house for the last three years, it’s not as if I was using it. But I just wasn’t ready for that kind of acceptance. I was still too emotional about it to make a logical, rational decision.  It was the same experience as when I finally donated my closet full of beloved clogs, sandals, high heels and flats. I had held on to them for years. They represented hope for me. Giving them away meant truly accepting I was never going to be able to wear them again.

Last night, I eventually let go of all that I had been holding in all week. I welcomed the tears. I knew that by letting them out, I would free up some of the emotional energy that had been invested in trying to prevent them from coming up and out. When my husband emerged from the bathroom and saw me on the floor crying with my guitar, I could see his pained heart and of course, the next thing he said was that we should just give it back to my mom. Oh how he would do anything to alleviate my pain. But of course, if only it were that simple.  That route-the one of avoidance and disconnection- definitely has its place. But it’s more of a way around it rather than through it. When you travel around it, it’s still there, you’re just trying not to look back at it because it feels too hard. But when you travel through it, you’ve seen and experienced it in all of its ugliness so that no matter how painful it is or was, there’s no longer anything to fear. No question of  what lurks in that deep dark space. You’ve made it out to the other side, alive.

I see how my kids enjoy having my guitar around, so for now I think I’ll keep moving through it. I know that if I stay in it long enough, the intensity will dissipate and it will just be what it is. Another part of my story. Another piece to incorporate into my reality.

When my two beautiful, squeaky clean boys emerged in their jammies back to the living room, I brought them to the computer. I put them on my lap, opened up iTunes and clicked on “Blackbird.” I closed my eyes, held them tightly,  turned it up and felt a wave of peace and fulfillment wash over me, learning once again that sometimes, there’s only one way to get there.


Thursday, November 14, 2013

My speech from this year’s NDF Gala

Below is the link to the speech I gave as an honoree at this year’s NDF Gala at the Beverly Hills Hotel on October 17th, 2013. It was an incredibly successful event, selling out to over 600 guests and raising almost half a million dollars.  Thank you to everyone who helped make it possible.

 http://vimeo.com/79357093

Annual Neuromuscular Disease Foundation Gala.  Jennifer's Speech
Annual Neuromuscular Disease Foundation Gala. Jennifer’s Speech
http://vimeo.com/79357093

Please visit the NDF website for more information about HIBM and how you can help fund a cure

Neuromuscular Disease Foundation

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