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.

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.

The Vortex

Today I had an appointment with a new orthotist (a person who fits one with AFOs/leg braces).  I wanted to find out if there were any newer, better options for me. If perhaps there was a new design that could be just as effective but perhaps somewhat more aesthetically pleasing than my black carbon fiber ones that come up just below my knee.

I don't know why, but I thought the appointment wouldn't be a big deal. I have been wearing leg  braces for a few years  now, so I figured the shock and trauma that I experienced in that very first visit (or even subsequent visits) wouldn't revisit me.  I figured by now I had become somewhat desensitized to the whole process. The process of sitting in a waiting room with people over twice my age (like the 80 year old man next to me today who needed AFOs post-stroke), of walking into an exam room with a clinician who of course has never heard of HIBM and who is somewhat mystified and in awe of my array of random areas of weakness, and the process of having to repeatedly answer, "I can't" in response to his requests to lift up my  foot or rotate my ankle. After examining me, he left the room to get a few samples of different braces for me to try on. As I sat there alone, a wave of disbelief came over me. I wondered if this was really happening to me. If this was really my life. If this was really how the rest of my life was going to go, only worse of course because my options would only become increasingly limited. And then I felt it coming. I knew I was slipping into the Vortex. That's the word I use to describe the space I'm in when I let the reality of this disease in, fully and completely. Sometimes I am just powerless to fight it. There is no positive self-talk I can do to try to protect against it. There is no way to avoid getting dragged into it. It's too big, too scary, too real.

When he came back in the room, he asked me if I had heard of electrical AFOs, where an electrode is placed on your leg and stimulates the weak muscle to contract for you. I told him I didn't think I was a candidate because I didn't have enough muscle tissue left and he said in his happy-go-lucky way, "Well, let's give it a shot, it can't hurt." So, he tried it. He kept cranking up the voltage. And though I felt the zap of the painful electrical impulse, it didn't translate into any kind of movement. I stared straight down at my limp, lifeless leg resting in his hand.  He could not awaken it. He eventually gave up telling me that he had turned it up so high that if it had been on his leg, "it would have kicked up to the ceiling." I smiled politely and said I figured as  much. I knew he had no idea how emotionally painful that little experiment had been for me. I knew he was only trying to be helpful. He couldn't know that he had added another little tombstone to my cemetery. It was a loss I had experienced a while ago now, but I was mourning it all over again.

By that point, I just wanted to leave. It turned out there was no newer or, as was my wish, magical brace that was going to change the fact that I have this disease and that I will be living with it in some capacity for the rest of my life. I walked back to my car, parked in the disabled parking space of this random parking lot and  closed the door. I let all the feelings in. I sank to the bottom of the Vortex. I stayed there for a bit. I didn't try to reconstitute myself before I was ready. I didn't try to think of the smiling faces of my children or all of the blessings in my life to make me happy. I gave myself permission to just be where I was.

Eventually, I got back on the road and came home to those joys. And I am slowly climbing back out.

But if there is one thing that I have learned in all of this, it's that the only way I can live most of my life outside of the Vortex is if I allow myself to sometimes fall into it.

One Day

People often tell me that I'm an inspiration. Or that I'm brave. When you see me, I am happy, I am positive, I am active and busy. I work hard, I'm grateful, I'm a mom taking care of two energetic young boys. And it's true, I am all of those things. But brave and inspiring weren't a choice. My alternative to brave is to give up. My alternative to inspiring is to fall into a dark abyss of anxiety and fear.

If you admire it - my happiness, my bravery - I wonder if you should know more about the elaborate coping strategy that goes into maintaining it. I wonder if you should know how hard I fight for it each day that I live with this progressively debilitating disease. I recently came across a video entitled, "Sh*t people say to disabled people." As I watched it, I was again reminded of how little people understand about what it means to be disabled.

Maybe if I share some of the small moments that make up my every day, you will see how insidiously this disease finds its way into so many of my thoughts, how I must confront it with every movement I make. These are the invisible moments that you could never really know unless you live in this body.

Wake Up. I'll start with the morning since waking up and falling asleep are two of
the most difficult parts of my day. I rarely wake up having slept all night,
uninterrupted. Whether I wake up in the middle of the night because a part of my
body has fallen asleep (because it doesn't have the strength to spontaneously
shift positions) and I have to vigorously shake it out or because I simply can't get
comfortable no matter how I try to strategically place the pillows, I usually wake
up feeling exhausted. The first thing I do is take a mental inventory of what's still
working and what's still not working. I try to wiggle my toes though I know it's
futile. Just a wish that I fantasize about, and test out, every day. Then I see if I
can make a fist with my left hand. Again, same outcome every time. I don't think
there's been a morning in the last 6.5 years when I haven't woken up with at
least a momentary panic. Every morning, I have to talk myself down from the
anxiety that sets in as I wonder how I could possibly wake up every morning for
the next 50 years in my body. And not just this body, but the one that awaits me
in my future. Then I hear one of my boys and I know I have to drag myself out of
bed. I place my hand behind my head because I have learned the hard way that
my neck no longer offers my head the strength necessary to support it when
sitting up. It only causes strain if I try. I put my feet on the floor and stand up. Half
of the time, I fall right back onto my bed because I can't maintain my balance. Or
my muscles feel so tight that before I try to take a step, I hold onto my dresser
and try to stretch out my calves. And then, finally, I take the first of the many
wobbly, uncertain, anxiety-provoking steps that I will take throughout my day until
I return to my bed at night to start all over again.

Get Dressed. I miss my pre-disease life when the only real “stress” of getting dressed was about what I was going to wear and whether or not it looked good. Now my time in front of my closet is spent wondering what sneakers I will pair with my leg braces and how much walking I anticipate doing. I have to make an informed decision as to whether or not it’s a day I’m up for the stares and whispers that come from visibly wearing my braces with a skirt or over a pair of jeans or whether I should just wear my wide-legged pants to hide from the world. Once I decide on the shoes, I have to take the insoles out of them, get my braces out from the other shoe and then slide them into the chosen shoe. Often times the velcro is stuck together in such a way that I don’t have the hand strength required to peel it apart.  If I’m lucky, there’s someone around to help. Otherwise, I have no choice but to just use my teeth. Once I get the brace on, I have to tie my shoes. It’s no longer a mindless or quick task.  I can no longer bend my left index finger and my right hand is increasingly uncooperative, so I have to use my other fingers to tie my shoes.

Navigate My House. Although I may complain about my leg braces, I don’t know what I would do without them. We have a love-hate relationship. They take me where I want to be, albeit slowly, but they demand a high price. The carbon fiber brace rubs against the back of my heels and the velcro strap around my shin causes soreness. Sitting with my legs crossed is almost impossible as is getting up from the floor. So I usually leave them off when I am at home to give my legs a break. But when I am without my armor, the fight is harder. Everything becomes even more of a struggle. Whether I’ve left my cell phone in another room of the house only to hear it ring from down the hall or whether my son is on the changing table and I discover his pajamas are in the laundry room, I have to brace myself for the journey. And more than that, I have to continue to increase and practice the level of my frustration tolerance because I simply do not have a choice if I want to move forward in some capacity.

Go To Work. Eventually, I make it out of the house. I fish around in my purse for my keys, cursing the fact that I can’t get a good grasp on them once I locate them. I get into my car. The first thing I usually like to do is put the window down, which is relatively easy. But putting it back up is a different story. I have to try to hook my weak fingers under the controls and lift my entire arm up to get it going. Sometimes I reach over with my right hand to do it and sometimes I just skip the fresh air all together. Once I get to work, I drive into the parking lot praying that one of the three disabled spots will be available. I walk down the hall as quickly as I can, hoping not to encounter any patients and once I get into my office, I close the door behind me, relieved that I made it once again without getting caught. (I still haven't quite figured out how I want to navigate my professional and private life in that dimension).  It’s not comfortable to wear my leg braces, so I take my flats out of my desk drawer while pulling off the straps of my braces, roll down my knee high socks and hide them all behind the trash can

under my desk. And then, I am officially transformed. I am more comfortable. This strategy works well until I inevitably need to go to the bathroom in between patients. It’s too labor intensive to switch back out of my flats and into my braces, so I brave the walk back down the hall to the bathroom defenseless. Only having the walls of the hallway to steady me and a hope that my feet will clear with my steps so I don’t trip and fall. Once I make it back to my office, I can resettle myself. Until it’s time to go home.

Coming Home. My house has a few shallow steps out front.  It seemed impossible to find a house with a completely flat entrance. So when I get out of my car and reach those steps,  I have to put down any bags I’m holding, not just because I feel the burn in my muscles from carrying, e.g. my purse, on my shoulder, but because I have to focus all of my efforts on putting one foot on the step, balancing it there and then slowly swinging my other leg around to put my next foot on the step. And then repeat for the next step. It’s always a bit precarious, and I’m always hoping that this isn’t the day that I fall backwards. Eventually, I make it to the front door.  Now I have to use these fingers to get the key into the keyhole.  But then I am soon greeted by the smiles of my boys. And as joyful as it is to be with them, now begins the next challenge of my day - trying to kneel down to their level, trying to lift the baby up, trying to get to them before they fall off whatever they might be climbing.

I wonder if you are starting to find this a little tedious.  You might not be interested in the strategic thinking that goes into rolling up my car window or putting on my leg braces.  And here we are at dinner time.  We haven’t even talked about trying to cut up vegetables or take a pot off the stove.  We haven’t talked about trying to cut up my kids’ food or open a Ziploc bag.  We haven’t talked about how my muscles now burn because it’s the evening and I’ve been maxing them out all day on the most basic tasks. 

This is my day.  This is my world.  I would love to spend it thinking about something else, but I can’t.  And this is today.  I don’t know if tomorrow might be a little harder.  And what about next month? And what about next year?  How I will be able to continue living this life in a progressively weaker body? 

I usually save those questions for the nighttime, when I’m back in my bed, before this starts all over again in the morning.

Four blocks

Today was my son's first official full day of kindergarten. A day filled with anticipation, excitement, nervousness and unknowns. And not just for him. If you've had the experience of launching a child into the post-preschool world, then you are familiar with the anxiety of a parent who is hoping for the most positive experience for his or her child. But for me, as with most new experiences in my not-so-new-anymore HIBM life,  there is another dimension to my anxiety. The sadness. There is a period of mourning that always has to take place with new situations. I have to confront new losses and thereby disrupt the homeostasis that I had previously worked so hard to maintain. I have to be reminded that I only get to feel happy and comfortable in my routine for so long.  This wonderful milestone of kindergarten for my son and our family, this "first" for him,  is unfortunately at the bottom of a long and growing list of first losses for me.

When I was first diagnosed  with HIBM, I couldn't stop myself from thinking about the future, agonizing over how different my life was going to be compared to how I imagined, expected, assumed  it would be.  I would think about things that were so far off in the distance, things that had no relevance to where I was at that moment. Things that people would tell me to not worry about, but that I would dread nonetheless. It's one thing to mourn them in advance. It's a whole other thing to mourn them in reality.

Last summer we moved to a new neighborhood with an excellent public school so our son could start kindergarten there. We were lucky enough to find a place four blocks away from school. What a dream come true- being able to walk to school  with all the kids in the neighborhood. For the past year, I could simply enjoy that dream without having to try to actually live it. But as the start of school approached, and as our son's excitement over walking became evident, I started to feel the panic set it.  I have somehow been able to live the last 5 years of my life in such a way that it hasn't interfered too much with his. Or at least, he was too young to see how it was interfering. I've tried to keep his life as "normal" as possible. Of course, it helps that he's not that into sports (not yet at least), so I haven't had to confront those old fears  of how I would keep up with him running along the soccer field, etc.  But right now, he's not asking for much. But even that is too much. He's asking just to walk to school like all the other kids do. So, when he asked to walk yesterday, my rational logical self could have immediately explained that because I have trouble walking, it's not an option for us (at least when I take him) and that I have already talked with the wonderfully supportive people at the school and they have arranged to make disabled parking more accessible for me. But, my emotional self immediately made room for a bit of denial and started wondering if I really couldn't do a measly 4 blocks? I mean, after all, I do go to the gym once a week and do the bike or the elliptical. Perhaps I could pull it off?  So, with that can-do attitude, we walked the first day.  Right alongside of everyone else. Sure, I was slower than others and sure, I was fatigued and a bit sore, but I told myself it wasn't that big of a deal. Then I walked home and wondered whom I thought I was kidding. It was a big deal. It wasn't easy for me. But I still wasn't ready to give up yet. I decided this morning that we would drive halfway, park and then walk the rest. But even the slight incline up the last block was a challenge. And then I finally  had to accept that  it wasn't going to work for me. And that I wasn't going to be able to indulge his simple, innocent request to walk the few blocks to school.

It may not seem like such a big deal, it may seem so minor in the grand scheme of life, it may be such a "first-world problem" when there are families who have to commute over an hour to school, but for me, it's adding another loss to a long list of losses, in permanent ink. The visual that comes to mind for me is staring out onto my very own cemetery with lots of tiny little tombstones labeled with the various losses I have endured:  "running," "walking without braces," "hiking," "slipping on shoes and heading out the door"  "playing guitar," "playing chase with my kids" and now "walking my son to school." I want to turn away from it, but with each tombstone that's laid down, I know I have to mourn. The hardest part is that it's no longer for myself. I can no longer shield my son from the fact that I am different. And that he will be different,  and sometimes limited too,   because of me. When he was a baby, I used to dread him growing up and being angry with me or embarrassed by me, but then I saw how he simply and easily just accepted it.  I will never forget the day we got off the tram at Disneyland over a year ago and without thinking I blurted out, "I'm so excited I wish I could run!" and he said, "Don't worry Mommy, I'll walk slowly with you." I understood then that maybe it didn't have to be the way I thought. But he was younger then. His life is evolving, he wants to do more things. He wants to move faster. He wants to be more involved. He wants to keep up with the other kids. Now it's, "Mommy, come on, hurry up!" I wish I could. I wish I could  give him that. I wish he could have that. But that's an emotional need that I have. I know that he doesn't need that. What he will need is to learn how to cope with my disease. How to adapt. How to accept that life won't always go the way he or we want it to. I try to remind myself of a quote that is always in the back of my parenting mind, "Don't try to prepare the road for your child, try to prepare your child for the road." I just wish there were another route for me to teach him about hardship in life.

I continue to hate that this is happening to me. I hate that my boys will sometimes have to suffer, on however small of a scale, on my behalf. I hate that I keep needing to make more room in the cemetery.

But I also can appreciate all of the flowers that are growing in between. New ones sprouting up all the time. They are beautiful and they belong to me too.

That time of year...

For the last few years, birthdays have been a bit tricky for me.  As I shared in my very first blog posting one year ago (yes, it's my blog's anniversary tomorrow), having a progressively debilitating disease can make any regularly-occuring marker of the passage of time anything but celebratory. What's there to celebrate about being one year closer to worse?

So with that in mind, six months ago I decided that my husband and I should plan to take a vacation alone, just the two of us without kids, on my actual birthday. I figured if I could just "escape" on that day,  I wouldn't have to dwell on the significance of the day itself and I could look forward to my birthday and the six months leading up to it with a very different kind of anticipation than before. Or at least that's what I told myself.

And here I am, the day before the big day and I am disappointed to find that although my little strategy did pay off for most of these six months, it doesn't seem to be working right now. The ineffectiveness of my coping mechanism (aka denial) became evident this past weekend when once again, I had to learn the same painful lesson I always do- there's no such thing as an "escape" when your  disease follows you everywhere you go.

We took our boys (one and five years old)) to San Diego to a beautiful resort hotel complete with pools, water slides, expansive grounds and a whole lot of barefoot walking. And though I loved seeing their sweet happy faces as they splashed in the water and their delight as they ran up and down the hotel hallways, I was painfully reminded that rather than vacation being a carefree time of relaxation and "getting away from it all," for me and my life with HIBM, vacation is more akin to going to war without my usual armor. Perhaps that sounds dramatic, but let me explain. These days I don't leave the house without my leg braces. I simply can't. They are how I function in the world. And I have figured out how to manage my surrounding environment enough to the point that I generally know what I'm up against and I have a routine to which I have ultimately adjusted.  But when I go somewhere new, I feel vulnerable and defenseless. It requires me to navigate new terrain and in the summertime especially, when the pool is the main activity, it means trying to walk barefoot.  It means having to confront all of my limitations and investing a lot of emotional energy in having to actively redirect my thoughts. All they seem to want to do in those moments is flash forward to the future with all of its unknowns and force me to be in touch with how much harder life will get- specifically activities that used to be so pleasurable and fun. Rather than feel at peace and in the moment on vacation, I find myself feeling anxious, frustrated and sad. Rather than leave my worries from my "real life" back at home, my reality becomes more magnified as I am in my head doing more processing than ever.

This past weekend, my mind produced what felt like  a running commentary. I looked at all the able-bodied people around me, strutting around the pool, oblivious to their every step- where their feet would land and whether or not it would be slippery and I felt angry and sad. But then I quickly made room for the gratitude I had for simply being in such a beautiful place, for being able to afford to take a vacation with my kids, for the slow and calculated steps I still could make. I would see all the moms scooping up their kids and carrying them into the pool, tossing their babies up and down while I stood there stuck, able to hold my 15 month old but unable to take a step with him in either direction until someone came to rescue us. But then I paused, held him tighter and reminded myself how blessed I am to even have children.

I had moments when I was acutely aware of how hard it is for me at this stage and I tried to imagine how I could possibly keep this up with my kids (who are still so young) and with a body that will be even less capable and independent and I am became overwhelmed by anxiety and a desire to just avoid experiences like this one. And then I remembered  that during the last vacation we took two years ago to Hawaii, I spent the first two days crying over all of my losses and I realized that this time, I didn't cry. I was better able to observe my thoughts and feelings without reacting to them. That was growth that came about only because of all of the sadness I have felt/allowed myself to feel on this journey. I know that the more I expose myself and the less I avoid,  the less the pain interferes with my ability to be engaged in and enjoy the present.

If this post reads as somewhat inconsistent and confusing, that's probably because it is. With every experience I have in my "new life" and body, there is a cascade of thoughts and feelings, which are often opposing each other. I am constantly mourning the losses while celebrating the gains. I am often wishing I could do all of the simple things I used to be able to do, while still feeling grateful that there are so many things I still can do. I am seeing the future and its potential devastation to my life and I am looking at all the the joy around me, right now in  my life. By no means have I mastered it. I will always be a work in progress. But one thing I do know and am finally starting to believe is that my disease is not the only process that is progressing and evolving. So am I. I am adjusting, I am evolving. And as I go along, I can only hope that I will  continue to adapt new coping mechanisms adequate enough to meet me wherever I end up.

So as I head to the airport tomorrow morning, I will try to remind myself that all of the anticipatory excitement I was feeling about this trip with Noah actually didn't revolve around me walking around the pool effortlessly or jogging on the beach or being able to wear flip flops. What I was really looking forward to was having uninterrupted alone time. Being able to sleep in without kids or an alarm waking us up. Being able to lie on a lounge chair beside him, read a book and officially celebrate our 9 years of marriage. Framing it that way- being in touch with that reality- makes me want to get off the computer and go pack.

So before I go, I just wanted to thank you for making my entrance into the blogosphere this past year feel so safe and for all of the support and compassion and words of encouragement. If you only knew how closely I've held it all to my heart and how I cherish being able to take it with me wherever I go.

Imagine

I am going to post something a little different tonight.

I have always said that one reason I am able to cope with HIBM in the way that I do, is because I am lucky to be surrounded by such a strong support network- family and friends who are there for me in any way I need them to be. 

Last week, I met with the rabbis at my preschool/temple to talk with them about how we can raise awareness and broaden people's understanding of what it's like to be disabled, from the preschool level on up. Just before that meeting, I was talking on the phone with one of my dearest, closest friends, Gabrielle, about what I/we would want to communicate to people about what it’s like for me and others in our community who are disabled. Ten minutes after we hung up, I received the following email from her, sharing with me what she imagined she would say to people if given the chance to talk about my disease. I can’t help but share it with a larger audience and after you read it, I think you'll understand why...

“I remember one early conversation Jen and I had about her disease.  I told her, “I will never be one of those people who tells you ‘I can’t imagine.’”

I don’t believe in that expression.  We teach our kids that they can imagine anything.  Imagining isn’t just for conjuring castles or superheroes.  We can imagine suffering too.  I think we do it all the time.  But somehow, “I can’t imagine” has become this thing people say when they hear about something hard and think, “I don’t know what to say.  I don’t want this person to think I’m so arrogant as to say I can imagine what it’s like to stand in her shoes.”  Although well-intentioned, I think “I can’t imagine” only adds to the loneliness of something painful.  In our unwillingness to risk imagining for fear of getting it wrong, that expression says, whoa, I can’t go there with you, I can’t even talk about it with you. 

So I tell Jen, I will try my best to imagine.  I want to understand this disease. I want to read as much as I can about it. I am grateful for the opportunity to read what other HIBM patients write or draw about their experiences.  I want to listen to Jen tell me as much as she wants to share about what it is like to live and parent with this disease, what it is like for her body and her mind, what the small moments feel like each day, what she panics about in the middle of the night.  I don’t need to preface my understanding with a cap on its possibility – I don’t need to tell her I can’t imagine because I’m able-bodied.  Or I can’t imagine for any other reason.  Because I love her.  So, yes, I can imagine how hard it is for Jen to struggle to pick up her baby or to walk up her two front steps.  I can imagine how scary it is for her to slowly lose her mobility. 

I wish we all spent more time imagining each other. Then maybe we would keep each other better company.  Maybe we would help each other a little more and a little quicker and with a little less effort or awkwardness.  Understanding takes effort and risk.  Sometimes Jen and I talk about how people are afraid to ask her about her disability and disease, but unafraid to stare at her or look away.  Of course, most of them are no doubt kind, caring people, who just worry, “what if I don’t say the right thing? What if I say something that makes it worse for her? What if by acknowledging her disability, I make her think about it?” I don’t worry about those questions.  I know that everything I say to Jen comes from a place of openhearted, pure intention.  I know that nothing I say has the power to make this disease any worse than it is.  I know that if I ask her a question, she will answer it honestly.  I know that if I say something that doesn’t match what she’s feeling, she will tell me and then I will take that learning into our next conversation.  I also know that magic words don’t exist, even though there are times I wish for them more than anything, because let me tell you, I would give them to Jen.

Jen knows that I follow her into her dark moments to keep her company, not to make them disappear.  Same way she follows me into my dark moments, trying to imagine with me about my life, with no cap on her ability to understand me.”