Friday, November 22, 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.


Wednesday, November 13, 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



Saturday, September 28, 2013

The Jennifer Room

About a month ago, I received an invitation to attend a "Patient Day" reception hosted by Dr. Emil Kakkis, CEO of Ultragenyx. Ultragenyx is the biotech company that is currently in phase II of a clinical trial for a potential treatment to slow the progression of HIBM.  Dr. Kakkis was throwing a party to celebrate the patients of the various genetic diseases he has helped treat over the years and to honor his incredible staff. He was also going to be dedicating conference rooms named in honor of patients. I was told there was one named after me. I hesitated at first as I am always a bit protective of my emotional reaction when spotlighted in the patient role, but I decided to go for it.

Getting there yesterday was a bit frustrating, between forgetting my driver's license (oops), traversing the long distance across the airport to the gate (still not ready to be pushed in a wheelchair) and battling the bay area traffic once we landed. And of course, driving across the Golden Gate bridge-the same bridge I used to regularly cycle across when training for the AIDS ride. All the while I was questioning whether any of this was a good idea, especially since I left two sick kids at home.

Eventually, we made it the party. And I was definitely not expecting what came next. There were actually no other HIBM patients. The majority of the patients there were teenagers who, with their families, were reuniting 15 years after Dr. Kakkis and his team literally saved their lives with his novel experimental enzyme therapy for their condition, MPS1- a progressive and fatal childhood metabolic disease.  We watched video clips of these patients as children, we watched the segment of the 60 Minutes interview with Dr. Kakkis and the families of those affected, we listened to him memorialize those children whom he could not save and I sat there, moved beyond words, in the company of a couple hundred people who were also in awe of what they saw. Then Dr. Kakkis put up a slide with a picture of me on it. (He had mentioned when I arrived that he would call me up on stage to say a few words (!). And the description he used to introduce me was "physician, patient, mom, speaker, patient advocate and blogger." The first four I could identify with, but advocate and blogger?  It may sound strange, but I've never really considered myself an advocate. Maybe because I still hold onto some guilt about never really jumping at the opportunity to meet another HIBM patient (still learning how to cope with seeing what's ahead of me) or maybe because I'm not actively posting/sharing on the Facebook page the way other patients do or maybe because I'm not on the NDF board nor do I involve myself much with it aside from the gala speech. And then there's blogger label. I guess I associate a blogger with someone who does it more professionally, someone who has paid ads on their site, someone who isn't as technologically challenged as to only be able to use Blogspot, the most remedial blog site around. And so when I got up to speak, I still didn't feel like I was the woman in that slide. And then, when that part was over, they took me upstairs.

Upstairs is where all of the offices and conference rooms are. As they directed me down the hall to the "Jennifer" room- photographer and videographer actively filming by my side-I started to notice that multiple people in their purple Ultragenyx t-shirts identifying them as staff/ team members were gathering around me. I soon learned that they were the specific group of scientists and researchers who were dedicating their days and nights to working on finding a treatment for HIBM. They looked at me with such compassion and kindness. They shook my hands and gave me hugs. I then quickly discovered that for most of them, I was the first HIBM patient they had ever actually met. And then many of them shared with me that they actively read my blog and that I am an inspiration to them and their work. It started to become surreal. There we all were, gathered around this room with my name etched in glass and a plaque of my picture and a description of me on it at the headquarters of a biotech firm in Novato, California. And in that moment, maybe for the first time, I stopped wishing that I had nothing to do with this disease/this conference room/ this trip and started fully accepting and embracing that this is my life and that as scary as it is to let that in, it feels good to know that I can. It feels good to realize that I am doing something bigger than and outside of myself. It was the first time that I started to see the broader implications of what I do. I was standing in front of people who are dedicating their lives to working on this orphan disease and I was sharing myself with them. As I stood in front of them, I told them how incredibly grateful I was for all that they are doing- not so much for me- but for my boys. Not surprisingly, I became emotional (as I always do when I think about HIBM and the impact on my kids), but surprisingly, so did so many of them. I didn't know that you could find the combination of so many brilliant minds and open hearts in one place.

I would be lying if I said I didn't fantasize about returning again in 15 years-just like those MPS patients- watching the video footage of me crying and speaking in front of that conference room yesterday and celebrating the fact that I am still not in a wheelchair- thanking Dr. Kakkis and his team for all they have done for HIBM. I don't fool myself into thinking there's any guarantee that that's going to happen. But I am starting to believe that I have a purpose in this life with this disease. Not in some grandiose or meant-to-be kind of way, just in the way that I can help others understand who we are and what we experience and how desperately we are in need of help. To think that I would have missed out on this experience had I let my vulnerability win...well, it's a reminder of what I always tell my patients: growth and comfort are on opposite ends of the spectrum.

I dedicate this blog post to Dr. Emil Kakkis and all of those miracle workers in their purple shirts at Ultragenyx. You know who you are.





Monday, August 26, 2013

Tired

I'm tired.
I'm over it.
I feel like it's enough already.
I've risen to the challenge, I've tapped into my inner emotional resilience, I've gained invaluable coping tools and I've been given the gift of learning to truly appreciate what I have. 

But now I'm  ready to be done. Ready to be done with this disease.  I'm ready to go back to my old life where I wasn't "amazing" and insightful but rather just a regular person with regular life stresses. I want to remember what it felt like to care about losing 5 pounds to fit into my "incentive jeans" or to be able to watch a sad movie without having it hit me so hard because I relate almost too well to it.

I wasn't planning on blogging tonight, but I received a phone call today from the prosthetist informing me that my new, unbelievably expensive custom- made silicone AFOs have arrived from England and they are ready for me to come try on. I have been fantasizing about these  since I was casted for them a month ago. I have been fantasizing about the world of possibilities they may offer. They are essentially like tight silicone socks that you velcro onto your feet. And they only come up to your ankle. That means there is no hard black carbon fiber riding up the back of your lower leg. That means you can squat down, sit on the floor with your legs crossed, wear them under your socks and shoes and most importantly for me, walk around "barefoot." I realize I'm using the "you" pronoun, probably because I'm so terrified that they won't work for me or be the magical addition to my life that I'm hoping they will be. It doesn't feel safe yet to believe they will do all of these things for me. 

I am trying to be excited, but the excitement is competing with a sense of doom. Because for now, it's just a different kind of brace, but next time it might be an appointment to be fitted  for a cane, then a walker, then a wheelchair, a neck brace, hand controls for the car, railings for the shower and an adjustable bed to help getting up easier... These aren't irrational fears that I have. These are the realities for so many of my fellow HIBM patients. This is what patients post  about on our Facebook support group-questions about who has used what kind of assistance device, who has noticed arthritic pain in their joints, who knows how to get disability benefits from the government and on and on.

The worst part is, I am someone who is regularly forced into this intense, dark emotional space. That's not who I am. At least it's not who I used to be. I miss being able to be my happy, carefree self at times like these. I am still reeling from the joy that was my 20 year high school reunion over the weekend. Seeing so many wonderful old friends. Some of who didn't even know about the direction in which my life had gone. I guess I didn't realize that night how refreshing it was to have my HIBM self be somewhat anonymous. To be lost in my old self, hear memories about her, be reminded of her. I guess I just wish the high from that could have lasted a little bit longer...


Saturday, June 15, 2013

Dedicated to the one I love...

Recently my sister told me that someone who saw me speak at the last fundraiser thought I was "amazing." She then told me that this person said my husband was even more amazing. I wondered how he knew that without even knowing or talking to my husband, because of course, it is true. And I thought about it for a while. And in honor of our 10 year wedding anniversary yesterday and Father's Day tomorrow, I wanted to dedicate this blog post to Noah- my amazing husband and tireless father of our two boys.

When I fell in love with Noah, I felt like I had been catapulted into an altered state. As a psychiatrist, I can't really say it was a true mania, but it came close. I was euphoric and giddy and barely slept or ate for a week. I had found my true love. I felt a peace within me I had never known. I wrote in my journal that no matter how hard life was going to get, I knew it was going to be okay as long as he was by my side. I wasn't afraid anymore of anything. And then three years later, life got hard.

Noah was with me the day the neurologist told me I had a progressively debilitating disease for which there was no treatment or cure. He stood there next to me, holding me tightly in his arms as my world, our world, came crashing down. I told him he didn't deserve this, that he didn't sign up for this- all those things partners tell their loved ones when they know their own personal tragedy has become their shared tragedy. And he simply told me that this is what happens in life and it could be so much worse. He sensed that some family members were secretly worried that maybe he wouldn't stick around (because sadly and embarrassingly it's not unheard of in my Persian Jewish culture to run from pain) and he was insulted and offended. He listened to me cry and scream for countless hours, especially in the beginning, and never once tried to make me look on the bright side if I didn't feel like doing so. He held my sorrow so tenderly, for as long as I needed, without trying to hurry me along through it.

And that was just at the beginning. For the past 7 years, Noah has taken on more than he could have ever imagined and not complained once. I mean, not once. He is the one who has to wrangle the boys to get them in the car or chase the little one to get him to put his shoes on or carry all the gear and a kid across the sand when we go to the beach. He is the one who carries them when they're tired, transfers them asleep from the car and scoops them up off the floor when they cry. He is the one to climb up the stairs to go down the water slide with them for the umpteenth time and then come over and assist me getting out of the pool.  He is the one who puts out his arm for me to hold onto every time we walk anywhere.  No  matter how exhausting it may be, he does it, over and over again. But I know it's not just about the physical stuff.

When I sulk about not feeling attractive wearing my braces and sneakers with a dress, he tells me he hated it whenever I wore any kind of heels anyway. When I share my frustration of not being able to be more helpful with the kids or be more outdoorsy with him, he tells me that he could care less about what I can do physically,  just as long as I'm around for forever with him and can continue to be his wife and the mother to our children.  When I told him I desperately wanted another child and it was going to cost tens of thousands of dollars from our savings and not be very simple, he supported me without resistance, even despite the fact that he did not feel the same calling to have a second child since he grew up a perfectly happy only child. When we get into bed at night exhausted and I realize I forgot to take my ManNAc capsules, he is the one who tells me to stay put and then goes into the kitchen to get me a glass of water and my pills. And when one of the boys gets up in the middle of the night and calls out for us, he is the one who gets out of bed to tend to him, no matter how many nights in a row he's done it.

Maybe you think that this is just how any decent human being would act. But I will tell you that Noah is unlike any human being I have ever known. He is the reason I can live in this world in the way that I do. He is the reason I can still feel sexy and confident leaving the house with black carbon fiber rods covering the backs of my lower legs. He is the reason I can stand up in front of hundreds of people and feel safe sharing my story.  He is the one who reminds me that he didn't fall in love with me because I could jog and lift grocery bags. He and the family we have created together are the reason I continue to feel that I would not want anyone else's life but mine. Disease and all. Because when you share a true love with someone else, everything else is secondary. And though saying this isn't what gets people to donate at fundraisers, underneath it all, with Noah by my side, I do feel like everything will somehow be okay. Because so far, he's managed to make me feel like it is.

Thursday, June 6, 2013

Last night's fundraiser...




Last night I spoke to about 200 people at a Hadassah fundraising event. All of the money was going directly to fund HIBM research in Israel. 

Any time I am asked to speak about my experiences living with this disease, I have an immediate mixed reaction. On the one hand, I could and would never say no, because if I can contribute on any scale towards raising awareness and raising money towards a treatment or cure, then of course, I will do it. On the other hand, in that moment when I say yes, I know that it means in the weeks leading up to it, my mind will be focused on the disease in a way that will make it hard to think about other things, the regular stuff of life. I start to see my life through my HIBM lens and I don't have the option of looking away, because I know I need to speak authentically about my experiences. I sometimes think it won't take much out of me, because I figure I can just cut and paste from my blog and past talks. But of course, that never seems to be the case. Instead, I am up late at night, at times feeling bitter and angry that I can't just lie on the couch and watch TV with my husband after a long work day because I'm on the computer, digging deep into feelings about this life, which I sometimes still can't believe I'm living. I invest a lot of emotional energy in trying to figure out the best way to convey what it is like so that people can truly understand what we are all up against.


And then the night arrives. This time around, I was barely nervous. Surprising as that may sound, I chalk it up to simply having done this a few times and the slight desensitization that comes with repeated exposure to a stressful stimuli. One difference that made me feel a bit more vulnerable this time around was that I wore a short dress with a pair of sandals and my braces. I have spent years looking for non-sneaker shoes and it felt like a major triumph to be able to wear them out with a dress, despite the fact that it takes me about 15 minutes to maneuver my feet and braces into them.  I was actually feeling pretty good about having my braces fully exposed. But when I stepped out of the car at the valet and I saw the first few people staring at me, I wanted to run away. I wanted to shrink into nothingness. I stood there feeling naked. I wished I had worn pants or a long dress. But there was no turning back. I tried to arrive right before I was slated to speak, but there was still about 20 more minutes of cocktails. I decided to go find my seat. I walked up to the front row and sat down. I didn't want to be sitting somewhere farther back where I could see rows of people in front of me. I didn't want to have to nod or make eye contact with anyone.  And as people were filing in to take a seat and  the podium was being set up, I took a moment to take it all in and just like that, it all came crashing down on me. I started to cry uncontrollably. I  held my husband's hand and stared straight ahead, past the podium into the dark night sky. I tried to take a deep breath, I tried to think of distracting thoughts, but there was no match for what was flooding in: What am I doing here? How did I get here? Is this really my life? Am I really here to speak about living with this horrible disease? Are all these people really here for me tonight? Is this really happening? Is this really my reality? I was desperately trying to pull myself together before it was my turn to go up. And eventually, I did. But not surprisingly, as I gave my speech, there was more where that came from. Because of course, there always is.

Wednesday, May 8, 2013

Cake

I haven't posted in a while.  That could mean one of two things: either things have been fine and I haven't really felt an acute need to share emotionally intense thoughts or experiences or things haven't really been fine and I've been trying (with all my might) to avoid confronting difficult feelings by detaching from all things HIBM, thereby making it difficult to reflect honestly and openly with myself about how it's affecting me (let alone share it publicly). I wish I could tell you it was the former. In fact, until this past week, I think I convinced myself it was. Denial is such an incredibly powerful defense mechanism. It allows us to avoid, to suppress, to pretend. Its sole purpose is to decrease one's level of anxiety. It helps us guard against feeling vulnerable and scared. But a lot of emotional energy is invested in trying to not let those difficult feelings in. And that is why it's not always the healthiest nor  most sustainable method of coping. Because there's only so long one can hold out in the fight against one's reality. The energy required is too great. It always seems to win. And when it does, because there is so much that had been building up,  the defeat is that much more painful and draining.

Last weekend was my son's 6th birthday party. There were 25 kids and even more adults. Every year since he was born, I have made a homemade birthday cake. I've done so for a variety of reasons:  my  new-found love of baking since having kids, the desire to try to hold on to a vestige of the good old days when birthday parties were simple and homemade in their entirety and because I simply enjoy the satisfaction that comes with overcoming the personal challenge of baking a cake. So this year, I had the plan all set. But then, a few days before go-time, I got sick. The kind of sick where one should be resting in bed, trying to recover so as not to prolong such an unpleasant state. But that was simply not an option for me. No way. I had my plan. I had been gearing up for this and nothing was going to come between me and that cake. So I spent the majority of the weekend in the kitchen, exhausting myself but not allowing myself to pause to question my motives. Not allowing any space to wonder why I was being so stubborn.  I had fleeting moments (like when my arm was fatiguing from having to manually double sift the cake flour) of awareness that this was not rational, but I had to just march forward. I knew it was illogical, but I couldn't help myself because it was coming from a purely emotional place.

The party came and went and the cake was a success. But my physical state definitely was not. And the  boost I expected to feel as a result of all of my efforts was missing. I kept searching for it. Waiting to feel good, relieved, satisfied. But instead, I spent that night crying. I felt foolish, stupid. Because only then was I able to really reflect on what I had done, what was really operating behind the scenes, why I had pushed myself so hard. I called it stubbornness, I chalked it up to a joy of baking. But what it really was was desperate attempt to fight off the fears that haunt me during any kind of milestone event. "How many years will I even be able to do this? What if next year my hands are so weak that it won't be a choice for me? How much longer until I won't be able to shuffle around from point A to point B?"At one point, I pulled up an office chair on wheels to the kitchen counter because it was hard to stand for so long. I later realized I was essentially using a makeshift wheelchair. More thoughts from my subconscious whispering to me-"I don't want to ever look back on these days and remember a time when I could have been so physically capable of doing something so simple like bake a cake for my son and I didn't." In those moments, I will do anything to  resist hearing those thoughts. So I shut them out by doing. Doing more and more. Not listening to my body that is begging me to rest. Not listening to my husband or sister who tell me to just go buy a cake from the supermarket. Trying desperately to not let my reality interfere with simply wanting to feel a pure and unadulterated joy around my son's birthday. The "logic" goes something like this, "If I can still do things like bake a cake, especially when I'm under the weather, then I guess this disease isn't so bad."  Those are the only times that I get to pretend and deny. Because the times that I can't, the times when reality is shoved in my face, they are too frequent and I don't get to control them. Like when I had to line the bottom of my sneakers with duct tape just to enter inside the indoor gym at my son's party because it was too difficult for me  to take my shoes on and off  like everyone else because of my leg braces. At the time, I barely gave it a second thought. Because how could I? I can't afford to feel that kind of vulnerability out in the world. I have to seal over and move forward. But it's still there.

It's there when I have to walk across the street from my office every 6 weeks for a meeting with colleagues and realize that I'm ending up progressively farther and farther away from the curb where I need to be when the light turns red. It's there when I now have to shuffle up the small incline to enter into school to pick up my son whereas at the beginning of the year I didn't need to. It's there when I see people stare at me more often (braces covered by pants) or even at all in a way that didn't used to happen. During those times, I don't get to avoid confronting the reality and feeling the pain that HIBM has brought upon my life. I don't get to control any of it. The objective measures don't lie. I don't get to use my usual coping tools against the evidence. I don't get to hide from it. I am fully exposed without my armor and it is exhausting and hard and I hate that I have to live it.  And that is why I have to continue to work towards getting to a place of true acceptance. Because the reality is, I won't always be able to try to bake away the sadness.

Wednesday, February 27, 2013

Rare


Today marks the 6th international Rare Disease Day, a day dedicated to raising awareness of rare diseases among patients, non-patients and the scientific community. It is a day that would never have been on my radar had I not been diagnosed with HIBM almost 7 years ago.  I spent some time thinking about what I could post on my blog to mark this day. And to be honest, I wasn't coming up with much. So when I mentioned this to my friend Gabrielle (you might remember her from a posting last year), she asked if she could post something for me. What she sent me tapped into something very emotional for me. Living with HIBM doesn't just mean struggling with my own physical limitations and losses, but also working through feelings of guilt and discomfort around what I sometimes believe to be the burden of my disease on those around me. I am physically dependent on others and therefore needier of them in a way they will never be of me and sometimes that imbalance is hard to hold. When I really let the raw honest feelings in, I am aware that since having HIBM, I sometimes do not feel as valuable as I once was or maybe could have been. That somehow HIBM has diminished my worth or potential. I don't share that here to invite validation that I still have "something to offer" despite my disease. I share it because as I reflected on what Gabrielle wrote, I wondered if maybe it can feel balanced. Maybe no matter how rare, ugly and disabling this disease is, whether I am walking or in a wheelchair, I can stay grounded and at peace within myself and always be able to share that with everyone around me. 

So here's what she wrote:

Jen and I have a Rare Disease Day tradition of going out for drinks. I know it's a hard day for her, another marker that another year has passed without an approved treatment or cure for this ultra-rare and terrifying disease that is slowly stealing her mobility.

But this year, I asked if I could also write a blog post for today. Admittedly, I feel a little shy about it. But you see how honest Jen is willing to be about her life with this disease. So if I admire that, perhaps I should get real too.

Jen and I have talked about what this disease means for our friendship. It has occurred to us that the arc of our friendship has gone at warp speed, in part, because of the disease.  There is a raw pain to it that necessarily, at least for us, has meant that we spend time in darker places than some friends might go. But also in a different way that has nothing to do with darkness.

I often think about a day last summer when Jen and I went to the beach together with our families.  When we planned it, we talked about going swimming in the ocean.  I usually just go in up to my knees with my daughters and run out holding hands with them when the waves come in.  I always have some lame excuse for not going in all the way – it’s too cold or the waves are too big.  But on that beach day, Jen looked at me and said, “so, are we going to do this or what?”  And what could I say?

So, I want you to picture it.  To get to the water we had to walk over the sand and down a pretty steep sand hill.  Walking on the sand is, of course, difficult for Jen.  I’ve heard her liken it to walking in quick sand.  In fact, she spent part of the beach day wearing her sneakers on the sand so that she could wear her leg braces.  So when we walked down to the water together barefoot, Jen held onto my arm.   Sometimes she calls me her human cane.

We got to the water and stood there ankle deep, clinging to each other.  Even the shallow waves can knock over Jen.  Some young girls with boogie boards were playing near us and they started to ride a wave in right toward us.  Jen said, “um, should I tell them that I literally can’t get out of their way?”  I thought about how real that was – how Jen could not move out of the way to avoid a crash into us.  The girls saw that we were not going to move and they were able to avoid us.  We took a few more steps in.  The water was cold and I was having my usual thoughts about bailing.  But then Jen looked at me and quickly announced “I’m going in with or without you.”  She let go of me and dived under the waves.  I paused for a second and then I dived in after her.  Then we were past the waves, swimming together. We looked back at our husbands and kids eating lunch on the blanket up the hill. It was one of those perfect LA days. We swam for a while, so happy to be together just talking about random life things.  I thought, why don’t I do this more? It’s ridiculous that I live 15 minutes from the ocean and I never really venture in.

When it was time to go back in, Jen started laughing and said something like, “don’t worry, but I’m going to get pummeled by the waves when we go in. I always do.” Her legs get weak in the water and getting back is kind of an adventure because she can’t really stand up in the ocean. Jen motioned for her husband to come down to the water so he could pull her out at the end.  I’m pretty sure she laughed the whole time, so then I was laughing and her husband was laughing.  I saw a woman staring at us.  I caught her eye and just gave her a big smile and she looked away quickly.  We walked back up the hill to the blanket – this walk was even harder for Jen because now her legs were weaker from the swim and it was uphill. We were so pleased with ourselves. We promised to do it again and we will.

The next day I told Jen how much I loved that swim.  I explained to her that when she holds onto me, I feel like I could just as easily be holding onto her for a different kind of balance. And so when she asked me recently whether the disease impacts our bond, I thought immediately of that day.  It is true that when we are close like that – in some way it is the disease that makes us hold onto each other in that closer way. But then we also get something else because we are closer. It’s like when we go out together and I drop her off at her house.   I want to walk her to her door.  “You don’t need to do that,” she says.  And I know that.  But I say something like, “but I want the dramatic hug at the door.”  I wouldn’t walk Jen to her door if she didn’t have the disease and if I didn’t want to be sure she makes it safely up those two steps that lead to her house.  But separate from that, I just like the hug - for me.

Let me be clear, none of this makes this disease any less terrifying. Nothing makes it less painful or less real. It’s not about me and some ocean metaphor. I get it. But Jen asked me what this awful disease does to our bond. I suppose it’s hard to know exactly because it’s never separated out from how we get through this life together.  But somehow the question takes me to the ocean.  The holding onto each other, the letting go, the diving in, the coming back in, the laughing at the waves.

“If you help me stand in the water,” she said, “we can swim together.”

I would not have gone in without Jen. And, of course, that has nothing to do with the disease. But maybe only in the way that Jen and I have this deeply mutual way of helping each other stand up or swim. And sometimes we will need that in the same way and sometimes we will need that in a different way. I can be her human cane and she can be mine.  And sometimes it will be balanced and sometimes it won’t be and that’s okay too.

Thursday, January 3, 2013

Resolution

By the time I was diagnosed with HIBM, I had gone from being able to run to only being able to jog to walking with a minor limp. So, I knew my days of engaging in other, more strenuous outdoor activities were numbered.

One of the activities I crossed off my list early on was skiing. Having grown up on the East Coast, I had skied my whole life. When we moved out to California in 1986, the frequency with which I skied diminished (some high school ski trips here and there) and by the time I was in college, I went only a couple of times. During those last few times I skied, I came to the realization that I just didn't love it anymore. It was hard to admit to myself, but the truth was, it wasn't much fun to be freezing with a cold windburned face and to have to schlep the gear and walk around in ski boots. I romanticized just sitting inside the ski lodge, sipping hot cocoa, taking in the scene.

So, when I was diagnosed and realized I wouldn't be able to ski anymore, I almost felt okay with it. I reminded myself  that I wasn't rationalizing when trying to comfort myself with the thought, "No major loss, I didn't really enjoy skiing towards the end anyway. It'll be fun to cozy up and read a book while my family is out braving the elements."  

And then I had a son. The first time we took him to the snow, he was 10 months old. We stayed with close friends in a beautiful cabin and everything was picture perfect. But it was the first time I had confronted the snow with my disease. And it was hard. I cried to my husband at night, trying to understand what the big deal was since I didn't really love the snow anymore any way, right? But for obvious reasons, that didn't help.

Then we went back the next year and this time, we took the boys up and down the gondola. They were thrilled. At the top of the gondola, we stepped out onto the bunny slope where kiddie ski school was being held and all-of-a-sudden, just like that, it hit me. It was one of those epic ski days- invigoratingly cold but sunny, clear blue skies and fresh powder on the ground. I saw those little kids snow-plowing down the mountain and all I could do was imagine my son doing the same in a few years. And I was no longer content with the idea of drinking hot chocolate in the lodge. I knew I was going to want  to join him. I was going to want to share in that joy with him. I wasn't going to be satisfied with watching from afar and waiting for him at the bottom.  But at the time, I didn't see-or didn't want to see-any way around it.

Fast forward 3 years. Two weeks ago, we went to Big Bear. It was my 5 year old son's time to learn to ski. In the last couple of years, I had done my research and learned that there are adaptive ski programs at most mountains for people with disabilities where they can put you in a sit down apparatus and take you down the mountain. When I first heard about it, I could barely listen. But with enough processing of  the idea,  I told myself that if I really wanted to ski with my husband and sons and if I didn't want to have to mourn yet another loss, then I was essentially going to have to get over it and do whatever I needed to do. I was going to have to work through the feelings of disappointment, sadness, anger and embarrassment, not just for myself, but for my family. So I somewhat spontaneously made a reservation for an adaptive ski lesson and decided I was just going to go for it. 

I walked into their little shack at the base of the mountain, looked around at all of the special equipment and gave them my name. I only let myself take in the scene for a fleeting moment because I knew I couldn't afford to be too in touch with the feelings that were being stirred up. I tried to explain as best I could what my limitations are, telling them I needed some sort of sit down ski. But all the while, I was checking in on my body. I kept bending my legs slightly, shifting from side-to-side, thinking about how I can still do the stationary bike and elliptical machine at the gym and wondering if maybe I could give stand up skiing a try. I kept trying to quiet that voice in my head; it felt irrational, emotional, and even reckless. I countered it with reminders that the issue isn't even if I still have the muscles to ski, but rather, what I would I do if I injured myself? I do not have the capacity to rehabilitate as others do and how would I ever forgive myself or justify something so stupid? But the two veteran ski instructors who were assigned to me- Spider and Jeff- only encouraged me when I shared my concerns. They said I should try one run (with a special piece of hardware that connected the tips of my skis together so I couldn't do the splits) and if I had a hard time, then they would teach me how to use the other apparatus. I appreciated their support, but knew they didn't really know what I was risking. I didn't know what to do.  I heard my dad's voice in the back of my head, the one I heard all those years growing up when on the slopes and about to try a jump: "don't try to be a hero."

I decided to step outside the shack and call my physical therapist who has become a dear friend. She knows my body better than I do. We agreed that the stiff ski boots would act as leg braces and since my quadriceps are still strong, then in theory I should be able to do it.  There was no mistaking her concern, but I knew she could sense the excitement in my voice and wanted to support me.  I stepped back inside. I felt  giddy and terrified. Spider and Jeff were eager to take  me out. The last thought that lead me to clip into stand up skis, grab my poles and allow them to pull me along to the lift was, "I don't know if or when this opportunity will present itself again in the future. I don't want to regret it if I don't try to squeeze in under the window before it closes." 

I will stop writing now and let you watch the rest. But I can tell you with certainty that That Day, the day when I got to ski down the mountain alongside  my husband and son after thinking for years I never would, the day my son got off the chair lift with me and said, "Don't worry Mommy, it's easy, I think you can do it!", the day I overcame my fears and decided to allow myself to try to be a hero even if it meant not making the most rational, safest decision....well, it was one of the best, most exhilerating  days of my life.