The Cost of My Needs

Near the end of her life my mother needed IV nutrition.  She lived as an ostomate for most of her life and scleroderma (a skin-hardening disease) contributed to her being unable to absorb nutrients in her last couple of years.  She was offended by the cost of the supplies – from the pump and medical supplies to the nutrients themselves, she didn’t believe taxpayers should have to pay such a steep bill to keep her alive.  When she told me this, I reminded her how much my infusing meds cost and asked her if that meant my meds should not be paid for too?  It’s often so much easier to apply these harsh guidelines to ourselves than to others we love.

But she raises a question that I am not above grappling with: my life, in financial terms, is supported by Social Security Disability, and Disability Retirement – from the public entities I served for years before getting sick.  However, I’ve now been disabled for almost as long as I worked – which I know means that I’m receiving more benefits by now than I paid.  The chemo agents alone, that keep my autoimmune diseases in check, cost more than $10,000 every round.  Before these meds was on a drug that cost $30,000 every month.  It’s extraordinary to try and think about how we as a society, justify these kinds of prices for medications, much less how to try and make sense of it ourselves as the patients.  It doesn’t feel good to think about the fact that we aren’t paying attention to mental health issues in this country, that we need to rewrite how we manage policing, and that education is so underfunded we’re falling behind other industrialized nations, meanwhile my meds last year more than $200,000.

Aside from the financial costs, I think about the cost my life, my health, my disability has on my loved ones.  As a sentient, empathic human, it is impossible for me not to consider this from time to time.  In this case I’m not even talking about the ways that I no longer give back, show up, participate, and engage the way I’d like, but something much more elusive and difficult to tease out.  What about all the times I’ve overheard my wife crying in the shower?  How do I calculate the toll it takes on those closest to me to have to prepare for my death (as they’ve been told to by my doctors) and then see me suffer and pull through?  Naturally, they’re glad I made it – but at what cost?  It takes a toll on me, on them, on the systems that are supporting us, and to deny that would be to turn away from something that IS.  How do we come to terms with these hardships?

I don’t have THE ANSWER, or a neat little bow to tie this all up with.  There isn’t any one way to right the balance sheet on these things.  However, the thing I’m clear about is that we can’t begin to make sense of it or even address the collective or cumulative toll it’s taking if we can’t talk about it.  So often we are encouraged to look “on the bright side,” “at the positives,” and we are a culture so afraid of grief we go out of our way to avoid it at all costs.  While my work is devoted to living a more joyful and vital life with chronic pain and illness – I don’t believe we get there by ignoring, avoiding, or bypassing the difficult.  Often, we get there by aiming right for the heart of the hard, looking it in the eye and walking straight at it. 

Our culture has conditioned us to be conflict avoidant.  As a manager in HR whose background is in Conflict Resolution, I saw everyday people who were making themselves miserable by dreading conflict.  They were agonizing over all the ways it would be too hard to have the hard discussion.  In almost every instance the dread, procrastination, and avoidance was much more protracted and painful than the actual conversation.  As individuals living with chronic pain and illness, we have already lost so much: time, friends, function, control, access – the list could go on and on.  What do we have to lose by initiating the discussion?  “Sweetie, I heard you crying in the shower, can you tell me why?”  “Friend, I’m so grief-stricken by the volatility of my illness, I don’t always know what to say or how to be present with you – what’s that been like for you?”  “So, I honestly thought I was going to die last year and most of me was okay with that… as a matter of fact, if I’m being honest, there are parts of me that are disappointed that I didn’t.  Can we talk about how that feels?”  These are just a few examples of what it sounds like to start a vulnerable, truthful, conversation about the real costs of this chronic life.

The only thing that is worse than carrying this grief is doing it alone.  I’m sad when I think of how many of us (and our loved ones) might be doing it alone.  If you haven’t let them in, or given them a chance to tell you how it’s been for you – what are you waiting for?  Sharing the burdens may not be the same thing as sharing the cost, but perhaps it’s the next best thing.