My Next Great Perhaps

(This blog post also appeared on the Spina Bifida Association of Kentucky’s website)

If you had tried to tell me growing up that disability and it’s effects on my physical health directly affected my mental health I more than likely wouldn’t have listened, in fact I probably would have rejected the possibility completely. Growing up, and being totally unaware of it happening, I somehow developed this idea that nothing was allowed to be wrong with my mental health. I couldn’t be depressed, and I couldn’t have anxiety. The reason  I thought this was because I was already physically disabled, and having other problems on top of that would just be too much to handle. In essence, I was already different enough, and I didn’t want to make it worse.

Thankfully, I survived my adolescence with no ill effects from this state of mind. Eventually I grew out of it. It was then that I realized my mental health need a little TLC.  By that time I was in college, learning more and more about executive dysfunction and the ways that my brain operates differently from other people’s.  I began to understand that executive dysfunction and other diagnoses like anxiety,and depression are often linked. I don’t think at this point I was self diagnosing, and I’m hesitant to say that I am now. It’s more that I know that I have had feelings and symptoms of anxiety and depression, and it’s easier to work within those terms when talking about my experience.

On my own, and through talking to people with similar experiences, I tried to better understand my behaviors, the things that trigger stress and anxiety for me, and how to work within that knowledge. It helped, to an extent. Again, it got me through, and after five years I graduated college and shortly thereafter got married.

I have been navigating the married life, and being an actual adult for about four years. I’d like to say my mental health journey has been a smooth learning experience and that I’m currently in a really great place. But I also don’t want to lie. I’ve learned the lesson of my physical health informing my mental health more in the last few years than my childhood years combined.

At the end of the summer of 2016, I developed what would become my second worst pressure wound to date. It required bi-weekly doctor’s appointments, multiple rounds of antibiotics ,and eventually saw me hospitalized with two separate infections and put on IV antibiotics. All of this was happening as I transitioned jobs and learned the ins and outs of a position that was completely new to me.

While I was on the IV meds I couldn’t continue to work, and was let go from my job. By the end of the six week course I had developed a small blood clot on the picc line. I also experienced my first shunt malfunction in over a decade the week before Christmas. After my shunt was repaired, and being done with the IV meds, I went home without the picc line to heal.

I think it was around this time that I really started to feel the weight of everything I’d been going through. I hadn’t had this many serious health issues happen so close together, that I could remember, and I hadn’t had anything major happen in years, outside of other wounds.  Now I had time to really take in everything, and it left me almost physically winded.

But on the positive side, I was healing, and that summer my husband and I, with much assisstance from our families, started the process of moving back to my hometown, which didn’t give me a whole lot of time to mull things over.  I was stressed out. I was tired, and I knew I wasn’t taking the time to process.  I tried to manage ,and by the end of July we were moved in to our new place. I had also finally gotten government assistance dealt with after months of trying.  By my birthday in September I was even discharged from care for my pressure wound.

Despite my clean physical bill of health though I struggled. My sleep was disordered. I wasn’t eating well,and as far as socializing I became a hermit.
I kept wanting to say I didn’t understand why this was happening. But I did. Everything had piled up to the point that depression and anxiety came back with a vengeance. I wasn’t dealing with anything that I needed to, chores, relationships, none of it.  I wasn’t at the point where I could easily talk about it with anyone, especially family. And I didn’t think I needed professional help. I wasn’t bad enough, not yet.

I should stop here, because I need to take something I said back. I’ve been speaking in the past tense. I said I had struggled. That’s not true. I struggle, present tense, and I  probably will for a while yet.  I’m also making slow progress. Probably not noticeable to anyone else, but it’s there. I can tell the good days are starting to last longer and the bad days aren’t as bad.

I haven’t gotten professional help yet, but I’m becoming more open to the idea. I’m realizing that this is bigger than me and needs just as much consideration as any other health issues I’ve had. For now though I’m practicing self care and trying to reach out to people when I can. I’m trying to do some things that I need to do, and some that I want to do. It might only be a start, but some days that feels like enough.

I found a quote a while ago that I  think fits my mindset about my mental health pretty well, “I go to seek a great perhaps.” These were the last words of poet François Rabelais. He was talking about the afterlife, but when I think of that quote I think of the next good thing that’s going to happen, the next thing that will make me smile or laugh, the next thing that will make me feel alive. So every day I go to seek my next great perhaps.


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