At 18 weeks an unborn baby is about the size of a bell pepper. 7 ounces. 5 1/2 inches. I only mention that to remind myself how short 18 weeks actually is. On one hand, it seems like forever. 3050 hours. On the other, it’s just a flash in time, a blink of the eye.
On one hand, it’s crazy how much has taken place. I still find myself getting lost in it all. Wondering how I survived? Why I survived? What if I hadn’t gone to the chiropractor? What if I hadn’t set an alarm for 7 am that Tuesday and had slept until 9 am? There is a very real chance I would have missed the two strokes that Tuesday morning, just as I had missed the previous dozen, and based on what every doctor has said, I wouldn’t have survived the next one.
I find myself wondering what my funeral would have looked like. What will it look like? Who would go? What songs would be played? Where would Domino and Graycie Mae have ended up? Would it have been painful?
These aren’t really thoughts a 35, now 36 year old should have. Nor are the bills or the medical chart. I shouldn’t constantly question before falling asleep if I am wearing the right boxers in case I’m once again not able to put on anything else before the EMTs arrive. Is my house halfway decent just in case? Does the house I’m moving into this weekend have ample access for an EMS truck or paramedics? Is this headache a stroke headache or a new headache? Coincidentally the stroke headaches now cause less of an internal alarm than the new ones. Yes, there is a difference. Yes, I can very quickly tell you exactly which it is. Yes, a stroke headache is less of a concern for me now and the new headaches are what raise an internal alarm.
I have tried to not mention “stroke” as much because I am sure my friends are tired of hearing about it, but I’m sure not 5 minutes goes by without something in my body causing my brain to scream STROKE. I’m not saying I think I’m having a stroke all of the time, actually the overwhelming majority of the time I now feel fine, however, very little time passes without some pain or noise in my head reminding me of it.
I was warned in the hospital that the majority of stroke survivors become depressed and at the time I couldn’t understand why. After all, I was going home, without a walker, in spite of the physical therapist suggestion I have one. Sure I was going to have meds and bills, but who cares, I’m alive. 18 weeks later, I get it, my mind doesn’t stop going over the what if’s in my head. I find myself consciously making decisions about random everyday things based on the fact that I could be a ticking timebomb and at any second my brain or heart could go rouge.
If you can’t already tell, I’m using this blog to vent a bit. It’s not at all dark clouds and rain drops. I am so much better than I was. I finally feel healthy a good majority of the time. This is not in the past yet for me though. As long as I am taking all of these meds, as long as I am still under doctors care, as long as I still have the prospect of invasive procedures, as long as I can’t just lay down at night without wondering “what if”, this won’t be in the past for me. It may be easier for me to not mention it all of the time, but it’s still at the front of my brain and on the tip of my tongue. I’m better at catching my balance quicker, finding words a bit faster, and knowing my limits, but just because others don’t see these things as easy, doesn’t mean I’m not still fighting like hell to not trip over my own feet sometimes, or find the next word that’s on the tip of my tongue but just won’t come out.
Next week I will attend my first Stroke Advisory Council meeting in Columbia, the DHEC council I was appointed to in January. My bio is full of boards and committees, but this is by far the most powerful council I have ever served on. The by-laws and mission statement are almost overwhelming. It’s something I’ve looked forward to since my appointment; being able to sit in a room, on a council no less, with doctors and medical professionals from across South Carolina, implementing policies and procedures for South Carolina hospitals on how best to deal with stroke patients, making decisions about granting hospitals stroke facility certifications, levying fines for hospitals that break the rules. I’m very excited to put my experience to good use and be in a position to vote on policies as an acute stroke survivor.
Next week I will also attend my first GHS Stroke Advancement Committee meeting. Then in May, which is Stroke Awareness Month, the South Carolina Hospital Association Journal will feature a story about my last 3050 hours but mostly focusing on the three weeks in November/December that changed my life.
The last four months have taught me a lot about myself. I’m not as easily broken as I thought and at the same time, I’m way more fragile than I ever imagined. I’m getting through it. I’m getting better. I’m still not there yet though — and that drives me crazy.