A Little Then
I’m lying in a hospital bed; it’s never quiet here during the daytime. I’m lying very still, partly because I’m too tired to move and partly because when I’m perfectly immobile I feel like I might be fine. Even though I’m lying prone, it’s like I could possibly get up and walk out of here. Like maybe I’m just visiting a patient.
Instead now I’m assessing myself. I could not get up and walk out. Or walk at all. I’ve been semi-sternly warned by several nurses that I am not to try to get up unassisted.
If I have to use the facilities I must push a red button. If I can find it that is, it tends to slip down the side of the bed. Right now I have no idea where it is.
This reminds me that because I’ve no visual on it, I have no actual idea where my left arm is either and that sends ripples of panic through me. I have to reach my right hand over to my left side to try to physically pull my arm back up.
It’s scary and my mind does that thing that it has done for years as a mom-mind; where I immediately imagine the worst case scenario in brilliant full-color detail –
My arm has been sucked into the gears of the hospital bed. Blood is pooling underneath. At any moment someone will walk in and start screaming and pointing. They’ll look at me incredulously, wondering why I’m just lying there.
To my relief it is still intact. Now I look at it as if it is foreign. As if I’m suspicious that it’s no longer my arm. It’s a very curious feeling. I’ve never experienced anything like it.
Next I start to wonder how bad my hair looks. I’ve no clue as I haven’t seen a mirror yet today…or yesterday come to think of it. Truthfully I don’t know if I want to see myself. I have a hair appointment scheduled for next week. I suppose that won’t be happening.
I’m waiting for my husband to return from the cafeteria-style dining hall. I had to urge him to go eat. He’s been reluctant to leave my side unless someone is visiting. But he needs a real meal.
My lunch will be delivered at any moment. I’m not looking forward to it, and not for the usual reasons – not because it’s hospital food. Yesterday Nurse Susan asked me about my gag reflex. I told her that I have a very strong one; I gag just holding a pen in my mouth. So she tested mine.
I had zero gag reflex.
I now have to drink thickened liquids. And yes, they’re as disgusting as they sound. Thickened water? No thank you. I chose apple juice so that I can pretend it’s apple sauce. Which it clearly is not. Not even close…
A Little Now
It’s 5:30 am. I’m lying in my bed at home. My husband just went to run on the treadmill, because along with the cold temps we also got our first few inches of snow overnight. It’s late to get the first snowfall in February.
Yesterday it was the two year anniversary of the night I had a stroke/aneurysm (a hemorrhagic stroke). It wasn’t exactly intentional, but we spent this anniversary in a hotel. Maybe it was a subconscious choice. I’m not certain.
It wasn’t a conscious choice though, I just happened to have a free night in a hotel from hotels.com (“tenth night free”) and with February sixteenth being President’s Day this year it was the perfect time to take a trip to IKEA. Win-win.
I did end up sleeping most of the night though, which is what I’d been most worried about. The thought of tossing and turning all night while my imagination went to dark places was the downside that had been looming all weekend.
So yesterday we celebrated by going to IKEA, one of my Happy Places; to look around, get Swedish meatballs and reminisce about our trip to Stockholm last year. It was quite perfect.
Today, two years later, I will soon get up, dress and we’ll go let out and feed the dogs. Then I will make my husband breakfast and drink coffee while finishing up a crossword puzzle with him. He’ll work from home and I’ll be at my desk nearby writing. It will certainly be a very different day than it was back in 2013 in the hospital.
What I’ve Lost
The night of my “medical event”, as I read another patient refer to his as, I surmised that I was having a stroke because I couldn’t move the limbs on my left side only. I had no past experience with stroke, but that symptom had been stored away in my mind and it was my first conclusion. Mind you I couldn’t imagine that I was actually having one.
That being said, I’d surmised correctly. It just wasn’t the same as the only stroke I’d ever read about. That would turn out to be an ischemic stroke caused by a blood clot. I did not have a blood clot; I had a rupture in a vein, an aneurysm, causing bleeding in my brain.
Scary? Very.
I was completely paralyzed on my left side. Something I didn’t ever think about before was what numbness would feel like. The paralysis wasn’t permanent, but to some degree the numbness on my left side has not completely gone away anywhere from the top of my head to the tip of my toes.
It is most noticeable on my face and hand. And by that I mean it is most annoying in those two places, especially my face. The nerves have been affected, but that is so misleading to me. It sounds like the outer skin of my left side has been affected when it’s actually the signals from my brain that have been impaired. As if they’ve short circuited.
One single stray strand of hair lying across my face will send me into paroxysms of agitation. The nerves will have misread the “feeling” or sensation, and it’s all I can do to relieve myself of the agitation. It sounds, and seems, completely irrational.
And so my left arm has the most extensive deficits. Beside general lack of fine motor skills in my hand my range of motion is certainly decreased. I’ve written before about not being able to use fingernail clippers with my left hand to cut the nails on my right hand, but also it’s very difficult and awkward to pay at a drive-through window, or to use a drive-thru ATM.
Anyone who has damaged their rotator cuff can attest to the difficulties it presents to getting dressed, especially putting on a bra! Everything, every motion of dressing has been significantly slowed down. As has shampooing my hair and toweling off. Getting ready takes me so much longer now. “Hair dressing” has taken a major turn for the worse.
The cold weather mightily affects the aforementioned tone in my face, hand, arm, leg and foot. It causes me to tighten up more and more the longer I’m in it. It can be quite painful. If I really get to a shivering stage I may not be able to stop for some time after I’m away from the chilled air. It’s exhausting and uncomfortable. It troubles me regarding where I’ll be able to reside in the future. Winter is so much harder for me to face now.
And frankly my bed is no longer the comfy haven it once was. I don’t sleep comfortably as I am now a back sleeper, after forty years of side sleeping. At first I used a twelve inch wedge pillow, and then I went down to a seven inch wedge. Now I make an inverted V with two memory foam pillows, and then place a third contoured one on top. Bed is weird. Sleeping is awkward.
Life is inextricably altered.
What I’ve Gained
That all being said, it’s not just about loss; I’ve had to focus on new things. Things that I’m sure I might not have had to otherwise, naturally.
But as I’ve learned to deal with the tone in my hand (a condition where the muscles tense up…you’ve probably seen someone with curled up limbs; hands and arms usually, but also feet?) it has compelled me to accept much more help from others, especially from my husband.
Now we often cook together, before this it was almost always a solo effort on my part. Now I need his help, his extra hands. It’s been between not having much choice and his convincing me that he enjoys it…that contrary to my long-held beliefs he does not feel like it’s my job to do all the cooking and cleaning, that’s made me not only able, but willing to ask. Huh. It’s been really fun.
I’ve had to ease up on my “control freak” ways. I’ve had to loosen the reins, so to speak. My son does almost every bit of his own laundry now. It’s good for him, and I don’t really mind crossing that task off my list as laundry has become even more laborious, and tiring.
Because my energy has been taking seemingly forever to return I’ve had to pick and choose what I can manage to do each day. This has forced me to slow down and also to prioritize what is important, and not take on more than I can handle (most of the time). It’s kind of liberating.
I want to celebrate life even more than ever now. I don’t care what anyone thinks of that. I still get down in the dumps some days. I still get affected by external and internal events, but we only get one life and I want to enjoy as much of it as I can. And I want the same for the environment around me.
I now know that major medical crises can break relationships. It happens all the time. I don’t want to become a statistic. My aim is to strengthen my relationships, especially the one with my husband. So far so good, and for that I am over-the-moon grateful. It’s a definite gain…
Have I completely embraced the new me…no I have not. Am I working on myself still…you bet I am. Do I choose to be happy? Yes.
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I am determined to be cheerful and happy in whatever situation I may find myself. For I have learned that the greater part of our misery or unhappiness is determined not by our circumstance but by our disposition.
— Martha Washington
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Raina K Morton February 17 2015
*Title from the apropos song “Can’t Control The Wind” written by Bill Anderson, Roger Pirtle & Pat Lovely and sung by Ricky Skaggs
**I’m more a fan of Ricky Skaggs’ blue grass music, but these words are quite personal to me 🙂
***This is my Two Year Post Stroke Update…if you still have any questions, please ask! Thanks for reading….
Raina,
I felt compelled to send you a quick note to express my admiration for your strength of spirit and heartbreaking honesty when writing about your “medical event” and subsequent rehabilitation. It is sometimes the most difficult thing to do…allowing our own personal thoughts and fears to be committed to paper (sometimes that reality can be shocking even to ourselves) but for you to share these glimpses into your internal dialogue with the world is downright inspiring and beautiful. I wish you continued good health and look forward to future blog entries.
Thank you
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Thank You so much for this comment Julie! It means so much to me. Just thank you
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