LIVING WITH HIBM

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

Wednesday, October 4, 2017

The In-Between

Let everything happen to you
Beauty and terror
Just keep going
No feeling is final

–Rainer Maria Rilke

I’ve had some hard moments in these last few weeks. I’ve had to navigate some unexpectedly tricky terrain on middle school tours while trying to keep up with the rest of the pack. I’ve had to face the fact that I can no longer walk across the grassy area where all the families with young kids traditionally congregate after high holiday services. I had to stand up in front of all the parents at my younger son’s class social to talk about my role as the fundraising rep while simultaneously realizing that I was having trouble simply standing. And then I had to ask a mom whom I barely know to link arms with me to help get me up 4 stairs.

Rewind to last month when sign-ups went out asking for  parent volunteers to chaperone the various 5th field trips for the year. As someone who loves an opportunity to get an in-vivo glimpse of my kids out in the world among their school peers, I always hope that some of the field trips will fall on Wednesdays and Fridays, the days I’m not in my office.

I saw on the list that there was a full day trip to the California Science Centeron Friday, October 20th. It’s one of my favorite LA kid places. I’ve been on field trips there before, but that was when they were in preschool, before I was even wearing leg braces.

When I received the email, I was in a good place. I knew my son would be thrilled if I joined, and so in a very rational and non-emotional way, I decided it would be a perfect opportunity for me to use my TravelScoot. I had just used it all weekend in Washington DC. It’s not my speedy bright yellow standup scooter, but rather my sit-down, slower- moving, below-eye level mobility scooter. I’ve never used it in my “real life” – as in, never in my day-to-day, get around LA life.  I cannot lift the scooter out of my trunk, but I figured I would just ask another adult to help me. I signed up and said I could seat five kids in my car.

Then a few days ago, it occurred to me that when I put my fully assembled scooter in my trunk, it takes up the whole back row. That leaves seats for only two kids. This awareness coincided with me being in a more raw and vulnerable place about where I’m at in my disease right now.

Each of my micro losses, or micro traumas, slowly chip away at whatever self protective defense mechanisms I have left in place. They form cracks in my resolve to keep showing up and participating. They make the path of avoidance appear so much more appealing than the one of exposure to the discomfort.

I emailed the teacher explaining that somebody else should probably drive because with my scooter in the car, I could only fit two. I felt relief. I had started to let myself think about what it would actually look like: me having to find the elevator when everyone else was taking the escalator, potentially having to field questions or comments from the kids in the 3 classes going, confronting the reality that I am the only physically disabled parent among all the able- bodied parents in our group (as far as I know).

And that’s when it started. That’s when I knew I had to start feeling and seeing the truths hiding behind all of those hard moments in the past few weeks. It is a sickening feeling. It is fear and panic. It is dread. It is knowing what is coming and knowing what is no longer. It is the loosening of the grip on what I so desperately wish could remain my reality. It is the excruciatingly painful part of the process that occurs right before I am about to make another adaptation. And it is always, always, exponentially harder than the time before, because that is the reality of living with a progressively debilitating disease. It doesn’t get better. It doesn’t stay the same. It only gets worse. It is the feeling that it will be impossible to adapt yet again. And knowing that it will have to be possible, because there is no other way. It is desperately not wanting to be here, where I am.  And then finding myself trapped, right here. It is knowing that it is been a long 11 years. And at the same time, it has only been 11 years.

The exceptions to the rule have now become the rules. The TravelScoot was to be used just for traveling. It was to be used when I had long distances to traverse or new terrain to navigate to make vacations easier. That’s how I tolerated the emotional discomfort that came with purchasing it. The story I told myself was that it would only be used on certain occasions, on my terms. But this disease doesn’t operate on my terms.

I have learned by now that I do most of my crying and grieving before the actual adaptation takes place. After I’ve used up most of my strength trying to hold on as tightly and as fiercely as I can to what I wish were the truth,  I use the last bit of strength I have to just let go.  I let go and float from the scary In-Between unknown to the sad but grounding known.

This particular In-Between is the one I’ve been dreading most of all.  It’s in between standing and sitting down.  It’s not happening all at once, of course, but here is the part where I begin to loosen my grip.  I begin to decide how to plan my first exposures to this new reality. The In-Between is this cruel, exhausting space and I know I’ll be spending some time in it.

Will the class field trip be the first time I decide that participation in my “real life” means sitting in my scooter and tolerating reactions (especially my own)? Yes, this is what I go through when I get an email sign-up sheet. It’s a lot.

As I move through the terror, I desperately hold onto what I’ve learned from the pain along the way, which is that yes, I will keep going and no feeling is final.

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

Neuromuscular Disease Foundation

About me