Many of you have wondered where I’ve been for the last several months. Well, forgive me for keeping you in suspense but I am finally in a place where I can talk about it … somewhat.
The short version is that on May 16, 2018, I experienced something similar to a stroke, only in my spine, following a very high-risk back surgery to stop the incessant, intense, horrifying, round-the-clock pain I kept having; Pain episodes so severe my friends were racing me to the ER in the middle of the night and praying that the docs in the ER could catch my pain somehow, and even they had a hard time getting me relief.
What started all this in the first place? several of you have asked. I’d struggled with this bad back thing for years and had had several surgeries before this one. I’d even had the max allowed number of spinal injections filled with steroids with only mild success.
But, apparently, my spinal canal was too small for me, as far back as birth. Then, unlike most folks who find that having 5 lumbar vertebras are enough, the good Lord thought he’d give me a spare, L6 vertebra – (only 10% of the population have this) adding, even more, crowding to the already narrowed space in which my spinal nerves lived. Now add my spinal cord to those extremely tight spaces and each time I would move a certain way all those nerves got smashed to pieces, jolting me with what I was certain must be similar to being jolted by a police Taser.
Of course, years of riding jumping horses, (and the falls that go with that), shoveling snow, falling on ice, roller skating and all the many things we do in life in my 62 years that weren’t helpful, all played a role as well.
I eventually learned that the spine has a way of being heard.
Oh and yes – one more small detail … I had been diagnosed with Parkinson’s disease in 2011 and had been dealing with all that goes along with that for years. (The tremors, weakness, balance issues, etc. etc.) I’d kept pretty quiet to most folks about that one. Knowing you have a disease that will only continue to get worse as time goes by isn’t something people want to hear about. Yet it had already taken much of my time and attention. Little did I know just how small a role my Parkinson’s would play in my grand scheme of things.
And so, the only remaining option was surgery, even though my odds were only 50/50 that it would fix me. We had no other options. No one could live with that kind of pain and have any quality of life. So we went ahead with the surgery. I tell you what, in these circumstances, I’m so grateful to have a doctor in the family helping me weigh all the possibilities because this was an especially tough one.
It was a very “big surgery”, they called it, as they expected it would be. It lasted many hours, there was trouble keeping my BP up, I lost a lot of blood. Spent the night in ICU. And then we waited for several days; waiting for the swelling to go down to see what the outcome might be. The good news was that the pain was gone!!! And has remained gone these last 4 months! What relief!! Definitely worth taking the risk for.
But when the dust finally settled and they quit poking me night and day to see what I could feel and what I couldn’t, their best answer was that I had had a spinal cord infarct – somewhat akin to what a stroke does to a brain. Many of my nerves seemed to be “sleeping,” they said… “justifiable after so many years of living in their very tight space. We’ll know more when the swelling goes down,” they said. “How long might that be?” I ask them. (I’m thinking when you break a leg you are fairly well healed in 6 or 8 weeks, right?”) but when it comes to nerves they can take a long, long time,” they replied. “Easily up to a year or more.”
Then, the WHY ME set in.
What did that mean for me? What did my world look like? Were they talking Permanent? Temporary? Was I going to be the lady in the wheelchair for the rest of my life? Was God punishing me for something (else?) Hadn’t he piled enough on me already? I was barely able to handle the Parkinson’.
Tears began to flow and they would flow for months.
I tried to understand all this info, while still loaded on pain meds. My world was spinning. I couldn’t always tell what was reality, and how much of my confusion was the drugs talking.
They were all so serious around me. I’d catch glimpses of the docs shaking their heads. No one could give me any answers as they were just as confused and surprised by this outcome as I was. The only thing that came through clearly on more than one occasion was that I would need to “learn to walk again.”
They just sort of threw the term out there as if it were nothing more than spending a few days day at the gym. No problem, she’ll be fine.
They obviously have never had to do it themselves.
I have come to learn that learning to walk is the hardest thing I have ever done in my life. I’m writing this at day 130 post-op and have spent all these days in OT/PT literally learning what Baby Steps means!
It was only after about 4 months of therapy that I became remotely strong enough to walk with a walker for the briefest of seconds. I’m still practicing, but am not nearly ready to walk solo yet, much less in public. Yet, my team of experts all continue to assure me that I will make it – I will walk again – and fairly soon. At this point, walking 5 minutes is still exhausting.
Of course, they don’t tell you that just because you learn to walk again, doesn’t mean that everything else just falls into place again automatically either. You have to focus all your attention on each step and balance.
You have to learn to navigate stairs again. You have to develop a huge amount of patience, cuz Honey, let me tell you, just because you walked for 30 minutes today doesn’t guarantee that your body will cooperate and let you walk 5 minutes tomorrow.
Then there’s learning how to get in and out of the car (as a passenger – not even a driver… driving is months out for me yet.)
Having a 3-month-old granddaughter to watch now, I see all the tiny baby step movements she’s learning and I appreciate her grimaces and groans she makes as she strains to meet the mark.
I suspect that before they let me go home, another couple of months or more will go by as I learn to be my strong, capable self again and can be safe in my own home.
So, in the meantime, I am living in an assisted living facility in Topeka, Kansas. It’s just down the road from the outpatient OT/PT facilities, where I go most days of the week. (In case you’re wondering why I left Denver after 35 years to move to Kansas, my daughter is an orthopedic surgeon here.)
I get around with my motorized wheelchair. I am yet unable to stand and support my own weight without holding on to something for dear life … a fine thing if you hate weighing yourself as I’d fall in a heap on the floor if I tried getting on a scale.
BUT – I’m getting stronger every day and have actually worked up to my rather clumsy “walking” (such as it is) 25 feet with a walker and with 2 therapists walking adjacent to me to make sure I stay upright. Of course, the steps don’t look too strong yet but they too are improving each day.
By the way, the official label that goes with my type of injury is “Incomplete Paraplegic,” meaning that the spinal cord was not completely severed, and as such, my possibilities of healing more fully, are likely. As opposed to someone who has a completely destroyed spinal cord, forever and ever, Amen. It also means that I still have normal bowel/bladder functioning…Thank you, God, for little favors!
I’m also grateful that I did not end up with so many even worse things usually common in stroke patients; paralysis on one or both sides, verbal dysfunction, cognition issues, bowel or bladder incontinence, seizures, and the list goes on.
In fact, if you ran across me sitting at a table, you’d think I looked just normal and you would likely wonder what all the fuss is about. It’s only when folks see me in my wheelchair that they look confused. “But you look just fine,” they say.
Hopefully, I’ll be kicking this wheel chair’s you-know-what for good very soon and then I may still have to explain why I walk so slowly and strangely, but at least I’ll be walking and I’ll have a good story to tell, won’t I?
Everyone keeps commenting on how far I ’ve come (in 4 months) and I’m so grateful to all the folks who kept videotaping my progress because it’s hard for me to see it… kind of like losing weight… when you don’t see someone for a while, you can see the differences much better.
Looking back I am astounded at how far I’ve come. I forgot that it took 2 people to care for me in the hospital and rehab.
I couldn’t dress myself or even just sit in a chair without falling over! Learning how to navigate the bathroom with a wheelchair has taken weeks to learn and to build the required muscles strong enough to shift my body to the toilet and back. (Remember, I still can’t hold my own weight up fully yet.)
While it’s amazing to see how far I’ve come, it’s still a bit frustrating as I recognize how much farther I still need to go. This is, and has been, my full-time job the last 4 months, and will continue to be so for some time and as before, no one can predict how long it will take or how long before I can go home – my ultimate destination… Sigh.
I have to admit that I’ve experienced many of the stages of grief: (According to Elisabeth Kublar Ross.) And could write a whole book just about my feelings going through each of those but instead, I’ll just encapsulate them like this …
I’m not paralyzed. They already said that once the swelling goes down I’ll be fine.)
(Shouting) “F – YOU God! What the hell did I do to have this happen to me”?
I can’t tell you just how devastating all this was and how many days I just didn’t want to fight yet another day – especially those days when all I could do was cry and I just couldn’t stop.
I begged God to fix me and I promised him I’d do anything he wanted. Guess he was looking for something else. Or maybe he had the big plan and I was seeing only a slice of the pie. Perhaps his plan was even better? Still awaiting answers on that one. All I know is that now, this far along, I’m healthy, I’m fit, I’m not crying all the time, and I have hope for the future.
Denial. Bargaining. Anger. Depression. But I confess to not reaching Acceptance yet. Although I think I’ve (mostly) quit being so angry with God. In fact, I’m considering the idea that God gave me all this as a gift – a new job for me to do. A new book about my journey and how I can write some new angle about loss and journeys we don’t want to take. It’s too soon to say yet. – the story hasn’t even ended yet, although while brainstorming with some of my friends who have been here for me, I have shared some of the ridiculous moments I experienced that had us rolling in the aisles. Kind of the old adage, “If you don’t laugh you’ll cry.” I cried a lot … not so much anymore. Just writing this lengthy story has given me back a sense of purpose again.
Lastly, (for those of you still reading this) …..I have so many of you to thank for helping me in so many ways during this unrequested journey. First and foremost to my daughter Dr. Shaun Steeby, who at 8 months pregnant was juggling caring for me with preparing for a baby, caring for her husband and step-son, and still performing surgeries, all at the same time. So glad she was rewarded for all her support with the coolest baby ever! (I became a Grammy throughout this too!)
Thanks to friends who came to Topeka to be with me. Nancy Stern and Ali Fisher were my angels! They were my cheerleaders as well as the comedians who kept me laughing when there were times that all I could do was cry.
To Debbie Gavaghan and Sarah MC, who lovingly cared for my dog Larkin for over 2 months until I got to a place that she could join me. She handled my disappearance pretty well, although she doesn’t let me out of her sight now!
My sister, Barb Walker sent me motivational cards weekly, with vouchers for massages from time to time. My incredible neighbors Rich, Candi, Debbie, Debra, Jodi, Becky, Leslie and Linda did everything from getting my dog to the groomer, to bringing me my favorite chocolate covered caramel apples, to visiting regularly, to watering my plants, to bringing my clothes from home. To Sheila and Tom who stopped by on their latest trip and brought care packages. To my new friends here at Atria where I am rehabbing, thanks to Pam, Bud and David for helping with Larkin, running errands for me, and just making the time less stressful.
Then there was Dustin, my good friend, and incredible masseuse, who worked on my horribly knotted legs each week when I could have easily become a concrete statue without his skills.
Of course, there were so many doctors, nurses, aides, techs, therapists, and bus drivers who got me to therapy n the wheelchair so many days. There were even people who prayed for me just because their friends asked them to. (Thanks Teri – your voices were heard.)
I know I’m forgetting some important people here. Please know that the drugs and the trauma of the situation itself have left me with some gaps. I apologize sincerely if you weren’t mentioned. I hope you will know how much I appreciate you all and look forward to connecting with you still as I continue on my journey of healing and getting my former abilities back. I know that Larkin can’t wait until we can get back to walking the 3 1/2 miles per day we were walking right up to the day before surgery. But I suspect she’ll take whatever she can get while I heal!