New Blog Address

Please find me at my new home:

www.livingwithhibm.com

xx

Living

It's not like me to post two days in a row. I hesitated momentarily because so much of yesterday's post, especially the piece from Gabrielle, was about being able to share the difficult feelings without feeling obligated to wrap them up with a bow. But I kind of can't help myself.  It just so happens that last night was such an incredible gift...

I went with my husband to the Pharell/Bruno Mars concert at the Hollywood Bowl. In the days prior, I had felt distressed. Obsessing over why we spent all that money on a concert, especially at a venue that's so difficult to get to and by performers whom I like, but don't necessarily love. My rigid, rule-bound self kept reminding me that I only knew a few songs, so how was I going to really get into it?

And then we got there. Yes, it was hard to get there. Yes, my husband had to carry the back pack and the bag of food in one hand and balance me on his other hand as we walked. And yes, it was grueling getting up that hill, having everyone pass us on both sides, only to then have to climb the steps (without railings) to the 18th row of our section.  And no, I couldn't really side step through a row of people gracefully. But I was there. And it was incredible.

I had forgotten. I had forgotten what it was like to listen to live music, to feel it in a way that simply doesn't happen at home through a speaker. I had forgotten what a communal experience concerts are-joining together singing and dancing with thousands of strangers. I somehow had also forgotten how much I loved to dance (aside from in the comfort of my own home). I mean, I didn't forget, it's just been so long since I've been somewhere with music I can really groove to, that it hasn't really been an issue. But the music last night gave me no choice. I stood up initially but sat down soon after. I was frustrated that I couldn't do my usual moves. I couldn't clap while also moving my feet because I had to use my hands to hold onto the seat in front me so I wouldn't lose my balance and fall down. But then songs like, "Get Lucky" and "Blurred Lines" and "Hollaback Girl" (complete with surprise appearance by Gwen Stefani), came on and there was just no way. So I got back up and realized I could bend my knees a bit and lean forward and stabilize myself on the seat in front of me and then have my hands free. And I then proceded to spend the next two hours plus on my feet, in motion, with my newly adapted moves. And though my body was ruined by the end of the night, my soul was so nourished. I was there. And every time my mind momentarily wandered to the unknowns of the future, to thoughts of, "well, maybe you're so happy now because you can still do some kind of dancing on your feet, but what about if/when you won't be able to do that even?" I brought myself back to that moment-feeling the music, with the love of my life standing next to me and the great big sky full of stars above me- and I felt a kind of peace I haven't felt in a long time. In that moment, I didn't yearn for anything else. I felt free. I felt alive. And I felt grateful for being able to be truly mindful- present and engaged- in that moment. Because that is something for which I don't need my physical body to be strong...

Oh and I also feel grateful for my renewed love of going to concerts.

Survival

What does it mean to be doing "fine?" So often people ask us how we're doing and we offer that up as a simple, basic response. Sometimes without even thinking. A good friend recently asked me how I was doing and I reflexively said "fine" because after all, I haven't been feeling depressed, I haven't been crying and I haven't been living in my dark, scary "vortex." So, presumably, I'm fine. But as I thought about it later, in a more reflective and honest way, I realized that although I haven't been experiencing any overtly negative emotions, the truth is, I haven't really been "fine." At least not in a way that feels okay to me.

A few weeks ago, a fellow HIBM patient who has become a dear friend came to visit. Last year she moved to a new city for work, a city she chose specifically because of its world renowned physical rehab center. She shared with me what it had been like to be a patient there. She was disappointed. She said they spent too much time pointing out her limitations and not enough time focusing on all that she still can do and that was discouraging. She mentioned that they expressed some concerns about her lung capacity. Those two words lingered in the air. Lung capacity. She continued on about having been referred to a pulmonologist and getting expensive tests done, etc. And though I sat there calmly and listened, in that moment, my mind entered into a different dimension. Everyone knows about HIBM's debilitating effects on major skeletal muscles, but what most people don't know is its effect on smaller skeletal muscles, like the intercostal muscles between the ribs which are responsible for allowing our lungs to expand and contract when we breathe. This was not new information to me. When I was first diagnosed, (and before I knew what was good for me in terms of coping) I would go on-line and read about the disease and its progression.  I distinctly remember reading somewhere about late-stage symptoms, including difficulty with the cough reflex and pulmonary function. Though I had been able to process, to a certain degree, the muscle wasting stuff- the pure physical deterioration from the disease- I couldn't wrap myself around problems with breathing, a basic physiological function. That was something, I told myself, that I "could not handle." So I locked it up in a box and buried it way down deep. I told myself in a very rational, calm way that I had no need to even go there. After all, at the time I was only walking with a slight limp and potential breathing difficulties had to be decades away. Chances of me ever even getting that progressed were slim to none considering there's bound to be some form of treatment available by then. Right? And so for years, I never even let myself look for the box.

But in this past year, it seems the key has slowly made its way into my hands. I have started noticing, in the most mindful (observing without reacting) way, occasions when I've run out of breath: on Friday nights when I am singing the Shabbat blessings for my family, in the pool when I'm swimming laps, in my office when I'm leaving long voicemails for patients and in the car with my sons, when we're having a contest over who can chant a longer ohm. Noticing a new need to have to pause for air in between words or come up for a breath where I didn't have to before. Sure, I'll be the first to note that shortness of breath is a primary symptoms of anxiety. But this was all before I was feeling anxious about it. Before I imagined it could even be related. Then, in this past month, I heard not one, but two separate patients mention it. Neither of these patients would be considered to be in late stages of their diseases. So where does that leave me? How do I interpret/ process that?  How do I rationalize through this one? How am I to cope? 

My usual pattern is to let all the fear and anxiety wash all over me. Let it in, then up, then out. But not this time. No way. I was going to remain very rational and logical about it. I was not going to let my emotions get involved. Because once again, I "could not handle it." In fact, I was fine. If anything, I was feeling happy, energetic, totally in touch with all of the amazingness that is my life without HIBM. It started with wanting to see Billy Joel in concert at the Hollywood Bowl. So many people were posting on Facebook what a good show it was that I decided that it would be a totally fun experience and that I needed to go. In fact, I became rather obsessed with going- compulsively searching for tickets on-line and seeking out friends who wanted to accompany me. When that didn't happen, I moved on to needing to see Bruno Mars and Pharrel at the Hollywood Bowl. I  scoured Craigslist and though the tickets were outrageously expensive, I didn't care. I had to have them. I was going to carpe diem. Seize the day. Who cares that the Hollywood Bowl is an exhausting uphill venue and difficult to navigate? Or the fact that I really only know a few Bruno Mars songs? I then started thinking about my 40th birthday (in a year from now). I excitedly told my husband that maybe we should go back to Italy where we took 3 romantic, semi-spontaneous trips to during medical school. Wouldn't that be amazing? We should totally do that, right? Let's stay up tonight and watch a third Breaking Bad episode in a row. Let's delay sleep for just a little bit longer. Let's learn how to do stand-up paddling this summer. My quads are still strong and it would be a good work out, right?

Escape. Do. Go. Don't feel. Don't let it in. Don't let it get too quiet. Keep the noise volume on high. Have all the experiences now.  Distract. Maximize this moment. Take advantage. Fill the void. Don't think about it. Don't slow down. 

Coping mechanisms. They are how we try to keep the anxiety in our psyches at a minimum.  Strategies to avoid the emotional pain and discomfort. For some, it involves drinking or getting high, for others it's shopping or working or socially isolating. For me, in these last couple of weeks, it's been doing. Anything to preoccupy me, distract me from opening that box. It's exhausting and though I'm fully aware of what it is that I'm doing and the fact that it's not sustainable, the insight into it doesn't make it any easier. When life feels out of control, we do everything in our power to try to regain control somewhere, anywhere. The irony is that we often only end up feeling that much more out of control. Crazed even. On the one hand, I come down harshly on myself. Judging myself for not being able to hold the feelings in a more calm or measured way. After all, I tell myself, I am a psychiatrist.  I spend my days holding other people's difficult feelings and teaching them how to cope with them in healthy ways. And on the other hand, I have compassion for myself. When I step out and look in, of course I understand  why I'm doing what I'm doing. I'm simply trying to survive. I'm trying to take in and digest, little by little, the reality that is unfolding in front of me while still moving through my life and participating in it in a way that is maximally fulfilling and meaningful. A life that if full of so much awe and wonder. And punctuated by moments of such intense grief and pain. And somehow, I am handling it. We all do. It's how we are wired. To survive.

I started the above post yesterday afternoon, after I had finally let all of the feelings come up and out. One of the recipients of those feelings was my best friend, Gabrielle, whom many of you know independently or through my blog. I shared with her my desire to try to write about what's been going on for me but also my fears in doing so. As I was writing, I received an email from her. Below is what she wrote. It's what she wanted to say to you. And I think it's the blog post I was too afraid to write myself:

I met Jen for coffee today. It had been too long since we made time to just sit down and be together.

She recently told me that she thinks her intercostal muscles are getting weaker.  I had never heard of intercostal muscles, so I googled them. They are the muscles that run between our ribs that allow our lungs to expand when we breathe. I’m used to thinking about Jen’s loss of mobility. I’m used to seeing it. I’m used to hearing about that mourning. By “used to,” I only mean that it has become familiar. It never gets less painful – hardly. Familiarity is a weird beast when processing something that is progressively degenerative. Familiarity takes the form of structure and expectation. It shapes the grieving process. But it doesn’t make it easier. In fact, there’s a separate grieving about the familiarity itself.  But breathing. This feels unfamiliar in some way. Quite honestly, I stopped breathing when she said it. And then she reassured me, as she always does, giving me the reasons why it will be okay. And I drank them. And then she put it in a box and locked it up and a couple of weeks went by.

But as Jen always says, there is no real way to lock up truth. And so she opened up the box and took another look and shared with me today that the intensity of this reality, this progression, has made her turn to a familiar coping strategy.  In order to stay “fine,” by which she means get through the days without entering the vortex of dark feelings, she has been manically chasing down concert tickets, making plans to live every moment in some kind of carpe diem way that involves lots of planning and logistics and busy-doing-not-thinkingfeeling.  She tells me it’s exhausting.  That it feels “crazy” because she knows what she is doing. She knows she is looking for control in an out-of-control, almost compulsive, way because she is losing control of her body. 

She tells me that she wants to blog about it. About her breathing. About her coping strategy. About willing herself to walk across sand dunes and then taking a solo swim in the ocean to feel alive. Please stop right now and imagine what that means, what that takes for Jen. Have you drawn from a reserve you don’t actually have and willed yourself to a moment of feeling alive? I haven’t, so you should hear it from her. I asked her if she paid a price for it later.  She said without hesitation, “I’m always paying a price.”

She wants to write about it, to tell you, to tell you that it’s okay to find your own coping strategy and see it for what it is and survive another day because of it.  But then she tells me that she wants to give you a take-away positive message and she can’t pin that down.  She wants to wrap it up with a bow for you. And that’s the moment in our coffee when I start to cry. So I ask myself why that moment? I could have cried with her when she told me that it’s sometimes hard to take a full breath. But I didn’t.  Because I know, and Jen knows, that I will sit with her in that pain forever, hear it, feel it, but give her space to find her own voice in it. But when she wants to take care of you or me because maybe we can’t handle it, then I cry.

I ask her why. She says she worries that this is too much, that you won’t know what to do with it because it’s too heavy, that she will alienate herself from people because it will be too hard, too scary for you to take it in and then still know how to be with her. I hear her say that and I want to make promises about human nature, but I know she’s right. That maybe only a handful of people will know what to say or how to react or how to just be in that reality with her. And I’m not talking about comments on Facebook or emails. That kind of community love is beautiful and so important to her in its own way. But I’m talking about sharing space with her.  I’m talking about being able to sit in her pain without spinning it for your own inspiration. Be inspired by yourself.  Be inspired by resilience. But be open to sitting with Jen in her pain and just being with her. That’s what we all want, right? For someone to keep us company in a way that makes us feel heard and loved without the need to cover or hide or inspire or care-take. Just hang out and be. Jen’s really good at that.

Baby Steps

Those of you who have read my posts from the very beginning know that I was not always as open and honest and raw about my disease before I started blogging almost 3 years ago. In fact, for the first few years after my diagnosis, I couldn't even say the word "disease." I mean, I literally  referred to it as "the thing" and then later on as my "condition" and eventually, my "disease." But even though I could finally call it what it was, which was definitely a step towards acceptance,  that didn't necessarily translate into being ready to fully embrace it or move on to actually sharing it with others or speaking publicly about it. And I most definitely wasn't open to meeting anyone else with the disease or even reading or hearing about other peoples' symptoms. I have always allowed myself to go at my own pace when it comes to coping with HIBM. I have always owned up to the fact that for me, seeing other patients farther along the path of progression in a more disabled state only serves to increase my anxiety and interfere with my ongoing efforts to stay in the moment-every moment that passes- and not fast forward to what may come to pass. And that worked for a while. But eventually, that cost-benefit balance started to tip. The cost of not reaching out to others was outweighing the benefit of actually being able to relate to someone who truly understood my struggles. So I enlisted my sister's help. I had her post on what was then the HIBM Yahoo chat group on my behalf, with the sole purpose of trying to find me an age-matched, level of disease progression-matched, gender-matched patient. And she did. Her name is Harmony. I affectionately refer to her as my HIBM pen pal. She lives in Fresno with her husband and two school-aged kids and we are about the same age. I remember the first time Harmony and I spoke on the phone, rapidly firing questions at each other: What kinds of shoes work for you?  How do you manage with your kids? Do you find yourself staring at and admiring peoples's forearms and calf muscles? How much do you really share with your husband? Do you try to protect your family like I do? Since that initial contact (and through the ease of the newer Facebook HIBM community) Harmony and I have stayed in touch. We have been on a similar course of progression and we have both felt so lucky that it hasn't been as rapid as some others in our community. We even met for dinner one night in LA when she was here.

And then a couple of weeks ago, Harmony posted this on the HIBM Facebook page, "I am picking up my new wheelchair tomorrow. I am glad that I will have one and will use it for "long" distances, but I am also very discouraged by the fact that I need it." I read it just before getting the kids to bed. I had no time to stay with it. Nor did I want to. So I just went about my business. I didn't speak of it to my husband until late at night. It's such a delicate dance to do with a loved one, wanting to let them in because you know they want to be there, but also wanting to protect them and not scare them. Wanting them to be aware of the reality, but also wanting them to stay in whatever denial it is they're in that may be helping them cope. I didn't cry when I told him. Instead, per my usual, I shared with him all of the evidence that supports why I'm doing well and why I'm so lucky because my progression seems relatively slow and why I don't need to be considering wheelchairs at this time. And when I stopped talking to him, I had an honest, slightly different internal conversation with myself. I acknowledged  how much slower I am now, how much more often I lose my balance and how much more effortful and exhausting  it feels to "run" a few errands at Century City mall these days. Mostly, it's my inefficiency that gets to me. I'm a multitasker at heart. I don't do well with down time. I have always had a tendency to pack in a lot in any given amount of time. I thrive off being able to check all the boxes on my list and then some, finishing up with just a minute on the clock. But now that my body lags so much farther behind my mind, I am finding myself getting increasingly frustrated. Of course, I only let that conversation with myself go on for so long before silencing it.

But as is true of any truth, it doesn't change, it doesn't go anywhere and eventually, it will rear its ugly head in your reality over and over again until you are forced to confront it. And confront it I did.


A couple of weeks ago, I became obsessed with purchasing a pair of simple, basic, yet fashionable and therefore expensive (but I'll justify any cost in these situations) sandals that I knew I'd be able to wear with my braces. Long story short, I finally located them on-line and anxiously awaited their arrival in time to wear with an actual dress for Passover seder. (I used to love to wear dresses and skirts, but  now my usual go-to outfit is slacks with my required lace-up sneakers). I got such a boost just imagining walking through the fashion doors these would open up for me. I even got a pedicure in honor of the occasion. Once they were in my possession, I excitedly engaged in the somewhat ridiculous process of trying to slide my braces and my foot into a shoe that's usually not intended for such devices, enlisting the help of my husband. I quickly realized that it wasn't going to work with my carbon fiber braces but I was determined. I then pulled a different kind of plastic brace out of a pair of boots, ones that are intended for post-op patients on the orthopedics floor of hospitals who are doing rehab for their temporary foot drops. They are not meant for multiple wears and I saw how worn and ineffective they had become. But they are much lower profile braces than the big black ones. Unwilling to give up, the next day I called Hanger Orthotics (where I get my braces) and asked how much a new pair of those plastic braces would cost. I didn't have much time in the coming days to get across town, but of course, I raced over there on Monday after seeing patients and before leaving for seder. 

They brought them out to the waiting room so I could try them on and went back behind the door. No one else was there. I pulled out the sandals, so excited to see how life-changing they would be. I jimmied my feet into them with the braces. I stood up, feeling triumphant. I took a few steps. I didn't want to admit to myself that they weren't much more supportive than the ones that I had thought were worn in. I took a few steps more and then suddenly, I tripped. I fell forward, hard to the floor. That is nothing new. But when I put my hands out to protect me, as we all do so instinctively, they slid out to the side and I landed directly onto my face. My forehead, nose and chin felt the cold hard merciless concrete floor that lived just underneath the thin layer of carpet. As I lay there, momentarily stunned both physically (I wondered if maybe I had had a concussion) and mentally, I immediately wished someone had been there in that moment. Not a personal person, but maybe someone who worked there. Someone who could come to my rescue. Someone who could witness what had just happened. Validate how incredibly scary and terrible that was. And then I quickly shifted to feeling relieved that I had been alone. As I slowly gathered myself up, still in shock of the helpless, vulnerable physical position I had found myself in, I felt grateful that I didn't have to bear any more embarrassment and awkwardness than I already felt in my own presence. I sat up in a chair. Still in a daze. A few minutes later, they came out and asked for my credit card. I went through the motions, thanked them for having them ready so quickly and slowly walked out to my car. Once inside, I didn't reach for the phone to share with anyone in the way that I so routinely do. In fact, it was one of the first times that I didn't. Instead, I started thinking about all of the falls people had written about on-line (over the years it has been harder to resist reading). Gashes to the forehead requiring stitches. Being stuck on the floor at home and having to wait until someone got home to help them up. I wondered what I would do if I were seeing patients the next day because I knew it would bruise (and it did). I wondered how much worse it could have been and potentially will be in the future. Then I just felt a wave of foolishness. What did I really think? That these shoes were going to make me able-bodied? That if I could wear sandals and feel pretty one night, it would be as if this disease wasn't be so bad? Temporarily didn't exist? I didn't beat myself up for very long. I no longer invest too much emotional energy in such acts. I have compassion for myself in the same way that I try to help my patients have compassion for themselves. I gently reminded myself that it makes perfect sense that I went on this whole crazy mission in an effort to simply find a way to cope. I didn't cry as I drove home. I couldn't. I had to rush home to  my kids, get dressed and spend any spare time packing for our upcoming spring break trip up north. (More on that next time).

You may be wondering what I decided to wear that night. If you know me,  then you know that I did in fact did wear those sandals and braces to not one, but two nights of seder.  I definitely wasn't the most competent walker and I certainly had my moments of almost-falls, but I got to wear my pretty dress and show off my new favorite light blue nail polish. I am well aware that my stubbornness or vanity or denial might not make sense to some people. But I'm also even more well aware that my ability to pull off such stunts and the ability to even assert my stubbornness or denial is temporary.

I admire Harmony for her strength and courage. For confronting her reality head-on. For not letting her emotions interfere with her rational, practical decision-making process. For me, for now, I am just going to start by simply considering the idea of using a cane. Baby steps. At my own pace. 

An Open Letter to Equinox

Dear Equinox Westwood:

I knew I was fooling myself when I first took a tour of your gym 1.5 years ago and thought that it would be a good idea for me to join- you know, given the 2 flights of stairs just to get to the front desk and then another 2 flights of stairs to get to the locker room. But I just couldn't resist- the incredibly convenient location across the street from my office (and a mile from my home), the almost-never crowded pool where I could start doing the long put-off aquatic physical therapy exercises and of course, the unlimited access to Kiehl’s bath products.  I told myself I would build the stairs into my exercise routine and that even though there was no elevator from the pool to the locker room, I would manage. I wanted it so badly. I wanted to enjoy all of the benefits that other people do from belonging to a fancy gym. I didn't want to listen to the whispering voice in my head reminding me that I actually live in a different body from all those other people. I didn't want to miss out on yet another thing because of my disease.  And so I joined.

Of course, first thing I did was look into your elevator access. I was told there is one elevator in the lobby of the building that lets out on the gym floor. I tried it a few times, but quickly learned that it doesn't have its own call button.  This means that every time I pressed "up" and the wrong elevator opened (I think there are 8 in total), I had to wait to let that one close before pressing “up” again so I could hope for the right one to open.  I move at a slower pace despite having the same time constraints as everyone else, so all that extra waiting wasn't a feasible option.  I decided I would rather spend that waiting time holding tight to the railing and climbing up one step at a time to the main floor.

When I had inquired about access to the second floor pool on my tour, I was shown the wheelchair lift from the first floor. But I had a hard time believing there wasn't any access to the third floor locker room, so I contacted your manager and discovered that indeed there is a service elevator from the first floor gym (which houses the small workout area that I use) to the third floor. I was relieved and excited to have this option, especially since I take off my braces when I exercise and this would allow me to just walk a short distance without my braces to get to the elevator and go up to take a shower. Until then, I had to take them off to exercise, put them back on to go up the stairs, take them off again once upstairs to shower and then put them back on again to leave.  But when I asked for access to the elevator, you told me that you were not allowed to give out elevator key cards. But you said if I just walk back to the front desk (which is past the elevator) to alert one of the employees, they would be happy to walk back with me and call the elevator. As always in those situations, I tried to respond positively. I didn't complain.  I didn't want to seem unappreciative. I didn't try to help you understand that having to walk all the way back to the front desk while carrying my braces and my two gym bags in my hands is actually quite difficult and scary for me.  I didn’t tell you that how it feels to have people stare at me while I do it. I didn't tell you how awkward and uncomfortable it was to have to stand and make small talk with one of the random front desk escorts until the elevator arrived.  I didn't tell you that it's frustrating to have to stand there and wait until someone's free and able to pull away from the front desk to assist me.

Eventually I mustered the courage to share that this plan wasn't working for me and after some negotiating, you allowed me to exchange my car keys for the elevator key card (for the one day a week that I need it) when I entered the gym so that I could simply finish my work out and make my way over to the elevator on my own time and with some dignity. That worked for a while.

And then yesterday happened. A month ago when I asked for the key card, I was told that you didn't have it anymore. You told me that a member must have taken off with it because you couldn't locate it. I figured I could go without it and surely it would be available the next week. And then the next week came. And another. And another. No front desk key card. By then my strategy had been to try to make arrangements with the maintenance man whom I'd befriended who is the only other key card holder. I won't bother you with the stress that went into trying to make sure he was at the right place at the right time when I needed to go upstairs... 

Finally, yesterday, the fourth Wednesday that I showed up only to hear the same story, I explained that this had gone on for too long and the excuses were no longer acceptable. You apologized and said, yet again, that you're working on it and that for today, I should call the front desk when I'm done with my workout and you would come bring me the key card. Fine. Not surprisingly, when I called, ready to go up and shower before rushing to pick up my son from preschool, the woman at the front desk had no idea what I was talking about. I then got the attention of the maintenance man and motioned to him from across the room, but he motioned back that he didn't have it. I felt the anger and then the sadness came flooding in. Exasperated, I gathered my things and prepared for the climb.  

And then I saw you near the stairs. You asked if I had received the card from someone and I told you I hadn't. I told you that I didn't expect you to get what it was like for me, that I didn't expect you to know that I was once like you, able-bodied, that I never imagined I'd be this person having to nag for basic rights to use a gym and get to the locker room easily just like all the other members. I didn't expect you to understand how emotionally draining it is for me, being constantly reminded of my new disabled life and how much extra effort I’m forced to invest daily to keep it together. I didn't expect you to know that there's only so much I can take before I break down. And so I broke down. I walked away crying. I cried my way up each stair as I held onto the railing hoping today isn’t the day I fall, and then I cried even harder alone in the shower. I pulled myself together to leave and then cried when I saw one of my favorite teachers at the preschool and she gently asked me what was wrong. I cried when I got to my office and called my best friend and together we mourned the ignorance and lack of compassion that sadly seems to be more the norm than the exception. I cried in the afternoon when I met a dear high school friend for coffee and she told me she believed in her heart that my progression would never get so bad to the point of being severely disabled. And then I cried once more in the comfort of my own home. That cry was for the weekend I just had.  An amazing, 24 hour resort getaway, just me and my husband, that was infused with a quiet, scary, sickening awareness that my body's getting worse, that it's getting increasingly harder to get out of a hot tub and walk over to my towel or take a stroll on the grounds of a such a beautiful place. I get that there are worse problems to have. But there are better ones too.

Part of me wants to quit. Just cancel my gym membership and end this ridiculous but exhausting battle over access to your facility. This same facility that is sometimes painful to be in simply because I have to watch strong people getting stronger, while I get progressively weaker.  But if only it were as easy as cancelling a gym membership to get some space from my reality.  I know that I can’t quit any part of this – not your gym, not this disease, not my will to go on.  So I will fight on. But is it really too much to ask that you look at me, hear me, and then extend me enough compassion and human decency to make this even a tiny bit easier?

To my fellow HIBMers who know these feelings all too well...

That feeling you get when...

...you physically can't move out of the way (as in, just side step) when someone's trying to get by and he or she thinks you're just being rude.

...there's an earthquake and you realize you are completely helpless to escape in that moment (let alone to be able to run to your kids when they may need you most).

...someone who's ahead of you (and maybe in a rush) is being kind by holding the door open for you and you feel terrible because they don't realize how long they will have to wait until you hobble your way over to them.

...you meet someone for the first time, e.g. in your new book club and you don't know how, when or even if you should or need to reveal this "secret" or plain simple fact about yourself and your disability.

...you meet someone new, whether it's sitting in a parents' meeting at school or swimming in the pool at the gym and eventually you know you'll have to get up and out and display your disabled body and awkward gait for everyone to see and you are once again reminded that you will never have the luxury of just being you rather than you with the disability.

... you're at the supermarket check-out  and you realize you forgot to get something, but the line behind you is so long that you just accept defeat and plan to get it the next time. 

Then there's the feeling you get when...

...you hire a ski instructor (who's not part of the adaptive ski program because they happen to be shut down for the few days that you're there) and you tell him you feel bad that he has to constantly take his skis and gloves on and off and then bend down to attach and detach the special hardware on your skis every time you get on and off the lift and his response is, "Are you kidding me? This is nothing compared to what you have to deal with on a daily basis."

...you've spent the last 7 years dreading the day when one of your sons would eventually have to help you physically in some way and it turns out it's actually not a burden for him but rather something he does naturally and with such pride.

...your receive weekly deliveries of fresh pomegranates seeds from your father and step-mother which they've spent hours processing for you because they want to ensure you're eating enough antioxidants.
...your mother and mother-in-law drop everything when you say your husband's on an urgent care shift and you need help with the kids.

...your husband surprises you and takes it upon himself to have railings installed on the sides of the two steps in front of your house that have been giving you trouble for a while, because you couldn't bring yourself to deal with it in any productive way.

...you discover a cute new pair of retro sneakers to add to your collection of lace-up shoes only and you get a boost.

...your preschool mom friends regularly check in with you at an indoor gym birthday party to see if they can help you out in any way.

...you travel through your life and realize that your highs are incredibly, unimaginably high and the lows are tragically, painfully low, and you conclude that you'd rather struggle to hold onto and  experience  all of it than settle for the alternative.

I'll Go On

Today is international Rare Disease Day. And on this rare, very rainy Friday in Los Angeles, what was most on my mind all day was the fact that before HIBM, I don't think I ever once thought to consider the impact the weather can have on the lives of people with disabilities. I don't judge myself for it. It's just one of those things that would likely never enter into one's mind unless or until one is confronted by it first-hand. I am lucky to live in Los Angeles, where the elements almost never work against me. And so it is probably because of the infrequency of such weather that it hits me as hard as it does and did today.

As I woke up to the sound of pounding rain on the roof, one of my first thoughts was what shoes I would wear as I trekked around town, getting everything done that I needed to today.  I wondered if I would be more excited for the rain if it meant I got to pull out a pair of stylish, barely used rain boots from my closet. Or, any rain boots for that matter. (I have yet to find a pair of rain boots with a zipper down the back that would allow for me to insert my leg braces). When I arrived at my first destination and opened the car door, I took out my new umbrella in one hand while still sitting in the driver's seat (and while also holding my phone, talking to my sister in the other). I was running  late for an appointment.The rain was coming down hard. In my old life, I would just press the little button on the handle to allow for the umbrella to open and be ready for use. But in my current life, my right thumb doesn't have the strength to push it down all the way and so as I'm getting soaked in the rain with my car door open, I had to abruptly hang up the phone, put everything else down and then use both thumbs to open it. This may sound like a minor inconvenience to some, but in that moment I am made acutely aware that even the simplest of physical tasks are challenging for me. I am frustrated, angry and sad that I have to tolerate this disruption, both on a practical and an emotional level.

Of course, then there's the business of not being able to jump over puddles or step up onto a curb easily to avoid the small river that forms between the street and the side walk...

But I will stop there.  This is just a few minutes of the life of someone with a disability. And that's someone who is still relatively able-bodied.  And who has so much farther to go. I am still at the beginning. This is nothing relative to what may be coming. There are HIBM patients using canes, walkers and wheelchairs, trying to navigate their way through slippery sidewalks or worse, being forced to stay home and not get to participate in their lives the way they wish they could. There are patients waiting out in the rain for public transportation because they no longer have strength in the muscles needed to drive a car themselves. The ones who have become even too weak use hand controls so as to preserve some independence.

So, where does that leave us? Where does that leave me?

I recently read an article in the New York times titled, "How Long Have I Got Left?" written by Paul Kalanithi, MD, one of the chief neurosurgical residents at Stanford. He shares his experience of being  recently diagnosed with metastatic lung cancer. He describes what it's like to have to cope with confronting his own, very real mortality on a daily basis at age 36. In doing so, he refers to 7 words written by the playwright Samuel Beckett that have stayed with him since he had read them years ago as an undergrad: "I can't go on. I'll go on."

And much in the way that Paul Kalanithi was profoundly impacted by this simple phrase, I too have been holding it close to me. It has been incorporated into my armamentarium of coping tools. In fact, it's at the top of the list. Somehow, some way, we do it. We move forward. We endure the loss.  We find the blessings and joy in our every day lives to balance the depth of the pain.  We think we won't be able to handle the decades that are presumably ahead of us, but somehow the years pass and we're still doing it. Those of us with rare diseases don't have the luxury of knowing that there are billion-dollar pharmaceutical companies lining up to cure us the way people with lifestyle diseases, such as high cholesterol and hypertension do. We don't have the benefit of research institutes across the nation focused on curing our disease the way other devastating but at least much more common diseases do. We have to pull from all of the resources that we have within us. We have to cultivate our resilience in a way we never imagined we'd have to. We have to raise awareness. And we can never give up on believing that now matter how ultra-rare our disease is,  there will always be hope. No disease can take that away from us.

I can't go on. I go on.