No, not those crutches. The bones I have broken are all arm/hand related, so I have never had to use those kinds of crutches. I’m talking about psychological crutches. You know – the tools we think will make our goals, chores, or treatment tasks easier, but ultimately end up expensive corner-cutting measures that only interfere with the sustainability and progress toward the goal.

Most crutches are harmless. I used an auto injector to give insulin shots for a long time because I was too much of a weenie to press the plunger myself. And many people (ahem, you know who you are) take more vitamin supplements than they need because they think it helps them stay healthy.

But there is a point at which some of those crutches cross a line and actually start causing harm.

By now, many of us are familiar with Simone Biles’ withdrawal from most of her Olympic events due to her mental health. It feels like we have come full circle with her coming back to win bronze in beam. She said that winning that medal meant more to her than all her previous golds because of what she had to overcome to win it. I believe it.

It was interesting to watch the coverage. Immediately, the media onslaught commenced, but different from years past, there was much more lauding her for her bravery than condemnation for perceived weakness. But to me, it didn’t quite ring true. It felt scripted, like the networks and media outlets had all called meetings and laid out in no uncertain terms how commentators and reporters were to handle it. And most everyone did end up saying the “right thing”. But a change in outlook regarding a topic as sensitive and stigmatized as mental health isn’t so easy to change, especially in sports, and especially especially in American sports, where anything but a #1 spot isn’t really a reason to celebrate. I’m not saying that the public shift isn’t great. It is. It’s a huge step in the right direction. But if you are paying attention, you can still feel the unspoken judgment.

They gave it away with one little word: just. Awful, insidious adverb (at least in this context). Almost as bad as “should”.

Well, 13, actually. Shortly after I started my hiatus, I got my thirteenth diagnosis – plantar fasciitis, a painful inflammation of the ligament that connects your heel to your toes. I’m not sure it’s chronic. It might just be recurring. But it stems in part from a large bone spur, so unless I have surgery, it is likely to return. (The other parts are pronation and flat feet, which got a lot worse during the pandemic because I wore shoes a lot less.)

I had already self-diagnosed by the time I went to the doctor. When I got back to exercising in February, I started having pain in a very localized, half-inch area on the inside of my heel. I ignored it until it became more than a nuisance. Then I called for an appointment to confirm what I suspected and start a proper course of treatment. It was not lost on me that after being paralyzed and dealing with severe peripheral neuropathy (diabetic nerve pain) when I was 20, this was the third hit to my mobility.

** A brief note that this will be the last blog post for a few weeks. The PAC team is taking a well-deserved break and will be back the week starting July 19 rested, refreshed, and ready to go! See you soon**

Alzheimer’s Disease, one of the most common of over 400 types of dementia, terrifies me. I have dementia on both sides of my family, and though the majority of types of dementia are not hereditary, my emotions can’t seem to accept that.

I am not alone. In a 2016 survey out of the UK, over half of the participants who suspected they had dementia put off going for a diagnosis. Over 60% said they thought a dementia diagnosis effectively would mean the end of their lives. I don’t blame them. I can’t let myself think knowing my mental capacity was slowly but inexorably declining while my physical self remained healthy without triggering a panic attack. When I had to designate my preferences should I be mentally, but not physically, incapacitated, I cried through the whole section. It was traumatic.

I am a planner. I check menus before going to restaurants. I investigate parking options for every new place before I go. I need to know what to expect and what to bring to accommodate my condition. I’m not pathological about it – new technology and medication affords me a measure of flexibility -- but I was medically raised in an environment where rigid routine was the healthiest path. Which I didn’t follow, of course, but the lessons were learned.

It’s a natural state of mind for chronic and autoimmune patients. There is such a high level of uncertainty to many of our conditions that planning is a way to help us wrest a little bit of control back from conditions that afford us very little.

I know how this is going to make me sound, but I have a confession to make. The gratitude movement drives me nuts. For years, we have been told that taking time to list the things we are grateful for will do wonders for our mental health. Um, what?

Make no mistake. I am grateful for a lot of things. Mostly people, actually. But that’s already part of my psyche. I express it when appropriate, but realigning my life to display an “attitude of gratitude” feels fake and insincere. For two reasons.

Something’s been bothering me, something I had forgotten.

A few weeks ago, my friend was diagnosed with Type 2 diabetes. I was sorry to hear it, but it ran in her family and she said she was on solid ground and that her family was supporting her, so I figured that she had the help she needed. I made sure she knew she could call and ask questions whenever and then I let it be.

Cycle forward about a month. I called to check on her, and it turned out that she didn’t have the help she needed. And by help, I mean information. And by information, I mean fundamentals.

In the last few years, I have met some amazing, dedicated people who work hard to make patients’ lives easier. Many of them came to their callings through terrible circumstances, either health issues that struck them personally or even more often, harrowing health issues that happened to a loved one – a parent, a child, a friend, and sometimes a combination of self and loved one(s). They talk and write and demonstrate, hoping to strike a chord with decision-makers and bring a change to an industry that makes more lives harder than it makes easier. (Survival does not count as “easier”.)

I wasn’t one of those people. Until I was.

I didn’t know I was self-advocating when I did it.

I just knew that I was right and they were wrong.

I was on a panel recently about becoming an influencer, and I remembered something that was probably my very first act of self-advocacy. This little act of defiance and protection took place when I was seven, so if there was one before that, I’m kinda glad I don’t remember.

If I was seven, it must be meningitis.

Lately, I have been discovering that I have a few soapboxes. I’m not sure they are hills I would die on, but they are things I feel strongly about.

One I would love to make my profession is having a patient in the room when public policy is being made. Ideally, I would be that patient, but any one of us could contribute. Now, there are a lot of different kinds of policy, some originating in the private sector like value-based care models and patient quality and safety standards. Then there is the public policy from states’ insurance regulation to Executive Branch agency policy to legislative branch bills that end up as laws and code. Who better to help craft those policies than the ones who will benefit from good ones and suffer from bad ones?

*Steps onto soapbox.*